History

Journal History

Friday, December 28, 2007 11:16 PM CST

Happy Birthday to me! I am the big 36 years old today! I had a very nice day. I spent some Christmas gift cards this morning while the nurse was here. It's always fun getting in on the after Christmas deals. Once Dave got home from work, we headed off the Pizza Doctors, my favorite pizza place, and then to the movie. We saw Alvin and the Chipmunks. That is such a CUTE movie! The boys loved it.

It's been so nice having some time off from school and routine. The boys finally got dressed today, only because they knew we were leaving the house. Otherwise, jammie pants have been a staple around here. I have been busy painting Jacob's room electric lime!!! Actually, the top is lime and the bottom is blue. Kinda reminds me of the leap frog colors! His whole room screams WOW! It's pretty cool! I just have to put up the froggie border and the rest of the things on the walls, and I am done. The painters are coming next week to paint the bathroom and dining room. I can't wait to have it all done.

I found out this week that Jacob will see the plastic surgeon on the 10th to discuss his part of the surgery. We will also see the neurologist since his seizures are getting worse in the morning.

Hope everyone has a great weekend!

Love, Karla

Tuesday, December 25, 2007 2:26 PM CST

Merry Christmas everyone! We have had a wonderful Christmas so far. We went to church yesterday afternoon and came home for supper. Of course, we couldn't eat fast enough for the boys because they new presents were next! Everyone enjoyed their gifts and played for a while until I sent them off to bed with the instructions, 1. DO NOT wake up at the butt crack of dawn and 2. DO NOT open gifts until I wake up. Both rules were followed with a little exception to rule #1. They were up at 6:30 and I said they had to wait until 7:00. Presents were a big hit again. I think they were thrilled with what they got.

Jacob is still not able to open gifts on his own, but enjoys the sound of the ripping paper so much he just giggles. I think we are pretty covered in the frog department! Right in the middle of opening gifts, Jacob fell asleep. He was OUT! Again, this morning while watching his new movie, he fell asleep. Too much activity I guess!

We are counting down the days until Jacob's surgery. I ask that you all keep him in your daily prayers for health leading up to surgery day and for a safe, successful procedure without any complications.

Once again,

Love Karla

Friday, December 21, 2007 11:45 PM CST

Hello everyone! Not a whole lot of wise things to say tonight, but want to do an update nonetheless. The kids are officially on Christmas break now and definitely looking forward to being home. Everyone is ready for Christmas. Devin especially has been very curious what he is getting this year since he knows about "SANTA" this year. And yes he does the quotation marks with his fingers when he says it. LOL

Our biggest news is that the bathroom is done! Well ALMOST done. The handicap bars will be placed in the shower tomorrow, and the painters will be here either the 28th or 31st. Jacob's doorway was also widened, so there is just some touch ups needed on that, plus a cupboard hung up in his room. We are L-O-V-I-N-G the sink in his bedroom. All you special needs moms out there, you've gotta get one! It saves so much running back and forth to the bathroom, especially for the morning and nighttime routines.

There was an assembly today at school. Jacob's aide and Kindergarten teacher and Devin's teacher played in the band. I tell ya, it's so fun seeing the staff participate like that. We are enjoying the school so much and could not be happier with the decision to switch Jacob to Kindergarten this year. Devin has adjusted like he always went there. It's wonderful. Plus, Devin is also getting a chance to see Jacob different times during the day and is getting to know the other special needs kids in Jacob's room. He is very amused by all the antics the kids do and just loves them the way they are...just like he does Jacob. It's wonderful.

It's been so neat watching Michael grow up this year too. He really enjoys high school and meeting new people. He's a little shy at times, but I think he is doing well. I think it also helps that he is in band and can meet other people outside the freshman class. He has played at two basketball games within the last week, which he really enjoys. They had a talent show at school today which was hilarious I guess.

We are going to finish up with preparations for Christmas tomorrow....I thought I'd better plan a meal at least. Then we are set to relax and enjoy the holiday. It doesn't seem possible that it is Christmas already though. Maybe I am just getting old.

Hope everyone has a wonderful weekend! It was so nice to hear from a few of you that haven't been to his website before.

Much love,
Karla

Sunday, December 16, 2007 9:57 PM CST

:::::DRUMROLL PLEASE:::::

Jacob made it a whole 5, yes 5, days to school this past week!!! Call that a miracle! It is the first time since starting Kindergarten that he has made it a full week. The goofy thing is, he rarely missed school in preschool. I think he just wants to skip school now that he is a big boy. LOL

Monday night, Nancy Smith from Wisconsin DeafBlind came to Holmen for some visits, so three of us families got together for pizza and a wonderful night of visiting. Tuesday, Nancy was able to see Jacob in the classroom and then sat down with Chris, his special ed teacher, and I to give us some good ideas to use with Jacob. I am always so impressed with vision people....they have such neat ideas. Nancy definitely feels he is using his vision. She also feels like there is so much there to work with. Jacob's teacher and aide are adapting the morning message, calendar and weather to a smaller board right in front of him so he can see it and maybe get something out of it instead of just listening. We are also hoping to work toward Jacob counting to 10 using some adaptive technology. Wouldn't that be awesome?

Friday was Grandparents' Day in Jacob's classroom. Grandma Lorraine, Grandpa and Grandma B were all able to be there. They decorated a Gingerbread House together.

Saturday and Sunday were busy days at church with helping give out presents and food baskets, the Sunday School program, and the Christmas Cantata. Sunday, I also took the boys to Jacob's teacher's birthday party. She had it at a Karate studio. The boys thought it was so much fun!!!

We are all looking forward to Christmas next week. Devin can hardly wait to open his presents! I am not sure what Jacob will think. He is getting so hard to buy for.

Well, it looks like we have a date for Jacob's surgery....January 11th. We need to have pre-op appts on the 10th and then surgery the next day. We were told to expect a 7-10 day stay. Jacob will also need to be out of school for 2 weeks after getting home or until he is feeling better. 3-6 months after the surgery, he will have a repeat VCUG and then we will discuss the bladder/ureter surgery.

I actually added pictures on his photo page :)

I hope everyone had a great weekend. May you have a blessed week getting ready to celebrate the birth of our Savior.

Love, Karla

Monday, December 10, 2007 4:41 PM CST

Hello everyone! Jacob was discharged Saturday afternoon on oral antibiotics. He is doing better today. He is finally able to cough more and although he is still pretty sleepy at times, he is back to his smiley self again. And loud! You always know he isn't feeling good when

A.) the smile goes away
B.) the motor mouth goes away

The good news is his shunt looked perfect. There were no changes in the brain scan to alert anyone, which is great. No progression of brain damage is important.

I did talk to a neurosurgeon on Friday who said he didn't feel the detethering was necessary. However, after talking with people who know him better and getting a better understanding of the WHYs behind it, we are going to go forward and schedule the surgery. 3-6 months after surgery, another VCUG and urodynamic study will be done and a decision will be made at that time whether urology surgery will be necessary. Because of the tests done in the hospital showed enough details to help in this decision, Jacob will not need to have a VCUG done tomorrow or a visit with the urologist, so we won't have to make another trip! YEAH!

Jacob and his friends were so excited he was back in school today. I am just so impressed, and you will probably hear this a hundred times from me, with the kids in Jacob's class, his teachers, and his aide on how wonderful they have been with him. I have always wanted him to belong....I think that truly has been one of my main concerns. I want Jacob to enjoy life and have friends, people who love him, just like any parent does. I am so happy.

We have started our yearly tradition of doing activities every night until Christmas. The kids are enjoying it as always. I started something different this year. I bought some movies the day after Thanksgiving and wrapped them, so that each Friday until Christmas, we can have a movie night. One of the boys opens it and the other choses what's for supper. It's been fun.

Hope everyone is having a great week. I will put up those pictures on the photo page that I promised to do last week before chaos hit.

Love, Karla

Monday, December 10, 2007 4:41 PM CST

Hello everyone! Jacob was discharged Saturday afternoon on oral antibiotics. He is doing better today. He is finally able to cough more and although he is still pretty sleepy at times, he is back to his smiley self again. And loud! You always know he isn't feeling good when

A.)the smile goes away
B.)the motor mouth goes away

The good news is his shunt looked perfect. There were no changes in the brain scan to alert anyone, which is great. No progression of brain damage is important.

I did talk to a neurosurgeon on Friday who said he didn't feel the detethering was necessary. However, after talking with people who know him better and getting a better understanding of the WHYs behind it, we are going to go forward and schedule the surgery. 3-6 months after surgery, another VCUG and urodynamic study will be done and a decision will be made at that time whether urology surgery will be necessary. Because of the tests done in the hospital showed enough details to help in this decision, Jacob will not need to have a VCUG done tomorrow or a visit with the urologist, so we won't have to make another trip! YEAH!

Jacob and his friends were so excited he was back in school today. I am just so impressed, and you will probably hear this a hundred times from me, with the kids in Jacob's class, his teachers, and his aide on how wonderful they have been with him. I have always wanted him to belong....I think that truly has been one of my main concerns. I want Jacob to enjoy life and have friends, people who love him, just like any parent does. I am so happy.

We have started our yearly tradition of doing activities every night until Christmas. The kids are enjoying it as always. I started something different this year. I bought some movies the day after Thanksgiving and wrapped them, so that each Friday until Christmas, we can have a movie night. One of the boys opens it and the other choses what's for supper. It's been fun.

Hope everyone is having a great week. I will put up those pictures on the photo page that I promised to do last week before chaos hit.

Love, Karla

Friday, December 7, 2007 4:22 PM CST

Hello everyone from St Mary's in Rochester. Jacob was sick yesterday afternoon and running a fever, so the school called to have me pick him up. I called and asked our nurse Deb what to do, considering the fact he has been on antibiotics for a UTI, And also since it was starting to snow AGAIN, I thought I'd better do something quick. So off to the ER we went. We got here at 4:00, after seeing some cars in the ditch, and didn't get into our room until after midnight. They did a urinalysis, gram stain, and cultures (both urine and blood,) started an IV with antibiotics, and sent us for an ultrasound, then CT, then X-ray. The kidneys and bladder looked fine, which we thought were the cause of the problems, but instead, he has pneumonia. His right lung had fluid in the middle and lower lobe. Dave and Michael have a bad cough now, so that might be part of the problem, but up until now today he had only coughed twice, so imagine my surprise when they said it was pneumonia.

Jacob also seems to be in a lot of pain, so we are trying to figure out what it is coming from. He went down a little while ago for a head CT to check his shunt, just in case.

Devin is with me. Since I was picking Jacob up from school, he just went with. Dave and Michael are coming up tonight to spend the night. It is nice to still be a family regardless of where we are!

The nurse just came in and said they are going to start blow by oxygen on him. He is not satting very good right now. Between that and high heart rates, we are staying at least until tomorrow.

We were excited to be able to see our chaplain Warren today. Just seeing his face is such a comfort to me. He was paged 3 times while he was here, but kept coming back in so he could visit a little more. Our nurse Deb came today too and brought us some lunch. We have such good people taking care of us!

Neurosurgery did get back to us regarding surgery. Jacob will have surgery on January 11th if not sooner. I wanted to have surgery now so he could do some of his recovery over Christmas break, without missing so much school. Not sure how it will all play out now.

Hope everyone is having a great week. Please keep Jacob in your thoughts and prayers for a quick recovery.

Love, Karla

Wednesday, December 5, 2007 9:09 PM CST

I have thought a lot about selflessness lately. In fact, a situation came up which happened to be a perfect time to teach the boys about this concept....loving someone selflessly means it's not about you, but what the other person needs. I remember being told at the time of Jacob's diagnosis, he'd require 24 hour care which would in turn become a burden on our whole family. This statement wasn't completely false. He does require 24 hour care, but his care is a far cry from a burden on our family. Honestly, there are days where it becomes overwhelming, and I really don't want to spend hours getting him ready, feeding, changing, cathing, putting him to bed. This is where the selflessness comes in. It's not about me.

From the very moment we were told of Jacob's diagnosis and in the many discussions which followed regarding "what to do" and making sure we "knew what we were in for," I always thought, this isn't about ME. It's about what is best for JACOB. And if that means I have to do many things which may be time consuming, not a whole lot of fun, scary, and even down right gross, then I will do it.

You see, there are many rewards in it too. A special Jacob kiss, a one-armed hug or a hand placed ever so gently on my face, a laugh or a giggle, sometimes at the most opportune moments, and a love so pure between a mama and her son. It's more than worth it.

Selflessness doesn't just stop there though. I see it in the way the boys help out with Jacob. How everytime he gets in the van, they help lock his wheelchair in place. The way they never complain about the hundreds of trips to Rochester and even enjoy when they get to come with. I see it in the way they interact with him, love to spend time with him, and change schools because "it will help Jakey to see me at school every day, Mom."

I see it in the way the nurses and doctors do what's best for Jacob, not because it is their job, but because they truly care.

I see it in the way his teachers and aides so lovingly let him experience kid stuff, Kindergarten kid stuff.....crayons and scissors, glue and paint, lunchtime and recess, dancing in gym class, singing songs and counting. I see it in the phone calls I get from his teachers letting me know when she will be gone and making sure Jacob will be okay in her absence or calling with excitement to share how he picked up and moved his legs while standing in his Pony....

I see it in the way the kids all smile and look at Jacob when they are counting because they know it makes him smile, the kids who sit next to him each day and hold his hand or ask him if he can come to their birthday party. I see it in the pictures colored for Jacob and sent home in his backpack and the excitement in knowing Jacob is in school today.

The snow has been falling here in Wisconsin. Lots of it actually. I am sure some of you may have heard some cursing and wondered who was making such a racket about the snow...well it was me. Let me just tell you that I would get more enjoyment from pulling out each of my toenails than attempting to push a wheelchair through snow. Our ever so kind neighbor came over today and plowed out our driveway. I am thinking he is sick of hearing me yell. Maybe the other yahoo across the street will get a clue one day when he is busy plowing his driveway and the street in FRONT of our house that maybe, just maybe he could offer to do ours too. Nah....I think that would be too easy. I guess he hasn't learned about selflessness yet! LOL!!!!

The bathroom is coming along very nicely. We have the shower, a new sink, and a toilet up and running. The tub is in, but no faucet yet. Hopefully tomorrow. We even have a door now which is a big step up from the curtain hanging in the doorway!

It sounds like the neurosurgery is a go...just waiting for a date. It sounds like it would be a 7-10 hospital stay. I will update when I know.

Hope everyone is having a great week :) I am adding new pics on the photo page when I get a chance, so check them out!

Love, Karla

Friday, November 30, 2007 12:31 PM CST

Hello everyone!

Someday people will realize I know what I am talking about when it comes to my boy. I could tell from the very first symptom that he had a UTI. Of course, it requires a 24 hour culture and susceptabilities before the right antibiotics can be prescribed. Meanwhile, I am being told that unless he has a fever it doesn't necessarily mean there's an infection. Well, surprise, surprise! Guess what? He has a UTI with the citrabacter bacteria again. The one that he had when he had meningitis. So while we are waiting for meds, he throws up, which I was told isn't connected with a UTI, even though he has done it with every UTI, and then starts to run a fever....and of course missed 2 days of school in the process. If people would just listen and help him out BEFORE he needs to get that sick, but that isn't protocol. Well, I can tell them where to stick their protocol.

You know, I realize things are how they are, but when you know your child so well, it's frustrating. Especially when I really want him in school right now. It has been such a wonderful thing for him. THe kids are starting to realize what makes him laugh and smile. We figured out that anything rhythmic, like singing, counting, clapping syllables, etc is so amusing to him. I love it.

The bathroom is looking so cool! Jacob took his first shower this morning! The shower is finished, the old tub is out and the old door is sealed off, so it is one big room now. There is still a lot of work to do, but it is exciting to see the progress.

Not sure what is going on with surgery yet. Urology is refusing to do surgery until the cord is fixed. While I understand WHY, it just makes me frustrated that we are going to continue to play the waiting game on what to do.

Hope everyone is having a great week! Sign my guestbook! I'd love to hear from you!

Love, Karla

Sunday, November 25, 2007 6:30 PM CST

Monday evening update:
So much for having an uneventful week. Not even 24 hours after I wrote this last entry and Jacob has another UTI. We brought a urine in and attempted to get blood drawn. Yeah, that worked well. Needless to say, we went home without any blood drawn. Jacob is sleeping with us tonight and hopefully we will figure something out in the morning.

Hello everyone! Hope you all had a wonderful Thanksgiving!

We spent the day with my sister and family, which is always a good time. We are loving watching Lauren grow up. Devin just loves her and spent a lot of time playing with her. Lauren spent some time on Jacob's lap, bouncing! LOL

And these pics just crack me up. I was trying to have both of them looking at me and making sure Lauren didn't fall off his lap at the same time. Notice Jacob didn't look up once. LOL

"I'll look at Jakey instead of the camera!"

"Hey whatcha lookin at? Gotta problem with me?"

"Can you see me now?"

A little better....Jacob's thinking about smiling.

And here is cheeseball Lauren! LOL!

Friday, I had to go shopping of course! I think I am officially done shopping now.

Jacob had his neurosurgery appt in the afternoon. The neurosurgeon was wonderful in comparison to the one we had in the past....thank God he left and went to another hospital. Okay, did I say that outloud???? LOL To actually have Jacob viewed as a person and our opinions viewed as vital pieces of this puzzles was amazing. The neurosurgeon is concerned over the whole to have surgery or not to have surgery to untether the cord. He isn't sure it will solve the urologic problems or help in general because it is one of those surgeries where you don't really accomplish anything to completely fix the issue. He seems to be more concerned over the syrinx in his spine. There is a huge one by the neck which might be the culprit and could be the reason for the right side weakness he has. He is going to talk to our physical medicine doctor more about her opinion on the whole situation, plus run it past some new pediatric neurosurgeons he is considering to fill the vacancy. What a way to see what they are made of huh? Anyway, as I learn more, I will share. I am assuming Jacob's urology surgery is still on for the 12th of Dec, but I guess I will have to find out. I am a little bummed because there are 2 major events going on that week at school, so maybe we'll get lucky and cancel the surgery. Yeah right....LOL

Jacob went to respite Saturday and Sunday. He sure loves it there. I decided to save them the joy of using the super poop blaster since the whole thought of cathing nearly scared them to death, didn't think I needed to complete the job. Lucky me got to use the super poop blaster when he got home tonight. It sure works well, but dang, I tell ya, there should be some sort of reality show that lets the public know just how much "fun" these things can be in a special needs household! If there is any way for things to somehow go wrong, make a mess, or totally frustrate the heck outta ya, it can happen around here!

I think this week should be a pretty non-eventful one with school each day. I am hoping we can stay away from Rochester and the doctor this week....I need a little bit of normalcy and less 160 mile round trips.

Have a great week everyone!

Love, Karla

Wednesday, November 21, 2007 12:14 PM CST

So much has gone on again since my last update. Jacob got to take Ted E. Bear home from school with him. We had to write of their adventures together for Jacob to share with his class. It was fun taking pictures posing Ted E Bear doing a variety of things, but these are some of my favorites...

Jacob had his first program last Friday. The Kindergarteners did a couple dances for their PE class. And of course I have pictures and video to share!

Doing the first dance in his wheelchair.

Doing the Turkey Tango

As you can tell, he obviously enjoyed it!

Afterwards, Jacob had some time with Miss Sarah on the computer. He is getting so good at making choices!

The kids only had school Monday and Tuesday this week. Yesterday, was pajama day for Jacob. Of course, we had to go to Mayo too just to add a little extra excitement for the day. We saw the physical medicine doctor and the neurologist for accessment pertaining to his tethered cord. Physical Med didn't see any changes in weakness or scoliosis, but did wonder if the rapid change in his right foot that was operated on had something to do with his tethered cord.

Here are the before and after pics of his foot:

BEFORE

AFTER

We also discussed the whole bowel management issue and are now proud owners of a super poop blaster.

Neurology seemed concerned the second she walked in the door. Obviously she doesn't want him to have a surgery that is unnecessary. However, after looking over the MRI and numerous conferences with urology, neurosurgery, and physical medicine, it appears that he will have to have an untethering surgery. This will have to be done separate from the urology surgery and will need to be done in order for the urology surgery to be effective, since they truly believe the tethering is what's causing the urology issues. And of course, she made me cry when we started talking about the past and how she remembers my devotion to Jacob from the beginning and how much I taught her about life. All of these changes and serious discussions about what is best for Jacob just make his conditions more real. So many times I can "forget" about them because Jacob is just Jacob....delightful, loving, heartwarming. But the reminders are there and sometimes the sting of that reality is not so fun. I do trust that the doctors will do what's best. It does help me a lot that the neurosurgeon we had initially has moved to another hospital. I just don't know if I could deal with his attitude again. We will meet with the head of neurosurgery Friday and see what his suggestions are on when this surgery will occur.

Of course though I can't miss SHOPPING Friday morning, so I was glad the appt is for 3:00. Hopefully I will be awake and coherent enough to have mature conversation by that time....usually I am in bed by then after an early morning of shopping! LOL!!!

The remodeling is coming along. I'd say it is almost 1/2 done. Here are some pictures of the construction so far!

Taking down the outside wall of the dining room.

Framing the new addition.

The walls are up now and this is the new roll in shower. When they get the rest of the junk out of there, I will take a better picture.

I am hoping all of you have a great Thanksgiving. We have so much to be thankful for....another year with Jacob-never thought I'd ever see him turn 5 AND start Kindergarten, a healthy year minus the current urology YUCK, and for new developments in eating, speech, and the ever exciting cognitive changes, even the whining :) I am so thankful for 2 older boys who keep me grounded and on my toes, sometimes both at the same time. I'm thankful for my husband who can be annoying sometimes, but extremely loving and caring much more than he annoys me. It's not been easy the last 5 years, but we are stronger and closer because of it. I am thankful for all of you who follow me on this journey, sometimes carrying me, sometimes kicking me in the butt when I need it, but always supportive and compassionate. I am most thankful though for the grace God has granted us to keep putting one foot in front of the other and the blessings which far outweigh any of the hard times. Happy Thanksgiving everyone!!!

Love, Karla

Wednesday, November 14, 2007 9:41 AM CST

Oh where do I start???? I tell ya....there is no such thing as DULL around our house. Between starting school at Viking, remodeling the bathroom, appts and Jacob's surgeries, Holly's surgery, and helping out with my mother-in-law, I don't know if I am coming or going. LOL

Jacob is doing so great at school. I absolutely LOVE his teachers, his aide, the kids in his class. It is going so much better than I could have imagined. It also feels so nice to have a more regular schedule during the day. We have a nurse coming over in the morning to help get Jacob ready for school and then we are off. School is helping with cathing and meds, so I don't have to plan my day around having to do those things like I did when he was in preschool. It helps having others willing and trained to help out with his cares.

We are now sporting a new toilet in the bathroom! Since we only have the one bathroom, we were wondering how the whole toilet thing would work, but the contractor put it in where it is going to be before he did much else. The closet was ripped out and wouldn't you know it,yesterday morning as we were ready to walk out the door to bring Devin to school and head to Mayo to remove the cast, Devin stepped on a nail. Yep, right through the shoe into his foot. My genetics must be very strong running through Devin, because wouldn't you know it....he passed out. Yep. White as a ghost and out. Because he looked so awful and pale, I took him with to Mayo to keep an eye on him.

The cast came off and Jacob's foot looks great! I have never seen it this straight. He had stitches too, so those were taken out. He is now the proud owner of 2 shoes again!!!

After getting back from Mayo, I called the doctor's office to discuss Devin's nail incident. Lucky Devin got a tetanus shot. And since he was already super pissed about the whole thing, I figured he'd get his flu shot too. Might as well get it all over in one bad mood.

Once again, we are revisiting the whole tethered cord and syrinx issue. Neurology, neurosurgery, and urology are all talking this week and trying to come to the best concensus on Jacob's need or no need for neurosurgery. So, we shall see what happens. I know they will decide what i best, but the whole thing is a tough one. Surgery on his ureters and bladder is scheduled for Dec 12th, so they are trying to get this all worked out before then.

Holly and Maya are both back home recooperating. Continue to keep them in your prayers!

Hope everyone is having a great week! Thanks for all the guestbook entries. I really appreciate it!

Love, Karla

Friday, November 9, 2007 9:39 PM CST

It was an amazing first day of school yesterday! Within seconds, Devin was off on the playground with one of his classmates. Jacob and I headed into school to find out where he should go. Trista, his aide, met us in the hallway, and Jacob headed to the Kindergarten classroom for morning message. He was a little nervous at first. Not an emotion I see in him usually, so it was interesting. When the nurse came in to say hi to him, it was as if he said, "OH SOMEONE I KNOW IS HERE!" I could totally tell he wasn't quite sure what to think! LOL

At morning message, Jacob sat in a cube chair with his vest on :)

I read Jacob's book to the kids, explaining a little about him. The kids were great!!!

Jacob headed to speech where he had facial massage and manipulation of his mouth. He started falling asleep, it felt so good! We are increasing speech, which I am very excited about. I really think we could get him saying some words.

Because of his adaptive PE schedule, Jacob has to go with another Kindergarten class to specials (art, music, PE, and LMC.) The cool thing is, we know 7 of the kids from this class! 4 were with Jacob at FLC and 3 are from our church. It was so cute watching the kids with him. He played kickball outside and then went to LMC for storytime and even checked out a book :)

When Jacob got back, it was time for cathing and lunch. Check out this big Kindergartener with a lunch tray!!!

Jacob had a few minutes on the playground and then headed back to his classroom for rest time. He ended up sleeping for a little bit. And then he was ready to play again!

Jacob had some serious work to do.....he painted a pizza

And then had to do some writing. LOL

After he was done with his work, he went to the book area and listened to a book.

Next was recess......

Do you notice the flock of kids around him????

When we came back inside, he had snack. He looked like such a big boy eating with the other kids.

Free play was next. Jacob played in the rice table, while many of his friends made pictures for him at the writing center.

After free play, everyone went to circle and did some counting. Jacob LOVES counting!!!

It was time to go home, so we packed things up and went back to the special ed/resource room. We had to fine tune some things on his IEP, so after talking a while, or forever as Devin says, we got that done. Jacob went home, ate, and went to SLEEP!!! Boy was he tired!!!

Today was a lot of the same things. He went on his first field trip to a pizza place! I had an appt, so I missed it, but I hear he had a great time, even though he was a little sleepy! After they got back, he took a nap. When I walked in, he heard my voice and popped his eyes open!

I am so pleased with the attention and inclusion that Jacob is getting. I just can't even explain just how wonderful it feels to see Jacob in the middle of it all, kids playing with him and talking to him, teachers and aides who try so hard to include him in any possible way, and to have things working so smoothly already. His day flows and the staff gets it.....he is getting fed, his meds, and cathed at school and it is going great. I couldn't be happier that the transition went smoothly.

Devin fit in the minute we got there. The little snot wouldn't even come over and sit by me at lunch yesterday! He was too busy with his friends :) I guess he did sit by Jacob today at lunch though....probably because I wasn't there. LOL It just tickles me so much to see how much he just fit in right away.

After many discussions, it was decided to wait a year and rescan Jacob for his tethered cord and syrinx. It is just a part of spina bifida and unless there are major side effects from it, it is best to leave it alone. It basically is scar tissue attaching to the spinal cord, and as you probably know, you take scar tissue away and it grows right back. So meanwhile, we will go ahead and get his urology surgery done in December. Cathing is going much better now.

Please keep Holly and Maya in your prayers. Holly had major surgery on Monday and is expected to be in the hospital until next week. It was a big surgery with a long recovery time. Meanwhile, Maya developed an infection and is now at the same hospital in the ICU. If things get worse, she will be transferred to Milwaukee. I feel so bad for Holly to have to be in this position.

Hope everyone is having a great week! Please sign the guestbook to let me know you were here!

Love, Karla

Monday, November 5, 2007 2:55 PM CST

Hello everyone! We've had a fairly okay week/weekend. Jacob is doing well with his cast, cathing is going well, and we weren't in the hospital this week. So far so good!
He will get his cast off on the 13th and see neurosurgery on the 14th to find out what he wants to do about his tethered cord and syrinx.

We met with Jacob's school staff regarding starting Kindergarten on Thursday! I think he will have such a great time there. I really can't wait to see my big guy in Kindergarten :) It sounds like it will be a smooth transition. He will spend a lot of the day in the regular Kindergarten classroom, as well as have therapy, art, music, PE, and library. He will also have lunch at school. It's just all really cool to think about. Devin is getting excited to start on Thursday too.

Jacob is spending time at respite since I am at the hospital with Holly following her surgery. Everything went very well, but it will be a long recovery.

Hope everyone is having a great week!

Love, Karla

Wednesday, October 31, 2007 9:30 PM CDT

HAPPY HALLOWEEN!

We had a great night. Michael went with his confirmation group for Trick or Treat So Other Can Eat where they collect can goods door to door. Holly, Dave, and I took out the rest of the kids. They had such a blast! Especially with Devin riding on the back of Maya's chair! LOL

Jacob and Michael were pirates:

(This was a much coerced picture taken after trick or treating when he left his pirate hat in his confirmation guide's van!)

and Devin, of course, was some scary eyeball popping out dude with a black robe. Does that surprise you?

And here are the kids having so much fun with Maya's power chair.

I had to laugh to myself when I was talking to someone about about Devin's fascination with horror....really, we are Christians! LOL He has always been quite the kid. At 6 months old, he loved going down the Halloween aisle and especially liked the bowl with the hand that grabs you.

It has been a crazy one around here the last few days. AGAIN. Jacob has been doing fine with the whole cast thing. But he obviously isn't doing so hot with the whole urinary thing. Friday night at 11:00 PM we took a drive to the ER once again. He was admitted, and after all was said and done, we got to sleep about 4:30 AM. Me, being the kind and ever so generous wife, let Dave sleep in Jacob's room with Michael while Devin and I took the sleeping room. Michael came knocking on my door at 7:00 saying that dad was snoring and too many doctors were coming into the room! He needed to make sure Dad told the doctors the right facts...sounds like a teenager huh? And about this time, I realized that my evil plan, I mean my ever so generous plan, of letting Dave have a taste for the hospital worked! I wasn't too evil though because after I had gotten some sleep, I let Dave use the sleep room for a couple hours. The funny thing is how Devin and Michael were the ones who were the most awake in all of this craziness!

We were able to get out Saturday afternoon after some IV antibiotics, just in time for us to head up to the cities for Lauren's first birthday. We didn't want to miss it :) I guess we have to keep some normalcy in our lives despite just getting out of the hospital.

I got a call from urology today with the results from Jacob's MRI. It's not good news. He has tethered cord at L5 and also a syrinx, which means his spinal cord is attached to some scar tissue and isn't moving freely and there is an accumulation of fluid in that area causing a cyst. Neurosurgery has been contacted and will call me with an appt. I am not thrilled about what this might mean....another surgery, but it might just explain why the whole UTI, kidney reflux, bladder issues have come up so suddenly.

It looks like Jacob and Devin will both start school next Thursday, the 8th, at the beginning of the 2nd quarter. We are having a meeting on Friday to discuss transition and to go over his needs for a full day program. It's all overwhelming, but I am excited for it to start at the same time. Now I just have to figure out how the heck I am going to be able to get up, get all Jacob's cares done and actually get the two of them to school on time! LOL

Please keep Holly in your prayers as she undergoes surgery Monday. She will have a long surgery and recovery time, so please pray for a smooth next few weeks for both Holly and Maya.

Bathroom remodeling starts tomorrow! I am beyond thrilled! We are also in the process of getting a hoyer lift, bath chair, and new feeder chair since his high chair is too small. Cross your fingers that we can get these covered!

Love, Karla

Thursday, October 25, 2007 7:34 PM CDT

This will be a long journal! I have so much to update on!
Jacob had a great time at the apple orchard last week. We were so lucky to have some big strong men with to help push him through the grass and lift him onto the hay wagon! It was absolutely adorable watching him take bites of his apple. I tell ya, I don't think the wonder of him eating will ever go away. It still hits me so hard and I am so grateful.

Friday, Jacob and I were on the CMN radiothon for the 4th year in a row! I really love telling Jacob's story and visiting with all the radio personnel, especially Jacklyn and Debbie! Jacob even went on the radio. He had many important things to say on the radio. He kept saying YEAH! really loud. LOL Here are some pictures of Jacob and Jacklyn at the radiothon.

This past weekend, my mom and stepdad came to visit. We had such a great time. We went to Norskadalen, a Norwegian museum as such, with houses and buildings to tour, old furnishings, and tools, and the most BEAUTIFUL area you can imagine having it in. All around us were bluffs in full bloom and quiet, serene moments.

There is a brook that runs through there and the boys spent the longest time down by the brook.

The boys loved ringing this bell. It made Jacob laugh so hard! You can check out the rest of the pictures on the photo page.

Saturday night was our church's meatball and lefse dinner. I tell ya, Jacob would still be eating if we let him! He LOVED it. We were cutting up the meatballs and all of a sudden he grabbed one and started chomping on it! Picture a meatball the size of a small apple in his little hand. Too much! LOL

Sunday was church, Scrabble games, and puzzles. We finished 2 puzzles this weekend actually! Catheter Boy was sick of his Foley so he decided that letting it break in two would be a good thing. Not a good thing for mama's nerves though! I think some not so nice things came out of my mouth as I picked him up to put him in his stander and the tube broke. Let's just say, a quick call to the urologist a few minutes later and things were back to normal. Intermittent cathing has gone well ever since.

Mom and Marvin left Monday morning after the boys headed to school. We spent Monday getting ready to go. Amazing how that works.

Jacob had a sedated MRI Tuesday morning. Check out the cute boy! LOL

It went really well, long, but well. He was a little whimpery until he saw me and Daddy. I love how he is reacting to things. It just proves he DOES understand. After his MRI, we went to urology and tried out a different catheter to see if that stops all the bleeding incidences we have had. Our last visit was a pre-op appt to make sure he was healthy enough to go under general anesthesia. Everything checked out great.

We had to have Jacob's favorite Chinese for supper and then headed to the hotel. Wouldn't you know it that the first time I expect the boys to pack their own stuff (including my big boy Dave) Michael and Devin FORGOT their bags at the house??? Nice huh? So off to the store to get some swim trunks for Devin since he HAD to swim and while we were there, we picked up a couple shirts.

Jacob, Devin and I headed to the pool when we got back. Jacob was so excited by the words, "You want to go swimming???" He is splashing SO much in the pool now! It is so stinkin' cute! Devin and Jacob would play a game where we'd say it was Jacob's turn and then Jacob would splash. When he was done, Devin would say it was his turn and then he'd jump in with a big splash. This of course sent Jacob into hysterics! Then we'd say it was Jacob's turn again and he'd splashed. And so on back and forth. The interesting thing is he'd only splash when it was his turn, not when it was Devin's. He waited and listened for the READY SET GO! from Devin and for Devin to tell him it was Jakey's turn. Now how awesome is that??? Total understanding of language, cause and effect, turn taking. Amazing. This went on for 10 minutes and not once did he misunderstand what was asked of him.

We had to be at the hospital at 6:30 AM for surgery. Jacob also had botox. Dr Driscoll caught us in the waiting room before our MRI to discuss it with us. Hoping that helps his right hand and arm.

Jacob went back and got the cutest little surgerical cap!

Anesthesia came in and talked to us and then gave him some Versed to make him a little sleepy. Well, it knocked him out! LOL He was SOOOO out, his leg flopped and when we lifted him onto the stretcher, he snored so loud! His sats were a little low, so they put some oxygen on him.

Surgery started at 8:38 and was done by 9:17. Dr Driscoll did the botox after the surgery. Both doctors came out to tell us it went well. Jacob was in recovery and they were waiting for him to wake up. He was so sleepy, they asked us to come back and see if we could get him to wake up. Every now and then we'd see an eyeball, but he'd go right back to sleep. I decided to walk with the boys down to McDonalds so we could eat, since we were all hungry. Dave stayed with Jacob. When we came back, he was awake a little more and eating a freeze pop. After eating some pudding and drinking some chocolate milk, we were able to go home. We were shocked since we were told he'd be staying overnight and had made plans for that. He does have a mighty cute green cast though! I told them if he came out with any other color than green, he'd be heading back in to change it! LOL

You can also see more pictures of his surgery on the photo page!

Today's been a lazy day. Jacob and I snuggled on the couch and took a nap. When we woke up, we realized Jacob had POOPED all over me, the couch, and the blanket! YUM!

Hope everyone is having a great week. We are looking forward to my niece Lauren's first birthday party this weekend! It's hard to believe she turned one yesterday!!!

Love, Karla

Tuesday, October 16, 2007 10:36 AM CDT

Good morning! It has been a rainy last few days here. Jacob is supposed to go on a field trip to the apple orchard today. I guess the hayride is going to be out!

I think we have a new superhero name for Jacob.... CATHETER BOY! LOL I went into school yesterday to talk about the whole catheter thing and when I saw him I said, "There's catheter boy!" The nurse laughed and said it sounded like a super hero name! So Catheter Boy it is!!! I was very happy to see the PT so comfortably moving him around with it. She even knew the hook the catheter to the pocket trick! I find it amusing how quickly I've gotten used to it too. Before Jacob was born, I never would have imagined the things I have gotten used to! It's amazes me how things just become normal after a while.

Anyway, back to school. Jacob was in PE playing pass the beanbag game and laughing SO hard. I love his anticipation knowing when the song will speed up and he has to pass it fast and when it slows down. He is something else.

Jacob is so fascinated with the Leap Frog Fridge Phonics. You place a letter magnet into it and when you push the letter, it sings a song about the letter sound. He loves the letter B, C, and X the most. He can hit this thing over and over and over and over (right Diane?!?!?) and amuse himself forever. Now all you have to do is ask him, "What does X say?" for example and he hits it! LOL He is understanding SOOOO much more of what you are asking him to do. When he had the radioactive injection last week, he was getting a little panicked. All Diane had to do was hit the letter and he would smile the cheesiest grin you have ever seen. The lab techs were laughing so hard at him.

This morning I was getting Jacob dressed and changed my mind once I got his shirt on, so I had to take it off. Let me tell you.....I heard about it! I have always said how nice it is that Jacob doesn't really care what I put on him or whatever, but now he is giving me attitude when I change my mind. How dare he???? LOL

We are gearing up for next week. On Tuesday, Jacob will have an MRI to check for a tethered cord and syrinx in his spine. He will have his catheter taken out and will try a different kind of catheter tip to see if that helps the bleeding. We will also have a pre-op appt for his foot surgery on Wednesday. Hopefully they have a lime green cast is all I have to say! We are preparing for an overnight in the hospital and hopefully coming home on Thursday.

Hope everyone is having a great week! Please sign the guestbook if you haven't signed it in a while. It's great to hear from you!

Love, Karla

Saturday, October 13, 2007 10:52 PM CDT

Hello everyone! Jacob missed the ER so much that he decided it would be fun to visit it AGAIN. I cathed Jacob yesterday when he got home. Two hours later he was SCREAMING, so I cathed him again and he had so much urine still in there! In fact more than he does after a full night's sleep. But it gets even better. Not only was the pee just a flowin' but blood too. Blood was dripping around the catheter and then a huge blood clot came out. Needless to say, urology got a call and we headed into the ER. He has a foley catheter in now so that maybe his urethra can have time to heal if there is irritation in there. Monday, I will need to call his regular urologist and see what he wants to do and when the foley should come out.

Just previous to this, I got a call about his test results. He has 41.5% function in his right kidney and 58.5% function in his left kidney, so the right side isn't working as hard as the left to make up the 100% , but it is still in reasonable limits to leave the kidney in there. It was obvious his bladder pressures are really low, so he will definitely need the Ditropan long term.

So much excitement in the last month. We are hoping to actually get the bathroom started here soon. Hopefully, it could be started when Jacob is in for his surgery so we aren't without a toilet for too long!

Love, Karla

Thursday, October 11, 2007 9:11 PM CDT

Hello everyone! It was a busy day yesterday. My friend Diane offered to come with, which was so nice to have such good company on a long day. Jacob had a cathed urine for labs and cultures. We headed to nuclear medicine where he was given a radioactive injection into a vein for a DMSA test. It is getting harder and harder to find a vein. In fact, the port word came up again. Not sure what I think of that. We had to wait 3 hours for the injection to work, so we headed off to one of my favorite stores in Rochester, a consignment store with namebrand, next to new clothes for a very reasonable price. I found 3 pair of zip off pants for after his foot surgery! YEAH! I will probably need a couple more.

After lunch, we headed back to the clinic for the test. We ended up waiting awhile before being called back. He laid in a machine similar to a CT scan which took gamma ray pictures on both sides of his body at the same time. The scanner had to be very close to his face and he had to lay still, so luckily Jacob had just fallen asleep and stayed sleeping the whole time. It was obvious that the right kidney didn't look the same as the left. After reviewing the scans with the nuclear medicine doctor, it was decided to do a 360* scan too. The whole thing took a long time. I wish I could have taken a nap or at least had a book to read! LOL

The last test was a urodynamic study. He had his bladder drained first, then had a probe in his heinie and a catheter placed, along with some sensors. The tech started filling his bladder until he couldn't stand it anymore. This measured the pressure in his bladder. Of course Jacob couldn't just do the test and get it over with. No, he decided it would be a perfect time to poop all over the table, the probe, and sensors!!! So after a major clean up, we got the test done. I don't know the results yet. Hopefully soon.

Jacob will have his school picture taken tomorrow. Thankfully they hadn't had retake day yet! We are also going to cross our fingers that he will start soon! No word yet on a date, but I think everything is pretty much in place except for an aide. Hopefully I will know tomorrow!

One of the most amazing things happened today. Jacob played peekaboo! I was getting him dressed and as I do every morning, I stopped as the shirt was covering his eyes. Up until this morning, the most I got was a lot of heavy breathing and giggles. Today, when I put his hand up to his shirt, he grabbed it and pulled it down! And what did I do???? Cheer, praise him, and cry like a big baby! And for your viewing pleasure......

Tonight, he was so stinkin cute. Well, he's cute ALL the time, but even cuter tonight for some reason. LOL Here's proof!

Don't you just LOVE the hat!?!?!? And it's a real hat, not an infant, I've got a microcephalic head hat, but a hat! It was so cute to see him wearing it.

Check out Goldfish Mouth! LOL

And of course, I have to show you how cute he is eating Goldfish! Notice the upward glances like," DANG! These are good!" And at the very end, you will notice how he strategically bends his pointer finger so he doesn't bite it.

Another busy weekend is ahead. Devin receives his Bible this Saturday. He also has a birthday party to go to. We will most likely end up back at Lorraine's house. Almost 6 months later and we are still working on the house.

Hope everyone is having a great week! I appreciate all the guestbook entries and emails.

Love, Karla

Tuesday, October 9, 2007 10:45 AM CDT

Good morning! Things are going okay. We were able to visit the school yesterday and see what the program was like. Jacob was SOOOOO talkative and LOUD! LOL He was telling everyone what he thought I guess! I was impressed with the staff and the equipment, toys, and set up they have. The teacher gave us a tour around the school and had us meet the Kindergarten teacher. The crazy thing is I graduated college with this teacher! Jacob went back to the special ed room and spent some time playing while Devin and I met the 3rd grade teachers. Devin knew some of the kids from church and summer school. He was excited to check it out. He wants to move over there so bad. LOL

We are just waiting for an aide to be hired or moved over to the classroom for Jacob and for transportation to figure everything out. It is going to be tricky to get Devin over there. Technically, if a parent changes school placement, they have to transport them. BUT we are having to change because Jacob can't go to our home school based on services. So, we will have to see what works.

I have been asked many times over the past few days why it's so important to have the boys together and wondering why we would want to take Devin away from the school and friends he knows. We've been asked if this isn't going to be detrimental to Devin having to change schools and if he has to ride with Jacob on the special ed bus if kids will make fun of him.

I think it's time to set things a little straight here. First of all, I am shocked how many times I hear concern over how my boys are doing, asking if it bothers them to have a brother like Jacob. I don't want my boys to EVEN HEAR these questions because I don't EVER want them to think they SHOULD be feeling any other way then they are. They see Jacob as their BROTHER. Plain and simple. Their BROTHER. Not a burden, not a bother, not someone who has changed their world in a negative way and not someone who they have to cater to and makes changes in their lives just because of his existence and disabilities.

And yes, we do need to consider their feelings in all of this. That is why we gave Devin the decision on what he wanted to do. Michael, being who Michael is, would not have changed schools. And I wouldn't have expected him to. Devin, being who Devin is, loves change and adapts so well. I think it is because he was only 3 when Jacob was born and has gotten so used to making friends wherever he is. He spent so much time in the hospital, playroom, clinic, and Ronald McDonald House and learned how to make friends anywhere. It's just not a big deal to him.

I also talk very regularly with the boys saying if there ever is a time where they just feel so overwhelmed, jealous, or left out because of Jacob's needs, they need to tell me. And so far, things have been really great. There have been a few times things have been mentioned, but they have been easy to fix. But I think honestly they realize what a miracle he is and truly love him for who he is. And why people are so convinced there needs to be a problem is ridiculous. Can't my boys just see him as a brother? Just like anyone else does their siblings? Why does the disability need to be seen FIRST before the fact that he is just a brother? And don't all of us want our kids in the same school as much as possible?

I might sound very defensive about this, but frankly I am tired of it. I know people are concerned and care about us and the boys. For that I am very thankful. There is just no reason I need to justify our choices continuously.

We are going to Rochester tomorrow for more urology tests. He will have a urodynamic study and renal scan. He will have his MRI on the 23rd, the day before surgery. Please keep us in your thoughts and prayers for answers as to what is going on his his reflux and that more damage is not present. Thanks!

Love, Karla

Friday, October 5, 2007 4:10 PM CDT

This poem was shared with me today. It really spoke to my heart.

To My Anticipated Son

I anticipated complaining of a waking baby;
Not of being grateful he's able to wake at all.
I anticipated the wonder of time rushing past;
Not of reflecting on milestones so small.
I anticipated crying at immunizations and bumps while learning his way;
Not of agonizing at more tests, evaluations, and word of more delays.
I anticipated choices over preschool, clothes, and scout troops;
Not of choices between hospitals, specialists, and which support groups.
I anticipated loving him, but enjoying his independence from me soon;
Not of loving him so much I'd want to keep him sheltered in my cocoon.
I anticipated health and perfection when my baby was inside, thinking
anything less
would be tragic;
But now that he is here, my special son has worked some kind of magic.
I anticipated anger and disappointment at this fate;
Not the joy and growth and knowledge that have become mine as of late.
I anticipated something different, that is certainly true;
But that's because I never could have anticipated one I love as much as you.
written to Tim with love from his Mom, Kathleen Hoppe, August 1995

Today has been an emotional one for me. We had some hard choices to make regarding Jacob's school. We had decided to keep Jacob in preschool one more year because at the time, we figured he would have the same teacher and aide that he had for two years. When we realized this wasn't going to happen because of changes in the preschool program in the district, we were willing to try a new teacher and aides. It just hasn't been easy in many ways....Jacob is such a combination of SO many things, that to explain to him to someone and then explain it all over again next year when he went to Kindergarten was just too much. It has also gotten much harder for his therapists to have enough quality time with him and to still give him the experiences in the classroom. Dave and I both decided it would be better to send him to Kindergarten instead. We had decided this within a couple days of school starting, but because of Jacob being in the hospital, we had to reschedule two IEP meetings.

Another part of our problem in making a decision is that the school which Devin goes to doesn't have CD kids like Jacob. The CD program is at another school. My heart told me that I needed to explore the option of getting Jacob into Devin's school. After talking with Wisconsin Disability Rights and the DPI, I had a better idea on what I needed to do. I needed to know WHY one school/program would be better for Jacob than another and what kind of things could not happen at Devin's school to make it appropriate for Jacob. After a discussion with all his team, we decided the best placement for Jacob would be at the other school. Devin will also transfer over there. It is very important to Devin and Dave and I to have them together. Michael and Devin are 6 years apart, so they were never in the same school at the same time. Devin really wants to change schools which is kinda funny. He said he wants to meet new people. LOL He is such an easy going kid and for him to want to change because he really wants to be at the same school as Jacob, is so awesome.

The whole thing is so hard.....since Jacob was a baby, I had thought about school and I knew the situation would be a challenge trying to get him into Devin's school. It became clearer to me today why it is best for him to change schools. It doesn't make it any less emotional. I feel like so many milestones I dreamt of for him as my CHILD first, are mourned.....I can't just send him to school like I did Michael and Devin.....It has to be so much more difficult than that. I have such a huge headache over this whole thing. I just want what is best for him and not just do something because someone told me that's just how it is. I tell ya.....this whole parenting a disabled child is so hard sometimes.

We heard from urology. Jacob's case was presented in front of many doctors and from this discussion came some ideas for more testing. One test will to check the pressure in the bladder. Another test will show the function of his right kidney compared to the other. The third test will be an MRI to check for a tethered cord and syrinx in his spinal cord. Hopefully we will hear Monday when these tests will be.

Jacob is doing well overall. I think he is feeling much better. His urine looks clear again and the cathing is going well.

Hope everyone had a great week.

Love, Karla

Wednesday, October 3, 2007 1:40 PM CDT

Hello everyone! Things are going alright here. I had to increase his cathing to 4 times a day because he isn't really peeing at all on his own, except for a little in the morning. The Ditropan is used to lower the pressure in his bladder, so without all that pressure, he isn't peeing all the time like he was.

ANYWAY......onto other news. Jacob is having ortho surgery on his right foot on the 24th. We questioned if we should postpone that surgery seeing that the urology surgery is more important. Urology said they would rather we go ahead with the ortho surgery and then wait 6-8 weeks before having the urology surgery. That way the Ditrapan and intermittent cathing will be given a chance to stabilize a little. He will then have a repeat VCUG on December 11th, with surgery the following day. There is a slight chance that things will be better from the meds and cathing, so we will see what the VCUG shows.

We are having an IEP on Friday for Jacob. We have had some issues with school this year. I think it is important to sit down with his team to discuss what changes have been made at all his Mayo appts lately. Also, we need to make some decisions on placement.

Hope everyone is having a great week. I have a lot of stuff to do around the house lately. Maybe someday I will actually catch up! LOL

Love, Karla

Sunday, September 30, 2007 6:33 PM CDT

Hello everyone! We are home. The susceptibilities came back saying the antibiotics we started were the right ones, so we were able to go home on oral cipro. We were a little surprised to be going home already, since the urologist said, "See you on Monday." Jacob will have a repeat VCUG on the 6th, with surgery the next day. We are going to find out if orthopedics wants to do their surgery at the same time since he is already scheduled for surgery on the 24th of October for that. We started Jacob on the Ditrapan yesterday. He woke up with a wet diaper this morning, but has not peed on his own since. Not sure if the Ditrapan is the cause or what. I have cathed him and have gotten out quite a bit each time. But then again yesterday was high volume pee day, so I am not sure what to think. I will talk to the doctor about that tomorrow.

Today we are having a lazy, not get dressed kinda day. I don't think I have ever done that. I always have something to do, so today I have decided I wasn't doing anything! LOL Dave took Michael to church this morning to acolyte. Jacob and I slept until 9:30. We got up, got breakfast, Dave went back to bed for 4 hours. Then Jacob and I found the couch for the next 4 hours! LOL Jacob spent a majority of that time sleeping. I played catch up on my DVR. We ordered pizza for lunch and watched the Packers beat the Vikings....my kind of day.

Back to our hospital stay.....Dave and Devin came to visit us on Friday night. Michael had to play with the band at a football game. Jacob was so excited to see them. He had to have a little snuggle time with Devin and Daddy.

Kisses for bubba. The nurse saw this and almost cried!

Telling Daddy stories.

Devin wanted to stay over with me. He was so excited to sleep in the hospital :) It was nice having my hospital buddy with me. Dave went back to be with Michael and to bring him to the Oktoberfest parade on Saturday since he had to march. They were planning on coming up Saturday afternoon, but we got out just before they were ready to leave. My sister Sandi and her family came up to visit on Saturday. It was so nice to see them. Lauren is just too stinkin' cute. It is so fun to see her personality really coming out. Matt of course is a great big brother too :)

I hope you got to see the pictures Holly posted the other day. She had watched Jacob for me a couple weeks ago. One thing I can always count on is for her to take some really cute pictures of my boy. Here are Jakey and Maya sharing secrets.

And being extremely cute together!

See what Holly teaches my boy when I am gone???

And that cute smile :)

Hope everyone had a great weekend. I really appreciate hearing from all of you.

Love, Karla

Sunday, September 30, 2007 6:33 PM CDT

Saturday, September 29, 2007 10:34 AM CDT

Hello everyone! We are still hanging out here at the hospital. Jacob is growing a not so nice bacteria, a different one than he had last week. Jacob had a VCUG yesterday. They put dye through a catheter and watch what happens to it via x-ray. Jacob has significant reflux, grade 5, into his right kidney. The ureter is also dialated and the pressure in his bladder is high. We are going to clear this infection and start ditrapan to lower the pressure in his bladder, then he will have a repeat VCUG. Following those results, he will have surgery to make the ureter smaller and move the ureter to a new place in the bladder. This will require a 2-3 day hospital stay.
We are looking at some time in November for this to happen.

It's weird how I just knew that something wasn't right, that somehow things were going to start heading south soon. I guess a mama who is so connected to her boy just knows. I find it incredible.

It's also pretty incredible to see Jacob's responses to things. He was not happy the second we walked into the ER. Or when people thought about touching his arms. He knew that the pokes were coming. He also was BEYOND insulted when the tech poured water on him during the VCUG to make him pee at the end. He screamed about that for about 10 minutes.

A couple cool things...he is in a big boy bed instead of a crib. This is nice so I cam sleep with him. He also gets to order food from the menu :) He was SO excited to eat his chicken strips yesterday, he was just shaking. LOL It probably didn't help that he was SUPER hungry since they held off on food for the testing.

I am doing okay. I feel like I am at a better place with this then when he was an infant. I know him a lot better, and I have a hang of all the medical "stuff." It's just the reality of it all that is hard to swallow sometimes.

I am still looking for some basketball pants with snap up sides in size 5T or 5/6. If you have any, please let me know :)

I sure appreciate all of the guestbook entries.

Love, Karla

Thursday, September 27, 2007 7:43 PM CDT

OH NO! NOT AGAIN!!!!!

UPDATE!! Just wanted to let you know Jacob was admitted and he is in room 3-106 at St Mary's. I'll let Karla update more, but they are doing some additional testing today to determine the cause of her urinary issues. He did have an u/s which showed some free fluid and hopefully the VCUG later today will lead them to more answers and hopefully a solution. Please keep praying.

Hi, This is Holly writing for Karla. Jakey is not feeling too well at all and is running a temp again while still on antibiotics for his UTI from last week. He was having a lot of pain in his abdomen and his urine still isn't looking right so after seeing the pediatrician they were heading up to the ER in Rochester (Mayo). Hopefully this time they will take the time to figure out what is going on with him so he can really start to feel better and STAY better. Poor little guy doesn't need to deal with this...there are much more fun things to be doing than feeling yucky. Karla said this morning he didn't even want to eat and was sick to his tummy and we all know how much he loves his food! Please keep his in your prayers as well as Karla who I'm sure is tired of dealing with this back and forth and having a sick little Jakey on her hands when all she wants him to do is feel well.

Karla I'm sure will update as soon as she's settled and knows more. Thanks for checking on Jakey, I know they appreciate it.

Holly

Wednesday, September 26, 2007 6:25 PM CDT

Hello everyone! Jacob is feeling a little better I think. Pretty much back to his normal self, except for needing more sleep. His urine still looks a little cloudy to me, but better than it was. Cathing is going well. He is starting to fuss though as soon as I get the catheter out. Smart cookie.

I think he was quite thrilled to go back to school. I came in to see how he was doing at the end of the day. He was SO excited :) He was talking, telling me he loved me, and kissing me. It was so cute. We are hoping to get together for an IEP this week since it had to be cancelled when he was in the hospital.

The speech pathologist at Mayo feels there is a good chance he will be able to talk. She wants us to use some simple phrases on switches so he can ask for and tell us what he wants. It is also recommended that we manipulate his mouth to show him how to make the sounds he isn't right now. We are going to work on more, go, I want, hi, and bye to start with. I was encouraged by the fact she felt he was making so many good sounds and having conversations with us. Now if we could just understand what he is saying! LOL

Jacob is scheduled to go to respite this weekend. I think they were thrown for a loop a little when I told them he needs to be cathed. There needs to be nursing staff to do it. It really doesn't take long, so hopefully the nurse that is there for the other kids can do it. Still waiting to hear if that is okay.

I have a request! Jacob is going to have surgery on Oct 24th. We will need to have pants that fit over his cast. If anyone has snap off/basketball pants in size 5 T or 5/6
and would LOVE to give them to an incredibly cute boy, let me know! Also, Danielle, if you have any ideas on what you did for Jordan when he needed to be casted, let me know! The hard part though is most of the basketball pants are slippery and let me tell ya, a hard to hold boy is even harder to hold in slippery pants. So if you can help out, I'd appreciate it!

Hope everyone is having a good week.
Love, Karla

Saturday, September 22, 2007 8:19 PM CDT

We are back home! We got home last night. We were waiting for his urine output to pick up a little. We were getting very little cathed urine and the diapers were pretty dry. He was so funny.....I asked if he wanted to go home and he shook his head yes and said, "I DO!" LOL!!!! I got smart this time and took the prescription with me to fill at home. There have been times where I let them fill it at the hospital and waited for hours.

Today he is feeling a little better. Laughing, smiling, and talking again. Still very tired and pale though. He has been sleeping since 3:00. The cultures came back. His urine is growing E Coli which is a common bug in UTIs. He will continue on antibiotics for 10 days and then have a recheck with his pediatrician.

Monday, we head back to Rochester for a speech consult. When Jacob saw Dr Driscoll last Monday, I was telling her how much he is whining lately because he wants to TALK so bad!!! He gets frustrated and whines. Sooooo.....we are going to see speech :) Is that exciting or what that my boy is making progress?!?!?

Hope everyone is having a great weekend.

Love, Karla

Friday, September 21, 2007 10:40 AM CDT

Hello everyone from Club Med Rm 3-108! Jacob is in St Mary's in Rochester. Yesterday morning when I went to cath him, there was a lot of blood. He spent the day either crying or sleeping while we waited to hear if he could get in for a CT scan to check for stones. Finally, we decided to just head into the ER and have it done there. He was admitted late last night. His urine looked horrible, so they think he has a UTI even though the cultures are negative right now. The CT scan didn't show any stones.

Jacob's appts on Monday and Tuesday went okay. He had labs and an ultrasound. The ultrasound showed some hydronephrosis in his left kidney, which means there was urine still in his kidney since his bladder isn't emptying the best. Both his bladder and kidneys are showing some thickening of the walls. I also noticed discharge during the scan which I hadn't seen before. His urine looked cloudy when it was cathed for labs, but that culture remained negative. It was decided that we will cath 3 times a day for 2 weeks and give the results to the urologist to decide how often he will need to be cathed now.

Jacob is scheduled for foot surgery on Oct 24th. One of the tendons in his right foot has always been tight, but it is progressively getting worse. He will also have botox done in his right hand while he is sedated.

We were able to see his CT scan of his brain on Tuesday. I think it appears to look better than the scans as an infant. Next visit, we will compare the two since they are archived now.

We are attempting to get a new chair that can be used as a floor sitter and a highchair. We also had a hand splint made for nighttime. All in all it was a very busy 2 days! It was nice having my mom there for support.

You know the weird thing about his hospitalization? It was 5 years ago today that he got so sick from a UTI. We are not doing a repeat performance. If things continue looking okay, hopefully we will be out later today.

Love, Karla

Tuesday, September 11, 2007 5:56 PM CDT

Hello everyone!

I just had to put the picture at the top back on...it is one of my all time favorites of Jacob.

Things are slowly coming together. Some training is getting into place this week. We will see how it goes. The kids in Jacob's class are really awesome. When he gets on and off the bus, the kids all say, "HI JACOB!" "GOODBYE JACOB!" He LOVES it. He is all smiles. The kids are playing with him and helping out with Jacob at school too. It's awesome. He needs that and so do the other kids.

I tell ya....it's hard being the mama sometimes. You know, I don't ever remember having to keep on top of everything with the other boys. I mean, for the most part, things just happen with typically developing kids. Yes, you might have a bump in the road every now and then, but nothing like it has been parenting Jacob. If I don't stay on top of things, who will? I know patience isn't one of my best qualities. I know that there are times I just need to "chill out." But I can also say that Jacob wouldn't have gotten this far if it hadn't been for my lack of "patience!" LOL

This afternoon, I got the chance to do something I love....teach. I attended a special ed class at a local college and talked to them about my role as parent liasion for the school district and also my role as mom to Jacob. I always enjoy sharing our story with others.

Next week will be a very busy week. Monday and Tuesday, we will have tons of appts at Mayo for Spina Bifida/Cerebral Palsy Clinic. I am hoping my mama can come with me to those appts since there will be a lot of info shared I am sure.

Take care everyone and thanks for all the kind words.

Love, Karla

Sunday, September 9, 2007 1:57 PM CDT

Hello everyone!

It's been an interesting week. Jacob is excited to go to school everyday. There's one problem though.
New staff plus no transition meeting plus little sharing from past staff who worked with him = people without a clue and one upset mama. I'm told it's just the first week. I don't care if it is the first week or the last, everyone needs to be aware of what Jacob needs and HOW TO DO IT. It is not fair to his new teacher or aides to be left clueless. They are willing to learn, just need someone to help teach them. Is it my job to have to be in there everyday to teach them? I think I need to turn in my time card. Wednesday, he went swimming so I didn't go in and Friday, there was a sub who knows him pretty well, so that was helpful. Otherwise Tuesday and Thursday I was there most of the day. Hopefully things will turn around soon. I really want the best for him.

Friday, Jacob had his yearly physical. It's so weird to really only see the pediatrician for planned appts now. Jacob has done so well this past year, that we really haven't seen much of the doctor. I love how our pediatrician really takes the time with us to answer any questions and to listen to me bragging about how far our boy has come. I was telling her about the temper tantrums he is starting to have and how excited I am he is doing it. She just laughed and said I was the first parent who actually was EXCITED about temper tantrums! LOL

This has been a nice relaxing weekend. We spent a few hours yesterday cleaning out Lorraine's house. Hopefully within the next month we will work on getting it onthe market. We pick Lorraine up for church every Sunday and have her over for lunch. Now we are watching the Packers. Dave's excited the football season has started!

Hope everyone is having a great weekend! Leave me a note to let me know you stopped by!

Love, Karla

Tuesday, September 4, 2007 3:37 PM CDT

Hello everyone! First day seems to have gone great! Jacob was excited to go, then got a little quiet once he got on the bus. I stopped by to make sure he was okay. It was good timing since they were in circle and just ready to talk to the kids about Jacob. I was able to tell the kids a little about him. It was cute when I asked why they thought he needed a wheelchair, one of the boys said it was because his legs were broken and another agreed with him. LOL The kids had play time next. I was able to watch Jacob play in the sand. He moved his fingers around quite a bit. I don't think he quite enjoyed the taste of it though! LOL He also worked on gluing with the OT. Michelle had him hold onto the glue stick with his right hand, his weak hand, and then grab things to glue with the left. He did really well with guidance. I am so shocked to see how good he is doing with his fine motor picking things up now....I guess food was a great motivator! At one point, he didn't want to hold the glue stick anymore, but after a break, he was asked to hold it again. I think he is getting to the refusal stage and needs a little "encouragement" every now and then! LOL It's also good to give that right hand a workout. It has gotten so bad over the last few months. As his left hand gets stronger, he no longer wants to even try to use the right hand. He wears a hand splint now because the thumb, which has always tucked in, is getting tighter and the fingers are starting to curl. Typical with CP.

I'll leave you with some pictures of the boys starting school this morning!

My baby went to HIGH SCHOOL today!

Michael and his "skater hair." Look at how grown up he is! I can't get over how his neck and adam's apple are starting to look like a man's! Okay, I am glad he doesn't read this or I'd be in trouble! LOL

My incredibly cute 3rd grader!!! Didn't he just go to Kindergarten????

He came home and said, "MOM! I had a GREAT DAY!" And you know what my high schooler said? "I know you are going to ask how my day went, so before you do, the answer is good." LOL!!!

My sweet preschooler :)

Of course he HAS to have a Froggy Goes to School backpack! LOL

Going up on the lift on a BRAND NEW BUS! I had to help Barb figure it out! LOL Of course, the whole thing was incredibly entertaining to some boys on the bus. When we got in, one of them said, "WOW! HOW DID YOU DO THAT?!?!?!?"

Buckled in on the bus.

Hope you are all having a great day :)

Love, Karla

Friday, August 31, 2007 1:14 PM CDT

Sesame Street was a blast. We got to see Ernie backstage.

Jacob was too busy chewing his hand to look up for the pictures! LOL!

Just what every teenager needs....a hug from Ernie! LOL

We were escorted by the La Crosse Center staff to our seats. I really think Jacob liked it. There were smiles and laughs, and of course the every few minute kiss he had to give me to make sure I was still there. It is so stinkin' funny. He leans back and puckers up. Then he is fine again after a kiss. Like he has to make sure you didn't go anywhere! LOL

Here is Jakey and Maya before the show!

And then some of our favorite characters!

Bright and early Saturday morning we headed out for Lion's Camp for the Wisconsin DeafBlind Family Weekend. We look forward to this every year. It is so awesome being around other families who have kids with disabilities. You feel so normal.....it's great. They have so many activities planned for the kids too. The boys were in their glory.
On Sunday, we had elections, and I was elected as President of our group! I am excited for what the next two years will bring. We have such a great group of families who are wonderful to work with.

Jacob wasn't quite feeling himself from last Friday on. In fact, he had a pretty bizarre seizure at the end of Sesame Street where his left eye rolled up. After talking to our nurse at Mayo on Monday, she thought it was best to be seen by the neuro. Well, wouldn't you know it....the whine all the way to Rochester, I'm not feeling so hot, cry a high pitched cry little brat decided to PERFORM for the neuro. He was all smiles, jabbering, answering yes and no questions, and totally ENGAGING. In fact, I think the neuro got quite a kick out of it. He was definitely showing off. Since then, he is feeling a little better. We think he must have had a virus. We did increase his seizure meds though since he has grown so much! He is 44 lbs now.

Michael went to the MN State Fair and Valleyfair with the band this week. I think he had a great time. Of course, the information is a little limited coming from a teenager. I think I actually found out more info when Devin listened in on a conversation Michael was having on his cell phone with "someone." Aaaahhhhh the benefits of a younger sibling! LOL!!!

We had open house for Devin and Jacob this week. Devin will have the same 3rd grade teacher Michael had. Jacob is having a new aide and teacher this year. I think the change will be good, even though I will miss Lori his aide something terrible! I am concerned that the new aide and Lori haven't had a chance to talk at all. In fact, I think it's a little ridiculous. But who am I? Just the mom. I do feel like the new teacher will be very good for Jacob and has a great attitude about him. It's just hard transitioning. In fact, had I been told at the time of his IEP, in time to actually work on getting him into Kindergarten, I might have just done that. But, we will make it work.

I think I have the best poop story yet. Jacob has woken up the last 4 mornings with a huge mess. It involves changing the sheets, washing clothes, and hosing him down. This is what I woke up to this morning.

Yes, that is POOP on his face! ( I can just hear my sister Sandi saying ISH! right now!)

We don't have much planned for the weekend. Dave will take his mom to the rodeo in town for her birthday. That has become their tradition :)

Hope everyone is doing well! I will leave you with another adorable picture of our cat Cooper! LOL

Love, Karla

Wednesday, August 22, 2007 10:01 PM CDT

Hello! Yes, I am updating! I decided to save you all from my mood, so I haven't updated much. You know the saying, "If you don't have anything nice to say, don't say anything at all." Yeah...that pretty much fits! But since this really isn't about me and my attitude and more about this extremely cute boy I am lucky enough to call my son, I am doing a journal entry!

Jacob is still very shy about the whole, "It was my birthday" thing. He is so stinkin' funny. He is so looking 5 too. Unreal how big he has gotten. The whole baby look is pretty much gone. Oh and that hair is just raging out of control I tell ya. I had to trim the back a little since the whole fro look was getting a bit much. I love it though!!!! If I can tame the whole frizz part, it is mighty cute. The boys have come to realize that every place we go there are a minimum of 2 people who make a comment on his hair.

We went on a trip to Rochester today to pick up Jacob's night splints and AFOs and to get his wheelchair adjusted again. He is sporting some mighty cute frog AFO's. They are white/clear with a tree frog on the back. And green straps of course. Unfortunately there wasn't LIME green available, but green does the trick. And so with new AFOs come new shoes.

During our visit, we stopped for Chinese so Jakey could have his beloved broccoli. We have to laugh at how much he enjoys his food. He takes a bite and then looks up, like, "DANG this is good!" Devin says, "Mom! It's like he is a person!" To which I had to giggle. Kids are so darn funny.

Jacob is the proud owner of front row seats and back stage passes to Sesame Street Live on Friday night. Plus, we get Quiznos subs before the show. It should be a good time :) I promise pictures.

I hope everyone is having a great week!

Love, Karla

Sunday, August 12, 2007 9:30 PM CDT

THE MORNING AFTER!

This is Jakey on Thursday morning, the day after his birthday. What you don't know from this picture is that this was taken at 11:00 AM! LOL He had such a great birthday. We went out for pizza at Pizza Doctors. He LOVES pizza. He even ate some pizza with broccoli (his newest favorite food!)

They sang Happy Birthday to him at the restaurant.

We went home and opened presents. He got so many cool presents from friends from school, family, and some awesome ones from Hugs and Hope too. Here he is laughing at the crinkly paper.

And some more pictures of an extremely cute boy with his presents!

And even MORE cute pictures!

Get a load of this! These guys are NUTS! And of course Jacob has to be right in the middle of it!

We sang to Jakey and ate some cake. He didn't have any, but he was happy sharing :)

It's been a busy week tying up all the loose ends with the silent auction and benefit. Friday, I was excited to go out with our friend Jacklyn for lunch. She invited us to the races on Saturday. We got to sit in the VIP section and even better, we got to meet her mom too! Jacob LOVED the races. You'd think the loud noise would bother him, but he'd laugh or just sit there and enjoy it. He never ceases to amaze me. Here he is enjoying the races with Daddy.

Besides the fact that it was hotter than you know where, it was a lot of fun. Jacob was lovin' on Michael too. He is hugging us now.

There were fireworks at the end, and Jacob was laughing so hysterically hard, I thought I was going to drop him. When he laughs, his whole body laughs, especially his butt! LOL

Something else exciting....Jacob won front row seats and backstage meet and greet passes to Sesame Street LIVE! I know he is going to be so excited!!! We are all looking forward to sharing it with him. It cracks me up that the older 2 boys are just as excited. You'd think after a certain age, it wouldn't be COOL, but that is what is so neat about the boys, they love watching Jacob enjoy things. It truly is breathtaking watching them interact with him.

I don't think I ever shared that Dave and I took the boys to Wisconsin Dells the weekend before the party. Jacob went to respite and Dave and I just decided to go away for the weekend that Friday. It was such a wonderful weekend. The boys were totally spoiled. We went to Mt Olympus on Saturday and then went to Top Secret, the candy store, and shopping on Sunday. They even got to make monkeys at Build a Bear. Of course, each morning was breakfast at IHOP. We love that place! It was such a nice break and wonderful time to spend with just the boys. I know they loved the extra attention. It felt like we had been gone a week since we did so much in just 2 days. Jacob had a great time at his sleepover with his ladies. Always does :)

Hope everyone is doing well. Thanks again for all your support.

Love, Karla

Wednesday, August 8, 2007 8:39 AM CDT

HAPPY BIRTHDAY to my sweet, baby boy! Actually, I suppose since he is 5 now, he isn't much of a BABY :) The last 5 years have been a wild ride, but so worth it. Who would have thought one child could have made such an impact on everyone who meets him? He is definitely my hero.

Jacob was born at 8:30 AM at Methodist Hospital in Rochester. After 2 weeks of trying to get his lungs mature enough for delivery, week #3 was it, whether they were ready or not. My mom, Dave's mom, my sister and her family, and our family spent the night before his birth in Rochester.
Here we are the morning Jacob was born.

(Devin just saw this picture and said, "That picture was when you were young!" I always have said I have aged 10 years in the last 5 years. I guess an 8 year old just confirmed it!)

I remember walking the couple blocks to the hospital that morning. Pastor Dan met us there...our pastor came to baptize him after birth. My friends Crystal and Amy also were there for us. After a prayer with our pastor, we went back. After lots of prep, Jacob was born via c-section SCREAMING. He was my first baby to cry right after birth and boy did I need to hear that. He was rushed to a room right next door where they covered his back like a little burrito and after struggling to breathe, put blow by on him.

Within minutes, they brought a picture of my boy to me and taped it on the drape sheet in front of me. They told us he was 8 lb 8.2 oz on 8/8/02! As they opened the door in between to relay info to us, I could hear my boy crying. It was the best sound in the world. Dave went to be with him as soon as possible and shared the joy with all of those waiting in the waiting room. Not long after, Jacob was intubated and put into the transfer incubator. We went to recovery and our family, friends, and Pastor joined us for Jacob's baptism. I was the first to be able to see our boy as he was wheeled into me. It was such a happy and sad time all mixed into one because all I could do was touch him.

Pastor shared that today was a special day because not only was it Jacob's baptismal day, but Michael and Matt's as well. Michael and Matt were baptized together 9 years before that!

We all prayed the Lord's Prayer holding hands and Jacob was taken to St Mary's via ambulance while I was brought to my room. Knowing this is just how it had to be, was hard....I thank God that such a special person was waiting on the other end for my boy....Dr Kate Nickels. We have come to really love Dr Nickels and are so glad we have been able to maintain a close relationship with her and that she is able to see our boy GROW!

(Jacob's shirt says "MY MOM ROCKS" LOL)

I was able to watch Jacob on the TV from my room in St Mary's. That was blessing. Dave went to be with Jacob while I had the rest of the family and friends with me. The following days and weeks until he was able to come home were filled with surgeries, worries, stress, and LOTS OF LOVE toward our amazing boy!

Little did we know then what was going to happen in just a few short weeks....BUT today is not the day for those memories. Today is the day to celebrate a WONDERFULLY AMAZING BOY!!!!

We had a wonderful party for him on Sunday. The food was wonderful (anyone want some hotdogs, chips, cupcakes and cake?!?!? LOL!) and the entertainment was fabulous. The musician, Ken Lonnquist was so incredibly FUNNY.

Well, except for when he told Maya he was singing a very sad song about a cat, which got her SOBBING! Poor Maya! We had shirts made with Mama, Daddy, Bubba Michael and Bubba Devin, and Birthday Boy on them. He was calling me Mama in his Elvis voice and Dave Big Daddy. LOL I think everyone there had such a fun time listening to him sing and all his antics!

Here is Dave and Jakey listening to the music. This picture makes me cry.

Jacob laughed so hard at different songs and when the storyteller told the story of the wide mouthed frog, a story he knows pretty well, he laughed and laughed. I just love watching him enjoy things and really starting to understand them!!!!

We had lots of games for the kids. I was in my glory making them since I miss teaching. We had a cake walk with a round blue table cloth on the floor and lily pad numbers on them. We had Jacob's favorite songs playing on a CD. When the music stopped, they drew a frog with a number on it.

We had a fish pond, a ring toss with soda bottles, a bean bag toss with Beanie Baby frogs, and a tortilla toss from Taco John's. They had to throw a taco shell through a hole. LOL They won free kids meals at that game. We had face painting and tattoos (my niece is awesome at face painting!), and an art table with lots of art supplies.

Here's Devin getting his face painted by my cousin.

Sorry you couldn't see the frog my niece did on the other cheek!

My two favorite games though were the frogs and flies game and the frog jump. The frogs and flies game was a tote full of rice with frogs and flies (plastic ones of course!) hidden in the rice, along with money too! The kids had to match a frog to a fly. Here's Jakey playing the game.

The frog jump game had a diving board where you launched those plastic jumping frogs into the frog bathtub of Jakey's and tried to land them on a lily pad. We had tons of prizes to pick from (anyone want some of those too? LOL) and they could win a small, medium, or big prize depending on how they did.

My brother had 3 frog pinatas for the kids. They had such a blast breaking them! We had quite the clean up though from all the smashed peppermint disks! Devin had candy stuck all over his shirt. LOL Thankfully they washed off in the washer.

Festival Foods in Holmen donated an awesome cake, as well as two other bakeries. We finished the one from Festival and part of another one, but we still have a 1/2 sheet left.

My friend Robin made an egg free cake just for Jakey.

Schwan's donated ice cream too which was delicious. Anyone want to come over for cake and ice cream? LOL!

The two inflatables were a HIT! You could tell which kids had been outside bouncing because they were beat red when they came back in! LOL I am so glad the kids had such a great time. It was so worth it.

I had sent out invites to Jakey's friends from school and lots of them were there. I got some lovin' from them as they have become very dear to me :) They brought presents too which wasn't necessary, but very fun too. Some of Devin's friends and teacher came, as well as some of Michael's friends. Dave and I had lots of our friends and family there, as well as some of our church family and special people who have worked or work with Jacob.

I love this one of Jakey and my cousin Phylicia talking!

This is my cousin Kayla and Jakey talking and kissing!

This is Lori and I working hard! Lori is a good friend to our family and was also Jacob's aide the last two years!

And Dave and T-Bone talking about pork! LOL!!!! T-Bone catered the meal.

We had our honey Jacklyn there from CC106 radio station. I was so happy Jacob spent so much time TALKING to her!

It was good for her to see his personality coming out! Z93, another radio station, was there on location. AND the news came too! We had an interview on the 10:00 news. :) If you go to TV19 it is on there....well the written version. And no, I am not KAYLA! And what Dave meant to say was it used to be every day at a time, and now it's week or a month at a time. LOL

It was a very special day. We didn't get a lot of pictures, mostly because we were so busy just soaking it all in. We didn't video tape much either, but those memories are dear in my heart and that is what matters.

Today we are going to go out to eat at Pizza Doctors. Devin was trying to convince Jacob to say I DO! when he asked where he wanted to eat. Personally I think DEVIN wants to go there! LOL

Thanks to everyone for being there for us...whether you have known us in the before and after, whether you met us along the way, whether you met us because of the care you give to Jacob and our family, or whether you have never met us before and still care. I couldn't and can't do it without all of your love and support behind me. The last two days have been filled with tears over hurt feelings, realizations I don't want to deal with over and over, and some other emotional type crap that goes with raising a special needs child. Thank you for all the calls and emails about my "mood" and hoping I was okay. It's funny how some of those interactions came just when I needed them most. I am thankful for all of you.

Love, Karla

Monday, August 6, 2007 9:23 PM CDT

Hello everyone! I know some of you are waiting to hear how the party went! I am just not in a good frame of mind today to really want to take the time to share how it went. I will try to update tomorrow if things are better.

Karla

Tuesday, July 24, 2007 10:10 PM CDT

Hello everyone :)

It's really weird for me to think of Jacob being 5 years old soon. He's no longer a baby! So much has gone on in the last 5 years, that it's hard to even wrap my mind around where the time went, what life was like before Jacob was born, and yet it feels like SOOOOO long ago at the same time. The last few weeks have been a pretty intense time for me for lots of different reasons. This mama's heart feels so many things at once.

I've always been so impressed with the relationships we've developed along the way. We have the greatest group of people at our pharmacy. The other day I walked in there and everyone was wearing Jacob's buttons. It felt so neat to see them supporting us like that.

I also got a really cool email from the chaplain when I shared the news of Jacob's upcoming birthday with our Mayo family. When Jacob was inpatient, we had talked many times about why I chose the name Jacob, as well as sharing the stories of Jacob from the Bible. He wrote, "You named him so well--"wrestler with God," and I know you've done your share of wrestling too, not only with God but with us as well. May you have a wonderful day with friends and family and may God continue to bless Jacob and all of you! Interestingly, sometimes God's blessings have "a limp" or other "special needs"! Amen to that :)

Tomorrow I am going to the radio station to tape a promo for Jacob's birthday party. It should be fun. I love talking about my boy :) It should air on Monday morning sometime. I need to work on a couple more promos this next week. Things are coming together pretty well.

I found the cutest stinkin' baby bathtub with frogs all over it and of course I had to get it :) Check out the cute boy!

And to make it even cuter, here is a video of him splashing. First time he ever did this much splashing in the tub! It was so much fun.

The cool thing about the tub is that it is small enough to prop him in there and because it is a blow up one, he has some cushion to support him a little.

I'm going to close for now. Our cat has taken up residency on my lap/chest as I am trying to type this! Don't they always have to be in the middle of it? Here is some evidence of his cutest. Devin posed him the other day. And yes, he even let him put one on his wrist band. LOL

Love, Karla

Wednesday, July 18, 2007 11:34 PM CDT

Hello everyone! The countdown is on to the big 5! We are getting more and more things prepared for the big day. It's been a whirlwind of activity around here with plans and more plans being made. It all seems to be coming together nicely. Still need more helpers, but those are also coming together. I have buttons and meal tickets for anyone in the area who is interested. Let me know so I can get those to you.

Jacob is just doing so well. I am really enjoying this time with him. It's been the longest stretch so far. Today, we went to see Harry Potter and Jacob smelled the popcorn. Not only did he smell the popcorn, he obviously knew MOM was carrying it! So he whined and I asked if he wanted some. He smiled and said, "I DO!" so he got some. As we sat down, he couldn't eat it fast enough. Soon he learned that he could put his hand into the bag and get some for himself. It was the cutest thing listening to the little crunches and crunches as he ate his popcorn. I would take some pop into the straw and put it into his mouth. Boy, that was good too! LOL He just cracks me up. (and for all of you out there freaking out because he might choke, he was fine LOL)

Summer school is going great as expected. He loves to get on the bus and go to school. Annie, our dog, knows that when the phone rings and we don't answer it, it's the bus. So of course, she starts whining to go out since she has to say hi to everyone. Now the cat started following us out too. I think he thinks he's a dog. One more week of summer school and then Jacob will be done until Sept. Next year, he will return to FLC for one more year of preschool before going on to elementary school. The sad thing is the teacher he had for the past 2 years will not be his teacher this year. I am sure he will be fine. More of an adjustment for mama I think.

Not much else to report this time. It was nice to hear from some of you in the guestbook and by email. Take care!

Love, Karla

Saturday, July 7, 2007 3:41 PM CDT

Hello everyone! No, you are not seeing things, this really IS an update from me! It has been crazy busy. The kind of busy where you are doing a whole lot, but not really getting anywhere. We have been up to our eyeballs in cleaning out Lorraine's house and helping her move last weekend. Her new apartment is so cute! We are trying to finish up the house so that we can get rid of the dumpster and move onto other things, but it's a lot of work. We will get there someday.

We are also in the middle of plans for Jacob's 5th birthday celebration! We are SO thrilled. The more things start coming together, the more excited I get. We have entertainment now! His name is Ken Lonnquist, and he is a children's musician. I am so excited to have music there for Jacob since music is one of his favorite things :) We also have 2 inflatables which I have mentioned, about 10 games, face painting, and tattoos! We will also have pinatas that my brother is making and tons of other fun stuff for the kids to do. The buttons and posters are done. The posters are really cute! The buttons I think need to be redone. The picture is a little too close up. We are also waiting for the meal tickets to be printed, so once those are done, we will have tickets and buttons for sale! I noticed a guestbook entry saying there was problems making donations. Not sure if anyone else has tried it and it didn't work. Please email me and let me know if you have. We are still looking for people willing to work the day of the celebration, so if anyone would like to help, please let me know! I hope that I will be able to see many of you there!

Jacob almost got his first time out the other day. He has turned into such a whiner. He whines when he wants something. He is fully capable of saying "I DO!" and shaking his head yes or shaking it no. So if he whines and I ask him if he wants a particular thing, I expect an answer. Yes, this mama is turning into a demanding mama! It's so funny to see him understanding what is expected of him. I find myself saying, "Use your words!" just like I did with the other two and with the kids I used to teach :*) Very bittersweet. When he wakes up, I have him hold my hands and help pull himself up. Well, he has decided twice that he was not going to do a darn thing put lay there and expect me to do it. I simply said, "When you are ready to help sit up, I will come back," and I left the room! LOL Let me tell you, there was a SCREAM from the bedroom. I asked if he was ready now and he said, "I DO!" LOL!!!! And sure enough, the little stinker helped pull himself up. I really want Jacob to become as independent as possible. I know he will always require 24 hour care, but if he is capable of doing some parts of his routine, I think it is important to involve him in that. No lazy bones around here!

Jacob did the funniest thing in church last weekend. Pastor was saying a prayer and of course Jacob took this time to share his opinion in a very loud manner. I put him hand over his mouth and told him he had to be quiet in church. With a questioning look on his face he said, "I DO?" And I said, "YES, YOU DO!" LOL!!!!

I decided to take some time for myself this morning, so I met a friend for breakfast, then went and got my hair highlighted, cut really short, and brows waxed. I really wonder why us women feel the need to put ourselves through that torture, but they look so much better afterwards! LOL I figured that I'd get my hair cut short again since me and this heat don't get along too well. Someday I swear I am going to get over this lovely family curse of sweating on my head. Yes, I come from a family of head sweaters. Lovely.

Jacob starts summer school on Monday. I am sure he will be thrilled to be back with Ms. Marilyn. :)

I hope everyone had a wonderful 4th of July. We went to Riverfest in La Crosse for the 4th. We had a great time, even though there was a downpour just before the fireworks started. Not fun to be soaked, but Jacob sure loved licking the rain off of his arms! Anyone who knows my boy knows how much he LOVES to lick! LOL

Love, Karla

Tuesday, June 26, 2007 8:25 PM CDT

Hello! Can you say HOT?!?!? It was a warm one today.

We spent most of the weekend getting Lorraine's house cleaned out. We are starting packing more of what needs to be moved. I think we are finally getting somewhere! Sunday is the big move in day.

Jacob spent the weekend at respite. He absolutely loves it there. It's so cute when I say goodbye to him now, he starts whining. And then smothers me in love and kisses. LOL When I come to pick him up, he starts giggling when I say I missed him. It's so stinkin' cute. It's gotten much easier to send him now. In fact, I went from calling 3-4 times a day to calling only once a day. Pretty darn good huh??? :)

Good news...funding is ready for the bathroom! I called the contractor today. He said he is busy in July and will call me back to set up a start date. So it will probably be a while yet...but we are getting somewhere.

I have a story for ya. Devin calls me today when I was out to inform me that there is a BAT on our window screen in the living room. Okay, if you know anything about me there are two things that totally freak me out, bats and mice. So I am thinking he is trying to freak me out, but I guess it was true. So I get home, the bat is gone THANK GOD! I get in the shower and when I get out, Devin had put a toy bat on my towel. And all I heard were giggles coming from outside the bathroom door as I scream. He is such a SNOT! LOL

Not much else going on. Check out the pics on the photo page :) Please continue to keep us in your thoughts and prayers, especially as we continue making plans for Jacob's birthday celebration!

Love, Karla

Thursday, June 21, 2007 11:44 AM CDT

Hello everyone! Finally an update! Last Friday, we went to Mayo to pick up Jacob's bike. It is really nice, even though the company didn't send all the pieces! Jacob thought he was hot stuff of course. The real challenge was trying to get the bike to the van. So here we are thinking we'd let Devin ride it. Sounds easy enough huh? Well this bike is a hand pedal AND foot pedal. Kinda like rubbing you head and patting your stomach at the same time. Devin could not coordinate it whatsoever. Well, for maybe a foot at a time! And wouldn't you know it the second the PT said GOODBYE the problems got worse. I swear there is some kind of law or maybe a curse that happens the second you get a piece of equipment and the door closes behind you! I am sure other special needs moms can vouch for that! So just picture it....the bike not cooperating, a mother ready to throw said bike through the window, and a kid saying, "I CAN'T DO THIS!" Imagine said mother once again ready to throw the bike through the window as some complete idiot choses this time to comment to another about how WONDERFUL those kind of bikez are! And imagine said mother leaving her children in the atrium so she can go to the Mayo Store to pick up some supplies simply because the thought of hauling this stupid bike down a long hallway is too much. Besides, who would want to kidnap two kids and a bike???? Imagine this mother now pulling a bike behind her because her child refuses to ride it and with every step you hear clop clop as the foot guards on the pedals hit the floor and echoes throughout the whole building. Imagine mother finally getting to the door and then once again ready to scream asks the door attendants to watch her children because the thought of taking the bike another 2 blocks is nauseating. I think the door attendant knew just how upset this mother was because not only did he watch her children, but also brought the bike out to her van when she pulled up! LOL!!!
Honestly, it's a nice bike and Jacob does really like it. I will post pictures on the photo page sometime today if I get to it.

The birthday celebration is coming along fairly well. I've been busy getting things organized. The pictures turned out wonderfully! We are in the process of getting buttons and posters made now. We have the food and hall set, ordered some inflatables and will also have games for the kids. It's been busy, but a GOOD busy!

We are continuing to pack and clean at Dave's mom's house. She will be moving into her apartment on July 1st. We had lots of help last weekend, which was great.

Here are some other random thoughts.

I went grocery shopping last night and it is still so weird not to go down the baby food aisle. I did that for years, and now here we are eating REAL food. I tell ya, none of us get tired of watching him eat. It is so amazing. I just can't get over it....Some of his favorites now are strawberries, watermelon, pizza, well actually everything!

The hospital bed was delivered on Tuesday. It's nice. I just wish it was more my idea than other people's. But it's nice. I like that I can put the head of his bed up. The new bedskirt I had made doesn't work the best. But oh well. I am having fun doing his room in frogs.

We are waiting for the hoyer lift. Once again not my idea. But since the home health won't give him a bath without it, since he is a whopping 40 lbs you know, we have to get one.

The funding for the bathroom is being processed soon I hope. We found out today that CMN will help fund the tub since the other funding is either a tub OR a shower. Hopefully this will take place before he turns 18. LOL

We saw the new pediatric specialities floor at Mayo yesterday. I can't wait for Jacob to have another appt! It is beautiful!!!!

Hmmmmm......I don't know what else is newsworthy going on around here! LOL If anyone would like to assist with the birthday celebration, let me know!

Love, Karla

Wednesday, June 13, 2007 9:09 PM CDT

Is there anything as good as a chocolate Go Tart? Obviously not. Do you not just LOVE that face?!?!?!? I just cracked up when I came back into the dining room to find not only was there a lot of chocolate on his face, but that boy did not miss a bite! Usually I find a lot of food on the sides of him, but not this time! LOL

We are keeping busy cleaning out Lorraine's house, packing, cleaning, packing, cleaning, keeping track of everywhere the boys need to be, appts, cleaning, nurses' visits, not just for Jacob but for Lorraine as well, and cleaning. It's been nuts this past week. Tomorrow is another busy day. Amongst all of this, I am continuing to do work as the Parent Liaison for the school district. I have a meeting, so Jakey and Devin get to go play with our friend Aimee in the morning. I know they will have a blast. Then Friday, we will pick up Jakey's bike at Mayo! YEAH! I promise to send pictures :)

Another big event coming up is Jacob's 5th birthday! We are having a huge celebration for him. It will be August 5th at the American Legion in Holmen. We are in the planning process now. We took pics on Tuesday for the buttons and posters. If anyone living in the area would like to help out with it, let me know. I am also open for ideas. We are going to have it like a big birthday party, so the focus will be on the kids. We are also looking for silent auction and other donations. If anyone would like to make any kind of donation, you can mail it to the PO Box address listed below. We are so excited to be doing this!

Hope everyone is having a great week! It's been wonderful hearing from so many of you, especially friends we have met along the way, friends from RMH, online, and our church. I appreciate all your love and prayers :)

Love, Karla

Tuesday, June 5, 2007 5:27 PM CDT

Hello everyone! Thank you for all your replies to my sucky mom moment. It sure is hard being the mama sometimes.

Everyone is hanging in there. Today was the beloved last day of school. I am looking forward to sleeping in :) Hopefully the boys won't want to rip each other apart tomorrow already...if so, it will be a LONG summer! We don't have a lot planned, but I am sure we will keep ourselves busy. Between doctor visits for me, Lorraine, and the boys, the next few weeks will be busy enough.

Lorraine is feeling much better. The blood sugars are looking great. Thank God, since I was starting to feel a little too comfortable with the paramedics being here! LOL Yesterday, she got her stitches out too. This weekend we have the task of starting to clean out her house and work toward moving her into an apartment. It is going to be quite to process. Please send thoughts and prayers our way for limited stress during this process...We know it won't be easy.

Jacob is just incredible as always :) He is doing the FUNNIEST thing lately. You say something to him and he says HUH? My favorite is last night at 12:30 AM when he was STILL jabbering...the conversation went like this: Jacob, you need to go nigh night!
HUH?
I said you need to go nigh night!
HUH?
Jacob, it is time to go to sleep!
HUH?
ZIP IT!

LOL!!!! I love it :)

Jacob is also in his gait trainer/Pony every day. We have seen some nice leg movement. Here he is watching Barney. He gets even more excited than this, but you get the idea :)

And the next clip is of Jacob laughing at Michael playing with the dog. When I took this clip, he was laughing so hard he was almost crying, that's why he sounds like that.

Hope everyone is having a great week. I love hearing from you, so sign the guestbook please :)

Love, Karla

Thursday, May 31, 2007 9:33 PM CDT

Sometimes I feel like I suck at being a mom. Michael had his 8th grade farewell party tonight. He told me that they were having a dance and party for their last year at the middle school. So here I go to drop him off for his farewell party and see all the vehicles there. Obviously other parents were there for something, but of course this parent had no idea what was going on. Oh and here is my child wearing shorts and a t-shirt while I see others walking in dressed up. And wouldn't you know that they were having a graduation ceremony. Now where have I been? Of course, some of the responsibility lies on Michael to actually TELL me the whole story behind this farewell party, but of course I can't help but feel that I suck....

It's been a crazy day. The nurse AKA the garbage Nazi (that's a whole other story!) came for just an hour this morning because we needed to go to Jacob's school for a picnic. There wasn't enough time to talk to everyone I wanted to talk to plus eat. I tell ya, I know too many people! Then I had to run my mother in law to the clinic quick for her appt, run to the other clinic across town for my appt and then back to pick her up. Of course today is the day the battery in the van decided it was no longer going to work. Thankfully, Dave was home from work early so he came to jump start the van. We were able to get home and then Dave set out to buy a new battery. He was gone doing that when I was summoned to bring Michael to school. Of course it was right in the middle of making tacos. And do you think that when I got home anyone had finished making the tacos? Of course not!

Today was Jacob's last day of school. It's hard to believe he has been in school two years. He has come so far from the little boy I put on the bus his first day of school. We are set for summer. We were able to bring home a bunch of the things he uses at school. We are going to have our computer set up so he can play on it and not lose his skills over the summer. He will go to summer school too with Miss Marilyn, which will be nice since he loves school so much.

Hope everyone is having a better day than I did! LOL

Love, Karla

Thursday, May 31, 2007 9:33 PM CDT

Tuesday, May 29, 2007 10:39 PM CDT

As if last Wed, Thurs, and Fri weren't exciting enough...Sat we once again got to call 911. Lorraine's blood sugar was 31 this time. From her symptoms, I knew where she was going. So once again, she had a trip in the ambulance to the ER. This time, the doctor took her off of her diabetes pills for the time being and just keeping her on her insulin. Since then, everything has been fine. She is getting around much better and looks better every day. I am also doing better. Still feel a little weird after my lovely spell, but on the right track. It still amazes me what the mind will do. Just keep that tape away from me and I should be fine. I think Jacob's nurse wants to write that in his chart. LOL

We are very excited to say that Jacob is getting a BIKE of his very own! There is a company that offers scholarships for bikes for children with disabilities. It will have all the straps and buckles we need to keep him where he belongs, along with a handle for me to push him. Can't you just see it now? Jacob cruisin' on his bike :)

Another new big step...Jacob sat at the table with us tonight on a booster seat! We are borrowing it from school. It was so neat to see him sitting right there at the table instead of his high chair.

Only 2 more days of school for Jacob. Michael and Devin's last day is June 5. Hard to believe it's that time of year already!

Love, Karla

Friday, May 25, 2007 11:31 PM CDT

Oh my....what an update I have. Wednesday, my mother-in-law Lorraine had surgery. Everything went really well. Thursday it was time for discharge. The nurse wanted me to watch a dressing change. As the bandage came off, I felt a little whoozy, and then she opened the tape....Now most people would have been fine, but not this chicky! Not only did I feel whoozy, the black spots started to form before my eyes, my ears were ringing and no sooner had I sat in the chair, and I was OUT. The next thing I know, I hear the nurse trying to wake me up, yet my eyes didn't want to open. And then I got sick and started throwing up. Yes, it was quite the site. (I can hear my sister Sandi laughing already!) So here I am, passing out, puking, and not wanting to respond much, other nurses are flying in the room, I am rushed out to the ER, just in time for them to get Dave's phone number. Thank God, Jacob was at school! I remember part of the ride to the ER, especially when the nurse went around the corner and the world was spinning again. The whole time I couldn't open my stupid eyes! So I get in the ER, hooked up to the machines, they put in an IV and get some fluids going. I do remember that it hurt. I also remember having to stand up and sit down to check my blood pressure and my trip for a urine sample. But my eyes were closed the whole time expect for a peek here and there. I got some nausea meds which knocked me out the rest of the day. I woke up a couple times for a few minutes, but went out again. I finally woke up at 7 this morning. I past out at 12:30 on Thursday. Anyway....so I am sure you are all wondering why? Well, the surgery was done on her back about the same area where Jacob's spina bifida lesion was. AND the tape was the exact same one they always used on his in the hospital. The smell of that tape just brought back that memory and I was done for the count. So much for me helping Lorraine! In the middle of my ER visit, Dave comes in. Thank God for that. I was happy to see him. I still can't believe such a thing could bring on such a strong response, but wow. That was horrible.

And the story just gets worse! This morning, I tried to wake Lorraine up to take meds and eat breakfast. She wouldn't wake up for more than 2 seconds. I called the doctor, got some ideas from her, then tried to take her blood sugar. It didn't register. I tried 3 times. By now I was getting really worried, so I called 911. The ambulance was here in now time at all and guess what? It took 5 times for them to get a reading. It was 10! So they started an IV and gave her some sugar to bring it back up, then brought her into the ER to make sure everything was fine. She stayed for a few hours, then Dave brought her home. I tell ya....what a bunch we are!!!

Jacob's doing great though! At least something is going right. LOL He was able to be in the PONY gait trainer on Wednesday and went into the Little Room at school on Thursday. He loved both of them. We got some Braille books in the mail today from a lending library. Jacob has started scratching at Braille. Not that I expect him to read by any means, but it is a good idea to expose him. One of the books is Five Little Monkeys. He loves that song anyway, so as I read it to him, I had him trace the Braille. It was pretty neat :)

I am hoping for a quite weekend. My mom and stepdad are coming over tomorrow night, so it will be nice to visit with them too. Nothing else planned, hopefully no more passing out!

Love, Karla

Monday, May 21, 2007 10:30 PM CDT

Two prayer requests tonight. Maya had surgery today to remove her gallbladder and replace a central line. She is in the PICU tonight. Also, my mother-in-law will be having back surgery to repair two ruptured discs on Wednesday. She had her pre op appt today, and everything went well. Tomorrow, she sees the surgeon and will find out what time her surgery is. Hopefully it will take care of the constant pain she is in.

We had an awesome time on Friday at the private VIP Blue Angels show.

Afterwards, only the Make a Wish kids we were able to meet all the pilots and get autographs and pictures with them.

When we were done at the fest grounds, we brought Jacob over to respite. When I told him goodbye, he started whimpering. That is another first for him! To realize what it meant for me to leave. He had a great weekend of being spoiled :) It has been so nice to have some place we can trust. Jacob was so darn funny when we came to pick him up on Sunday. I told him, "Mama missed you!" and he giggled so cute. I'd say it again and he'd giggle again. The "I'm so happy to see you!" kind of giggle. I just love it!

We took the boys to Shrek 3 afterwards. Jacob laughed quite a few times at the funny noises. It's so neat to see how far he has come even with going to the movies. He used to scream from the loud sound. Now he sits on my lap and eats popcorn and drinks pop. It's so funny to see him fussing because he knows I have something to eat. And yes, for all of you who are wondering, I am very careful with the pieces I give him. LOL

The school year is winding down. Hard to believe actually. Now I have to get used to kids here all day again! I am sure we will find something to keep ourselves busy.

Hope everyone is having a great week!

Love, Karla

Thursday, May 17, 2007 8:18 PM CDT

Okay....I had an entry almost done....actually I have been working on it on and off all day....and what do you know? The battery on my laptop died before I noticed it. Nice. So let's see if I can remember what I wrote!

Jacob's IEP went wonderfully! It is my goal to make it through just one IEP without crying. I guess I can't help it when I realize how far he has come and to see just how much he has blessed everyone who works with him. He has met most of his OT goals. He will continue working on using a spoon and drinking from a straw. He will also start working more on manipulating things and playing with toys. This is also a vision goal. PT will continue working on rolling, pushing up on arms, and riding his bike, using the creepster crawler, and the gait trainer. Jacob is doing so good in the pool. He is floating on his back with little support and will even put his face in the water. He has reached 5 of the goals in his auditory scanning. We are going to continue working on that over the summer at home. Jacob will work on lip closure in hopes to drink from a straw and to also work on sounds using the lips. Jacob's made nice gains in his vision. He will reach out and spin a spinner on a light box. He is seeing about 1 foot in front of him. We had quite the crew there for his IEP. Teacher, speech, OT, 2 PTs, adaptive PE, adaptive technology, nurse, school psychologist, vision, social worker, and of course mama and Jakey :)

Monday was a Mayo day. The dietician was thrilled with his progress. He is 40lb, 5 oz and 40 inches long. Physical Medicine was also pleased. His contractures are the same. His feet however are getting very tight. The doctor said if they have to get tight it is best to get tight in this manner instead of with his feet pointing down. Jacob's wheelchair was adjusted too. He has grown wider. LOL

Michael turned 14 on Tuesday. It doesn't seem possible he could be that old already!!! He is almost as tall as me, and he is looking so mature! We went to Pizza Doctors for supper. Jacob was so funny eating...he couldn't eat fast enough!

Devin had a field trip yesterday, Jacob had a field trip today, and Michael has one tomorrow. Jacob went to the farm today. He seemed to love being outside. Here he is petting a baby lamb.

And a goat. He thought that was cool :)

He even touched the eggs from the chickens.

The kids really seem to like Jacob. His friend William asked if he could be Jacob's partner :)

Here are some more fun pictures from the last week.

Playing pool with Daddy!

Jakey being a goof!

And Jacob jabbering!

My extremely cute boys!

My mother in law will be having back surgery next Wednesday. She has 2 ruptured discs. Please pray for a successful surgery, quick healing, and a break from all the pain she is in.

Hope everyone is having a great week! I sure enjoy hearing from all of you!

Love, Karla

Wednesday, May 9, 2007 6:11 PM CDT

Hello everyone! We are doing pretty well overall. Last Wednesday, we were part of a video recorded for Ronald McDonald House. We stayed at a hotel Tuesday night, which the boys loved since they could go swimming. All day Wednesday, we were at RMH doing taping and spent a lot of time waiting. They had meals and snacks throughout the day. Ronald McDonald was there. He was so funny.

Notice the left leg? He always wants his leg stretched out like that!

Jacob is being SHY. He is so goofy! We had a great time. The video is geared for kids to show them what the house is like.

This weekend, we traveled to my brother's house. Dave and the boys and my brother and his 3 boys went on a camping overnight hosted by my brother's church. They rode on a wagon pulled by mules,

watched a blacksmith make nails,

ground corn and made cornbread,

and had devotions on Friday around the campfire. They had a great time. Jacob and I hung out with my sister-in-law. Saturday night, my brother took us to see Spiderman 3. It was so AWESOME! Then Sunday was church and out to eat afterwards before we left. I had just gotten Jacob's food when the waitress came with drinks. She spilled a couple glasses all over Jacob and the table. I pushed him back quick, they were cleaning up the table, and asked if he was okay. I looked back at him and here he'd grabbed his breadstick and chicken nuggets in the split second between the time I set the plate down and the pop was spilled, and he was just chowing down! LOL!!!! I tell ya, I still laugh thinking about the look on his face. I think we all could learn a lesson from Jacob's response. Most of us would have been ticked, but not him! :)

I have been busy changing Jacob's room from a Barney room into a frog room. I figured since he is going to be FIVE this summer, it is time for a big boy room. It is turning out so stinkin' cute! If anyone has any cute frogs or cute frog ideas you'd like to share, let me know :)

Jacob's IEP is scheduled for Friday morning. I am excited to hear about all the progress and to set new goals for him for the coming year. Jacob will stay in preschool one more year before starting Kindergarten.

Next Friday, we have been invited by Make a Wish to see a private viewing of the Blue Angels! We get to sit in VIP seating and have an up close view of the show. We are all looking forward to it.

Hope everyone is having a great week! We are getting close to 100,000 visitors. If you are visitor 100,000 please let me know!

Love, Karla

Monday, April 30, 2007 8:24 PM CDT

Saturday was Devin's 8th birthday. Hard to believe he could possibly be that old already. By looking at him, you'd never guess he was 11 lb 1 oz, 22 1/2 inches at birth. He's actually smaller for his age! He had a wonderful day, complete with a birthday party with friends at the Y, and a dinner date with Mom and Dad. Of course, in true form for our family, nothing can ever be too easy. Within 15 minutes of starting the birthday party, one of Devin's friends had slipped on the steps going to the waterslide and cracked his eyelid wide open, from one side to the other. His mom had to bring him to the ER and luckily they could glue it shut without needing stitches. Since Jacob was at respite, we needed SOME kind of excitement! LOL Devin chose to go to the Chinese restaurant for supper. It was really nice for Devin to have some special time with us, with Jacob at respite and Michael with his dad.

Respite went wonderfully this time....no ambulance rides, no emergencies, nothing. He had a fun time with the ladies, and I think they fell in love with him. This time, he is staying at a children's home instead of a private home, so I think it will work better. Two kids live there full time and there is one respite bed.

Sunday, we had a family birthday party for Michael and Devin. it was a good time seeing family and friends. My niece Lauren is 6 months old already. And extremely CUTE! It was so neat to see her and Jacob together. She was loving on Jacob so gently. Everytime Devin came by her, she'd grab his face, take off his glasses, and kiss him. The funny thing is, she only takes off Devin's glasses, no one else's!

Today, I got a progress report from his Adaptative Technology teacher. Jacob has achieved his initial goals with the auditory scanning. Both Dave and I got teary-eyed because we just don't get to see ACHIEVED in writing very often with him. He went through all of Birth to 3 with only 1 goal achieved, and so far this year, he has totally blown the top off on so many things. It's awesome. If he is able to go on to the next levels of this auditory scanning, we can hope and dream for him to make very relevant choices in every day life. The areas which may be hard for him to communicate his wishes can be opened to him. I have seen so much more "UHH UHH!" stuff going on when he wants something. And then cries when we don't figure him out right away.

And to think it's been 5 years ago today since we first learned of his disabilities on that initial ultrasound....I tell ya, that day is forever etched in my brain as one of the most tramatic things that has ever happened to me. But look at us now, we are still standing....not only standing, but THRIVING.

Love, Karla

Tuesday, April 24, 2007 11:44 PM CDT

Two journals in a row....wow. I just had to share two amazing things that happened today.

Jacob was sitting in his highchair eating supper. I look over at him, and he is trying to use his fingers more individually to pick up his food. Smaller pieces seem to be easier for him and more accurately getting to his mouth. I notice he will bend his pointer finger in so he doesn't bite it :) And his hand is opening to shove the food from his palm into his mouth. He is using his vision to find the food on his plate and when it is out of his field of vision, he gently searches for it. His hand hovers over the plate, following the curves of the edges until he finds it. I could sit there and watch him all day...he just seems to really enjoy it. Watching him, you'd never guess he ever had serious gagging issues. It's amazing.

As I was getting him ready for bed tonight, I was thinking about how much time it takes to get him ready for bed. Not a complaint, but a thought. I wasn't talking to Jacob at this point, just putting his jammies on. At that point, Jacob says, "I LLLLLLLLLLLLAAAAAAAAA!" which is his way of saying I love you. It was with great force and a lot of extra LLLLLL sound going on. Amazing. He was thinking about how much he loves me at that moment and I too realized again how much I love him. It doesn't matter how long it takes to get him ready for bed. I am just happy I have him here with me, telling me how much he loves me.

Love, Karla

Monday, April 23, 2007 6:56 PM CDT

Sorry to keep you all waiting. It's been an interesting week. Last Monday, Jacob had Spina Bifida Clinic. We saw Dr Moir, the surgeon who placed Jacob's feeding tube, to talk about the stupid redness that was around his tube since stopping feedings at night. We are working on a new plan of nystatin and critic aid together. Seems to be helping. He thought it may be from some gastric fluid leaking onto his skin since his tummy is empty at night. Dr Moir was SO impressed that he is eating on his own now. He told me how wonderful Jacob is doing and what a great job I am doing with him. I took this as a great compliment, especially coming from a surgeon :)

Next, we saw the PT, Deb our nurse, and the social worker. While we were talking, the neurologist walked in to join the big old party in the room! LOL It sure warms my heart to see how many people love and care for Jacob. We sure have been blessed with an amazing team. The neurologist wants us to start Jacob back on Topamax, a low dose, to hopefully help with the startles. She explained that in some kinds of CP, the infant startle reflex never goes away. She has seen 3 kids now that these startles actually turn into seizure activity. They are all associated with sound. We will keep his other meds the same.

Tuesday, Jacob had a little urological issue which was not so fun to deal with. Let me just say, I wasn't ready for that one. Everything is fine now though. We are also starting a bowel program with him as part of his spina bifida treatment. Hopefully it will help with the blowouts. We are also looking into another possible bowel cleanout which has proven to be helpful without needing surgery. I will know more on May 14th when we go back to Spina Bifida/CP clinic.

The rest of the week was spent getting ready for our rummage sale. Holly and I had a sale Friday and Saturday. My whole neighborhood has one. It was a lot of work, but a lot of fun too. Jacob's aide at school watched him on Friday, on her day off! He loved it so much :) I think she enjoyed snuggling too. Then Saturday, Jacob's bus buddy Aimee came over for a visit with her mom who works at Jacob's school too. It was a really nice weekend. Sunday, I slept 4 hours in the afternoon because I was SO tired! LOL

Jacob will go to respite on Friday morning. We are looking forward to it. Devin's birthday is on Saturday, the big 8! He will have a swimming party with friends that day. Sunday, we will pick up Jacob and then have a party with family at our house. I am hoping for a nice weekend....one that doesn't involve an ambulance this time!!!!!

I am going to work on getting new pictures on here :)

Love, Karla

Saturday, April 14, 2007 9:08 AM CDT

I was reminded the other day by Holly how I had once said, "I wish I could just sit Jacob in his highchair and he could feed himself, but I can't. I have to sit there and feed him." And this was not so much of a complaint, as a fact. In order to make our day somewhat flow, we knew that we had to take that extra time each day to include his feedings. I think that it really struck me the day I made that comment to Holly. I had been made aware from others how they were able to just place their kids at the table and that was it. Most parents can easily say that their child was feeding themselves for the most part before a year or shortly there after. That was not us. In fact, I was lucky to get him eating babyfood.

Not anymore. You see this child of mine has decided to show his independence. Something I am not needed for, other than to place the food on his tray. Yes, Jacob has started feeding himself by grabbing whatever you have placed before him. If it is large enough to pick up, he gets it to his mouth in about 2.2 seconds. The last two mornings, I am of no need except to occasionally gather the food from his lap or give an occasional drink of milk. He doesn't need to scream at me for another bite because he is doing it all on his own.

It's quite amusing to watch actually. The vision we were unsure of him having seems to be more evident. He reaches accurately for his food. And when it is outside of his field of vision, he has figured out how to search for it. Sometimes all four pieces of his toast are picked up at once and shoved into his mouth. As soon as he has fulfilled the purpose of taking a bite, he quickly drops the food. Then chews and picks it up again. It is quite humorous to watch him just DROP it. And the look on his jelly-smeared face is priceless. He gets this "I am so cool" look on his face as he bites and chews. I was unsure of him being able to handle the banana once it got slimy from being held over and over. No problem being able to grab that too. He is starting to be able to pick up smaller and smaller pieces. The dream of him using his thumb and pointer finger together isn't looking so far away now.

Special needs parents quickly learn to live in the here and now. That is not to say we don't dream of the future and set goals for our children. It just means that most times TODAY is what is important and the worries of TOMORROW are great. When all the dreams of what you experienced with your other children so quickly disappear, sometimes without you even realizing it, you must learn to dream new dreams, see life in a different way. You sometimes get so involved in this new life that it is great to be reminded how far you have come. No, Jacob may have not rolled, crawled, walked, and talked like his brothers did by this age. But Jacob has made HUGE strides in his ways.....And for that, I am ever so thankful for the jelly-smeared boy sitting next to me and the friend who reminded me of the dream which has now come true.

Love, Karla

Tuesday, April 10, 2007 10:06 PM CDT

Hope everyone had a great Easter. I had very good intentions of taking the kids to an Easter egg hunt but between Jakey puking from the wind in his face and the lift not working on the van, yes the new van, we stayed home. I get so sick of chaos, nothing going the way it is "supposed" to. Just once......it would be nice to do something without the juggling act. But that's just life I guess. Otherwise, our Easter was pretty nice. I always enjoy the church service. So beautiful.

Here are some pics of the boys coloring eggs. Michael was with his dad, so he isn't in the pictures. We were careful for allergy boy not to touch the eggs. LOL

And the ever famous, "This is my nose!" pose when he gets shy!

Oh, and have you ever known a kid who gets so excited when you are done dying eggs to instantly say, "Can I eat them now?!?!?" Devin is such a GOOF!

Jacob's tube site still looks so red, even though we have tried the cream. It is not yeasty looking, so the nystatin powder doesn't work either. I am using a 2x2 split gauze on it, which is at least keeping it drier. Jacob started on antibiotics for it yesterday, just in case it is infected. I think something is going on because he is still jumping everytime you touch it. We are going to Spina Bifida Clinic on Monday, so we will also see Dr Moir, the surgeon, to get his opinion on what the heck is going on. I worry because his shunt tubing is also in the general area of his feeding tube. I certainly don't want that to get infected!

Today, we had a consult with a PT to help the nurses figure out how to lift and bathe Jacob as he is getting bigger and heavier. Jacob's trunk control is like that of a 2 month old and his legs just flop, so it is getting harder. Of ccurse, none of these things are going to be easy, and of course, we are going to have to wait forever for our bathroom to be remodeled, so here I am listening to how we need to do this and that. And I honestly can't be upset at anyone because it's the truth. But sometimes I just get so sick of it all. He's just my son...not the disability, not the extra crap we always need to figure out. It just gets old.

As you can tell I am in a delightful mood.

On a good note, Jacob's officially a big boy!

Yes, he is sleeping in a big boy bed. He is so proud of himself. And so are we :)

Here are the pictures displayed at the McDonald's in our area. Our picture was taken for advertising for the Ronald McDonald House. Pretty cool. Jacob looks so little in the picture!

Here is a close up.

One night, Jacob was done eating, and I decided to just let him sit in his highchair for a while. I took off his shoes, AFO's, socks, and MedicAlert bracelet I have him wear on his ankle. I set the socks and bracelet on his tray. Obviously he was still hungry! LOL

Hope everyone is having a great week! Please sign the guestbook and let me know you stopped by!

Love, Karla

Tuesday, April 3, 2007 12:13 PM CDT

Hello everyone! It's been a busy few days once again. We are happy to say that we got a new van a week ago. It is a full sized van with plenty of room for the boys. Jacob is in the back, we got another EZ lock put in, since it had tiedowns, and the boys are in the middle. There is plenty of room between them, so they don't have to touch each other. Always a plus! There is also a TV and DVD player which the boys love! We were able to drive it to the conference a week ago and again this weekend when we took a trip up to the cities to visit my family. Devin informed me that we needed to go for a long ride to try out the van. It was very comfy as he says. LOL

Jacob's feeding tube site has looked so bad since we stopped tube feedings. It is fire red and sore. Now he is flinching everytime we touch it. Our nurse at Mayo was as concerned as we were, in fact, Jacob kept her up this weekend worrying about him! LOL Anyway, we brought him to Mayo yesterday and had the surgery nurse practioner check it out. She wasn't quite sure why it looked like that. She told us of a cream to use on it and hopefully that will help. So far, I don't see any difference. We also changed the size of tube we are using. You don't want to get too big though either. Once again, Jacob is in the "HMMMMM.....I've never seen that before!" category.

The kids will start spring break tomorrow. Michael has been home this week though with a nasty cold. He was so generous to share a pop (or a SODA as some of you may say!) with me the other day, so guess who else has it? At least I know that I taught my boys to share effectively!

We are looking forward to Easter, with Easter egg hunts, a visit from the Easter bunny, spending time with friends and family, but mostly, celebrating the awesome gift of eternal life our Savior gave to us.

Love, Karla

Friday, March 30, 2007 10:14 AM CDT

It's over a week later and I am finally doing an update. Honestly, I was going to do one on Monday. Not sure what happened to all the days in between!

Jacob had his EEG last Wednesday. My boy once again proved his brilliance. We walked in for our appt and as the nurse touched his hand to take his blood pressure, he started sobbing. Yes, my boy thought he was getting blood drawn. He knew he was at the clinic, he knew there was a chance of him getting hurt. Oh how he is figuring things out :) And so I got my first chance at comforting him and trying to explain to him that he wasn't getting an owie. It felt so normal. It amazes me how many connections are being made!

After getting the "cute" little EEG cap on and all the connections on, they started the video recording as we tried to evoke seizures. The tech dropped a clipboard, which instantly got the startle we have been seeing. She did this a few times and then he was able to adjust to the noise coming from that area. Plus, he was looking over to that side. I explained that he was used to it now, so she'd have to move to evoke some more. And sure enough, he startled pretty good that time. Once again, he adjusted to where the sound was coming from, and in true Jacob form, soon found the dropping of the clipboard extremely hilarious. It was obvious that he is having small seizures brought on by noises. It's also obvious to me that his vision is a factor in it as well. As soon as he was able to look toward where the sound was coming from, he was fine. When he wasn't aware of where it was coming from, he'd seize. So now we are increasing his valproic acid and hopefully this will help. Next step would be to start back on Topamax, but then we deal with the kidney stones again. We are also going to be more aware of talking him through noises as they happen or before they happen so he doesn't get startled so easily.

Last weekend, we went to the Wisconsin Center for the Blind and Visually Impaired Preschool Conference. It was such a great time, as always. I added pictures to his photo page. We had wonderful sessions and the most incredible keynote speaker, Chrissy Nelson. She shared her journey with her son Stephen, who despite severe disabilities, lived a beauty life of experiences, love, and laughter. He went on to write a book of poems about his life and experiences, including some incredible insights on God's Love and heaven. All of this from a child who was thought to be in a vegetative state initially. Using a switch and a recording of the alphabet, Stephen gave us a look into the heart of a special needs child. Reading this collection of poems, I couldn't help but stand in awe and KNOW that all the things I am doing for Jacob and with Jacob are special and important to him. That whether he can say it in words or not, he does enjoy his life and there is a special connection he has with God. You can learn more about Stephen on
Stephen's Hope Foundation

I am hoping to take the boys to an Easter Egg Hunt tomorrow if it's not raining! I think this year will be fun now that Jacob can eat :)

I will leave you with an incredibly cute picture of an incredibly cute boy!

Friday, March 30, 2007 10:14 AM CDT

Tuesday, March 20, 2007 8:07 PM CDT

Get this. We were at Target last week in the Easter candy aisle. Jacob started yelling at me, carrying on, and acting like a little brat. I told him many times to knock it off. So then I finally realized why he was screaming (yes I am a little slow sometimes) and asked if he wanted a treat. Well wouldn't you know it that Jacob knew where we were. Next to FOOD! He started smiling and talking all excited. So we go to the checkout and then he really started screaming at me. I grabbed a Kit Kat at the checkout and asked her to scan it quick. Gave it to him and he instantly CHOMPED on it! AND stopped screaming! LOL Meanwhile, there is a lady there with a special needs little girl and she is hysterically laughing at him. She said, "I figured that's what he was screaming about when I saw you go to the candy!" I said, "I'd like the people who questioned his intelligence to see this one!" LOL!!! Oh my, that kid makes me laugh!

We went to the YMCA on Friday. Jacob had such a blast in the pool. They have a water wheelchair, so I was able to sit in the wheelchair and hold him while he enjoyed the water. He laughed over and over at all the splashing as kids came down the slide. I found it interesting to watch kids reactions to him. There are quite a few different reactions.

The Staredown: This child stares without blinking. No questions are asked, just burrowing eyes. When you smile at this child, there is no response. When you talk to this child, there is no response. Just the staredown.

The Sneak a Peek: This child will stare, but as soon as your eyes meet, his eyes dart away rather quickly. You half expect him to start whistling. Just when he thinks you are no longer looking at him, he goes on to take another sneak peek. Once again, the eyes dart away. This child was obviously told not to stare, but the temptation is just too much.

The Slobberer: This child instantly smiles and begins to drool over your child, "OH HE IS SOOOOO CUTE!" and comes back many times to make sure you know just how cute your child is. This child is also known to watch your every move and the second you enter the locker room, peeks her head out of the shower to once again tell you how cute your child is. And before you leave the locker room, you end up hearing how cute he is a couple hundred more times.

The Inquistion: This child has no fear of asking questions. Such questions as, "What is wrong with his head? Why is he in a wheelchair? Why doesn't he talk? Why are his feet red? What is that thing on his tummy? Why is he licking his hands? Does he know how to walk?" are asked basically one after the other, like a firing squad. The interesting thing about the inquisitor is she truly wants to know. And after tiring of all the questions, she starts to see the charming qualities of your child beyond all the obvious disabilities. The squeals and giggles from your child soon turns the inquisitor into the showoff.

The Showoff: This child wants to do anything to make your child laugh. Many tricks are done in hopes of getting a good belly laugh. And many questions of "Is he laughing? Did you see that Jacob?" are asked in return.

The Oblivious: This child has no idea that anything might be different with your child or decides that because he is not walking or swimming on his own he must therefore be a BABY.

This list could go on and often pertains to adults too. It's amazing how this list is transferable to any situation or place we are at. Another joy of raising a special needs child.

I hope everyone is having a great week. We are heading to Rochester Wed morning for an EEG to check possible seizure activity. Wish us luck in finding out something either way.

Love, Karla

Tuesday, March 13, 2007 10:29 PM CDT

Warning: The following graphic content may be more than some of your stomachs can handle. Proceed with caution.

Yesterday, I pushed my sweet boy into the house and prepared to take him out of the wheelchair. This is what I saw:

Yes, people. That is poop. To maintain Jacob's dignity, I chose not to take any pictures of him. Let's just say, his "end" was worse. I will give Jacob credit- he's a dang good shot. Not one drop on any of the fabric on his chair. Score. I know, you are all extremely jealous I got to experience such a thing. Next time, I'll invite you over and share.

Because of Jacob's egg allergy, he isn't able to eat cake now. Thanks to Auntie Holly who gave us an egg free, gluten free, nut free, but definitely not calorie or fat free, cake mix and frosting, Jakey was able to enjoy some cupcakes.

Hope everyone is having a great week!

Love, Karla

Wednesday, March 7, 2007 7:26 PM CST

A new milestone came this week. I took down the feeding pump....not only did I take it down, but I sent it back to the homecare pharmacy today. Somehow it felt like I was taking down a major part of our lives. It was weird! So a BIG HURRAY for Jakey!!!! The crib will be the next big step. Hopefully within the next few months. The bed we wanted was denied by insurance. SURPRISE SURPRISE! Wouldn't expect anything less. I think I'd faint if they actually accepted something the first time.

We have witnessed some big time brotherly love this week.
While taking down the feeding pump, Jacob was laying in his bed and Devin wanted to climb in there too. This is what followed: Jacob started smacking Devin on the back....HARD. Devin in turn started screaming, "JACOB STOP HITTING ME!" Jacob responded with an awful scream. Then hit him again. Repeat cycle. Now some mother's would have intervened but this mama was enjoying it way too much. Okay, so Devin might have been hurt a little but hey! It was quite amusing! LOL

Last night, we were sitting down for dinner. Michael and Devin started eating, while Dave and I were getting Jacob to the table. Michael was ready to take the rest of the chicken and potatoes when I told him it was for Jacob. He turned to Jacob and said, "Darn it! Why did you have to start eating?!?!?!" LOL!

We are happy to announce that my sister and her husband finalized Lauren's adoption yesterday. How cute is she?

Thanks for all the emails and guestbook entries. I appreciate it that others can sympathize and empathize with my struggles.

Love, Karla

Sunday, March 4, 2007 8:33 PM CST

I hate neurogenic bowels and bladder. I hate them. Hate them. Hate them. Once again, my reality bubble burst and hit me in the face. Here we are at church this morning, and Jacob had a poopy diaper. The dilemma is the changing table in the nursery is too small for him. So, I went across the church before it started to an area where there was enough room to change him. No sooner had we sat down, when he pooped again. I didn't really think I should disrupt church and walk across the front again, so I decided to try the women's bathroom downstairs. The countertop is fairly large, well his feet kinda hang in the sink, but it works. So if you know how neurogenic bladder and bowel works, at any time, they can just pee or poop, no control. So here I am, wiping his butt to only have him poop more and then start to pee all over. Meanwhile, 2 kids from his Sunday School class come in and start the stare down. About this time, I wish that I could just have him go into the bathroom and go potty and walk back upstairs but instead I am trying to clean him up, which just makes for more pee. I don't want other kids to see him like that... and so finally, I am able to get back upstairs, wondering why the heck I thought carrying him would have been much easier than using the wheelchair, to see that half of the service is already over. I sat there wanting to cry so badly.....I just hate that nothing can ever be easy. I can never just do something or go somewhere with Jacob without major planning and having to make it work. And now that he is getting bigger, it just makes it more apparent just how many places are not suitable for our situation. And this isn't even the best part of the story....we came home, I changed Jacob again only to have him poop all over again. This time, much worse than before. I guess I should be happy he didn't poop like that at church.

Jacob and I were invited to the high school to speak in health class. It was a really fun experience for us. I think I was able to give a pretty good representation of what it is like to raise a special needs child and plant a few seeds in their minds about LIFE and what is of importance. Jacob was his normal charming self of course. :)

This week, we also got some good news about possible respite. The house he would be staying at has 3 bedrooms, 1 respite bed and 2 other beds for special needs children who live there. It is staffed with aides and nurses who are wonderful in caring for the kids. I think this will be a really nice fit and will make it much more comfortable for me to leave him. We will be receiving a weekend of respite every other month.

This week also brought more snow, some ice, and an early dismissal and snow day for the boys. We have so much snow now. The boys are really enjoying playing in it. I think I am going to have to bring some snow inside for Jacob to play with since his feet have been getting so cold lately...a side effect of his spina bifida.

Devin was so excited to win tickets to the monster trucks on Friday. He took Dad with him. They had a blast and even rode in a monster truck. It was fun for them to do something alone.

Jacob has been so funny lately letting us know what he wants. We stopped at Burger King on the way home from visiting the respite house. He whined the whole way home because he could smell the food! If I didn't know that his hamburger would end up on the floor, I would have given it to him. Check out the pictures in the photo page. Last night, he was eating a cookie. I didn't just give it to him though, I made him find it and pick it up himself. He was whining so loud and would reach over to me for help. I would show him where it was and then told him if he wanted it, he needed to pick it up. It took about a minute, and then he got it. It was so neat to see him succeed and smile about his success (with a mouth full of cookie of course!)

Hope everyone had a great weekend!

Love, Karla

Friday, February 23, 2007 11:36 PM CST

Pictures added :)

Winter in Wisconsin can be very interesting. Just two days ago, I look out in the front yard to see Michael and Devin without their coats on. In fact, Michael had a t-shirt and jeans, and Devin was wearing shorts and a sweatshirt. Yeah.....49* felt like a heat wave to us. And yes, I did tell them to get clothes on! LOL And in true Wisconsin winter form, we are now having a major storm. The interesting part is that as the snow is majorly falling from the sky, we are hearing thunder and seeing lightning on occasion. In fact, the first time it happened I said, That wasn't LIGHTNING was it?!?!?!?" We will have a whole weekend full of SNOW. And for those of you who think the snow is so beautiful, I will agree with you until that snow becomes slush, and that slush is full of salt, and that slush and salt is all over my house. Then the beautifulness of the snow wears a little thin on a person. There is nothing quite like trying to vacuum up salt to only have it kick back out of the vacuum at ya like a bullet. Make sure you aren't barefoot is all I can say.

This whole snowstorm reminds me of April 2003, the weekend of Jacob's benefit. I had two internet friends coming for the benefit...one from Chicago and the other was flying from Washington into Minneapolis and driving down from the cities. Both had a good taste of it, but Deanna from WA was the most excited since she doesn't usually get to see snow. And here she was, no coat, with her son in a huge snowpile taking pictures. Gotta love Wisconsin winter and the crazy people who enjoy it@

I received a call from the allergist today. Jacob's blood tests came back showing he is definitely allergic to eggs and peanuts as we knew, but he is also allergic to all tree nuts. We weren't sure about the tree nuts, so I am glad we found out before he had any reaction to them.

We have been so thrilled with Jacob's continual progress in eating. He is now grabbing at the food and cup on his tray so much. We did realize something though.....there is one time we REALLY miss the Pediasure. Let's just say that Pediasure puke smells so much sweeter than real food puke. Not sure I was ready for that change. Oh and the other change with all this eating is the poop. I signed up for a lot when we were blessed by Jacob, but I don't remember signing up for the joys of I am-4-years-old-and- eating-lots-of-food poop. And to think it will only get better with age :) Lucky me.

I continue to be in awe at all the times God shows us he is right here, along the path we are walking. We have been working on getting the bathroom remodeled, and as part of that, we will need a new shower chair for Jacob. Last time we were at Mayo, I had Physical Medicine write a script for the shower chair. Well, if you know our track record with insurance, you will know things take months and months to finally be approved. About a week later, I get a call from our PT at Mayo who said Easter Seals had a shower chair available, and not only was it the size we needed, but it was the EXACT chair we were going to order. And so, on Tuesday I picked it up. Amazing....

The other blessing we have noticed is how much other people approach us saying how beautiful Jacob is, or how much he has touched them. I can't tell you how much that means to me. It makes all the struggles worth it to know Jacob is fulfilling his PURPOSE. Jacob's nurse coordinator at Mayo told me told that Jacob is like a present we open layer by layer. Each layer is such a surprise and a blessing. And he has so much more in store for us, I just know it.

Hope everyone had a wonderful week. Let me know you stopped by. We always enjoy hearing from all of you.

Love, Karla

Saturday, February 17, 2007 9:36 PM CST

Hello everyone! It's taken me awhile to get back on here. My nephew's wedding last weekend was beautiful. It was truly the most beautiful ceremony I have been to. There were a few blooper type moments as well as some pretty funny speeches to add a little humor to the day. They had a powerpoint of the two of them growing up and then pictures of them together. Justin is Jacob's godfather, so there was a picture of them on the slide show which has always been one of my favorites. Of course, it made me cry.

We spent the night in a hotel. I am sure Devin would like you to know it DID NOT have a pool either. So as Devin would have it, he put his swim trunks on and went swimming in the bathtub. LOL! It was a nice night visiting and relaxing. Sunday, it was a 6 hour trip home. We brought our DVD players and so we were all set. Jacob let us know that he was ready for lunch along the way, so we stopped and ate. It still is taking time to get used to Jacob eating! And letting us know he wants to eat NOW! So much fun though knowing we can make those plans for him and also knowing he enjoys his food oh so much!

The rest of the week was pretty normal. I got a chamce to watch Jacob playing on the computer at school. He was playing an alphabet game where he would scroll through the letters and then pick which one he wanted. Each letter had a little song with it and a picture of something that started with that sound. Jacob loved the B and repeatedly chose that one. He'd go to other letters, but always ended up coming back to the B. His adaptive technology teacher showed him how to change the page so he could get to some other letters. Before you knew it, he figured out how to get back to the beginning where the B was! It was so funny to see how he figured that out! LOL

Hope you all enjoyed the videos of Jacob. If you didn't get to see them, go into the journal history.

Hope everyone is having a great weekend! I will try to add some pictures maybe tomorrow. I noticed the pictures on his photo page are still from before Christmas! OOPS!!!!

Love, Karla

Thursday, February 8, 2007 8:02 PM CST

Hello everyone! We've had a busy week. Monday, we headed for Rochester to see the neurologist. She didn't have much to say, except we are increasing one med at night. She feels he is doing well enough to go 6 months in between visits! This is the first time in 4 1/2 years we have gone that long. WOW The boys didn't have school Monday because of the cold, so they came with me. We also met with Dr Nickels for lunch. She was so amazed with his eating :) Dr Nickels was the doctor on the receiving end when Jacob was admitted to the NICU after birth. We have kept in contact all this time.

We were supposed to go back to Rochester tomorrow for his allergy results. I just didn't feel like going all the way there again, especially since we are going out of town tomorrow afternoon for my nephew's wedding. I called the nurse and asked her about the appt and found out the blood tests were never run! NICE. Especially after having stuck him twice that day just for these tests. I can't believe it. Thankfully I didn't go all the way up there!

Like I mentioned, we are heading out tomorrow for my nephew's wedding. It will be fun to see family. My nephew is such a neat man. We couldn't be happier for him and Renee.

Jacob has started doing something else new :) He is now reaching out in front of him and grabbing at things. He is really starting to explore things on his high chair tray. Many times, he has grabbed his food and tried to put it to his mouth. This is so incredibly cool :) It's very obvious that he is seeing things in front of him because he is accurate in his reach, not feeling around for it, but directly grabbing it.

I have some video I'd like to share with you. The first one is of Jacob eating. He was actually holding his poptart and taking bites :)

Jacob kept sneezing and sneezing. Everytime he'd sneeze, his AFO's were clicking together which made him laugh so hard!

And the last one is JABBER JAWS!

Hope everyone is having a great week.

Love, Karla

Thursday, February 1, 2007 8:00 PM CST

Today was the big day for Jacob's first dentist appt. I think this picture says it all!

He did absolutely wonderful! I couldn't have been more proud of him :) He loved having his teeth cleaned. But his absolute favorite part was the spit sucker! He was just so cute and so cooperative. I couldn't believe it. There is no way he would have been able to do this a couple months ago!!!!

You know, times like this get me all sappy. I just can't believe where we have been and where we are now. To know that there was once no hope and now he was sitting in a dentist chair like any other 4 1/2 year old boy. Of course, he charmed the pants off of everyone. I can't even begin to tell you how awesome it was to have a dentist who specializes in pediatrics and sees many special needs kids. His whole demeanor and attitude toward Jacob is exactly what we have always strived for. It was nice not having to explain so much and just enjoy a normal part of childhood...the first trip to the dentist :)

Here are more pictures of the cute boy :)

Jacob is making his weird monkey face in this one! LOL!

Not much else going on the rest of this week. Monday, we will head to Rochester to see the neurologist. I am excited to share with her all the changes he has made since changing seizure meds. Friday, we will be back in Rochester for a follow-up with the allergist.

I'll leave you with another cute picture of Jacob and Dave with our new cat Cooper.

Love, Karla

Tuesday, January 30, 2007 6:30 PM CST

I just had to share a couple adorable pictures of my new niece Lauren :) She is officially a member of our family! The final adoption process will take place sometime in February. We are so thrilled.

And this one was taken on Christmas Eve. She is 3 months now :)

We went to Mayo again on Friday. Jacob saw the allergist. He was a very nice man who seemed to be charmed with Jacob's cuteness! LOL We discussed ways to deal with his allergies and also decided to run some more tests. We will see him again next Friday for the results. His nurse came in and reviewed some things with me as well as showed me again how to use the Epipen. There is hope he will outgrow his egg allergy, but not sure about the peanut allergy.

After the allergist, we visited with Deb our nurse. Jacob had SO much to tell her. It just cracks me up to see how different he is now.

Jacob needed blood drawn for his allergy tests and his neuro appt next week. Let me tell you, he was not happy at all! It was quite amazing to see the difference in him this time. Boy, did he scream. Afterwards, I asked him if he wanted a treat and he shook his head very violently YES! YES! LOL!!! It was hilarious! So he got a Kit Kat bar. Let me tell you, that was the SWEETEST thing seeing that little mouth eating a Kit Kat with tears still in his eyes :)

Jacob also saw the OT for a new thumb splint. Hopefully that will arrive with a week or two. We also had to go back for a blood redraw because some of the blood was clotted....UGH! This time it was a man who drew it. Let me tell you, he was SO rough and so fast, that I am still trying to figure out what happened! But he didn't make him cry. I honestly don't think he had TIME to cry! LOL Which makes me wonder if rough, and I mean rough, and fast is better than nice and easy. Obviously easy gives him much more time to cry!

School has been great so far this week like always! There is always new things to do, things to try, and fun to have with friends and his wonderful teachers and aides. I tell ya, that boy loves his school! He is working on using switches to tell them what he wants at snack and when he wants more. It's awesome :)

Jacob has always loved this particular CD since he was really little. He only wanted to listen to that particular CD at bedtime and no others. Lately, he is screaming if you turn it on. As soon as you turn it off, he stops crying. I tell ya, that boy keeps us on our toes! Right now he is screaming because Daddy didn't brush his teeth yet. He won't let you forget to brush! Thursday he goes to his first dentist appt. I can't wait to see how that goes! Hopefully he won't bite them :)
I will update with pictures on Thursday.

Love, Karla

Wednesday, January 24, 2007 7:48 PM CST

I'm finally getting around to sharing about our trip to Mayo on Monday. Everything went really well. The dietician is amazed at how well he is eating. In fact, he is now up to 37 1/2 lbs and 39 1/4 inches. She felt it was time to discontinue the pediasure and switch to regular milk! Can you believe it? Jacob is totally off of pediasure and only needs his feeding tube for meds and extra water! The nurse later told me the dietician said in her whole career, she has only been able to take two kids off of tube feeding, and Jacob is one of them! She was totally amazed and referred to Jacob as the miracle child. We are just so thrilled! It continues to remind us of the blessings God has given us. He is truly the one in charge...it has been so evident from the very beginning. Over and over, even after bad news upon bad news, we are reminded of His grace and the need to keep HIM as our focus, giving God the glory He deserves for working in Jacob's life.

We also saw Physical Medicine. The doctor was so impressed with how well he is using his switch! He had to show off of course. He kicked both legs for her as well. He was laying on the exam table while she was stretching his right arm, and she asked him if he could stretch the other one too. He did it right away as soon as she asked! She was very impressed with the shortening processing time! The doctor told me that we are so lucky to have a school who cares about him and that he is definitely in the optimal place, both home and school, for learning. She also informed me that Jacob has surpassed any expectations they ever had for him and that because of it, it's hard to know where he will go and how much he will achieve! It was a wonderful visit!

We saw the PT next, who was shocked he was on a bike! We also talked about wanting to get him to sit on his own, but because his hamstrings, hips and adductors are tight, it makes regular floor sitting hard and thus causing him to fold over because his center of gravity switches with tightened muscles. She suggested bench sitting, but to do it when that is all we are expecting from him is sitting, not during the times he is being asked to concentrate etc on other things. We will work on this as well. I had him sitting on the edge of the chair in the living room yesterday, and he was just TOOOO cute!

The nurse was commenting that Jacob has done so well because we continue to try new things and let him experience things despite not having the skills to do so. She said I am always so busy breaking down the walls for him, so much so that I don't even let the cement harden! LOL

We are going back on Friday to see the allergist and to get a new thumb splint for his right thumb. I am curious to find out if he has any other allergies and if there is anything to do for the ones he does have.

Jacob went swimming today. He had a blast of course! He was hitting his switch on the bus that said, "LET'S GO SWIMMING!" Everyone got a kick out of that one :) It is so neat to see how much he touches everyone that is involved with him. Hard not to love that sweet face!

Hope everyone is having a great week! I took Michael to the dentist this morning and tomorrow it is Devin's turn to see the eye doctor. Hopefully we can get a better pair of glasses then the piece of crap he is currently wearing! LOL

Love, Karla

Sunday, January 21, 2007 12:35 AM CST

Hello everyone on this snowy day! We have had a few inches of snow fall so far today. It is actually quite beautiful falling down. As long as it isn't too cold, the snow isn't so bad. However, when I think back to last Sunday morning, there wasn't any snow on the ground and I think I liked that a little better. LOL The boys of course are loving all the snow and have found a perfect purpose for the ramp besides to get Jacob out of the house! Yes, it has become an important part in their sledding experience, complete with a lovely snow pile/jump at the end. Judging from all the commotion I hear, they are having a blast!

Jacob is his normal, happy self today. He is enjoying listening to our dog play catch with Dave right now. The screams that come from his mouth are hilarious. According to Michael, Jacob didn't want to participate in Sunday School at all. They were playing a passing game and he refused to hold onto anything. He is such a stinker sometimes. We have noticed that he doesn't have much need for anything in his hand if he can't eat it too. Yes, many a thing has been launched across the room. He is just too much!

Devin informed me that his class was learning about John the Baptist today and said they got to taste cockroaches! LOL! (In case you don't know it was actually locusts, but I am not really sure how real they were!) And then went on to say to Michael on the way home, "Did you know John the Baptist's head was CHOPPED OFF?" Always the subtle one, he is....and when I asked him why he said, "Hmmmm, I don't think people liked him very much!" Well, I am guessing not! LOL! I tell ya, he cracks me up too!

Tomorrow, we have Spina Bifida/CP Clinic rescheduled, so hopefully all this snow will stop before we need to leave in the morning. Otherwise it will be a repeat of last week!

Hope everyone is having a great weekend. If you haven't seen the pictures of Jacob riding his bike, check the journal history.

Love, Karla

Thursday, January 18, 2007 2:45 PM CST

I was talking to the PT the other day and asked if she had tried Jacob on the tricycle yet. I know he can't petal by himself, but thought it might be good exercise for his legs, and of course, he'd love it! Well guess what?

It's dark, but you get the idea!

And here's some pictures to brag a little more!

He's so funny! He did NOT want to hold on with his left hand! He wanted to chew on his fingers instead! LOL

This one cracks me up!

LOOK MOM! NO HANDS!

Gotta have my fingers!

It was so neat to see him on a bike and enjoying it. He did a really nice job holding up his head too for the most part.

Just before he went on his bike ride, he was in gym class going "sledding." The adaptive PE teacher had a ramp and the kids slid down on scooters like they were sledding! It was the coolest thing. Jacob LOVED it too! He was jabbering so much and when we asked if he wanted another turn, he shook his head yes :) He's too funny!

Today in speech, Jacob was eating M&Ms and had to hit his switch when he wanted more. They also do that at snack time. He does SO well with this too. It's been so wonderful to see him doing so well lately.

We are coming along with the plans for the bathroom remodel. Hopefully within a month or so we will have a new bathroom!

Hope everyone is doing well. Continue to keep Maya in your prayers.

Love, Karla

Tuesday, January 16, 2007 7:54 AM CST

I have gotten so pathetic about updating this site...I am so sorry! I will try to do better. I know a lot of you rely on it to know how we are doing.

Yesterday, we were supposed to go to Rochester for Spina Bifida/CP Clinic, which we had to cancel because in true "It's time to go to Rochester" form, it decided to snow and snow and snow. Mind you, we have not had any snow since October, which is odd for us, but of course it decided to snow the day we had to go. I truly believe that 3 things are bound to happen 9 out of 10 times when it is time to go to Rochester....wind- blow you off the road kind of wind, rain, or snow. It's become somewhat of a sick joke. And so we are scheduled for next Monday, but I really shouldn't say that too loud. Only problem is that we won't be able to see neurology that day, but we have other people we have to see more (never thought I'd say THAT!) and so waiting until Feb 26th when everyone was available wasn't what I thought was best. We will have to schedule neuro another day.

Jacob continues to amaze me. He has now realized, despite having eaten at school 1-2 hours previously, that the second he comes through the door after school, he wants to eat and eat RIGHT NOW. It's rather pathetic actually! LOL He's doing such a good job at trying to let us know what he wants too. He'll fuss and when you say what it is that he wants, he will smile. Jacob is using his switch to tell us what he's done at school. When you ask him what he did today, he will hit the switch, just once, and then the recording will tell us what he did. When the talking is done, he will hit it again. It's funny because he won't tell you until you ask. He used to just love hitting it and now he is being so much more purposeful with it!

Please keep Maya in your thoughts and prayers. She was re-hospitalized on Sunday and was transported to Milwaukee last night. She is fighting another line infection and is going to surgery this morning to have her line pulled. She has lots of issues with having IV access, so please pray that the PICC line they place will last until they are able to replace her central line. I feel so bad that Holly has to go through all of this again.

Thanks for all the guestbook entries! I love hearing from all of you!

Love, Karla

Sunday, January 7, 2007 4:55 PM CST

Hello everyone! Christmas was wonderful, New Year's came and went, and the kids are back in school. Jacob was super excited to go back to school and couldn't stop smiling. Of course, once he went on the bus he pulled his monkey face trick and tried to pretend that he was ignoring everyone. That's his new trick :)

Jacob has been doing a lot of "talking" lately too. We are trying to figure out the best way to make it less frustrating for him when he really is trying to let us know what he wants. The school is involved as well, and I am sure we will be able to accomplish this somehow. I also would love to have him screened again for his developmental level, but the doctor we have seen in the past is not available right now and the waiting list to see someone else is around a year. I think it would be very interesting to see what exactly he is doing developmentally and where it appears he is going. An online friend told me that eating and communication go hand in hand, which makes sense why he is so much more aware of what he wants lately. I need someone to guide us and hopefully have some good ideas for the therapists as well. Sometimes I feel like the prognosis for him was so grim that he has just been put in this "whatever" pile and honestly, he has advanced much past that. Just like any other child, he is taking steps forward and it would be nice to have some ideas on how to encourage him toward the next step. One thing I have heard so often is why can a child who is physically still a newborn, do skills like eating and socially interacting the way he does. Not sure I can answer that one....I just want someone to take it seriously.

Anyway, we are in the process of getting bids on our bathroom. We had hoped for a roll in shower and a tub, but it doesn't seem like that will happen. It's all so frustrating, so that is all I will say for now.

Jacob had his weight checked on Thursday. He is 36 1/2 lbs now, up from 34 lb a month ago. He is down to 1 can of pediasure a day, along with 3 meals! He is doing so good in his eating. I am discouraged though after hearing he needs 44 oz of fluid a day. I don't see how this will happen without running some at night through his feeding tube. He just can't do that much and eat. Not sure what to do yet...we will see the dietician on the 15th.

Hope everyone is having a great weekend. Leave a note to let me know you were here!

Love, Karla

Thursday, December 28, 2006 9:19 PM CST

Hello everyone! Today is my birthday, so I am being pampered. Dave asked Michael to make me breakfast in bed since he had to be at work by 6:00, so I woke up to pancakes, eggs, toast, and fruit. Michael was a little disappointed in the pancakes, but they tasted fine :) I think he was even more excited that he could use my new griddle first! LOL Devin snuggled with me in bed, since he is the world's best snuggler, and ended up sleeping again until 1:00!!! The nurse came today too, so I left for awhile and did some errands.

This afternoon, a contractor came over to start the bidding process on our bathroom remodel. I am getting really excited about that. We are going to have a roll in shower and hopefully a whirlpool tub for us too. We are going to add on a fairly large area to the bathroom by taking some of our dining room. We are also widening his bedroom door and possibly adding a sink into his room. It seems like we use so much water caring for him, so that would help to have a sink in his room.

Tonight, we headed out to one of our favorite pizza places. Jacob ended up eating 2 small slices of pizza plus some pudding! He loved it :) Afterwards, we picked up the birthday cake I won from the radio this morning. It's been a really nice day!

Thought I'd share some cute pictures from Christmas.

Jacob LOVES this thing! Thanks Hugs and Hope :)

I love this one :)

These are all Santa gifts.

Jacob finds the farm very amusing.

These next pictures are quite funny if you know the story behind it. Jacob is so impossible to take a picture where he actually LOOKS at you, especially when he is finding his fingers so much more fun than looking at the camera.

Me: "JACOB! JACOB! Look at Mommy!"
Jacob, if he could talk: "No Mom, my fingers taste too good right now!"

Devin: "MOM! MICHAEL'S ELBOW IS HURTING ME!"
Me: "Smile anyway!"

Devin: "MOM! IT REALLY REALLY HURTS!"
Me: "Jacob! Gosh darn it! Look at Mommy!"

Devin: "FINE! Hurry up and take the picture!"
Jacob if he could talk: "Are you DONE YET?!?!?"
Me: Good enough!

And of course, Michael is always the photogenic one! LOL!

And finally, a cute picture I took one day after school.

He LOVES chewing on everything now! I could not get it out of his mouth! I guess he rode the bus home with it in his mouth the whole time :)

Hope everyone is having a wonderful week!

Love, Karla

Monday, December 25, 2006 5:41 PM CST

MERRY CHRISTMAS!

Hope everyone had a wonderful Christmas surrounded by those they love.

The boys had a wonderful Christmas filled with lots of presents and lots of fun! Michael and Devin are always very appreciative of anything they get and have spent the past 24 hours playing and playing and playing. We gots tons of movies, so we are excited to watch those too! Jacob got 8 new Barney movies! CRAZY! His 2 favorite toys though are his Peek a Block farm and his spinning light globe. The farm sings Old McDonald and of course makes all the hilarious animal sounds he just LOVES and the spinning light globe also vibrates which he also thinks is hilarious! I just love seeing him get pleasure from things. It's not easy knowing there truly isn't a lot to buy him since he generally doesn't ever play with his toys and there is only so much clothing one child needs. This year was much tougher than others, but I do believe that this year will bring some changes in his abilities to actually play. Or at least that is what I am hoping for! Right now, he is at about a newborn to 3 month age in being able to play. We generally have to hand him all his toys and once he drops them he doesn't know he should find them again and pick them up. However, his piano still brings him a lot of joy, but one can only have so many pianos too! LOL

The eating continues and continues! He now gets very upset if you dare think to walk past his highchair if he is hungry and especially if you aren't ready to give him the next bite the second he is done eating the last bite. He got quite mad at me last night for thinking he was done and ready to open presents. It just cracks me up that he is becoming SO vocal and letting us know with a very pathetic whine that he isn't happy. Just a few minutes ago, I took him from Michael and he started crying until I asked if he wanted Michael back, to which he responded with a giant smile. So guess where he is sitting now? I love it :)

The boys have off until January 2nd, so we should hopefully have a fun week together.

Please keep Holly and Maya in your prayers. Maya was airlifted to Children's yesterday with another infection. Not a fun time to be in the hospital!

Thanks for all the messages in the guestbook! I love them!

Love, Karla

Tuesday, December 19, 2006 9:33 PM CST

Wow! You get to hear from me twice in one week! LOL

Jacob continues to amaze us. Tonight was the first time I actually ordered food for him at a restaurant. He ate a whole chicken strip and 2 fries. When he had about an inch left, I thought he was looking kinda full, but he let me know he wasn't done when he started fussing. It is truly the most pathetic fake you have ever heard. But it works :) I found it most amusing that he could eat such a big thing, and it was all thick meat, but hey, he loved it! At one point he took too big of a bite and I had to take some out of his mouth which also ticked him off pretty good! It was the most natural, normal thing to be sitting there as a family eating. It's getting hard to remember when he didn't. I looked at his medical plan that I keep in his diaper bag and it said not to give him any food by mouth except baby food, pudding and yogurt. Guess I better change that :) Usually I am updating the meds on the list, not something as huge as his diet!

All this eating has made his poopin' quite interesting. We had to increase his miralax to make sure he wasn't straining because with that came seizures, and having spina bifida doesn't help much either because of the nerve damage to that area. Michael got a good taste of a mighty good poop on Sunday. He was in Sunday School holding him on his lap when Jacob pooped a good one. So good in fact that there was little in his actual diaper, and rest of it all over Michael. Yep, pants and shirt covered in POOP! He came downstairs where we were having Sunday School and asked Dave to take him home to change. It still brings a chuckle everytime I think about it :)

Thought of the day: Do you know how exciting it is to have to actually use Shout on Jacob's clothes? Or how exciting it is to use all the bibs in the drawer and have to make sure I put some in the wash before the next meal?

I am still wondering if any special needs mamas have any ideas regarding a hospital bed. If you do, please email me!

Love, Karla

Sunday, December 17, 2006 9:28 PM CST

Good evening! This Sunday in Advent symbolizes JOY and so I would like to randomly share some joyfulness that has filled my heart recently.

*For the first time, I went grocery shopping and could actually think outside of this tiny box of options I have grown accustomed to. I looked at things differently, trying to figure out good snacks, meals, etc that Jacob is now able to share with us. As I walked down the aisles, I couldn't help but really FEEL what this really all about...an answer to a longheld prayer.

*Jacob has never shown me he is hungry. It is one thing that has always scared me because truthfully if I never fed him, I don't think he'd have ever let me know he was hungry. That is until the last few days....Let me tell you that boy can EAT. And don't you dare think you are going to stop feeding him before he is done. I'll give him a serving that I feel is adequate and he will squeal and FAKE cry until I get him more. The squealing starts as soon as you sit him in his highchair. Today, I dared to think he wanted to actually go into the living room. Obviously he is very aware of our house and where things are because the SECOND I walked past his highchair, he SCREAMED. So guess who got fed? Yep, he is getting lots of food by mouth now! There is not one food he has tried that he hasn't liked.

*Have any of you really thought about how much coordination it must take to be able to eat? Especially for a child who is severely brain damaged. I can explain this miracle to people and most truly think this is great, but I think to truly appreciate it, I go back to the conversations occurring in the PICU in Sept 2002 and visualizing the brain scans and I think WOW...it's just unreal. Truly unreal.

*Jacob is in Sunday School this year, and today he had his 1st Christmas program. Truthfully, most parents might just forget about sending their disabled child to Sunday School based on the fact that cognitively or physically he isn't even remotely close to his peers. And by sending him, it means we must carry his wheelchair up and downstairs. BUT I remember a commitment Dave and I made to God and because of that, I truly believe that others will minister to Jacob's heart and he will be able to understand at some level, maybe even a level deeper than most of us understand. And so, being the absolutely wonderful brother that he is, Michael helps Jacob participate in Sunday School. Tonight he marched in carrying Jacob and sat in the front with the rest of the preschoolers. How many 13 year olds would do that? I had numerous people tell me today just how special it is to see him helping his brother. I feel so blessed. My boys have had to make sacrifices because of Jacob, yet both of them shine with so much love and devotion to him it is breathtaking.

*And finally, I received an e-card from a friend today with this verse on it:

From the fullness of His grace, we have all received one blessing after another. John 1:16

Hope all of you had a wonderful weekend and a blessed week as you prepare for Christmas.

Love, Karla

Thursday, December 14, 2006 7:22 PM CST

Hello everyone! We have had a wonderful week! Saturday, I took my mother-in-law Christmas shopping and helped her pick out gifts for everyone. Now I just have to act surprised when I open my gift! LOL When we got home, we wrapped everything up and then headed to the Rotary Lights, a beautiful display of lights covering a whole park. Holly and Maya joined us, so while we took the kids to see Santa, Dave and Lorraine enjoyed cappachino in a nice heated tent. It was a beautiful night to be outside, not too cold, and so the walk through the park seeing Santa and looking at the lights was pretty enjoyable!

I've spent a lot of time at Jacob's school again this week doing odds and ends around there, finishing up bulletin boards, wrapping the presents from Santa, and working in the food pantry. Today, was their Christmas party with a visit from Santa. Here's some pictures :)

Miss Marilyn was holding Jacob as they sang. He was so excited he could hardly stand it!!!

Santa and Mrs Claus come for a visit! You can see the bulletin board I did in the background :)

Jacob making his "monkey face" as Devin calls it just before he hit his switch for Santa which said, "Hi Santa! My name is Jacob!" Then Jacob got very shy, the arm went behind the head and he just smiled :)

Jacob continues to eat and eat and eat! There is nothing he hasn't liked. In fact, he all of a sudden realizes just how GOOD food is. If I put him in his highchair without the food ready, he will WHINE. This morning, he wasn't done eating I guess because after polishing off a stage 3 jar of strawberries bananas he wanted to eat a whole container of yogurt too! Tonight he had chicken, potatoes, and corn, then turned around 2 hours later and ate 4 graham sticks and another container of yogurt. This is a kid that couldn't eat much more than 1/2 a graham stick before! So if things continue this way, we may have to switch him over to whole milk only and no more pediasure! I will talk to the dietician again after a weight check next week.

We are in the beginning stages of getting our bathroom remodeled. We are having 2 bids done next week and then after the first of the year we should be able to get that done. I am looking into getting a roll-in bathchair/commode for him as well as a hospital bed. If any of you expert moms out there have any recommendations for remodeled bathrooms, bath chairs, or hospital beds, please let me know!

This weekend is our Sunday School program. It should be fun to watch Jacob's reaction to all the singing :)

Hope everyone is having a great week! I will try to add some pictures to the photo page!

Love, Karla

Friday, December 8, 2006 10:38 AM CST

Good morning! The excitement over Jacob eating continues.
He has eaten peaches, pears, pancakes, macaroni and cheese, toast with jam, Cocoa Pebbles, a cereal bar, rice, as well as some baby foods too. Then last night, he decided to do something else so incredible.....He sucked for the first time in over two years! I was giving him his sippy cup and he actually sucked on it, drinking 2 oz. After he was done nursing, he'd drink a little from a bottle, but it was then that we decided to get his feeding tube because he just stopped sucking and we could only get 8-12 oz in him in a day.

I can't even begin to tell you how excited we are. We hoped someday we'd be able to give him a cracker, but never dreamt he'd actually be eating like this. After talking with the dietician yesterday, we decided to cut his pediasure down to 2 cans daily from 3 cans. He will no longer have pediasure at school, but milk instead. We are giving him his daytime pediasure and milk in his cup. We will still use the tube for water flush and meds, and of course if he doesn't finish what he is drinking. He is getting only one can of pediasure at night so in the morning he is more hungry and is having breakfast now. It is amazing. Yesterday, I told him to bite his toast and he did! First time I told him to bite and he did just that. So many big steps. With this huge change, I am trying to figure out his schedule and also mapping out his fluid intake so he is getting enough. It is amazing how much thought goes into things like this, but one I am delighted to be doing.

I spent time at Jacob's school this week doing bulletin boards. It's so much fun to help out around there. I miss that part of teaching.

Hope everyone is having a wonderful week! Please leave a message in the guestbook. We love to hear from you!

Love, Karla

Monday, December 4, 2006 7:49 AM CST

I have waited so long to be able to come here and say this....I just had to share with everyone an amazing thing that happened Saturday. We were having dinner with Dave's mom, so I decided to let Jacob try some mashed potatoes, even though in the past he has not cared for them. So while I was at it, I decided to try some of the pistachio salad we were having, as well as the cranberries, and then decided to mash up the ham really good. And here is where the REALLY exciting part comes....HE ATE THE WHOLE PLATE OF FOOD! Even the ham! He chewed and moved the food around in his mouth, never gagging once. He even tried a couple kernels of corn and a bite of stuffing. After he was done, he looked like he was going to explode he was so full :) He took a 2 hour nap afterwards! Then came out and ate some apple pie.

I am really trying to wrap my mind around this one....he has not tolerated chunks in the past, and there were so many moments I wished someday I could actually give him food, even just to be able to give him a cracker to eat. He's done the licking thing for a very long time, but did not progress past that. The last two weeks of trying a few things have led up to this. It has come as such a sweet surprise. His FIRST big boy meal with the family. We just are over the top with joy and of course some tears of happiness fell. Thanks for all your help and prayers along the way for Jacob and our family. It's been so wonderful to reap some rewards from all of our hard work and through it all we continue to see God's hand right in the middle of it.

Even the plate tastes yummy!

I was attempting to take pictures of Jacob the other day...you know, a cute Christmas card type of picture. Well, for all of you who comment of how good his pictures always look, let me just say there is a lot of pain and sweat that goes into it! LOL After roughly 3 hours, I finally gave up and said good enough! Here's one of my favorites.

He decided that the whole hat thing was getting too much! Shortly after this, he bit the inside of the hat and would not let me have it, all the while laughing hysterically at me. Oh how I am love seeing the brat coming out in him! LOL!!!

Saturday afternoon, Dave took the boys to pick out a Christmas tree. It's always a fun experience for them to do something special with Dad.

We spent the rest of Saturday decorating. Jacob seemed to really enjoy it, as he watched us from his stander.

Yesterday, we had church in the morning. Jacob has been so animated at church and just gets those legs a kickin'! I love it! He is also practicing for his Sunday School play. It should be really neat to see him up front with the rest of the kids :)

Hope everyone is having a wonderful week!

Love, Karla

Saturday, November 25, 2006 10:14 PM CST

Hello everyone! We had a really nice Thanksgiving. We left for my sister Lista's house in the morning and got there in time for dinner. My niece Emily is going to culinary school, so she was excited to make the meal for us. My mom and stepdad and my sister Sandi and family also came, which meant I was able to get some baby snuggles :) Lauren is ADORABLE. It's amazing to see a small baby again. You forget they are that little. Jacob looked like such a big boy compared to her. He held her a couple times and was so quick to find her face and smother her with kisses. It was so incredibly sweet to see him be so gentle and loving her.

Friday morning, Devin and I got up early to go shopping. Yes, Devin wanted to go with! LOL He cracks me up...he asked Thursday night if he could come and said he had no problem getting up early, that he'd sleep with me so that when I got up he'd feel me move and know it was time to go. I barely got one leg out of bed and there he was standing up saying, "Is it time to get up?" and was dressed faster than I could get to the bathroom! LOL! The rule was no saying he wanted to go home, no saying he was bored, and no saying are we done yet. He did GREAT! Maya ended up being hospitalized Thursday night, so Holly wasn't able to come with me, which was very sad since we'd been talking about this day forever. I did get to meet up with my friend Tracey for a while though.

Today, Michael and I went out to a couple places that were too crowded yesterday, and also so he could get a chance to go out with me too. He forgot the rules for a second when he was tired of me deciding which soaps to get at Bath and Bodyworks, but soon got over it. LOL My cousin Kayla came over this afternoon to visit for awhile. The boys loved it of course. They always love when she is around.

Hope everyone had a great Thanksgiving. We are all really looking forward to Christmas. I think I will get some decorations out tomorrow. We will also start our nightly Christmas activities which we have done the last two years. This is becoming a very nice tradition :)

Love, Karla

Monday, November 20, 2006 11:20 AM CST

Good morning! We have had some AMAZING firsts this weekend!!! Jacob ate not one but TWO crackers! I broke off a little piece, put it in his mouth, and he actually knew what to do with it. :) He was SO darn cute too...he'd have the piece of cracker in the front of his teeth and CHEESE at me. LOL What a kid. Then I took a banana, mashed a little with a fork, leaving tiny chunks of banana in it, and he ate the whole thing without any gagging. That has never happened before. Usually I've had to put it through the baby food grinder over and over so it is completely smooth.

Jacob also had 2 more amazing firsts this weekend. When tickling him, he actually laughed out loud AND during church, he began kicking his legs out repeatedly, getting so excited. Because of the damage to his spine from his spina bifida, Jacob has been unable to activate these muscles, but give him a little Christian music and that boy can do the unexpected.

What is happening with my boy all of a sudden? It's truly AMAZING. God continues to bless us and show us just how much HE is in charge of what Jacob is going to be able to do. The never's and will not's we heard 4 years ago are in His hands.

Jacob is in his stander right now watching Barney, which proves to be of great entertainment by the laughter and SCREAMS I am hearing. He is too funny. Our dog is also a great source of enjoyment lately. Ever since we put her tags together on her collar and they jingle when she walks, Jacob has been able to know where she is at and therefore is not scared of her. If we say, "Is Daddy home?" Annie will jump up to the window and look out for Dave. If someone knocks, we say, "Come in!" and Annie barks. Well, it started out that Jacob laughed when Annie did this, now all we have to do is say it separate from Annie's reaction and Jacob is HYSTERICAL! Gotta love it :)

This is a short week at school. We will be heading to my sister's on Thursday for Thanksgiving, where we will also get to meet my niece, and then Friday is shopping day! YEAH!

Love, Karla

Wednesday, November 15, 2006 7:45 PM CST

We have had a pretty amazing week. He has been pretty floppy still , BUT on the extremely good note of that, it seems like his hypertonicity is gone too, meaning he is making WONDERFUL gains in other areas! He is now letting us into his mouth. I can brush all of his teeth, tongue, roof of his mouth, without any gagging! I am also able to put a spoon into his mouth, something I have never been able to do without prying his jaw open and then only the tip of the spoon went in. He is also eating large volumes of food, at least compared to what he was eating! He is eating a 6 oz jar of baby food, plus drinking 2 oz of pediasure at the same time! He is drinking 4 oz for the nurse in the morning too, then going to school and having more food and pediasure, sometimes in a cup as well. He is letting us put the spout of the cup IN his mouth, he's swallowing what we pour in, and will even bite on the spout or rub it on his teeth. He is wanting to hold the handle on the cup, so hopefully we can help him figure out how to lift the cup to his mouth and tip it. He is wanting to lick so many more foods too and is really enjoying it. He will have a death grip on the food and gets angry if you try to take it away! We couldn't be more pleased!

On Monday, the kids played with balloons in gym. I was a little concerned at first until I heard that the adaptive PE teacher had ordered special latex free balloons. It was one of those moments where my heart smiled and thanked God for giving us such awesome teachers to help Jacob experience things he might not otherwise be able to. Once again, such a seemingly simple thing really isn't. Once again, my boy belongs....

Jacob is doing a new program at school with the adaptive technology and speech teacher. It is called auditory scanning. He is listening to choices of what he can play on the computer and making a decision which one he wants. From there, he has more decisions based on what story/song it is. He particularly loves "One in the Bed" lately. The Big Mac switch is used to scroll through the choices, 5 to 1 in the bed, and the head switch is used to make his choice. So if he chose 5 for example, then he needed to decide if he wanted them to fall out of the bed or say goodnight. Having them fall out of the bed is WAY funny according to Jacob, so mostly he chose that one. He wasn't always accurate in when to make a choice, but I think that will come with time. I think he does understand though that the switch makes things HAPPEN and he is all for that!

We have been using his step by step switch every day for speech opportunities, such as I record what he did at home so he can share it at school, and in return, school tapes what he did and he can share it with us at home. I decided to record our table prayer so he could say it with us at dinnertime. He absolutely WILL NOT touch the switch to say the prayer. Instead, he will do his "I am so incredibly SHY!" pose, you know the one he'd do when he heard someone sing him Happy Birthday. If I change what is on the switch, he will hit it, but put the prayer on it, we no longer can see his face because he has totally covered it up with his arm! LOL

Not much else is going on. We are looking forward to seeing our new niece/cousin next week on Thanksgiving. The next day of course is Black Friday. I cannot wait to get out there and SHOP! Yes, I am one of those crazy people! LOL

Hope everyone is having a great week! I'll leave you with an incredibly cute picture! Jacob seems to be saying, "Oh no, not again!"

Love, Karla

Wednesday, November 8, 2006 10:35 PM CST

Good evening! Things continue to go fairly well. Jacob had a little seizure at school the other day and also one at home, but it was because I was trying to wean him off the extra seizure med we are using. I talked to the nurse, and we decided to wean him off of it a little slower. Since doing that, everything has been fine. He is very floppy still though, which is the main reason for wanting him off of it. It's kinda like, "Look Mom! No tone!" if you know what I mean! LOL

Anyway....Sunday we had an awesome service at church. Since it was All Saints' Sunday, we honored those who had died in the past year. The families lit candles in the front, and placed them in plates filled with sand. After receiving communion, the rest of us could light candles in honor of our loved ones who have died, so Dave lit one in memory of our dads and for all the children we have known and loved. It was a very emotional time for everyone in the church. Our pastor also preached on how through our struggles we grow stronger, that God often uses our struggles for us to grow closer to Him. He gave an analogy of a crop of wheat which had been grown in a greenhouse. It was a beautiful crop and in most ways seemed perfect. Until it grew so tall and then fell over. The thing missing was the wind, for without wind it wasn't strong enough. So we too need wind to make us stronger. And for us as parents, if we never give our children a chance to experience hurt, pain, or struggles, they will not be able to handle it when something more serious happens. His message was very powerful and just reaffirmed my belief that things happen for a greater purpose.

Jacob has continued to do amazingly well with eating. For the first time EVER he finished a 6 oz jar of baby food!!! He also has been enjoying some of his Halloween treats. Here is a picture of him eating a chocolate bar last week :)

Hope everyone is having a great week!

Love, Karla

Sunday, November 5, 2006 0:17 AM CST

I really don't know why it is so hard to keep this journal updated lately! I am sorry if I've kept any of you wondering and waiting.

Jacob's seizures seem to be under control! We have not seen a seizure since last Friday morning. We are learning the new med schedule, which is a little tough when you have done meds a certain way for 4 years, but we will get used to it I am sure. Last weekend went off without a hitch. I truly believe it is because of all the people praying for seizure control. Thank you!

Halloween was a blast. The kids went to a party on last Friday night. They loved getting dressed up of course, plus there was cool music and some games to play. Devin brought a friend with and Holly and Maya met us there too. Jacob looked adorable as Dracula and had a lot of fun hitting his switch which said, "I want to suck your blood!" He'd laugh everytime! Saturday, we went Trick or Treating at one of the local grocery stores. Then of course it was Halloween on Tuesday, so the kids got lots of time to dress up. Michael went out with his confirmation group from church for Trick or Treat So Others Can Eat. He was worried he wouldn't get any candy, but got more candy than the younger two! Here are some pictures :)

Dracula!

The Grim Reaper

He truly IS a bonehead! LOL Not sure what that pose is all about!

On Tuesdays, we have been having Family Night. It's been so much fun doing things with the kids. We have watched movies, played games, carved pumpkins, and went bowling. The boys look forward to it each week.

I went in for my flu shot this week and thought it would be a quick in and out kind of trip. Well, they asked me if I was allergic to eggs, to which I said no, but said Jacob was and asked if this would be a problem. I then decided I better go over to the pediatrician's office to talk to them since Jacob was scheduled for his shot on Monday. He has been fine in the past, but we just found out about his allergy to eggs last Christmas and so I was a little worried. We were sent up to the allergy dept to do a skin test. Now wouldn't you know we can't go anywhere with tons of people stopping us to talk to Jacob. That kid knows too many people! LOL I suppose the fact that he was laughing hysterically at anything I said or did kind of drew extra attention too! The skin test did indicate he reacted to the flu shot, and after a lengthy discussion with the allergist who then called our pediatrician, we decided to do the shot right then and sit around to see if he'd react more seriously from it. Jacob was happy as can be during the whole thing because the nurse had given him a sucker. He barely flinched during the shot and after a half an hour, we were out of there. A quick run in and out ended up being 2 hours. Such is my life....lol

Jacob has been making really nice strides orally. He had eaten full jars of baby food lately, without any gagging, which is a HUGE deal for him. He loves to have his teeth brushed too, but can get a little gaggy if you put the brush in too far. The other night, he let me in his mouth brushing all around, even his tongue. I stood there for 15 minutes brushing his teeth. He loved it. His face even looked different, like the muscles were so relaxed in his face. I was thinking back to a time when his top lip was SO tight we couldn't even pull it away between our fingers. Or the times when we couldn't even barely touch his mouth without gagging. The tears started to fall watching him. It's been so amazing for me to be able to relish in these seemingly "little" things. I don't ever remember thinking twice about the older boys doing these things. I feel so blessed to have the chance to know what a big deal they truly are.

Hope everyone is having a great weekend! I have added more pictures to the photo page :)

Love, Karla

Thursday, October 26, 2006 9:51 PM CDT

Hmmmmmm......I think we are on Plan #532 for seizure control. Jacob's trying to see how many seizure meds he can try in a matter of a couple months. Obviously, he doesn't like it when things are calm, so he wants to shake things up a bit. This morning, while trying to get ready to go on the radio, Jacob thought it would be an ideal time to have seizure after seizure, 13 to be exact in about a 30-45 minute time frame. I guess the little talk I had with him about it not being a good morning to perform didn't work. As I am trying to get out of the house, I hear the DJ's talking about how they will be talking with me shortly, and I am thinking, "I haven't even left the house yet!" But I did make it there with a few minutes to spare before we had to go on air. I always enjoy talking about my boy and so even though the day started on the wrong foot, we sure had a great time at the Radiothon. Michael even got to read his poem on air, so he was thrilled about that.

After we got back, Jacob took a nap until the nurse came, then we left for Rochester to see the neurologist. After much thinking, it was decided to try yet another med, so we are taking him off of one, using another for a bridge, and then starting the new one. After being asked if I had enough Diastat and Tranxene at home and getting the neurologist's home number, I am guessing it should be an interesting weekend. Please, please pray for an easy transition from one to the other.

We are so thrilled to announce a new little one to our family! My sister Sandi, brother-in-law Bill, and nephew Matt have been in the adoption process for about 1 1/2 years now and received news on Tuesday that they were going to be blessed with a daughter! Lauren was born on Tuesday morning weighing 7 lb 4 oz and 20 inches long. She had black hair covering her head just perfectly and blue eyes. She is absolutely beautiful. She came home today. We couldn't be happier for all of them!

Hope everyone is having a great week! I look forward to reading your guestbook entries ::::hint hint!::::

Love, Karla

Thursday, October 19, 2006 4:38 PM CDT

Hello! How is everyone doing? I started this entry this morning, but got busy doing other things, so here it is. Thanks so much for all the guestbook entries! It's so much fun to see who has stopped by, especially new "faces!" We appreciate all the thoughts and prayers you send our way!

We are still struggling with getting the seizures under control. On Monday, we stopped the Zonegran which seemed to make his seizures worse instead of better. For now, he is just on Lamictal and Tranzene,which our neurologist usually just uses for breakthrough seizures, but we are going to use it for now until she can come up with another plan. So far since stopping the Zonegran, he has cut the amount of seizures in half, which really tells me they were causing an increase. Now if we could just figure out how to get rid of the rest of them!!!

Michael and Devin have been busy getting a huge pile of leaves to jump in, which entails them not only raking our yard, but feeling the need to rake leaves from the neighbor's yard too. She so generously said we could keep them. Isn't that nice of her???? I envision her closing her door and saying, "SUCKERS!" LOL On Sunday after church, Michael asked if Jacob could come out with him. Tears came to my eyes a few minutes later when I saw Jacob in the pile of leaves, completely buried, with a HUGE smile on his face and laughing so hard everytime Michael or Devin would throw leaves or jump next to him. It continues to amaze me just how much the boys love and care for him. They make it possible for him to have experiences just as any child would have....it warms my heart knowing how much they love him just as he is. And isn't that how all of us should view a child with special needs? At Moms group yesterday, we were talking about how after being around a special needs child, you don't even really notice those things which make them different. I have found myself noticing this more and more for myself. I used to worry about the shape of his head and now I don't even see it anymore, yet when we go places, I see people staring at times and it kind of catches me because I don't think about it anymore.

Next week is the Children's Miracle Network Radiothon. We have been asked to come again for the 3rd year. I can't wait to see all the DJ's again. They are great! We will be on the air Thursday morning at 8:35 on CC106.3, Magic 105, and Eagle 102.7 for those of you who are from this area.

Today, Jacob had a field trip to the Pumpkin Patch. He really enjoyed all the noises and bumps on our wagon ride out to the pumpkins. We sat around the fire afterwards and had snack. Jacob was licking a cracker and a little girl in his class asked why he wasn't biting it. I told her he likes to lick it instead, to which she replied, "The cracker will never be gone then!" LOL! How funny is that!!!

Check out the photo page for new pictures!

Love, Karla

Tuesday, October 10, 2006 9:42 AM CDT

Good morning everyone! I have been so bad in the update dept. Not that things are so boring lately that we have nothing to update about...in fact it is rather the opposite. The seizures continue and continue....in fact they have gotten worse I think after increasing his dose. Not sure what the next step will be. If I don't give him the extra dose of tranxene most mornings, they get a little out of control. Yesterday, Jacob and I took my mother-in-law to the eye doctor and things were a little intense for a while there. Of course the med was in the cupboard at home. Guess we can't let that happen again. I do carry his diastat with in case of emergency, but I guess I need to carry the pill too.

Last Thursday, we went to the Torchlight Parade for Oktoberfest. It is at night, with lots of lights on all the floats. It's awesome. Michael marched in the parade. Here you can see him second from the end :)

Maya, Devin, and Jacob seemed to have a good time too! Here's silly Maya :)

Jacob and Maya were sitting together in their wheelchairs at the start of the parade.

How cute is this????

And my goober Devin with all his glow up stuff!

We were laughing so hard when Congressman Ron Kind came up to Devin and put both hands on his head....kinda like he was being blessed by the Pope! LOL Devin is such a scam artist! After Jacob started screaming because he wanted to be held, Devin realized he could sit in the wheelchair and get people to come right up to him and Maya and hand them candy! I think he got more being the boy in the wheelchair than he did before this! I tell ya...that kid keeps us laughing!

Jacob is in Sunday School this year. They sang for the first time on Sunday. I don't think he really cared to tell you the truth! LOL I thought maybe he'd at least smile up there. Maybe that will come with time! Anyway, Michael has been helping in his class with him, which is nice for the staff. I am hoping with time the staff will get a little more comfortable with him. I think right now they are kinda scared of him. Michael was put to work on Sunday having to change his diaper during Sunday School. And the joy of having a neurogenic bladder showed its ugly head....needless to say, lifting up the butt to wipe it makes the waterworks start and Michael ended up changing his shirt too! LOL
During church Jacob decided to poop again, so I took him out to the van to change him. It was then that the neurogenic bowel decided to show its stuff. The more I wiped the butt the more the poop flowed. And of course two people just had to come over and talk to me during this time. I am still trying to figure out why so many people are outside during the sermon! LOL (It was a good one too!) Oh the joys of Jakey!

I haven't taken much time to tell you about school this year. I have been so thrilled having Jacob back at FLC again. We are really missing Miss Lisa the speech teacher, but we are getting to know Stephanie and Annette, our friend Aimee's mama. Jacob has the same PT, OT, Adaptive PE teacher, and Adaptive Technology teacher he had last year. They have been thrilled to see him back! We have all been very impressed with his abilities to hold and keep foods in his hand, and wanting to explore them! Small and steady progress has been made in this area when we think back to what he was able to do last year. He is also doing so much more LOOKING and using what vision he has. Very nice progress in this area! I think it has also helped that we are more aware of how and where he is seeing. Jacob's new vision teacher Marsha is beyond awesome. We are so pleased with her attitude toward Jacob and also the way she is incorporating the daily routine in the classroom to maximize the meaningfulness for him. It always amazes me everytime I go into school to see Jacob or help out in the classroom, just how much he BELONGS there. I wonder in many ways if his teachers feel like they are just doing their jobs or maybe even hope they are doing enough, but it is SO much more than that. I think that any mom of a special needs child can attest to the desire to see your child BELONG somewhere...to have others see your child as you do, so much more than the disabilities they have. We feel very blessed.

I will leave you with some nice blackmail pictures taken at Holly's house! The first one is of my lovely daughter and the second one is Goldilocks and one of the three bears :)

Love, Karla

Wednesday, October 4, 2006 7:50 AM CDT

Good morning! Finally an update! We've been busy as usual.

We got the lift installed in the van, which has been WONDERFUL! Here's a picture of Jakey trying it out!

When I picked it up, I was shown how to use everything. The man showed me how to put the lift up manually if all the power to it was gone. He followed the little demonstration with, "But no one's had to do that before." I guess no one informed him that was not something that should be said to me....somehow the "it's never happened before" transfers over to "it will happen to you." Amazing how that works! So guess who got to used the manual cranks two days later? Needless to say, it wasn't very fun. The problem was fixed and we are back to enjoying the lift again. It is amazing how much better it is not having to transfer him into his carseat, lift the chair into the van, get it out again, put him into it, etc etc. Very nice. I think he really like sitting up like a big boy too :)

Monday was Spina Bifida/CP Clinic day. Such a busy day! We had to get labs early in the morning, so we stayed over in Rochester Sunday night. Labs took forever as usual...if they'd only do it like our wonderful lab tech Robin does in La Crosse! I have yet to convince them it would be so much easier....so 45 minutes later we were out of there. We also had urine to do. I've been able to put Jacob on the toilet lately, so it was much easier than having to have him cathed and wait another 45 minutes to get that done!

We saw physical medicine first. Everything looks pretty good. His contractures are pretty much maintaining the same degree and not getting any worse. His arms still are doing great after having botox MONTHS ago! We also talked about the problems with the whole wheelchair fiasco. Me, Miss I could care less about politics, has contacted my local representatives about how long it took for Jacob's chair to be approved. I have heard back from both of them and it is being investigated now. I am waiting to hear back from someone in Madison about it, hopefully soon! I am so happy they are willing to take this seriously!

We headed to ultrasound next and got some images of his kidneys and bladder. No kidney stones were seen. YEAH! His bladder was really full so they wanted it emptied. Jacob peed a little in the toilet for us, but not enough to empty it. After I left, I got a call asking for me to come back and do it again. At this point, I was like...forget it. If they want it emptied, then they'd have to have the cath team come and empty him. I wasn't going to worry about it anymore....we saw urology and they said everything looked just fine. His kidneys are fine, there was no reflux seen, and everything seemed healthy. He has a little calcium build up from the Topamax, but hopefully now that he is off of it, it will go back to normal. We can wait a year until we see urology again!

Orthopedic surgery came in and he said Jacob looks GREAT! He has a little tightening on the upper/outside of his right foot, but he isn't concerned. Nothing has changed in a year, so hopefully we will continue on this path for a while!

Neurology increased his evening med since he has decided to have even more increase in his seizures. He had 6 of them alone Monday morning. We had to give him his Tranxene which is like valium Sat, Sun, and Mon mornings. We will be in close contact with her.

Dietician came in and is happy with his height and weight. She is looking into if we need to add any vitamins to his requirements. I am hoping to connect with her today.

Hope everyone is having a great week!

Love, Karla

Friday, September 22, 2006 10:19 AM CDT

Good Morning everyone! Hope everyone is having a great week.

Jacob has returned to his normal, sassy self. His cold is much better. He still has a cough, but I am always so impressed with how much power he has behind his cough. Kids with CP can have issues with this and luckily he doesn't.

Jacob saw the neurologist on Monday. We stopped the Topamax and now he is on Zonegran. He is still having 5-6 seizures a day, but hopefully if we give it a couple more days, we will start seeing some changes. We are really impressed that he seems to have made more neurological strides through this, even though no one thinks a trip to the ER is fun. Jacob is obviously making some connections between missing Mom and Dad. He was obviously excited to see us when we got to the ER and calmed down IMMEDIATELY. He was upset by the nurse or doctor "messing" with him. These are all wonderful indications that he is understanding so much more. It is also becoming obvious that because of his visual impairment, we need to make him more aware of what is going on around him in other ways, touch, explaining, giving him a chance to process, etc. because when we don't, he becomes much more defensive. As hard as this little trip in the ambulance was for me, I have also tried to concentrate on the fact that my boy is showing his stuff!!! And for that, I am thankful.

Monday we got a call that the wheelchair lift was in, so Tuesday morning I brought the van in for installation. We are hoping to pick it up today. In the meantime, I have a rental van. Tuesday, we found out that the wheelchair was ready!!!! We are beyond pleased with how it turned out! Marcia and Dan did such a WONDERFUL job constructing a seating system that is PERFECT for him. For the first time in his life, my boy is consistantly holding up his head and not hanging off the straps :*) It has been wonderful to see. Here are some pictures!

This is Ann our PT at Mayo, with Marcia and Dan, the specialists who made his seating system.

Getting it just right!

How stinkin' CUTE is this?!?!?!

Playing his piano at home!

Sitting without the tray. Doesn't he hold up his head BEAUTIFULLY?

The chair with the laterals out, so you can see the back. They made it especially like this so he doesn't get any pressure sores. This design is highly recommended for spina bifida kids. There is also a cut out for his tailbone, but it is covered with the fabric.

We are just so pleased with how the chair is functioning for Jacob and for us.

Not much else going on here right now...I think we've had enough excitement for a lifetime this past week! Yesterday marked the 4 year anniversary of Jacob getting so sick....tomorrow will be 4 years since we learned the extent of his brain damage. He has come so much farther than any of us could have ever hoped for...thank you God.

Love, Karla

Sunday, September 17, 2006 10:13 PM CDT

Hello everyone! What an exciting weekend we had! Dave and I celebrated our 10th anniversary on Thursday, the 14th. We left for Milwaukee on Friday after dropping the kids off....Michael went to his dad's, Devin went to my friend Amy's, and Jacob went to respite care for the first time. Dave and I had a wonderful, romantic getaway stay at the Sybaris. It was a beautiful place.

Obviously Jacob wanted to let us know we were away too long because we got a wake up call this morning from the respite care worker Katie saying an ambulance had been called....Jacob was seizing so bad, 12 times that were counted, and was having problems breathing. When the ambulance got there, his sats were in the 50 which is not good at all.

Of course, we were 3 hours and 50 minutes away...which ended up being a little over 3 hours in the end. It was such a horrible, horrible feeling knowing my baby needed me and I couldn't be there. Katie was WONDERFUL though and took care of things so well that I didn't have to worry about his care.

Once we got there, I went to him and wanted to pick him up. Instantly, his heartrate went from 180 to 130 and as soon as I crawled onto the bed with him, his eyes went from incredibly dialated back to normal. And the sweetest thing came out of his mouth...NA NA which is how he says MAMA! :*) He started smiling and talking and went back to his normal self.

We waited 2 more hours and then were discharged. I didn't want him to go home until I was able to assess him myself. Labs looked good, chest x-ray was clear, and they were able to suction a lot of the gunk out since he has a cold too.

He has been sleeping since 4:00. Hopefully he will have a nice night. We will head to Mayo tomorrow to see the neurologist. We had an appt scheduled already, interesting huh?

Love, Karla

Wednesday, September 13, 2006 6:16 PM CDT

Hello everyone! What a busy week we had last week between school starting and getting ready for my niece's wedding. Friday, I picked up the kids early from school, grabbed lunch, got Dave, and headed to the Mall of America to pick up Devin's tuxedo. It needed a few alterations, and then we were ready to leave for the rehearsal and groom's dinner.We headed for the hotel and the boys got to swim a little while I did ironing. Nothing like having a little peace and quiet :)

Saturday, we got up and got ready. We got to the church for pictures and once those were done, we had lunch while we waited for the wedding to start. The wedding was beautiful! Devin did such a nice job. I think he took it very seriously!

After the wedding, we had more pictures in the park, then headed to Dairy Queen with the wedding party :) Devin got his starkiss stuck to his lips!!! OUCH Of course a kid yanks it off and so it was bleeding.

Next, we headed for the reception. It was decorated so beautiful with roses, candles, and lights everywhere. Kelly had saved all the roses George gave her, so my sister (her mom) made candles with the roses pressed along the outside. Inside this candle, she placed a votive, so the outside never burns. It is really pretty.

During the dinner, people could get up and sing a love song in order for Kelly and George to kiss. Both Michael and Devin got up there. Devin sang a new version of God Bless America in his opera voice. If you haven't yet heard his opera voice, you're missing out! LOL Anyway, the song went, "God Bless America! Kelly and George are in love! Stand beside her, and guide her, through the night with the light from above. Stand beside her, and guide her, through the night with the light from above." Everyone was cheering. It was too cute!

The boys had a great time getting out on the dance floor too. Devin was shy at first, but then he was a dancing fool! Michael was busy showing all his moves too! LOL!

Sunday, we went to my sister's house for the gift opening. Everyone was so tired and it was so dreary outside too. We went home and slept most of the way, everyone except Dave and Jacob that is!

Monday, Jacob started school. He is going in the afternoon this year since he is a big 4 year old! He was so excited when I told him he was going to see Miss Marilyn and Miss Lori. They are just awesome with him. He also has another aide working with him named Miss Peggy, along with all his therapists. He has a new speech therapist and a new vision specialist, but has the same PT and OT. I think everything is going well so far. He is really tired by the afternoon, but he is doing okay.

Here are some pics of his first day!

We are still waiting on the parts to be delivered for his chair before they can start working on it. After that, it will be one or two days before it is ready. I totally give up....

Anyway, otherwise everything is going okay! Make sure you check out the pics in the photo album too.

Love, Karla

Monday, September 4, 2006 9:26 PM CDT

I went up to Rochester for the wheelchair on Thursday morning. There were many people in the room! The social worker, our physical medicine doctor, the PT, 2 people from the wheelchair company, and a couple who do custom seating systems and work a lot at the Shriners Hospital. Me, the smart aleck that I am, had Devin ride in the chair when we came into the room. LOL! They got a good laugh about that one. We will be getting a much smaller seat, but will be able to keep the green frame. They are going to make that much smaller as well. I'm not sure yet if they can add Jakey's name back on it. We also are looking into getting tie downs on it for the bus. I noticed the straps he had on the chair said they weren't safe for transport use, another words, not safe like the seatbelts or carseat straps are, so they will take care of that too. It should be 2 weeks. Meanwhile, we can borrow a chair from the wheelchair company. It is bright yellow and has a smiley face on the back. Very cute! It has the big wheels, so Devin has spent more time in it than Jakey wheeling around the house! LOL It's really short, so it is hard for me to push, but the boys love helping me, so that helps.

I am still pretty upset about all that has happened regarding this wheelchair. It's so hard knowing that you just have to "suck it up" over and over when you are dealing with so many politics. It's extremely frustrating....and more so knowing that it will happen again and again everytime I need something for him.

We had a pretty nice, quiet weekend. Nothing too exciting going on. Spent a lot of time just relaxing and doing little things around the house. School starts tomorrow for Michael and Devin, so it was to bed early tonight! Time to get back into a routine!

Here's some pics to share from our Lion's Camp weekend. Notice that there aren't any pics of Michael. It's not that I don't love my oldest child dearly, it's that I never got a chance to see him besides at mealtime and bedtime. He was too busy with the big kids to hang around with Mama! LOL

Jacob and his buddy Joey!

Devin jumping into the lake and look at Jacob's response!

Devin had a blast kayaking.

And a couple more of Mr Cuteness today!

Hope everyone had a great weekend!

Love Karla

Wednesday, August 30, 2006 4:59 PM CDT

Hello everyone! Thought I'd wait a couple days to update about this because had I updated on Monday, I don't think there would have been anything good coming out of my mouth.

This is a long story...so be prepared! We got the chair last Tues. It was obviously too big, but the therapists in the seating clinic informed me that they would make it work....we will get a lower back (the straps over his shoulders are WAY too high and won't even stay put,) laterals, which are the ones that keep his tipping side to side, and some hip guards because his legs frog out when he sits in it. I was like, okay, if you honestly think you can make this better.

I go on with the chair all week. It seems even bigger as I am trying to use it with him. It is so stinkin' heavy trying to lift into the van, Jacob is sliding to the side, the straps aren't grabbing when I tighten them, etc. I am waiting to hear from one of the therapists when these parts have been ordered. Supposed to have them in by the end of the week. So guess what? Friday comes, no call. I call him to find out what is going on. I am told they can't get a lower back, and that he will have to SAW the back on his chair or CUT holes in the back of his cushion to put the straps through! Can you believe that crap???? This is supposed to be a seating clinic and the solution is to destroy the chair to "fix" it and make it work???? He tells me I can make an appt to get the parts installed, but not to rush. Now why the heck wouldn't I want this done right away? He said that they were a little over zealous at ordering his chair so big, that he wanted to see if the insurance would say he outgrew this one too fast. Nice huh?

Fast forward to Sat. We are at the Lion's camp and we had a seating specialist talk about chairs etc. Coincidence? I don't think so. I totally believe God puts people in your path when you need them. I asked her to check out Jacob's chair and explained the situation to her. She said there is absolutely not ONE thing right with the fit!!! That the chair is actually detrimental to his health being the way it is. Because the straps are so high up from where they should be, the trunk is not positioned right. He will get pressure sores from the straps and sitting that way can cause problems with his breathing and digestion. The lap belt is pushing on his pancreas, liver, and intestines. All the straps don't hold him in good enough that if he was to be in an accident being transported in that chair, it could kill him from internal damage or he'd literally fly out of the chair. Of course, this makes me even madder and more worried. I notice that out of all the wheelchairs there, Jacob's is the biggest, even wider than a 16 year old girl's. Nice huh?????

So I get back home, call Monday morning to talk to the place the chair was ordered through to tell them I want to send the chair back. She listened to the whole story and then informed me that the therapist had NEVER called them about the parts he needed to fix the chair. No wonder why he didn't want me to rush to make an appt with him!!!

I called our nurse and told her what was going on. She called the appropriate doctor. I also talked with our PT. I told them that I am NOT keeping this chair. I wonder how the heck they could have measured my child and transferred those measurements into this chair....that is just absolutely ridiculous. You match up the measurements TO the chair, not order one to grow into. That's like buying shoes 5 sizes too big. I was absolutely pissed off by this time because once again I have to fight for everything for him. Got a call back saying we would meet on Thursday morning to figure things out, so hopefully this will all be sorted out, as if 10 months of waiting wasn't enough already.

You know, all of this made me think of a comment a doctor made when Jacob was diagnosed. He told us how hard this was going to be and that we really needed to think about if it was worth the stress and worry this was going to place on all of our lives. Honestly, raising Jacob isn't that hard overall, it's having to rely on others for equipment and services that is the hardest part. It's having to put up with other people's mistakes and ignorance that is the hard part. Loving him is easy.

We had a wonderful weekend at Lion's Camp with the DeafBlind families. Always a good time being with other families who "get it." I barely saw the kids either...they were so busy hanging out with the other kids! Very awesome.

We are heading to back to school night at Devin and Michael's schools tonight and then off to the church for Michael's confirmation orientation. It's strange to think he is in 8th grade already! I am not possibly that old!

Please keep me in your thoughts and prayers tomorrow morning as I go through more crap regarding this wheelchair. Please pray for my sanity and ability to maintain my cool! LOL

Love, Karla

Friday, August 25, 2006 11:43 AM CDT

It's been a week again and I just can't seem to regularly get on here! We had a nice time last weekend at the Cornfest. Michael marched in the parade with the band again. Jacob seemed to like it, except when the fire trucks were blowing their horns and sirens. He didn't like that at all.

On Sunday, we went to the fest grounds to put our chairs out for the Tracy Byrd concert, got some corn on the cob, hence the name Cornfest, and went home so Jacob could nap. I headed out to Target with Holly, came back, and left for the concert. He was SO good! We were sitting at the concert, and Jacob decided to poop. I asked Michael if he could change him on the blanket by our chairs and he did. He's so great at helping like that. After he was done, a lady next to us came over to talk to him. We couldn't hear what she was saying, but Dave said, "I bet he is getting a babysitting job!" Anyway, the lady came over to us and asked if he was our son. She said that she was sitting over in her chair watching him change his diaper, just BAWLING. She said it was 20 years ago that day since she lost her son with Down's Syndrome and she had gotten up that morning, knowing it was going to be a very emotional day. Then she saw my son helping his brother.....She told us how proud we should be of him because he is absolutely wonderful for doing this for his brother and helping his mom and dad like that. She kept saying how wonderful he is and how proud we must be. Both Dave and I started crying. We looked over to where she was sitting and there was her husband, her friend and her friend's husband, all teary eyed too. Her friend gave Michael a hat from Tracy Byrd which her son, who was working on the fest grounds, had gotten from Tracy Byrd. We were absolutely floored. A man standing next to me came over and also said that you just don't see kids like that anymore and how touched he was to see that...that I should be so proud of him. I tell ya, it just absolutely still gets me everytime I think about it. We have been so blessed with such wonderful boys.

Monday night we went to our county's disabilities picnic. It was good food, lots of fun for the kids, and nice talking to other parents. I even got to check out someone's van lift and Easy Lock system which we are having installed in the van. But of course, the parts have to be on back order, so we have to wait 4 weeks for them!!! UGH!

Tuesday was the big day! We got up, got ready, and headed to Rochester for the wheelchair. It is so huge! We got it adjusted, but it still needs some parts to make it fit better, so we are going back next Friday. It's so big, that he doesn't even need the headrest, because his heads on the back of the chair. Guess we will have some room for growth, huh? I love the back of it has his name on it :)

Here's some pics!

We are heading out in a few minutes to the Lion's Camp for a weekend get together with the Wisconsin DeafBlind families. We went last year as well and really enjoyed it. The boys are beyond excited since they have so much fun with the other siblings there.

Hope everyone has a great weekend. I have so appreciated all the guestbook entries from people, especially those of you how have signed for the first time!

Love, Karla

Thursday, August 17, 2006 10:54 PM CDT

I am finally updating!!!

I had sent out the photo collage of Jacob's 4th year to lots of people on Jacob's birthday. I sent it out to our pastor, who has been there for us since his diagnosis and was there the day he was born to baptize him. Pastor Dan called us on Wed the 9th to ask if we minded if he did a sermon on Jacob for Wed night service. He talked about grace and how God has shown us his grace through Jacob's life, despite what the doctors predicted. He showed pictures of Jacob from all his birthdays and said he dared anyone to say that he wasn't interacting or they couldn't see God's grace showing through him :*) Then he shared a picture of the boys at the park and read Michael's poem. I started to cry, and Devin leans over to me and says, "It's okay Mom. Lots of other people are crying behind us too!" LOL! At the end, we sang happy birthday to him and oh my gosh, his hand went behind his head, he covered his face, and all you could see was a smile between his arms! He is so amazing! He absolutely loved the attention!

I took Jacob in last Friday for his physical. He is doing SO good! Do you realize he hasn't been in the hospital since June 2004? WOW! He weighed 33 lb 11 oz, which is the 30th percentile, and was 37 3/4", which was the 7th percentile. Honestly, I think he is actually more like 39 in he is stretched out good, but his legs don't stretch out all the way at the knee. Anyway, she was asking if he had been sick lately or anything, and honestly, he has done SO good. If he gets a cold, he pretty much gets over it just like you or I do, I don't even need to give him any meds to help get him through it. He has never even had the stomach flu which is pretty amazing! He got his DTAP, polio, and MMR with chicken pox mixed in, which are the typical Kindergarten shots. So he is all caught up until middle school I think! He will get the flu shot and hepatitis A in October.

Jacob had a great party last Saturday. We had a Subway party sub with all the fixings, chips, fresh fruit salad, and oreo salad (which was DELICIOUS!) The subs were a big hit! We played pin the heart on Barney and a sucker pull game for prizes. The kids loved it. Then we opened presents. He got a gift card for Toys R Us, a cute jogging suit, the coat zips and has a hood so I can use it anytime, more Barney movies, pudding, suckers, and some cute shirts. One has the Beatles on it and the other says, "It's my brother's fault." Here's some pics of him opening presents with Michael. The pictures have a weird glare in the middle, so I can't get the red eye out, but I still have to share :)

Jacob was listening so closely when Michael was reading his cards.

He loved the tissue paper and even tried to help rip some of the paper!

Michael is such a loving bubba :)

Then we had cake. He LOVED it!

This is his reaction anytime anyone sings Happy Birthday to him!

He had so much fun eating him cake! He grabbed handfuls and LOVED the frosting! He even ate some of the cake and never gagged at all.

LOOK AT THAT HAIR!!!

Here's some more of the cute Birthday Boy!

On Sunday, we went to Wisconsin Dells. The boys had a lot of fun at the waterpark.

Here's the cute Batboy!

Jacob loved the wave pool. We sat at the edge where it was just deep enough to come up on his tummy. He'd giggle everytime the wave came :)

After the waterpark, we walked over to the rides. Jacob was looking cute as ever of course!

Jacob went on the merry go round with Daddy. I think he really liked it!

The boys really enjoyed riding on lots of rides too. I think the highlight of their day though was eating at IHOP when we were done. They are still talking about how good their pancakes were!

I have some good news about the wheelchair. It has been ordered and is in mid transit to Rochester! They had some issues with the seating system, but looks like it should be here on Monday. We will go up Tuesday morning for a fitting. We found out that the insurance has decided to pay for it....after 9, going on 10 months of fighting for this.

We also found out this week that the lift has been approved! We are waiting for the parts to come in and then we will make an appt for it to be installed. The installation will take three days. I can't wait to start using the lift and either can my back!

Last night, we met with a family who is certified for respite. Dave and I are planning on going away for our anniversary in Sept, so we wanted to start making plans for Jacob. We were very pleased with both of them and think it will be a very good place for Jacob to stay. They have a 4 year old daughter who Jacob thought was very amusing. In fact, he laughed at her quite a few times.

I have a great Devin story for ya! While we were there, Devin starts saying he was hungry. Well, he hadn't eaten his supper very good, so we mentioned that he should have eaten more supper. The lady commented that it sounded like her daughter, in fact, she still had her plate on the table waiting for her to finish eating it. Not long after, we see Devin eating something and I ask what he had. He said he was eating some of her chicken from off the table!!! I swear, that kid has lost all sense of shyness. He is so used to meeting people, going places, and doing things because of Jacob that he comfortable no matter where he is!

Hope everyone is having a great week. We all really appreciate all the birthday wishes for Jacob :)

Love, Karla

Tuesday, August 8, 2006 10:37 PM CDT

Hello everyone! Last night, my bubba Michael shared a sucker with me!

It was SO good!

Then all of a sudden it was gone and I didn't know where it went.

My mommy and my bubbas were laughing so hard at me. They said it was up there. So I looked up

and guess what? I found it in my hair! Silly me!

It was my birthday today, can you believe that I am 4 already? Mommy put some pictures of me on the photo page from when I was little. You will have to check them out!
Here is the pictures from my 4th year.

When my daddy got home from work, we went to the children's museum. I rode on the firetruck and dressed up like a fireman!

Then, I played the piano!

My bubbas were playing in the Kwik Trip store, so I had to check it out.

I thought I'd pick up a few things while I was there! LOL

(Mom says they are so pathetic! Over actors!)

After we were done playing there, we went to the ice cream store for a treat! We ate our ice cream down at the ocean....ooops I mean the Mississippi River.

It was so yummy! I ate all my ice cream and just had a flattened, gooey ice cream cone left!

The ducks even visited us as we sat by the river. When they went QUACK QUACK! I laughed SOOOO hard!

We came home and I opened up some presents. Then I snuggled with everyone as they told me how much they love me :)

My birthday party is on Saturday! I can't wait! Thanks for all the cool birthday wishes today! I love to hear from everyone!

Love, Jakey

Tuesday, August 8, 2006 10:37 PM CDT

Monday, July 31, 2006 10:24 PM CDT

Hello everyone! I am FINALLY getting around to writing again! It has been a crazy last few weeks! Things just continue to get more and more intense for Holly and Maya. Maya was hospitalized last Monday with 4 different bacteria in her central line. Holly has still been feeling so much pain and was rehospitalized again over the weekend. She had some tests today and was discharged. Hopefully things will turn around for them soon.

I've been having lots of pain in my left heel for about the last 2 months from the heel spur I have, so lucky me got to have a cortisone shot in my heel last week. So far, it hasn't made much of a difference and I am still in a lot of pain, kinda feels like a nail going into my foot with each step. Nice huh?

Well, after a very emotional week of dealing with everyone involved with getting Jacob's wheelchair approved, we finally have it ordered. Our social worker at Mayo is so wonderful and secured some funding for his chair in case the insurance won't cover it. Once we have shipping confirmation, we will know when we are able to pick it up. I tell ya, after talking with some people who shall remain nameless, I just had it. I work so hard to take care of my son, make sure he gets the things he needs and help him maintain his skills, and yet I continue to have to fight for everything he needs. Everything has to be a big ordeal in order to get what he deserves. And yet, when I ask for help, somehow I am supposed to be super mom and do it all by myself. The final straw though was when I saw the mark on Jacob's back from his wheelchair being too small. That sent me over the edge. Or maybe it was the fact that it's hard to have any time to myself lately...that kind of did it too. Anyway, as most of you know, you don't mess with the mama bear and she was in full force last week. Part of me always thinks of the comments that were made by another few persons that shall remain nameless,that Jacob wasn't worth it and that we should just let him die, since he'd be such a burden to all of us. I'm sorry, but this child hasn't even been CLOSE to a burden. Yes, it is hard, but he is worth everything I have ever done and will always continue to do. However, if I could have one wish it would be that everyone else did their own damn job so I can do mine! LOL!

Anyway, enough of the rant. Jacob has decided that the van is the perfect place to let every ounce of his voice be known. Not sure if he thinks he is singing along with the music or what, but as long as it is when Devin wants to talk, it's all good. Yes, he has learned the fine art of annoying his brothers. Picture Devin wanting to tell me something and just as he starts to say it, out comes a loud squeal from Jacob. And this didn't just happen once as a coincidence, no, it happened many times. In fact, enough that Devin decided to scream back at him, "JACOB! STOP INTERRUPTING ME!" to which we all started hysterically laughing. The one interesting thing about having a special needs child is the things you once thought of as naughty are now celebrated to the max. It is hard not to want to cheer even when he is being a little brat....like the many times he has bit Devin's fingers this past week. I think there is a little hostility toward Devin, huh? LOL He does try to make up for it with Michael though, especially when Michael was trying to take a nap the other day and Jacob was pounding on his piano so hard, not letting one single song be played. No, it was more like a jumbled up mess of songs starting and restarting, just enough to cause Michael to scream at him to knock it off.

Jacob has found great pleasure in hearing us sing Happy Birthday to him. Somehow though, this also makes him extremely shy. He puts his arm behind his head and kinda hides himself, all the while smiling like crazy. I find it interesting that he has always loved the Happy Birthday song....makes you wonder why.

He had lots of fun showing off his Happy Birthday song shyness to his cousins and aunts and uncle this weekend. We spent the weekend in the cities for my nephew's birthday and my niece's bridal shower. Dave spent the weekend at the Osh Kosh fly in/airshow. After having a great weekend away, Dave was informed that it was now my turn to have a weekend to myself...I think that is only fair don't you? :)

If anyone has any good birthday gift ideas for Jacob, I would love to hear them. I have no idea, mostly since he doesn't really play with a lot of toys either...maybe something a little unique? Anyway, it was hard for me going down the toy aisles today. There really isn't a lot he can do and well, sometimes it just stinks being reminded that our almost four year old isn't doing much more in the play department than a 2 month old is. BUT he does like his piano! So there is one plus :) I also think we are once again going to have a Barney party, 3 years in a row, but who cares, right? Part of me is stuck in thinking that the other boys always had a different theme every year, but truthfully, he really only likes Barney, so I think it's okay. Plus, Walmart bakery has a really cute Barney cake now! LOL!

Hope I am not forgetting anything after not writing for over a week! Check the birthday countdown above the journal! Not too long now and we will have a big 4 year old in our house!

Love, Karla

Thursday, July 20, 2006 3:30 PM CDT

Hello everyone!

It sounds promising that Jacob *might* actually get his wheelchair soon. One thing needs to be resent and if it actually gets done (note the sarcasm here) the chair will be ordered. And to think it only took 9 months! WOW! What an amazing record! It blows my mind that someone who can't walk, will never walk, is expected to sit in a chair that is too small for 9 months before certain people actually do their job and get the paperwork in order.

Michael has been helping out babysitting a lot for me lately, especially when Holly was in the hospital and afterwards when I have been helping her out. This is what happens when you let your teenager babysit!

Here's another video of Jakey too. Listen for him to say all done at the end :)

Love, Karla

Tuesday, July 18, 2006 10:16 PM CDT

Hello!

Boy has it been HOT outside this week! We have finally gotten a little break from the humidity today. It makes it so hard to even want to go outside in all this when I know it will entail lifting the wheelchair in and out, then having to buckle him into the carseat, only to have to repeat again once we get where we are going. Hopefully soon we will get funding for our lift.

The funniest thing happened yesterday. I was getting Jacob dressed and Devin came into the room. He started trying to climb into Jacob's crib and I started pretending Jakey was telling him to get out. Devin was arguing with Jakey that it was HIS crib and I once again pretended to be Jacob fighting back. I will have to say I made a pretty good 3 year old! LOL! Anyway, Jacob thought this was all absolutely hilarious, especially when I let him hit Devin on the head! He laughed SOOO hard. I wonder if he has wanted to hit him in the past or something!?!?!? LOL!

Another big first is coming....Jacob will be starting Sunday School in the fall! We have been in contact with the Sunday School director regarding him starting. I really think he will love it, especially the singing. One concern we had was how we'd get him downstairs, but it sounds like we will have some men to help us lift his wheelchair. The section of the church he'd be in would need lots of remodeling in order to have it totally accessible. We are more than fine with taking him down as long as we have help and he's able to participate. There was some concern whether he'd need one on one care, but I think that since he will not need meds or a feeding during that time, he should be fine. My biggest concern, as it is with anything, is that he is accepted for who he is and that people enjoy him for who he is. I strongly believe that he needs to be in Sunday School....I think it will be good for everyone involved. Another one of those big deals for me. You better pass me a box of Kleenex the first Sunday he is in the front with the kids singing :*)

I'll leave you with Jacob's latest amusements.....

*The cart area at Walmart. Can anything be funnier than the sound of a bunch of carts being pushed all together? This totally cracks him up everytime we go to Walmart.

*Michael being a crazy driver. He was pushing Michael in the store today and running into things. Jacob was hysterical.

*When our dog sneezes. He also likes when the dog jumps up to look out the window and her collar jingles. It's even funnier though when we throw a toy for her to chase!

His absolute favorite still is his bubbas playing. He loves listening to them and will squeal so loud to add his 2 cents worth!

Here's a picture of sleeping beauty tonight :)

Love, Karla

Sunday, July 16, 2006 2:32 PM CDT

Hello everyone! Sorry I've been slacking on the updates. We've had quite the week. Many of you also read Maya's site so you know what happened last weekend. Holly was having lots of abdominal pain and had to have emergency surgery to remove a fluid filled mass the size of a basketball and another mass the size of a baseball. She was able to get out of the hospital on Thursday, but is still having a lot of nausea and pain, making it hard to eat or drink much. Please continue to keep both Holly and Maya in your prayers. This has been hard on Holly since she is used to doing so much for Maya. Thankfully, we have been blessed with excellent nurses for Maya and lots of caring people who are willing to help out.

Jacob finished summer school this week. He sure enjoyed being back with his friends and teacher for the past 3 weeks. We are still seeing break through seizures every day. They only last a few seconds, but they still are worrisome when I know they can turn into happening too frequently rather suddenly. Thankfully, we haven't seen any changes in Jacob developmentally since they resurfaced. We have increased the PM dose of his Topamax in hopes that will help. I have a feeling we will end up at the dose we were prior to weaning him off of it. Keep the prayers coming for seizure relief.

It's hard to believe that in just a few short weeks, Jacob will be turning 4. Where has the time gone? I remember so much worry and fear surrounding much of his pregnancy and first 2 years of life. Things have definitely calmed down, I am sure part of it is because as he has grown, we have also grown. Not only in our knowledge of him and medical procedures, but in our devotion and determination for him, our view of life, deepening relationships with others, and our faith. Today we had the worship band at church sing a song about the storms of life and the things that happen that try to make you believe you will not overcome them, that you cannot do something, yet here is God encouraging you on and you can do it. Had you told me 4 years ago how much the next four years was going to hold, I wouldn't have believed I could have ever made it through. It's amazing what you can do when you love someone.

Yesterday, I was holding Jacob on the couch when my shirt was suddenly getting wet. I figured I had opened the plug on his feeding tube and felt for it so I could close it. I am constantly aware of where his button is so it's not being pulled. Well obviously I wasn't too aware because the tube had pulled out! It got stuck on the buttons on my shirt and came out, with the balloon still inflated. I would really like to know how that came out so easily with a full balloon. So we are 2 for 2 in the last couple months. The last tube's balloon had a hole in it and that tube fell out too. Thankfully it didn't happen when someone else was taking care of him that wouldn't have been totally freaked out! LOL!

Hope you are all having a great weekend! I will try to get some new pictures on here soon. If you haven't seen the last two video clips of Jacob, just click on the journal history.

Love, Karla

Friday, July 7, 2006 0:05 AM CDT

Blessings in Disguise

Since that day, April 30, 2002, when we found out the news that Jacob was going to be born with many challenges, I found myself trying to see the littlest blessings in what were very trying times. Then when reality really hit and things were SO much worse than we could have ever imagined, I not only tried to find the blessings, I NEEDED them...they were my lifeline so I would not wallow in my grief, and they were my link to my faith in God's mercy. I have had so many "coincidences" or incidences happened where I have felt God's presence in making things not only okay, but very rewarding. It continues on a daily/weekly basis where I am reminded how lucky I really am. We were in the grocery store the other day, Devin, Jakey, and I. The boys have been so wonderful with helping me push Jacob in his chair so I can do my shopping. Devin was thrilled to be able to push Jacob and instead of pushing him from behind, decided that it was much more fun to hug the front of Jacob and push him that way. Jacob couldn't have been more pleased with all the attention bubba was giving him, with the proof on his face and the wonderful conversations that were going on between the two of them. There were so many people who were so tickled by this display, except for one lady whose eyes I was ready to poke out! But hey....there's always one of them right? I was stopped twice, once by a lady who told me just how special Jacob was and by another man who was a Shriner.

On the Fourth of July, we went to Riverfest. It was finally a cool day after a few days of very hot weather. The boys had so much fun riding the train with Jacob, walking around watching different events, and of course, they had to get their favorite foods. We were sitting along the Mississippi River, enjoying the day, feeding Jacob through his tube, when two people who were working there came up to say hi to Jacob. They were very interested in him and loved his smiles. The man commented on his feeding tube and said he was so sorry...this I took as a perfect time to educate him. I told him that actually it was the best thing in the world for Jacob and how happy we have been since he got it. I think it was good for both of us to learn from this experience, for him to know there is no need to feel sorry for us, and for me to share my son with others.

Not long after, there was a little girl sitting next to us that took a great interest in Jacob. She asked why he had to sit in his wheelchair, and I explained that he couldn't walk. She asked if he was just a little baby, and I said, "No, he is almost 4!" Of course this lead to "Why can't he walk?" and I explained that he had a bad owie on his back when he was born. She asked if the owie was better now, and I said that it was a little better, but he still couldn't walk. I said, "He sure can smile cute though can't he?" to which she said YES and smiled really big. Then she proceeded to notice his right hand which isn't very functional. I explained that Jacob's brain didn't work the same as hers, to which she replied, "Well, my brain works!" and went on her merry way. What a funny child! I love talking to kids about Jacob. They are so honest and accepting. Once again, it did my heart good.

Jacob is feeling so much better now. He is back to his normal self and you'd never guess he was sick last week. He's been acting so silly lately too. He'll growl at you, you growl back, he growls again. It's great fun. The other fun game is playing horsey. He loves the "bump bumps" and like to go "AWWW AWWW!" while you bounce him on your knee. If you stop, he will make himself bounce a little and say "AWW!" until you bounce him again. We were riding in the van today over some bumps and he was doing it too! How funny is that? He loves his Barney in Outer Space movie. It makes him so excited. Here he is watching it....now you know why we have so many Barney movies with how excited he gets! And this is mild compared to how much he normally squeals!

I took Michael back for a recheck on his ear. It looks like it is healing really well and the fat patch is adhesing. The doctor had to clean it out a little with suction, but he said that was pretty normal too. We will go back in 3 weeks and hopefully it is totally healed by then.

I added pictures to the photo page of our 4th of July. Hope you enjoy!

Love, Karla

Sunday, July 2, 2006 8:30 PM CDT

One Sick Jakey

All week, Jacob seemed a little off. He would be his normal self in the morning and then sleepy in the afternoon. Thursday, I made an appt to see the pediatrician because I suspected he had a UTI. Sure enough, the old mama intuition was right. Jacob got blood drawn and a throat culture also. Everything else was normal except for the urine. He got a shot of antibiotic and needs to be on meds for 10 days. By the time we left, Jacob wasn't looking good at all. When we got to the pharmacy, our favorite pharmacist held him so I could sign the forms and proceeded to rub it into all the rest of the staff that she got to hold him first! LOL I just love our pharmacy :) By morning, you'd never guess he had ever been so sick. Thank God. I was prepared to pack for the hospital. Even though he's had UTI's and he's been fine, I don't think I can quite get over the fact that the first one nearly killed him....

Friday morning, we woke up, got Devin ready for school and Holly and I set out looking for

I have been finding the best deals this summer! Once you start, it is so addicting too! We picked Devin and Maya up at school and then ran around some more. I tell ya, by the time I got home in the afternoon, I was beat!!!

The rest of the weekend has been a whole lot of nothing...it was so hot outside that we didn't really want to go out and do much. Hopefully we will be able to head into La Crosse for Riverfest Monday or Tuesday. Michael came home today after spending 2 weeks with his dad. He had a lot of fun spending time with him.

Hope everyone is having a great 4th of July weekend/week!

Love, Karla

Wednesday, June 28, 2006 8:02 PM CDT

The Death of a Clam at the Mississippi Ocean

Today was a perfect day outside, not too hot for sweaty old me, so when the nurse came, Devin and I headed for the beach. We called Holly, who was in La Crosse already, and she decided to join us. Maya enjoys playing in the sand, but the walk from the van to the blanket isn't quite as fun. The whole time as she is walking she is saying, "Oh DEAR! Oh DEAR!" That girl cracks me up! Devin had a blast finding shells, in fact he found quite a few. His best find however was a clam that was slightly open. I asked him to put it back in the water since I thought it was still alive. Not 2 minutes later he comes back with the shell and explained that he had opened it and "just took the meat out." ROFL! I tell ya, now I have a clam killer on my hands! However Devin will tell you it was already dead. That kid just cracks me up too!

Summer school has gone really good so far. I know that at some point in the next couple weeks, Devin will miss the bus since I somehow keep falling back to sleep after the alarm goes off! Luckily I have woke up again in time to rush him out the door. Have I told you the bus comes at 6:53?!?!?

Jacob is having fun too. He's very excited to be seeing Miss Marilyn again. Today he came home sporting some lovely green fingernails and a lovely stained shirt from fingerpainting. The bus driver was sure that Jacob was actually the art project instead of a big fish they painted! The bus driver was so funny this morning. He called to tell me he was coming and said, "GOOD MORNING KARLA! I will take that curly haired boy off your hands now!" LOL! I sure got a kick out of that!

Jacob's been a little out of sorts though. Not sure he is feeling the best. He went to bed early last night and then woke up at 3:30 AM for the day! He was quite perturbed that I didn't think it was time to be awake yet! He has also been having seizures regularly every day. They don't last long, but at school yesterday he had a pretty significant one. After talking with neuro, we've decided to increase his Topamax again, the one we at one time had him off of. While I hate to see this happening, I guess I'd rather have him restart something I know has worked in the past instead of messing around with trying something new. In a month, we will recheck his urine and have a serum creatine to see if any kidney/calcium issues are resurfacing after restarting the Topamax.

I am not sure if I have mentioned this before, but Jacob's adaptive technology teacher has taken many of his toys and modified them so he can work them. She has placed them inside a binder. When he pushes on the binder, a dowel or glue stick positioned in the right place pushes the button to active his toy! So many of his toys had too small of buttons for him to push, so he is having a blast rediscovering his toys. My favorite though is his See and Say. She put a dowel in the back of the lever and he is able to push that down to make it work!!! How cool is that?

Hope everyone is having a great week! Please leave a message in the guestbook if this is your first time stopping by or if you haven't signed in a long time. It's always nice to hear from all of you!

Love, Karla

Sunday, June 25, 2006 3:32 PM CDT

Hope everyone has had a great week! We are all doing pretty good here. We've gotten over our colds, but now we gave it to Daddy. Devin and I have no sympathy for him though and "welcome to our world" has been said a few times! LOL!

Devin and Jacob start summer school tomorrow. However, Devin doesn't really think summer school is cool...in fact he is laying on the chair next to me quite upset that he has to go. He informs me that he is smart enough and doesn't need to go. Whatever happened to the summer school is fun attitude he had before? Our school district really does have more fun at summer school than just going because you "have" to. In fact, no one said I had to sign him up, I just know that everytime he or Michael has gone in the past it was a lot of fun. So hopefully this whining will stop once he gets there! LOL Jacob will have Miss Marilyn for the next three weeks :) When I told him he could see Miss Marilyn again, he smiled SOOO big. He sure does love his teachers. He's been lucky to see his Miss Lori at church every Sunday. He even got some lovin' this morning! We have been so blessed with wonderful teachers!

This week, we found out what the big hold up has been on the wheelchair. It appears that some measurements were switched and put into the wrong spots. SOOOO hopefully after 8 long months, we will finally get the wheelchair approved! We also got a couple bids on wheelchair lifts for the van! I am so excited to not have to lift the wheelchair in anymore. He will be able to go right into the van and stay in his chair with tie downs, instead of being transferred into his carseat!!! That will be a HUGE deal!

The Lions Club was over here yesterday staining the deck. They were able to get the railings and spindles done and were planning on coming back today, but it has been pouring most of the day.

It feels so good to be heading in this direction. Jacob is growing and changing. He is needing new equipment and supplies. For so long, we lived on the edge of our seats, not quite knowing if we should prepare for a future with him. And now we are...

Love Karla

Saturday, June 17, 2006 8:08 PM CDT

Good evening! Can you believe it? Another update so soon?!?!?!

I got a call from my mom today. My uncle from West Virginia had called her to say he'd seen us on a Ronald McDonald House commercial! A while back we had done an interview for RMH's anniversary. We were videotaped and part of our interview was shown at their celebration as part of a video presentation. Obviously some of this footage has gone on to be added to commercials as well! I am hoping we are able to see it ourselves! I guess it shows us walking into the Ronald McDonald House. I remember doing this take over and over again! Very cool!

Jacob has a cough and cold and is pretty grumpy. I really can't blame him because I have the same cold myself. Jacob found it fitting to pass it to me and I passed it to Devin. Both of us are running for the Kleenex box a little too often today!

Friday was the last day of VBS. Devin really had a great time. It is so nice to see your child having a great time at church, singing songs to the Lord, and deepening their faith.

Today, was a very important day for Devin....he got his ear pierced! And I have to admit it is very cute! It totally fits his personality too. I know...I can just hear some of you screaming,"WHAT?!?!?" and your eyes rolling, but hey...I can think of so much worse things to worry about! So here is a picture of the DUDE!

Michael went babysitting again this morning. He's really enjoying himself and the extra cash. He is saving for an electric scooter. Not too much longer and he should have the money!

The other day we went to the park. The boys had so much fun running around playing while Jacob and I spent some time on the swing. Check out the photo page :)

I'll leave you with a cute little video. Jacob loves his sleepy Barney. He laughs so hard! Hope it works!

Hope everyone is having a great weekend!

Love, Karla

Thursday, June 15, 2006 7:04 PM CDT

Hello everyone! Another week has come and gone and we are as busy as always! Thursday, Michael had the surgery for the fat patch on his eardrum. It went really well, and except for being very tired that day and having the incision bleed a little on the way home, everything went as expected. He had a follow-up today and everything looked good so far...the incision is healing and the fat patch is still there, which is a huge plus! He even got the yucky bloody steri-strips off, so that was nice not to have to see them anymore. We will go back in 3 weeks and hopefully by then, the fat patch has adhesed well. Until then, no diving into the pool! He can swim, but with a earplug in.

Sunday, we went to my niece's graduation party. It was nice seeing everyone again. My sister seems to be feeling better now that the doctor switched her nausea meds following her chemo. She will be having her 3rd treatment tomorrow. Thanks for all the thoughts and prayers for her!

Devin is going to Vacation Bible School this week. Somehow in my "I'm so darn busy!" mentally impaired mind I forgot to send him on Monday. Someday I will have it all together, just you wait and see! (Okay, you can stop laughing at me now!) We are trying to find our "sync" around here now that the kids are home for the summer. We'll just get the routine down when summer school starts and throws us all for a loop again! Devin goes early, way too early for me, and then Jacob goes an hour later. Kinda weird, but oh well!

The busy season has come for Dave at work. He is working 10 hours a day now. He comes home very tired after being out in the hot sun all day. He and the boys have been getting lots of fishing in though, which has been very nice for the mama who plops in a Barney for the Jakey and has some quiet time for herself!

This week has been so sad in the Caringbridge community. Too many kids have died this week and it truly breaks my heart. Most of the caringbridge sites I read are families I have never met, yet they have become close to my heart and I feel like I DO know them. They are families who are going through many of the same experiences, pain, sorrow, and joy that we are, and because of that, they are like family. Before Jacob, I was so oblivious to so much....yes, I had heard of many medical conditions that plague children, but it was always something so far reaching, something that wasn't in my immediate world, and definitely nothing I would have ever thought would happen to me. My eyes have been opened to so much more than I could have ever imagined. Sure, I said the cliques, you know the ones where you say you wouldn't get any testing during a pregnancy because if something was wrong with your baby you'd love it anyway....but does any of us truly think it would happen to US? I don't think so....but when it does, you somehow get through it and along the way, you find many others just like you, people you can share the happy times and the painful times with....all the ones I have "met" through Caringbridge, the Ronald McDonald House, and many others along the way...

Love Karla

Wednesday, June 7, 2006 7:37 PM CDT

Good evening! Our first week of summer vacation is going pretty good so far!

Saturday, Devin and I spent time with Holly and Maya at the park. The two of them had a great time blowing bubbles and playing in the fountain. Devin has asked many times to go swimming at the beach, so he was pleased when we let him swim in the "ocean" aka the Mississippi River. Who knew that Wisconsin/Minnesota had an ocean? He was so thrilled and had a blast while Maya spent time scooping sand with a stick :)

We had a graduation party on Sunday. It was an added bonus to have Grandma and Grandpa come over to spend the night too!

Monday, was an early morning heading to Rochester. Jacob saw physical medicine, physical therapy, dietician, and neurology, as well as a visit from the social worker and nurse. It was a good day with lots of good reports. It seems that everything is going better than we could have expected and he is maintaining and gaining in many areas. We are increasing his fluid intake and will also start offering milk. His weight and height are pretty steadily climbing. He was 33.51 lbs and 37 inches (he shrunk 2 inches from last measurement LOL) so we want to watch so he doesn't gain too much. We are also keeping track of the little episodes I questioned as a seizure, but the neurologist isn't too concerned at this time. We are going to check his urine for calcium since he is back on a low dose of topamax and hopefully it isn't affecting that again.

Yesterday, Dave came home to tell me that he took a dive at work...he stepped between the dock and the trailer of his truck and then proceeded to get hit in the head with a door! He was mighty impressed with his ability to do the splits. Now, most wives might have been concerned that he was hurt, but not me! I had to pick myself up off the floor because the visual was just too much! LOL!!!! Nothing like having a laugh at your husband's expense!

The boys have gotten the fishing bug. They have been out almost every day this week. I am amazed at how good Devin is! Believe me, if you talk to him, you will hear all about the fish he has caught and like a true male, the size of the fish that got away gets bigger and bigger with each telling of the story! Dave got smart though and took pictures of the ones he caught with his camera phone for proof! LOL!

Tomorrow Michael is having surgery on his eardrum. He has a small hole in it from where the tube fell out over a year ago, so they are going to take a piece of fat from behind his ear and patch it. My friend Diane's boy Jeremiah is also having surgery tomorrow to remove his kidney which was damaged from kidney reflux. I have a meeting in Rochester tomorrow night, so I will be able to stop by and see how that went. Pleas keep both of them in your thoughts and prayers tomorrow.

Hope everyone is having a wonderful week! Please drop a note in the guestbook so I know you stopped by!

Love, Karla

Friday, June 2, 2006 7:14 AM CDT

Good morning! We are winding down a full week of fun for the boys. Today is the last day of school. Michael spent all day yesterday at a state park with the whole 7th grade. Devin had an ice cream party and some fun outdoor activities this week. Jakey and I are getting back into a routine together since he was done with school last week. Yesterday, we spent most of the day with Devin helping his teacher get stuff off the walls, papers sent home, etc. There is a part of me, the teacher part of me, that surfaces so often still. It felt good to help as weird as that sounds!

We are making plans for our days so that they aren't spent in front of the TV or X-Box. When I mentioned having to actually READ everyday, I thought the world was going to end for a couple of children in the household. Such a mean mom I am! LOL! Because of where we live, we aren't able to get resident rates for any of the pools, so unless I want to pay an arm and a leg, the boys probably won't take swimming lessons this summer. There are plenty of other things to do though, so I am sure we will keep busy!

We will have quite a few visits to the doctor the next few days. Michael and Devin have their physicals today. Monday, we will have Spina Bifida/CP clinic. We will see physical medicine, physical therapy, social worker, dietician, and neurology. It is always good touch base with everyone on how things are going with Jacob. We are still seeing some 1-2 second seizures, but not really sure if it is anything to worry about. The boys have dentists appts next week as well, then Thursday, Michael will have surgery to close the hole left in his stinkin' ear for over a year now. He has had problems with his ears his whole life. The left one decided to behave and has been normal for a few years now. The right one still is causing trouble and we've had to have tubes in it different times. The last one fell out, but never closed so he will have a piece of fat taken from behind his ear and used as a patch to cover the hole. It's amazing what they can do! Anyway, we will need to be there early Thursday and will be home a couple hours later. It's amazing how things like this are no big deal anymore. LOL Then Friday, it is my turn for the doctor. Hopefully after next week, we will be free from the doctor for a while!

Hope everything is having a great week! Drop by and leave a message in the guestbook so I know you stopped by.

Love, Karla

Saturday, May 27, 2006 11:41 AM CDT

Hello everyone! Michael had 4 friends sleep over last night. Obviously they didn't understand that when you have a sleepover, it means that you actually SLEEP. Yes, they stayed up all night, except for one friend who they let sleep for a couple hours. The best part of it is that I didn't know they had stayed up all night until I woke up this morning. Thankfully they are a bunch of awesome kids who have respect for people and their need for sleep even if they don't need any! There were no fights, no one wanting to walk home, and a relatively low mess. Still can't believe he is 13 already!

Thursday was Jacob's last day of school. We decorated pillowcases in the room and everytime we'd get half way through tracing a stencil, Jacob would inform me he was all done. LOL Then, we went for snack in the gym. Jacob loved the cupcake! In fact, he grabbed it and smooshed it immediately and then proceeded to lick the frosting from his hand. Check out all the pics from his fun at school this past week!

It is so hard to believe that he has been in school for one whole school year. He has come so far this year I think. He used to cry when other kids screamed or cried. He doesn't anymore. He used to cry when others sneezed or coughed, and besides a little incident with Miss Lori sneezing the other day, he has been wonderful. He LOVES the other kids, all the activity they bring, and the kids truly love him too. He has gone from LOTS and LOTS of gagging at anything that went in his mouth to holding foods, licking them, and even allowing some texture into his mouth! He has started biting foods, his toothbrush, and my fingers so much more. He can actually handle the food he has bit in very small amounts with little to no gagging. He is getting much better head control and for longer times. He is lifting his head while he is on his tummy for longer amounts of time. Maybe someday he will use his arms to push up even :) He is reaching out more and banging on things. He is grabbing things you place in his hand. The grasp is better in his right hand. He says Na Na for Ma Ma, Da Da, Ah Da for all done, shakes his head yes and no very appropriately,and says A LOT of very important Jacobese. He loves talking to others and has quite the personality. He has learned to use switches to have conversations with others and to let his needs be known. He is learning to make choices on what he wants. He is learning how to make things in his world work for him. All of this he has done this year. I am sure I am forgetting much more of what he has done....but I truly don't think he would have gotten so far if it hadn't been for such wonderful teachers and therapists at Oak Grove Family Learning Center! From the first time we met, they have had such a wonderful attitude about the Jacob. They understand how special he is to our family and know that he deserves the same respect that every child does, regardless of his disabilities. They have included him in all activities that they are able to modify for him. They are some of the most creative people I have ever met! They all go the extra yard to make him part of the classroom, one of the kids, and for that I can't thank them enough. We have truly been blessed by the staff there!

Friday, Jacob and I had a picnic with Devin at his school. The principal cooks brats and hotdogs for everyone. It was delicious! Next week, there will be an ice cream social at Devin's school, Michael's going on a field trip, and a lot of other busy stuff for the end of the year! They will be done on Friday. It will be so nice to be able to sleep in a little once school is done! LOL

Hope everyone is having a great weekend!

Love, Karla

Tuesday, May 23, 2006 7:56 AM CDT

This is a poem that Michael wrote for school....I am SO amazed and proud....

Special Little Guy

I am a regular kid with disabilities.
I wonder how it feels to be able to run and play.
I hear God tell me to never give up.
I see blurry things that happen around me.
I want to be able to play with others the way that they do.
I am a regular kis with disabilities.

I pretend I am out of my wheelchair and running around the house.
I feel the urge to never give up.
I touch others' hands when they say hello.
I worry about nothing because of the support from friends and family.
I cry when other babies scream or cry.
I am a regular kid with disabilities.

I understand the meaning of life good or bad.
I say to believe in the gift of God.
I try to keep myself healthy.
I hope that one day the world will have no bad people and they will accept the look of all.
I am a regular kid with disabilities.

Good Morning! It's been over a week since I updated. Can you say LAZY?!?!? I don't know why it's been so hard for me to sit down and actually update...no excuses I guess!!!

School is winding down for the year, which means lots of field trips! Michael went to the Minneapolis Science Museum last Friday. Devin and I went on the La Crosse Queen yesterday for a cruise down the Mississippi. SO beautiful. For those of you who aren't from here, it is such a beautiful area along the Mississippi with the bluffs and coulees....and spring is always even more beautiful. We even saw a bald eagle in a tree along the river.

Jacob went mini golfing yesterday. They had a tube he could drop the ball into. Jacob thought it was hilarious when the ball went SMACK against the wooden edges as it came out of the tube. Today, he went to the farm down the road from us. He got to see the cows, feel the corn, and even got to feed a baby cow a bottle. I stayed for a few minutes to get a few pictures before I had to run off for an appt. Of course I missed the bottle part though! I will add pictures in the photo section.

Jacob is done with school on Thursday. It's hard to believe it has been a whole school year already. WOW! They will have a last day of school party that I will go to Thursday. Friday, Devin's principal is grilling brats and hotdogs for lunch. That is always fun to go to. Then next week will be an ice cream social at Devin's school, with the last day of school for Michael and Devin being on Friday.

Saturday, we were eating supper and I gave Jacob some Cheetos. Normally, everytime you give Jacob some food to hold, he licks it and licks it like crazy. He started licking the Cheetos, in fact, we like to call him Lickety Doo Da, and went through quite a few, licking all the cheese off. Suddenly, he started leaving them in his mouth more and before we knew it, he was trying to bite them! He bit off a chunk and actually ate it without gagging :) He has come so far in his eating, it just is so incredibly SWEET as the boys would say! Check it out :)

Love, Karla

Monday, May 15, 2006 2:29 PM CDT

Hello everyone! A big Happy 13th Birthday to Michael. I truly can't believe my boy is a teenager...where did the time go. He is turning into such a neat young man.

What a busy weekend we had! Friday morning, we had Jacob's IEP meeting. We discussed his progress and updated his goals for next year. While going over everything, it really hit me how far he has come in just one year of school. He has become so social...to think the sound of other kids crying or screaming used to make him cry. He is also doing so much better with communicating and using switches. His eating and acceptance of things into his mouth is amazing. It's all so exciting. Baby steps, yet HUGE steps for Jacob. We will be starting an auditory scanning program with him to help him make choices between 3 things he would like or wants. Today was the first experiment and it seems like it will be a very possible and positive way for him to let us know his wants.

After his IEP meeting, we left for the Mall of America. We had free passes into the theme park there from our stay at Give Kids the World during our Make a Wish trip. Jacob got a bear from MOA and loved snuggling it!

The kids had a blast! Jacob LOVED the rides. He couldn't stop laughing!

It was such a sweet moment for all of us to see Jacob enjoying something so much, something we didn't always think would happen.

Devin was SO excited that he was FINALLY tall enough to drive the bumper cars!!! I don't think he could have smiled any bigger!

We ate at Bubba Gump's YUM! We told the waiter it was Michael and Devin's birthday. He came out with plates full of cool whip and asked them to stand up on chairs. He said that whoever could find the cherry at the bottom before we were done singing happy birthday, could take a $20 bill from his pocket. After we were done singing, the waiter took the plates and looked for the cherries. Another waitress said, "OOPS! Sorry I forgot to put them in!" It was hilarious! Then the boys got an ice cream sundae :) Here's some pics!

Jakey loved licking the ketchup off a french fry!

We also saw the shark from Underwater World outside Bubba Gumps!

Saturday, we headed out to Valleyfair for another fun day of rides courtesy of Give Kids the World. We took my nephew Matt with too and the boys had so much fun together. I couldn't believe how much Devin wanted to ride on! Roller coasters, upside down rides, it's crazy! Then there is Michael who dang near gave me heart failure with what he wanted to go on!! But then again, I am the world's biggest chicken when it comes to rides. I chose to keep my feet on the ground.

Jacob loved the cars and looked SO darn BIG next to Devin! Can you believe he actually sat there and didn't lean over or fall out?

How about that smile?!?!?

And here's some more fun!

Sunday, we went to the Race for a Cure. All I can say is amazing! The PEOPLE that showed up! WOW! It was a sea of people I tell ya...all for a wonderful cause. We were happy to see that my sister felt good enough to walk. Here we are after the walk. Me, Lista, Sandi, and Mom.

Lista will start chemo on Friday. Please keep the prayers and good thought coming!

Now onto Mother's Day.....

I feel so blessed to have 3 such wonderful boys, each of them unique and so different from one another, yet very similar too. Each of them gives to me a special gift in being who they are, Michael with his caring, loving, sensitive nature, he's the protector. Devin with his sense of humor, the closeness of always needing mama, his giving heart, who sees the best in others and makes friends easily. Jacob with his simpleness, finding joy in the smallest thing, giving and receiving love, sheer delight. I have definitely been blessed by my 3 sonshines :)

Love Karla

Monday, May 8, 2006 9:32 PM CDT

Jacob's Antics

Jacob has been doing SO awesome in following directions. Lisa, his speech teacher, has really been working on simple commands with him, and he has been following them more and more the last couple weeks! He goes into the office most days as well to say hi to the secretary, Roberta. Yesterday, he went in and as Roberta asked him questions, he shook his head yes and no. Then Lisa told him it was time to go and he hit the head switch with was recorded to say he had to go, see you later! What a kid!!!! He is making such nice gains!

Last night, I was wearing my glasses (I only wear contacts, but got some glasses yesterday to wear occasionally) and Jacob reached for my face. He was SOOO surprised when he touched them. Then he proceeded to rip them off my face! LOL!!! He has never done that with Dave's and he wears them everyday! I think he knew that I don't normally have them on.

*********************************************************************************************

What a beautiful weekend! Sunny, warm, short weather. The boys spent time with Dave planting a garden. Jacob loves being outside too. I had to torture the boys long enough to get pictures out by the gorgeous trees in our yard. It won't be long and the blossoms will be gone. Check out the photo page!

Friday, we went to Mayo to get remeasured for Jacob's wheelchair and to take lots of pictures to send to the insurance company. We have been trying since November to get it....but obviously it isn't a necessity to some since we can get 2 more inches of growth from his seat depth. Nevermind the fact that the seat width is WAY too small. They want those 2 inches used up! (note the sarcasm) It's gone past ridiculous, especially when you consider the fact this kid has grown so much since we first got the chair and not to mention it is the only means of transportation for him. Not like he can just walk to where he needs to go and we want a wheelchair for "fun." Hopefully something will happen soon. I've realized long ago that their idea of soon and mine are much different.

We were also able to see our Dr. Nickels when we were there on Friday. We had lunch together and some much needed Jakey snugglin' was going on. I also just "happened" to find a few rummage sales while I was in Rochester. The boys and I also had to go out Saturday morning. Word to the wise...do NOT let your children go ahead of you to the next sale with their own money or you might be the proud owner of a boxing/kicking bag and many other "treasures."

Dave and I had a blast at the Martina McBride concert. She was amazing! It was so nice to get out for a few hours. We had April, who used to be one of Jacob's nurses, babysit for us. The kids had a lot of fun playing with her kids too. Michael was such a help to her. He is such a great kid. It always amazes me how awesome my boys are...they have learned so much from Jacob, just as he has learned so much from them.

I am waiting to find out the final decision regarding Jacob's seizures/meds. We had blood drawn on Friday to check levels, so the neurologist is still trying to figure out the best course of action. Keep the prayers coming!

Love, Karla

Thursday, May 4, 2006 10:00 PM CDT

Hate to even put this in print, but Jacob had a seizure this morning. His right eye was transfixed and his left eye was blinking really fast. It lasted about 20 seconds. He was also gulping for air. It is the same seizure we saw when he was in the PICU. Tomorrow we are going to Rochester for wheelchair issues, so we will also have blood drawn to check his Lamictal levels. Hopefully it is something we can get under control again. The last time he had these kind of seizures, we added the Topamax, so hopefully we can figure something out. It's been a month since he was weaned off the Topamax. Guess I shouldn't have gotten so excited....

Karla

Tuesday, May 2, 2006 5:25 PM CDT

Good afternoon!

We had an amazing first this week! Sunday, Devin had a birthday party with his friends. We went to an ice cream parlor at the end of the party and guess what??? We actually ordered Jacob a cone! We have never ordered food for him before :) THEN he decided to really show off and ATE THE WHOLE ICE CREAM! He was SO busy licking and licking and licking. It was awesome! He even had it in his eyebrows and eyelashes. After realizing he really liked it, I handed the cone to him, and he crushed it because he was holding it SO hard! He didn't want me to take it away from him. I had to lick it a couple times to clean up the drips, but he totally ate the rest, minus the cone of course. The best part was he looked just like any other kid eating an ice cream cone. :*) It was wonderful....and of course I didn't get one stinkin' picture because I left my camera at home!!!

Sunday was also the 4 year anniversary of the discovery which began our journey...it was April 30th that we had the ultrasound which showed his hydrocephalus. It's amazing how these dates somehow become engraved in your mind....I can remember so many dates of things that happen....just another piece of the puzzle that becomes life with a special needs child. I found it quite rewarding to have such a wonderful first for Jakey that day....kind of makes the pain I felt 4 years ago worth it, to see my boy do so much that I never thought would happen, or more like dare to think would happen. A very sweet reward.

The weekend was full of birthday fun. I think Jacob loves the excitement as much as the other two. Monday was another rainy day, the kind that makes you glad you can sit in the house without anything to do. Jacob took a nap, I took a nap, it was a good day.

Today, I went to Jacob's school to finish my art project with the kids I tried to do last week before Dave needed a ride to the clinic. We made cute footprint tulips with the words Tiptoe Through the Tulips above them. It's always fun for me to help out, I miss that part of teaching. Also, it's great to see my guy interacting with the other kids and the kids interacting with him. He really loves school...you can just feel it with that wonderful smile he gives everytime you talk about it.

We have some exciting things coming up. We are going to a Martina McBride concert on Friday. Next Friday the 12th, we will be going to the Mall of America's theme park. Saturday, we will go to Valleyfair amusement park also. This is part of the Make a Wish trip Jacob had last June. There are different places you can receive free admission to the year after your Make a Wish, so we thought we better get a few trips in! Then Mother's Day is the Breast Cancer Walk. I am still taking pledges if you are able! Lista's Leading Ladies

Hope your week is going great! Leave a note to let me know you were here!

Love, Karla

Saturday, April 29, 2006 9:37 PM CDT

Hello everyone! No, we didn't fall off the face of the earth! I figured I better get on here before I started getting emails about when was I going to update! I don't think I have ever gone this long inbetween updates.

ANYWAY! First off, yesterday was Devin's birthday! Devin is seven!! He is very excited about the fact that it RHYMES. AND he informed me that he is super lucky because he has 2 numbers that rhyme with his name. Here is the birthday boy :)

He was super excited about his birthday, so excited that he came into my room at 12:07 AM asking if it was time to open his gifts yet. LOL! He got some gifts to open before school, but the best one was his new bike! Devin decided a couple weeks ago that he was mad enough about not being able to ride his bike that he better do something about it. It probably helped too that Dave had run over his old one and broke the training wheels off of it. I guess Devin shouldn't have left it right behind his truck huh? So after trying for a couple hours, he was riding around. Within 24 hours, you would have never ever guessed he hadn't known how to ride it the day before. Now, he went from hating his bike and never wanting to learn to constantly riding up and down our street. Jacob and I also went into Devin's school with birthday treats and stayed for lunch. The kids in his class are SO awesome with Jacob. Here are some pics of them pushing Jacob to the lunch room!

We had a birthday party today for both the boys since Michael's is May 15th. Well, wouldn't you know it but over half the people I invited couldn't come, so it was a quiet birthday with my mom, Dave's mom, Sandi and Bill and Matt. It was very nice though. Boys had fun and got some awesome gifts which they have spent the day playing with. Devin is also having a party with some friends tomorrow.

Holly and Maya stopped over to drop off their gifts, but Maya has been pretty tired the last few days. As always, keep sweet Maya in your prayers. We ran with Holly to have Maya's blood drawn this week. Instead of taking both wheelchairs, we decided to just let Jakey ride in Maya's. Besides, I wanted to try it out since we are trying to get one similiar to it. Well, Maya in her kind Maya way, informed us that Jacob didn't like her wheelchair. I think she really wanted to tell him to get the heck out of it, but she is much too polite for that!!!

Jacob's teacher called on Monday saying he had a seizure. I have been choosing to live in the land of "if I didn't see it, it didn't happen." Guess you could call it a little denial. Actually, I haven't seen anything since and he acted fine afterwards, so hopefully it was just a one time occurrence. I've checked with Mayo, and we all feel that it is okay to watch him. We are probably going to head up to Rochester again soon to do updated measurements for his wheelchair and take pictures to show how small his current chair is. We have been trying to get this wheelchair since November and so far we have had denials on it. Gotta love insurance who sees no need in making a child comfortable in his only means of transportation!!!

Thursday, I had gone into Jacob's school to help out with an art project. I was able to see Jakey in food group. He ate a big scoop of cottage cheese! BIG DEAL HERE! It was mashed a little, but still chunky. He also licked a pretzel, celery, ranch flavored rice cakes (which were so good he started his little "kitty" talking as he was licking!) and dried pineapple. He has gotten SO good at tolerating things in and around his mouth. I am so thankful for all the hard work everyone at his school has done this year! We are preparing for his IEP on May 12th...I can't believe he is finishing his first year of school already :*)

As I was sitting watching Jakey's food group, Dave walked into the room and asked me to take him to the doctor. He was having lots of pain in his side and thought it was something really serious like his appendix. The doctor determined he had actually pulled some muscles in his ribs. Thankfully it wasn't anything more serious!

Hopefully everyone is having a great weekend!

Love, Karla

Tuesday, April 18, 2006 11:27 PM CDT

Good evening! I just had to add the picture on the top of the page! Isn't he a GOOF?!?!? He got the shirt from Amy, his Godmother, and it couldn't be more fitting....One Cool Guy with Lots of Personality! And then there's this picture,

Don't ya just want to smooch that cute little face? LOL!
Can you tell I am so in love with my boy? Tonight, we were snuggling and he always has to kiss and kiss and kiss and kiss me. He always has to say "I YOU!" for I love you too :) I asked him to say, "I love you Mom!" and he said, "I YOU NA!" which is his way of saying Mom. How sweet is that?!?!? He can't say much else, but just the most important thing. And if you could see that cute little bottom lip pucker when he kisses or the way he shakes because he wants to kiss you so hard! I tell ya, he is a heartbreaker!

Thursday night, I headed for Milwaukee with a couple from Holly's church. It was so nice seeing the two of them again! It's been so long. Holly, Maya, and I had a slumber party :) Maya wanted all of us to sleep with her in her bed. She even moved all the way over so we'd fit! LOL! Friday, she had surgery, so it was nice to be there for that. We left Friday night, much to Maya's disagreement. She's my girl :)

We had a really nice Easter. Michael was with his dad this year. This was the first time I haven't had him with me on a holiday, at least for part of the day. It was nice for him to be with his dad though too. We colored eggs on Saturday night. Check out the pictures! Devin had a lot of fun. Sunday was church, and then we came home for an Easter dinner with Dave's mom. We sat around and visited and had a really nice day.

Monday, I brought Jacob for his followup. His pneumonia is cleared thankfully. He also gave me that cold, so I can see how he got pneumonia! Dr Brumm gave him some Claritin for allergies too. It's helping already.

Please remember my sister in your prayers as she recovers from surgery. Here is the link for the walk we will be doing in her honor if you'd like to donate!

Lista's Leading Ladies

Hope everyone is having a great week!

Love, Karla

Thursday, April 13, 2006 11:34 AM CDT

Good morning! It started out as a rainy day, but the sun is now shining. The last week has been busy like usual...don't know why I'd expect any less. The kids had an Easter Egg Hunt at Jacob's school on Saturday. We had lots of fun visiting with other parents and kids, in fact, we basically closed the place down! Then we ended up standing in the parking lot for a while too!!! Sunday, we headed for my sister's house for dinner. It was nice visiting with everyone. The boys had fun too, the kind of fun that entails grass stained knees and another run back into Auntie's house for "one last thing." It is always hard for them to leave.

Tuesday, we headed for Rochester AGAIN! I should be able to drive it in my sleep by now. We saw opthamology and nephrology. Opthamology said that Jacob's optic nerves have atrophy in both eyes, which we knew, but the good news is that it has not changed at all. He didn't feel that Jacob needs glasses for the vision he does have. He did say that he wishes he could give Jacob glasses to fix all his problems, but obviously that isn't an option. It made me feel much better that he acknowledged the fact that he wishes he could change things, to which I shared with him that his visual issues are one, if not the hardest thing I deal with concerning Jacob.

Nephrology wanted labs and a renal ultrasound. Dr Monaco was super pleased with the results, so pleased in fact, that Jacob is off TWO MORE MEDS!!!! Can you believe we have gotten off 3 meds in month??? I am so excited! So now he is only on Lamictal for seizures and Prilosec, plus his Miralax for his stools.

Jacob was in the goofiest mood I think I have ever seen him in. He was laughing at everything. Of course, my cold was a great source of enjoyment for him with sneezing and blowing my nose. Let me tell you how SMART that boy is...he knows the sound of me taking out a Kleenex from the box!!! As soon as he'd hear it, he'd start laughing hysterically because he knew the nose blowing was coming next! He was having a great time listening to the toilet flush too when we had to go to the bathroom. I tell ya, who needs toys when you can have such fun entertainment?!?!?

Our family is gearing up for the breast cancer walk on Mother's Day at the Mall of America. We are walking in support of my sister Lista. Please keep her family in your prayers today and in the coming months. She is in surgery today and we are praying for good news. If you would like to make a donation, please click on this link.
Lista's Leading Ladies

The other night as I was saying the Lord's Prayer, I came to the part "give us this day our daily bread" and it really struck me how God truly does give us our daily bread...the tools we need to get through each day, put one foot in front of the other and continue on. His grace is sufficient, in fact it has been MORE than sufficient in carrying me through the last almost 4 years since we first learned of Jacob's disabilities. I have so many dear to me weighing heavily on my heart right now and I also pray that God gives them their daily bread to see them through today and into tomorrow.

New pictures should be posted soon!

Love, Karla

Tuesday, April 4, 2006 4:20 PM CDT

It has been a whirlwind around here lately. Lots to do, lots of things I want to get done, yet somehow I don't feel like it is ever complete. I've got a little spring fever, wanting to clean and organize the house, and add onto that the excitement of rummage sale season starting soon! I have been hitting Goodwill a lot lately and Dave thinks I'm addicted. I guess that is what happens when you have to pick up meds a lot...Goodwill just happens to be next door to the pharmacy!

It's also been really tough lately with so many around me having issues they are dealing with. My sister is having surgery on the 13th for her breast cancer, another friend from my Moms group was just diagnosed with breast cancer, along with others in our community lately dying way too young. Add to that my worry for Maya and Holly, and there have been lots of prayers being said lately. I think that once you have gone through your own issues, even some life and death issues, you look at things a little differently and can feel a little deeper for others who are also struggling.

Last Friday, we went to Rochester to get Jakey's new AFO's. They have trucks, cars, tractors, airplanes and helicopters on them. Really cute. He had to show them to his friends at school of course. There is lots of room for him to grow into them. For some reason, his same shoes fit him though. Here, I was all ready to buy new shoes, but it is a good thing!

Jacob woke up Saturday with a fever and a cough. Sunday he seemed a little better, but still coughing a lot. Right at the most "opportune" time, during the sermon, he decided to puke. Now, I had a few choices....do I run quickly to the back of the church and let everyone witness him puking or do I just sit it out and hope that at least a few people don't hear it or start puking themselves. Another part of me was ready to say, "WELCOME TO MY WORLD!" But the best part was I think the pastor seemed to talk louder and louder, or at least maybe in my imagination it seemed that way :)

Yesterday, Jacob woke up with a fever again, so I took him into the clinic. He has a slight case of pneumonia in his right lung, so he was started on an antibiotic. One praise is that my boy is able to cough pretty good. Today he was a little gunkier, but he can still cough. Big plus.

Jacob is officially off his Topamax!!! Sunday was the final dose. Somehow I felt we should have some sort of ceremony, as this is a HUGE step for us. He was on it since October of 2002 I believe. We were at 3 seizure meds, plus steroids at one point, down to 1. This is BIG! So I want everyone to do the NO MORE TOPAMAX dance with me....as Devin would say, "Shake your Boo-TAY!"

Hope everyone is having a good week. If you haven't signed for a long long long long time, let me know you are still reading his site! I'm always curious who stops here every day.

Love, Karla

Tuesday, March 28, 2006 10:51 PM CST

Sorry for being so slow on the updates! It's been busy around here and not enough time to sit long enough to actually write on here!

We had an awesome weekend at the conference! It's so fun getting to see other families that we have gotten to know so well. Nothing like a room full of special needs kids, all with feeding tubes, wheelchairs, and funny shaped heads. Those of you who know me well, know I am famous for checking out other kids heads. I do have to say that Jacob's looked pretty normal! LOL!!! Friday, we started with dinner, beef stroganoff (YUM!) Jakey had to try some of the salad dressing too!

We had an opening session where we made a tie blanket and added things to it with velcro that represented our child. The boys were in the arcade during this time spending money! After we were done, the boys had to go swimming...it was killing them! Jakey and I hung out in the room while they swam.

Saturday we had french toast and sausage for breakfast. Took the boys to Sibshop where they had so much fun playing games related to what it would be like to be blind. They also decorated a sign with their name and a little bit about themselves. Next they made a tie pillow. We were listening to the keynote speaker at that same time. He was awesome...he talked about our situations, attitude, etc and was very reaffirming in what Dave and I believe. Next session was a lawyer talking about legal aspects of raising a special needs child and the setting up a trust in the events of our deaths. We had lasagna for lunch next. After lunch, the kids were excited because Dave took them to the waterpark. They had a really nice waterpark connected to the hotel. I took Jakey with me to a session on making a touch book. We had all different kinds of materials in textures and colors that we used to make a book. My favorite session though was the one called social situations...what do you do when the world gets in your face? We talked about all the different comments we often hear about our children and how to respond. It was the best one of all. I absolutely loved being able to talk with others about so many of the situations we face every day. It was nice to hear that others go through the same things all the time, especially my "favorite" comment "IS HE TIRED?!?!?!?" Next, we had supper, chicken and potatoes. Dave went off with one of the other dads and I took Jacob swimming after we ate. He loved it, especially doing Humpty Dumpty and splashing into the pool and when Devin or Michael did a CANNONBALL! The ice cream social was ready, so we got out and redressed to go make an ice cream sundae. While we were eating, we were talking to one of the band members of the Figureheads that sang that night. They were awesome!!!! They sing kid hip hop and focus on the beauty of the children, especially special needs kids. Many of their songs made me cry. Jacob LOVED it of course.

I had so many people come up to me afterwards and comment on how he loved the music. :) After the music, Michael and I went to the waterpark, Dave took Devin to the little pool. I tried one of the slides and HATED it. I am the world's biggest chicken!!! I did go in the whirlpool though...part of it was outside. Michael was having problems breathing from the whirlpool part inside so we went back and got his inhaler. The kids went to sleep and slept very hard that night! They were worn out!

Sunday, we had eggs, english muffins, bacon, and cheesy potatoes for breakfast. The kids were tired of not eating all weekend because they didn't really like much of what was served, so we went to the continental breakfast too and they finally ate. LOL We loved the food, but it was all the fancy hotel stuff, weird veggies, green stuff added, you know all those things kids complain about. After they ate, we got stuff packed up and then went to one last session on touch. It was neat because we put blindfolds on and saw what it was like being blind and having to only use our sense of touch to figure out what something was. We filled out our evaluations and then got ready to leave. Maya was transferred to Milwaukee's children's hospital on Saturday, so luckily we were only a little while from there and got to visit them. After our visit, we headed for home. Me and the kids slept the whole way back!

It was so fun reconnecting with everyone. There are a few families we have gotten close to, so we talked and talked many different times. It was so nice to feel like we belonged. I heard so many comments on how GOOD Jacob looked...it was wonderful to see how much more alert he is than a lot of the other kids, especially in the smiley dept! Here is a picture of Jacob and his friend Joey :)

Today, Jacob went rollerskating with his school! Actually, he went for a little while in his wheelchair, then his PT got out the scooter and Jacob went for a ride. He had to hold onto a hula hoop and Janice would pull him :) I have pics in the photo album, so check them out! They are so incredibly awesome at including him in any activities they do.

Hope everyone is having a great week! Leave me a note to let me know you stopped by!

Love, Karla

Friday, March 24, 2006 12:42 AM CST

Just a quick note to let you know we are heading to the Wisconsin Center for the Blind and Visually Impaired Preschool Conference this weekend in Milwaukee. It should be so much fun. Imagine a room full of special needs parents, kids in wheelchairs, feeding tubes, and fun. The boys have sibshop in the morning where they get together with other siblings, talk and have fun. It's a fun bonding experience for all of us!!!

Jacob is feeling much better, but still has a nasty cold. Devin was home yesterday with the cough and cold, but no fever thankfully.

Have a great weekend everyone!

Karla

Tuesday, March 21, 2006 10:56 PM CST

Hello! Yesterday, we had an appt with Dr Driscoll for a recheck on Jacob's arms. The Botox has helped a lot with the spasticity. Our hopes now are that he can get more strength in them while they are looser. The splinting has been less than fun. He will be okay for a couple days with it, then the next day he'll be crying like he wants them off. There isn't a really good way to lay him arm either without looking like he is doing the Chicken dance or something. So we are going to turn the tension down a bit and try a no-no elbow extension splint on the other arm. It is most effective to have at least 6 hours of continuous stretch a day, which sometimes we get, but for the most part it is max of 2 hours before he is screaming.

While I was in the clinic, our nurse Deb said there was a family there whose son Josiah has spina bifida as well, and he is also having problems when people cough or clap. We were trying to find them before we left, but they were in x-ray and then lunch. So when I left for lunch, I said I would look for them (I had seen them when I came in, but didn't know about them yet obviously) so as I am getting ready to leave for his AFO casting, I happened to run into them. It was wonderful to talk with them and to share something in common. Josiah was adorable and took a liking to Jacob immediately. He was busy talking to him and playing with him, which of course Jacob loved, especially when he made some wonderful boy noises!!! In the short amount of time I spent talking to them, it warmed my heart to see such a sweet boy....I tell you, spina bifida kids just have something special about them.

Jacob was also casted for new AFO's. There weren't a lot of choices that were all that cute, but we did end up deciding on cars, trucks, airplanes, etc. that will be printed throughout the AFO's not just in one place. They should be cute. It was hard not to get Spidey ones again, but I need to learn that change can be good! LOL!

While I was in Rochester, I got a call that Michael was sick, so Dave went to pick him up at school. We had taken him in on Sunday to walk-in for a sore throat, but he doesn't have strep. He felt okay enough in the morning to go to school, but then started running a fever. Wouldn't you know it, Jakey woke up this morning with the same thing. He spent most of the day sleeping. Later this afternoon, he spent a couple hours crying, then would be fine, cry again, and fall asleep. He had the crying jags forever too :( Poor guy. He started perking up again a little after a dose of Tylenol, but was soon ready for bed again. I sure hope he didn't pass anything along to anyone yesterday!

Hope everyone is having a good week! Leave a note to let me know you stopped by!

Love, Karla

Wednesday, March 15, 2006 11:22 AM CST

Jacob's Antics!

Or maybe you should call me Bratty boy! I was with Mommy visiting this lady. She wanted to hold me and let me tell you...I let her have it! I screamed and cried until Mommy held me again. I'd let Mommy talk to her and she could even talk to Mommy, but if she even thought about talking to me again, I'd scream at her. Mom said it reminded her of when kids are being little brats and screaming, "DON'T TALK TO ME! DON'T LOOK AT ME!" And so it went, she could no longer talk to me. I pulled the same thing the other day when my Auntie Crystal tried to talk to me. The second I'd hear her voice, I'd start crying.

Okay, everyone, how exciting is that?!?!?! All I can say is can you see those neurons firing or what? The opinions, the attitude, and the ability to CARE and EXPRESS it is just unreal lately! Such nice steps in the right direction!

We are continuing Jacob's taper off his Topamax. We are half way there and so far no seizures!!!

I do have some major prayer requests this week. My oldest sister was diagnosed with breast cancer last week. My stepdad had his gallbladder removed last week and is healing. Maya is back in the hospital for dehydration and to give her gut a rest. And finally, my friend Crystal has MS and had a seizure on Sat. at her boys' birthday party. It has been a very stressful week with so many others in our thoughts.

Some thoughts have been running through my mind lately regarding life with Jacob. It's hard to remember what it was like before Jacob was here with us. It seems like such a long time ago. I also know that my thoughts toward special needs kids have changed. I worked with some special needs children while in Head Start, in fact the 2 years prior to having Jacob, I had quite a few. I often wonder if this was God's way of preparing me for what lie ahead. My heart was softened by these precious children, as I experienced the excitement of growth and accomplishments, and the uniqueness of each of them.

Not long ago, I was talking with friends about a disabled lady in our church. Each time we have communion, she very cheerfully receives the bread and wine, smiling and showing her excitement in taking part like everyone else. I have shared with her family how much this warms my heart. One of my friends made the comment that prior to knowing Jacob, she would often feel sorry for people such as this lady at church, but has been glad to see a different perspective to it. There is definitely nothing to feel sorry about....

On one of my early visits to Mayo with Jacob, I saw a man with disabilities. He was probably in his 30's, but mentally probably more like 5 years old or so. His mother was in hot pursuit of him. He had taken off his shoes and was trying to crawl away from her. He wanted nothing to do with getting them back on. In fact, after being threatened to take away his ball, he still didn't listen, until she said she was going to get the nurse, and wouldn't you know, those shoes were back on! I sat there chuckling to myself, thinking if we ever got to this point with Jacob, I would find it hard not to want to cheer instead of discipline! Prior to Jacob, my thoughts might have turned to pity or maybe worse....however, this experience warmed my heart instead.

Another visit, I sat in the waiting room, watching a boy with CP, about 5 years old, eating a granola bar. His mom would put it to his lips, he take a slow, steady bite. He'd chew so cute, so slow, then turn for another bite. I was in a trance watching him, only to have Michael nudge me and point out that it looked like I wanted to cry. It was such a beautiful sight, such a moment between this mother and son....hoping someday I too can share a granola bar with Jacob.

Holly shared with me a story of a mom in the business office at Mayo, waiting her turn. With her was a teenage boy in a wheelchair. As she sat down, she took him out of his chair, sat him in her lap, cuddling. Her name was called and so she put him back in the chair, went to the front, came back and once again took him out. He was snuggling again in his mama's lap. Once again, she was called to the front and she put him back in his chair. Now some might have found this process of taking him in and out not worth the bother. But this mother knew the importance of holding her son and giving him that snuggle time that he obviously needed. I want to be a mother like that....

Love Karla

Saturday, March 11, 2006 12:51 AM CST

Hello everyone! I know, I've been slacking on the updates, mostly because things have been very stable around here. Jacob's had a much better week after I started mixing his potassium into his night feeding. He's still got a lot of air in his tummy, but he has a cold too, so not sure how much is air swallowing. He went swimming on Wed, which he loved, especially when they did Humpty Dumpty. I swear, this kid is SO darn smart at remembering and anticipating what comes next. Even when he came home and we asked him if he did Humpty Dumpty, he got all excited. That is the part I am absolutely REVELING in with my boy. Wednesday morning, he had to come to my Moms group with me since he went swimming in the afternoon. A bunch of us were talking about how big he's gotten, how much he's changed. I told them that he knows where his hair is and where his nose is. Right away he grabbed his hair and everyone commented on it. Then I asked where his nose was, and all he'd do was smile, so we went on talking. About a minute later, one of the ladies noticed that he was sitting there, grabbing his nose! We were wondering how long he'd sat there like that! He was asked to show us his nose and he did!!! And he wasn't going to stop grabbing it until we noticed! LOL!!! It might seem like a small thing, but DANG! That boy is using his brain when he was "predicted" never to do a darn thing! I just love it! It's amazing to see. :*)

The boys have been busy this week. Michael has Jazz Band on Mondays, he stayed after school one day to complete a project, and then went to a dance last night at school. Devin went to a friend's house to sleep over last night too. While we were waiting for Michael to be done at the dance, Dave and I went out to eat, while Jakey came with to entertain us with his all his jabbering. Never fails, everytime we are out, there are always people who have to tell us how darn cute he is! He sat right up to the table and banged and banged on it. Very nice arm extensions too, which has been wonderful since the botox!

Today, we are going to a birthday party for one of my friend's boys. It is beautiful outside, so it will be a fun day.

Hope everyone is having a great weekend!

Love, Karla

Sunday, March 5, 2006 8:15 PM CST

Good evening! It snowed all day today, nice wet snow. The trees look beautiful! I don't see it staying long though. The boys went outside to build a snowman as tall as Dad they said! Dave is 6'5" for those of you who don't know!

I wish you all could be in my living room right now listening to Jacob laugh at Superhero Devin. It is the best sound in the world. There's a lot of GEE GEE GEE GEE DUNG's and DA DA DA DA DUNG's and LA LA LA LA LUNG and BLAH BLAH BLAH. LOL! I love his language, it is so neat to hear him wanting to be right in the middle of it all.

We are dealing with some issues with Jacob lately. He is having a really hard time at night with cramping. It is very cyclic crying, obviously a painful cry. I truly believe it is his potassium since it started not long after we started it. The last week has been really bad. I also think it is the source of the incredible amount of POOP that is coming out of the boy. We are also seeing a lot of gaggling in the morning, along with a couple acidy burps. Obviously reflux. Must be time to increase his prilosec dose again with his weight gain. Does anyone have any ideas or experience with this lovely position we are in? Last night it was 2 hours of crying, fine, crying, fine, YAWN, oh no, I have a cramp again, CRY. UGH. And then the poop caming shooting out and he was fine for a while. I feel so bad for the baby....I held him until he went to sleep and was fine until he realized I had laid him down. It is also making the whole Dynasplint trial hard because I can't tell if he is upset about the splint or his tummy and if because his tummy hurts he doesn't want the splint on!!!

This past week went fast with school and such going on. Saturday, we went to the Children's Museum for their Birthday Party celebration. We saw a juggler which has given Michael a new interest in juggling. In fact, he is trying to juggle three of Jacob's Roll-a-round balls by Fisher Price as I write this! A must for all of you with babies! You have to get the bubble gum machine that goes with it!

Some of Jacob's Antics from the last few days:

*Laughing at Devin's superhero spitting noises...like always!

*Devin was crying really hard yesterday because Michael threw snow in his face, awww brotherly love. Jacob finds crying to be one of the funniest things. It's really hard to feel bad for one child while the other one is hysterical!

*We were riding in the van one day and Jacob started his jabbering...has to join in with the boys conversation. I started asking him to say GEE GEE DUNG and DA DA DUNG, his favorite sayings. He'd repeat whichever one I had asked him to say. If I said it really long, he'd say it long. Short, he'd say it short. The boys had to join in too.

*Jacob's favorite words are TASTY and WELL, EXCUSE ME!!!!
These words will make him laugh in the middle of a cry!

Hope everyone is having a great weekend. Glad you all got a good laugh off my last journal entry!

Love, Karla

Monday, February 27, 2006 9:45 PM CST

Poop, Poop and More Poop, With a Twist of Puke and Pee for Fun

For those of you a little squeamish, you might want to stop reading right now, but for those of you who would love to have a laugh at my expensive, read on! All you parents in the land of special needs know that poop is often something that is on your mind daily...has he pooped yet today or not, do I need a dash more of miralax, perhaps I gave too much? Then comes the sometimes necessary big guns, suppositories, enemas, oh the fun goes on and on. So needless to say, when I came home last night from babysitting Miss Maya and entered the house, only to be knocked on my butt from the fumes that met me, I knew we were in trouble. After asking Dave in a not so nice way if he had farted or worse, he shared with me the events of the night, which I so thankfully missed! After going in to check on Jacob, he was met by a not so nice surprise...the I-crapped-all-over-the-bed-and-up-my-back-you-need-to-change-the-whole-darn-works variety. Mind you two hours later, I was smelling it, so just imagine what it was like at the time. The evilness in me was grinning ear to ear secretly for Daddy to have to be the one to take of that.

Needless to say, I know paybacks aren't always so pretty, and I got my share this morning. Picture a nice sunny morning, Jakey babbling in his crib, a nice Mommy coming to say good morning, only that is where the niceness ends. I smelled it again and began wishing it wasn't true, but yes, he pooped again. It starts to cross my mind....HOW can one wee boy POOP that much? I mean seriously!!! And remember the times I asked you not to feel sorry for me? Well, I found one thing you can definitely feel sorry about. The days of the cute little baby poops are over. It has become something no mama, even the I love you no matter what kind of mama, wants to smell. So off to the changing table to figure out just how I am going to get his pajamas off, all the while Jacob is jabbering and talking. Thank God for his cuteness! After taking off his diaper and successfully cleaning his butt, I thought I was in the clear, but the two seconds between taking one diaper off and trying to put the other one on, resulted in a peeing fiasco. Now dealing with his neurogenic bladder, I know there are going to be many peeing incidences since he has no control over when it comes out. And I am thrilled that we have not had to get on an intermittent cath schedule yet, but some of that thankfulness went out the window when Jacob instantly turned into fountain boy. Imagine said mother trying to catch pee in her hand, dumb move believe me, only to realize said boy is now also needing to puke. Imagine that same mom with pee in her hand trying to sit up the boy so he can puke, all the while the fountain is still flowing. After soaking the carpet, garbage can (which the not so brilliant mom finally figured out might be helpful,) burp rag, and changing table pad, which is now in the garbage, it was time for a bath. Mind you I only have 30 minutes left before the bus comes to get Jacob. After a quick bath, Mama loving the smell of clean again baby, I decide to finish getting him ready for school. Lay Jacob on the changing table, where once again, he turns on the fountain works. Not only am I questioning how much POOP one can have, but GEEZ! Does it ever end? With a scream from Mama, and a hysterical laugh from the boy, what should come out of the butt, but more poop. By this time, I am laughing so hard, because it just can't be happening. Thankfully, the puking didn't accompany it. And finally, we had one clean, happy boy ready for school. Awww...the life of poop. Nothing like it.

Hope everyone is having a fantastic week. Remember to leave me a note to let me know you were here!

Love, Karla

Friday, February 24, 2006 11:57 AM CST

For those of you who have already read this on Friday, you might want to re-read it as I keep forgetting to add stuff! LOL

JACOB'S ANTICS
Mama has a cold which she might not find very amusing, but dang! I love when she blows her nose, coughs, and sneezes. It's hilarious!

When Mama puts me in my stander, I used to be so good about holding my legs down. Now, I decided to shake it up a bit by bending at my knees, which makes it very hard for her to get me in! Mama will ask me what the heck I am doing, which makes me laugh so hard! I like playing tricks on Mommy!

Hello everyone! It has been a whirlwind of a week. So much going on, yet lots of busy fun too. On Tuesday, Jacob didn't have school since they were doing preschool screening, so we decided to go with Holly for Maya's appts in Rochester. Maya has the neatest personality. I can't even begin to tell you all how special this little girl is to me. On the way to Rochester, she had so much she had to tell me. At one point, I told her just a minute since I was talking to Holly. Well, when I still wasn't done talking to Holly, she turned to Jacob and told him that Miss Karla was busy talking to her mama, so she was going to tell him instead! LOL! She has become very amused by Jacob in general and loves to talk and sing to him. Jacob doesn't always like her voice (he's weird that way!) but he didn't cry at all this time! During the appts, I kept Maya busy so Holly could talk to the doctors. She helped change Jacob's diaper, shared her silly putty with him since he had a PERFECT pocket to hold it in, and pretended to talk on her cellphone to everyone she knows, quite realistically too! The funniest conversation she had was to Michael and Devin. She had asked me what they were doing at a certain time and I guessed what class they both were in at that time. So she gets on the phone to them and says, Yes, Michael/Devin, I know you are at school and you are doing math/reading right now. Basically, sorry to bother you! LOL!!!! Then had to tell whoever she was pretending to talk to all about the doctors and how they took her blood pressure, weighed her, about the new glasses she picked up and how her sunglasses stapled to her new glasses with magnets. When she saw Jakey's feeding tube, she had to turn it around, look under it, and comment that he has a very nice tube (something the doctors do to her all the time!) Maya was also the official Jakey feeder all day too. She's got the whole feeding program down I tell ya! When Holly dropped us off at the house, Maya didn't want to let go of Jacob. In fact, she told me she wanted to keep him and that I could get another baby! LOL! It took some convincing, but finally she let him go. I think Holly heard about how she wanted to keep him all the way home though!

We were unable to get his AFOs casted since I never got a call back about making an appt with them until the next day. Not a good time. And since I am not going to make a trip only for that unless something else comes up, I will wait until next month when we go for a recheck on the botox/arm splints. The splints are going okay on the right arm, his weak side, but not so hot on the left. He doesn't like it on that side much at all, so hopefully once he gets used to it, it will be okay. We will go up to all night long soon. Check out the pictures of his new dynasplint on his arm and his nighttime splints. Holly thought the one picture looks like he is saying, Hmmmm,
if I could just think of a way to escape all these torture
devices.....hmmmmm....let me think...." But yet he is smiling, so it can't be so bad! LOL! The other pics I added were just some fun ones of him before school one day. Isn't he just the CUTEST???? I love all his expressions!

Tuesday, Devin also went sledding and ice skating for winter fun day. He ended up with huge, and I mean huge blisters on each of his ankles from the skates. He told them he wears a size 2 now instead of the size 1 I had written down on the permission slip quite a while ago, but they said he needed a size 1 since that is what mom had written. He isn't one to say anything more even though it was obviously hurting him, just because they had told him how it was supposed to be. It worries me that he doesn't say anything else, but after talking with his teacher and Devin about this, hopefully he will let someone know next time there is a similar situation.

Wednesday, I got a call from Dave that he had been in an accident at work. He was trying to get up a very slippery driveway, of course most of the places he delivers to aren't finished yet, and he needed to make another run at it. So he backed down the driveway and tried again, only to have an old man come out of nowhere and hit him, right on the gas tank side of his truck! The diesel was pouring out. Thankfully no one was hurt!

Last night, we had Michael's conference. We got some things figured out and hopefully everything will continue to go uphill from here. He is a very smart kid with lots of potential when he applies himself. Very good at sharing and adding to discussions, so that is a plus. He's a chatty one just like his mama!

Glad it's Friday. We are going to have a family night tonight with a movie and maybe pizza. Should be fun.

Take care and let me know you stopped by!

Love, Karla

Monday, February 20, 2006 7:17 PM CST

What a busy, crazy day! After I got Jacob on the bus this morning, I left right away to pick up my mother-in-law for an eye appt. After her appt, I dropped her back at my house since I had to turn around and leave right away to pick Jacob and his OT up at his school. It was requested that Jacob's OT came with so she could learn to adjust his splints we are going to be using for his arms. We rushed to Mayo, a little late, but there nonetheless. Jacob received 4 shots of Botox today to help with the spasticity in his arms. He got a pretty good sized dose, so hopefully this will help. It is the hopes that with decreased spasticity, he can practice more weight bearing on his arms and use them more to reach out. Right now he holds them close to his body, elbows bent, kinda like chicken wings. The vision consult from the state had also mentioned how vital it is for him to be reaching out away from his body to help explore since his vision is limited. Next, we met with an OT from Mayo and a rep from Dynasplints. We will alternate the arm we splint every other night. The combination of splinting and Botox will hopefully help. The funny thing is Jacob knows that anyone who grabs his arms besides Dave and I is usually up to no good...so needless to say, the actual holding of his arms was 100 times worse than the actual shots. It soon became evident that if the person up to no good even TALKED to him, not even necessarily TOUCHING him, he'd scream. Quite the kid!!! While it's never fun holding your child down while he is screaming, part of me was so thrilled to see the anticipation of what was happening. He knew when he got the cold stuff sprayed on his arm, another poke was coming. It's just so sweet to see him caring...sounds weird, but not when I know what we could be dealing with. After a little bit of snuggling, everything was right with the world again, especially when we stopped bugging him enough to actually let him fall asleep.

We are going back to Rochester with Holly and Maya tomorrow since Jacob doesn't have school (they are screening other children) and hopefully we will be able to get his AFOs casted since we didn't have enough time to do them today.

Nothing else too exciting going on around here. Just a lot of snow and cold weather!

Take care and drop me a note in the guestbook or by email to let me know how you are doing!

Love, Karla

Tuesday, February 14, 2006 10:23 PM CST

Happy Valentine's Day! I thought I'd better update! Friday was Dave's first day off for his week's vacation. Of course, he couldn't wait to go out fishing. And no, he didn't go out on the ice! LOL! Devin and I went with Holly and Maya to see Curious George on Friday also. It is a very cute movie. Saturday, I spent most of the day bumming with Holly and Maya. Maya, the shopping butterfly girl. She is so incredibly entertaining. Dave went out that night to play X-Box with some friends...you know boys and their toys. Sunday, we had church and our friend Dakotah's birthday party.

Which takes us to Monday. Dave and I took Jacob to Mayo for his CP/Spina Bifida Clinic. Everything went really well. We saw Physical Medicine first. We discussed Jacob's Botox injections for next Monday. We will also be trying Dynasplints at night too, so next week, he will be fitted for those. He is outgrowing his AFO's, so we will also try to get him into see Ross for new ones. These ones have Spiderman on the back....not sure if we can somehow work out Barney, even though it wasn't available last time....HMMMMM.

The dietician was very pleased with his growth. He has grown 3 inches in 6 months. He is 39 inches and 32 lbs. I have been a little concerned/confused on his lack of eating more than 2 oz of baby food at a time. He will occasionally handle 3 and rarely 4 oz. It seems like the other two boys were eating much more than that a much younger age. But because he is growing and flourishing on the amount of pediasure he gets plus the little extra food, there is no concern right now. He is rarely throwing up anymore, at least not like he used to. A good report overall.

Jacob needed to have blood drawn, so luckily we were able to get it out of his foot. He has had an aversion to anyone grabbing his arms now, I think it is from all the blood draws and thinking they are going to hurt him :( Thankfully his foot was warm enough and cooperated this time. As we came out, we ran into the Fennells, a family we met in the NICU. Their son has cystic fibrosis. It was nice catching up with them a little before we had to run off for lunch with Dr Nickels.

After lunch, we met with PT to go over any equipment or extra needs. Seems like we are on top of things. Just waiting for his new wheelchair to be prior authorized. He is getting way too big for this one!!! Next, we saw neurology. She said it doesn't feel like too long ago, the three of us were sitting in a room just like that talking about Jacob's condition and his future.....WOW we have come SOOOO far. It made me feel good to know she is so pleased with what he has done. So many times, children are assessed based on this ideal of how things "should" be. It's wonderful knowing it's okay to be just the way he is. We are going to start weaning him off his Topamax next week. Hopefully, by April, he will be off of it completely! Now I am not going to say this too loud, because it will really be a wait and see kind of deal. The seizures may start coming back as we wean, but Dr. Kuntz is cautiously optimistic that we can make this happen. With him off the Topamax, we have a great chance of the calcium issues changing around and then he would be able to drop 2 more meds there too! We could be down to just his one seizure med, Lamictal, and his Prilosec. YEAH!

After visiting with the social worker for a little while, we went to get a cathed urine that nephrology ordered to check his calcium ratio and potassium. Dave and I stopped at our favorite restaurant on the way home. YUM! Michael was holding down the fort, helping Devin make his Valentine box. He's such a good big bubba!

Today, we went to Jacob's school to deliver roses to his ladies and hugs and kisses candies. Dave and I both had appts, so afterwards, we met back at home and then headed for Devin's school for his Valentine's party. Dave had to get some more fishing in afterwards, while I caught up on my soaps! Tomorrow, Dave hopes to eat lunch with Michael and then go to Jacob's school on Thurs.

Here's some pictures of the Valentine's boy. He's such a TURD lately....he has figured out not to look at the camera because of the flash!

Holding all my Valentines!

I am not going to look at you!

I am STILL not going to look at you!!!!

Okay, I'll smile!

I'll finish off with Jacob's Antics!

Oh my! I had the funnest time at Mayo! First off, I love going to the bathroom with Mama! It is so funny listening to her pee and HILARIOUS when she flushes the toilet! Then, my nurse Deb tried to take my blood pressure. Well, I'd have no part in that one lady! So I turned on the tears (works everytime!) to which Daddy started saying EWWW YUCK! to make me laugh. I was laughing SO hard, which in turn made my Deb laugh too. I am one funny guy!

I met my favorite Dr. Nickels for lunch. She is a good snuggler, just to let you know. She gave me this yummy sucker, which was mighty fun to stick in my hair! I tried sticking it in the front of my hair and the top of my head. For some reason, she kept taking it out of my hair though....silly lady! Then, just like that, I was done and the sucker was on the floor!

When I was waiting FOREVER, did you hear me, FOREVER for the cath team, Mom gave me the coolest rattle to play with. I'd hit it this way and that way, shake it, whack myself in the head with it (highly recommended fun I tell ya!) and then drop it on the floor. It's always fun when Mom said, "WHAT DID YOU DO?!?!?" to which I laugh hysterically. I played this game for about 20 minutes. Long, long time for this here Jakey, I tell ya!

On the way home, I didn't like sitting in the dark, so with a little vocal persuasion, Mom turned on the light back by me. Aww....much better!

Hope everyone is having a great week!

Love, Karla and Jakey

Wednesday, February 8, 2006 5:10 PM CST

Jacob's Amusements of the Day!

*Mom was washing my hair, and everytime she filled up the cup with water, I'd laugh SO hard, and even harder when she dumped it on my head!

*Devin was jumping off a chair (something Mom's not always too happy about!) playing Spiderman. Boy was he FUNNY! Especially when he added all the spittin' superhero sounds to go with it!

Jacob is 3 1/2 today!!! Hope you like the picture on the top of his journal! It is near impossible sometimes to get the little turkey to cooperate and actually look toward the camera AND smile at the same time. He has figured out how to close his eyes for the flash...must have learned that from his daddy! LOL Thought I would share his pictures from Feb 8th, 2003, 2004, and 2005 :)

6 months old

18 months old

2 1/2 years old

Jacob went swimming today, which is always a big hit for him. It's weird to think of the time where he used to scream bloody murder getting into a pool. Even though he took a nap late morning before going to school, he still fell asleep right after he got off the bus today. The water must have worn him out!

The OT wrote yesterday that Jacob is enjoying cottage cheese. He has even tolerated a little chunk of it. I find it so interesting to hear about the things he enjoys during food experiences and food group.

Nothing much else going on. Pretty mellow around here lately. Hope everyone is having a great day!

Love, Karla

Monday, February 6, 2006 2:50 PM CST

Jacob's Amusements of the Day!

*Mommy was in the bathroom blowing her nose when I was laying down for a nap. Mommy thought I was sleeping until she heard me laughing at her!

*Devin had a toy from McDonald's that he'd pull back and make it GO! He'd make it drive off of the table just to crack me up!

*Grandma and Grandpa thought I was so funny when I'd laugh at our dog Annie chasing her toy.

*I was shaking my rattle and when I'd drop it on the floor, I'd laugh so hard!

We had a very good week. My mom and stepdad came on Friday to have lunch with Devin. We had a fun time visiting. The boys were sad they had to leave on Saturday morning. We spent the rest of the weekend not doing much. Dave and the boys spent a lot of time playing X-Box together. We also went to church on Sunday and then Dave left for a Super Bowl party at a friend's house.

Devin's getting over a bad cough. He stayed home one day last week because he was coughing so much. Thankfully no one else has gotten it. That kid picks up more germs!

Michael went rollerskating on Friday with his class. They were supposed to go the last day before Christmas break, so they finally were able to reschedule it. He had a lot of fun.

Not a whole lot of excitement going on...just the way I like it. Next week are his appts at Mayo, so keep him in your thoughts for great reports!

Please leave a note so I know you stopped by!

Love, Karla

Tuesday, January 31, 2006 7:22 PM CST

Jacob's Amusements of the Day!

*Daddy was saying "EWWWW! YUCK!" and it was soooo funny! Mommy tried to say it to make me laugh and I looked at her like she was crazy!!!

*Holly has this FUNNY Barney. Everytime I would kick my feet or move around, it would start singing! It loved it!

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*Devin slipped on the wood floor and fell. I know I shouldn't laugh when someone gets hurt, but I just couldn't help it!

*Devin's friend Leslie was saying AAAACCCCHHHOOOOO! I laughed so hard I could hardly catch my breath!

*When I was at Devin's school, one of the kids burped while we were listening to a story in LMC. I was laughing SOOOOO hard and interrupted the story!

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It's been a while since I wrote! Thursday, we drove to Rochester for a Family Advisory Council meeting. It was an awesome, productive meeting I thought. We welcomed some new members as well. Dave kept the boys busy at McDonald's Playland while I was at my meeting. It was nice to have the company on the drive.

Friday, I met another mother with 2 special needs daughters. We had lunch and talked and talked. It felt like I had known her forever even though we just met! We talked for 2 1/2 hours, which just flew by! It was wonderful.

Saturday, while Michael was with his dad and Devin went bowling with a friend, Holly and I went to see Glory Road. HIGHLY recommended. It was an awesome movie.
Saturday night, Dave and I went to his work party. It was lots of fun, with good food, drinks, and an awesome comedian. It's always fun to get out alone every now and then! The boys had fun at Holly's.

Sunday was spent at church. One of the ladies at church has been an awesome support to our whole family. Devin just loves her, so he had to sit by in church. She's kinda like another grandma :)

Devin is Star of the Week. Monday, I brought in his favorite snacks to share with the class...popcorn, donuts, "salad" chips, creme wafers, and popsicles. He also gave them a pack of gum to take home. He was so thrilled to be the star! Today he took his magic kit. He came home crying because one of the little boogers in his class was digging through his kit and said, "I KNOW HOW YOU DO IT! THERE'S MAGNETS!" He was so sad that most them didn't think it was really magic :( Some day this week I will bring in McDonald's for lunch. Friday, Grandma and Grandpa are coming to visit his school. He is thrilled. It will be nice to spend the weekend with them.

Not much planned for appts until the 13th of February. Jacob will go to Spina Bifida/CP clinic that day. It will be nice because Daddy will be able to come with this time!

Love, Karla

Thursday, January 26, 2006 2:44 PM CST

Jacob's Amusements of the Day!

My amusement, but definitely NOT mama's! Mom got me all ready for bed, my jammies on, diaper and diaper liner on, knee splints on, and just then, I decided it was a good idea to poop! I am sure all of you mommies who have to put on all the extra "gadgets and dodads" know, it's no small feat to put them on, nonetheless take them off AND put them back on AGAIN. Then mommy said I was PU STINKY!!!! I thought she was so funny. I even had to put my hand in my diaper just to get her riled up a little!!! LOL!!!

Our dog Annie got a new squeaky toy. Mom counts, "1,2, 3!" and throws it to Annie. Oh my! I laugh so hard I can hardly breathe! I love the sound of Annie running and the squeaky part is super silly too!

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Jacob went bowling today with this school! They had a ramp for the ball and a handy dandy switch hooked up to it so Jacob could make the ball GO!

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As you can tell, there is a bowling ball attached to the switch, so he can make the connection between hitting the switch and making the bowling ball roll. Miss Lisa sure is awesome making all these spiffy switches!

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Aimee rides Jacob's bus with him on swim days and is the sweetest thing :) She has some special needs too and goes to the high school in Holmen. She is doing some volunteering in Devin's classroom! He was so excited that she was in his room and had to ask Jacob (in his cute little I'm talking to Jacob voice,) "Do you know Aimee? She rides the bus with you when you go swimming and now she is in my class at school!" LOL!

We are off to Rochester soon for my Family Advisory Council meeting. I think I convinced Davey Poo to come with. I figure he and the boys can find something to do for a couple hours since I like the company driving there and back. Plus, it keeps me AWAKE!

Hope everyone is having a great week! Check out the new pictures of Jacob in the photo album!

Love, Karla

Monday, January 23, 2006 7:25 PM CST

Jacob's Amusements of the Day!

Sunday: Everytime Mommy takes off my AFOs she smells my feet and says PU! Now, whenever I hear the buckles on my AFOs clicking, I start laughing because I just KNOW she is going to think my feet stink!

Monday: My bubbas and I were home today because there wasn't any school, so I got lots and lots of laughs from all their loud noises! I think the spitting sounds that Devin makes when he plays is the BEST! I try so hard to play with them and make lots and lots of noise like they do!

We had a nice quiet weekend. Dave's mom came over for a visit yesterday. Otherwise, we were pretty lazy. Of course, I had to watch my shows last night! Desperate Housewives and Grey's Anatomy is just too awesome :)

Everyone is back to school tomorrow. Jacob will be so excited. His aide, Lori goes to our church, so when she says hi to him on Sundays, he is SOOOO excited! Yesterday, he got all shy and CUTE (well when isn't he cute?) when she started talking to him. It has been so awesome to see such reactions from him as he gets to know more and more people. He has his own special way of interacting with each person.

Devin is going to be the star of the week next week, so he is very excited! We are in the process of making an "All About Me!" book for him. Jakey and I are bringing him lunch from McDonald's and another day we will bring in his favorite snack, popcorn of course! Grandma and Grandpa are also coming in on Friday to his school. It will be so fun for him!

I talked to the doctor tonight about his allergic reactions. We are going to have benadryl and an epi pen on hand at school just in case. She is having those forms faxed over to school, and I will go in to refresh myself on the epi pen. I had a child in my class one year with a bee sting allergy, funny how the bees just followed her everywhere! Anyway, we are just going to continue tasting and trying foods and if there is another reaction, we obviously know to stop feeding him that food.

Take care everyone! Thanks for all the wonderful entries in the guestbook!

Love, Karla

Saturday, January 21, 2006 12:41 PM CST

Jacob's Amusements of the Day!

Thursday: My bubba Michael was throwing a soft squishy ball against the wall and everytime he caught it, he'd fall on the floor. He was so funny! My mommy thinks I am going to have a screwed up view of pain since I laugh everytime someone gets hurts!

Friday: I was laying on my Foof chair and I was trying so hard to sit up, that I rolled off the chair! Mommy heard a thump and said "WHAT ARE YOU DOING?" I laughed so hard at myself!

Saturday: My bubbas were kissing my cheeks, first Michael would kiss one, then Devin. I thought the SMOOCHING sound was so funny!

I got a call from Jacob's school on Thursday. He had a reaction to the peanut butter playdough they made in food group. SOOOOO......obviously the reaction he had from the dessert pizza last week was from the peanut butter. I called the clinic and he had not been tested for peanuts, so now we can add peanuts, egg whites, egg yolks, wheat and apricots to the list of allergies. UGH!!! I am really wondering how he can be allergic to so many foods since neither of us are. I do have a nephew who was allergic to a lot of things, but that is all. I wonder if some of his conditions he has, meds he's been on, etc may have increased his likelihood of allergies? It really stinks since he is finally getting to the point where he is willing to hold foods, lick them, and/or put them into his mouth, and now he is having reactions. UGH!

Yesterday was a quiet day. We didn't have any place to go or much to do besides the normal stuff. Devin had a Cub Scout outing this morning, which Dave brought him to. Dave came back to pick up the dog and brought her in for her rabies shot. Now we are going to run into Walmart for some things, but otherwise it looks like a quiet weekend. We don't have many of those, so we will enjoy it while we can!

Hope everyone is having a wonderful weekend!

Love, Karla

Thursday, January 19, 2006 9:59 AM CST

One of the most wonderful parts of having Jacob in our lives is being able to wonder and marvel over the littlest things he does and things he finds hilarious. Because of this, I want to start sharing those things on each journal entry.

Jacob's Amusements of the Day!

Wednesday: Jacob found great amusement in the sound of me peeing during our trip to Mayo. Those bathrooms have some nice echo in them. His excitement was topped off by the sound of the toilet flushing! Boy, was that funny!

Jacob loves to listen to a Barney tape sent by a Hugs and Hope while we are in the van. There are some songs he hates, so I have to fast forward through them. Yesterday, on our Barney tape marathon to and from Rochester, Jacob found one song on there particularily funny. It sings of riding a rocket to the moon and it says WOOOOSH! at the end. Oh my! That really makes him laugh! We have to rewind it over and over so he can hear it!

Our trip to Rochester went very well. Dr. Driscoll wants to do Botox again to his arms, focusing on relaxing the elbows a little. We will also have night time splints to give them a nice stretch. Jacob was "all done" of course many times during the exam. He just cracks me up. His "all done" was used only for eating initially and now it serves many purposes, from only putting his head through his shirt and not wanting me to stretch his arms out to go in the sleeves, to wanting to leave to restaurant yesterday because I was taking to long in his opinion. So guess what the little turd did in the restaurant???? He MADE himself cough enough to gag and then puked. HMMMMM....he must have thought it was a sure fire way to get out of the restaurant!!!! So then, as I take him to the bathroom to clean him up, I scolded him a little about it. So what does he do but sass back at me! HONESTLY! It's stuff like that which makes me realize our boy is using every little bit of his brain he has to manipulate!!! :*)

Jacob's back in school today. He was so excited to go. I can see just how much he likes it and NEEDS it. My little social bug!

Here is a picture of Jacob's new cape we got him! It's helping a lot so we don't have to force his arms into a coat.

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Hope everyone is having a great day!

Love, Karla

Tuesday, January 17, 2006 6:28 PM CST

I was so touched by this poem, it seems just perfect for Jacob....

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Jacob seems to have gotten over whatever was bugging him. I really wonder if his tummy wasn't upset from eating that lovely egg-laced dessert pizza I tortured him with. What a mom I tell ya! LOL!

Last night, Michael had his band concert. They have improved so much since last year. Jacob found the whole thing very amusing, in fact he laughed many times! Michael asked me afterwards if Jacob liked it and I told him how he had laughed, especially at the last song. Michael said he had told Jacob how the song went, especially with all the loud drums, that is why he was laughing so hard. Michael is always "singing" Smoke on the Water to Jacob and imitating the drums, so Jacob thinks that is hysterical too!

Today was a good day at school. Sounds like he is busy licking the cheese off cheetos lately!!! Such a boy!

Hope everyone had a great day! I will let you know how our appt goes tomorrow.

Love, Karla

Sunday, January 15, 2006 10:37 PM CST

We have had quite the day of CRABBINESS! I know....you don't believe that cute smiley boy could ever be crabby! It started at church this morning. During the sermon, Jacob thought it would be fun to start screaming. I took him out to the back of the church, but he was still crying, so we went downstairs. He had himself so worked up that the pediasure I had just fed him decided to come right back up. Thankfully he puked on a tile floor with only a couple witnesses, versus in the middle of church during the sermon. Maybe it was a good thing I took him downstairs! When we got home, I laid him down for a nap, but he didn't want nothing to do with it. Instead, he fussed and fussed. He'd be fine for a few minutes, but cry again. I think his tummy hurt. Finally, this is what made it all better!

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He is such a turkey! LOL!!!

I think we figured out the allergic reaction on Friday night...Holly gave us some allergy info and marshmallows are on the list of foods with eggs in them. I definitely need to do a better job of knowing the foods he can and cannot try. It's weird for a couple reasons...neither of the older boys have food allergies and since Jacob only eats baby food, yogurt, and pudding, he hasn't had the food experiences like other kids his age. Now that we are wanting him to experiment touching foods and getting some taste from them, we are realizing it's not going to be so easy.

We have some exciting news in our family. My sister Sandi and her husband Bill are starting the adoption process! Their son Matt is Michael's age. I know he will make an awesome big brother because he has been so good with Jakey! They have put together a website to help prospective birth families learn about them and their family. One of the things that they have learned is that a great many of the adoption matches (birth mother finding adoptive parents) happen through word of mouth and networking by the adoptive family. They are asking that we keep our ears open in the event that someone we know may mention that they know of someone who is planning to make an adoption plan. And what a better place to share this news than on Jacob's site! They have been so supportive to us from the very day we found out about Jacob's condition, to being there for the birth, and the many hospital visits when he was so sick. It would be so awesome to have a new little one in our family!

Another week of school starts tomorrow! Wednesday brings us a trip to Mayo for Jacob's spasticity in his arms. Hopefully we will find out something helpful.

Love, Karla

Saturday, January 14, 2006 10:49 PM CST

Hello everyone! Busy week! Jacob went for labs on Wednesday. His potassium is back up where it needs to be after just one week of potassium supplements. WHEW! I am hoping that we can start weaning him off the topamax at our next neuro visit....the topamax causes calcium buildup in his urine and kidney stones, the extra calcium means Jacob needs a diuretic to flush it out of his system, which in turn causes his potassium to be low, which means he has to have supplements!!! See how much easier it would be to have him off the topamax? Hopes are that the lamictal he is on will continue controlling the seizures if he is taken off the topamax. We are almost 2 YEARS seizure free!!!! WOW. I won't say that too loud though...so SHHHH....

Wednesday afternoon, Jacob went swimming with his class. He loved it of course! He was so tired when he came home, he slept for 3 hours and Daddy had to wake him up so he didn't sleep too long!

We went out to eat on Friday night. I decided to let Jacob try out a little bit of a dessert pizza. The lovely welts all over his face and hands told me he is allergic to either peanut butter, chocolate, or marshmallow, which I am guessing it is peanut butter. UGH. I am going to have to recheck if he was tested for peanuts or not.

This Wednesday, we will be heading to Rochester to see the physical medicine doctor. Jacob's arms are becoming very spastic and tight. He always holds them about chest height and rarely stretches them out in front of him, except to play his piano. I think we will try botox injections again. Reality hits again.....

Hope everyone is having a great weekend. Please let me know you stopped by! I miss hearing from many of you!

Love, Karla

Tuesday, January 10, 2006 1:48 PM CST

Hello everyone! We are having a good week here. I went into Jacob's school yesterday to work on a bulletin board. It's been very fun to do things I miss now that I am not working anymore. It's also fun seeing what Jacob does at school and to see the other cuties. There is just something special about 3 year olds!

When Lyn, the vision specialist from the state, was here for Jacob's evaluation, she gave an example that made many of us really think. She showed a plastic duck. To us, it was a duck, but she pointed out that to a visually impaired child, it was just a piece of plastic. In order to meet their needs, we need to think about how we represent things. So when I was at Jacob's school yesterday, I went into the speech room to see Jacob. Lisa, the speech teacher, was sharing with me how she is making a vocabulary box for him. She is going to mount a variety of objects onto cardboard to stick to his switches. Then, Jacob is able to feel what is on the switch, make a choice of what he wants, and hit the switch. She had already made one for a cracker, an oral motor sponge he can twirl in his mouth, and a bumble ball. She mounted these actual items on the switch. It was so awesome. Later yesterday afternoon, I went to Michael's school to drop off his mouthpiece for his instrument, and on our way out, we ran into another specialist who works with Jacob. After a very nice conversation regarding augmentative communication equipment and adaptive clothing, I left to come back home. It hit me just how LUCKY we are to live where we do...to have a school who is a TEAM...a school who cares about MY son and wants to give him all the advantages, all the experiences they can. From there my mind wandered to all the "coincidences" that have happened right from the start of all this that have made it all more bearable. All the ways others have been touched by Jacob and the things they have done for us making it so much easier to keep putting one foot in front of the other. It makes the sad moments easier too, remembering that there is purpose to everything, no matter how hard it might be at times.

Michael had jazz band practice last night. He is very excited about going, especially since he got a new trumpet for Christmas. A baritone isn't the jazziest of instruments. LOL So now he is playing baritone for band and trumpet for jazz band. I am so happy he has found something he enjoys at school.

Devin had Cub Scouts last night. He wasn't too thrilled because it was a pack meeting so he though it was going to be a boring meeting where only the adults talk. LOL But he did end up having fun. His front teeth are looking like they may actually decide to come in soon. He has been toothless for so long! Here's the cute jack o'lantern!

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I was so happy to get a phone call today from my friend Lea! I met Lea at the Ronald McDonald House. Jacob and her son Damien were in the NICU and PICU together. Sadly, Damien died at 13 months old. Lea's husband is in the Navy and they are preparing to move to Japan! Their flight leaves tomorrow. We went out for lunch today and may meet them again tonight so the boys can play one more time before they move.

Hope everyone is having a great week!

Love, Karla

Sunday, January 8, 2006 12:19 AM CST

It's been another good week. We are back into the routine for school and such. It was nice to be on vacation, but it's nice to be back to school too.

We heard back on Jacob's blood tests for allergies. We thought it was wise after the gingerbread house frosting incident that we have him tested. Not to mention the fact that he is having tasting experiences in food group at school. We don't need to freak them out! LOL He is definitely allergic to egg whites and egg yolks. There was a slight positive for wheat too. He hasn't had anything with wheat yet so I never noticed that reaction. The apricots came back negative even though I have seen him have the same welts after eating them.

I had a mommy moment the other day. We were at the bank and the lady gave Jacob a sucker. He was having a grand time with it. I looked in my rearview mirror and saw him just licking away...even trying to bite it. I couldn't help but feel so happy to how far we've come. At that moment, he was enjoying a sucker just like any other 3 year old...he even was sticky when I took him out of the van :) And the sucker was dropped on the floor. LOL

We were feeding Jakey through his tubie the other night as we watched tv. All of a sudden he realized the syringe was there and picked it up.

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We were all cracking up at him! That was the first time he has ever done that. He isn't one to ever touch things too much around him or explore, unless it is pointed out to him. All of a sudden he dropped it and said, "A DA!" (all done!) LOL

We've had a nice busy, but not to busy weekend. Looking forward to this week....I am going to help with a bulletin board at Jacob's school, Michael has jazz band, I have an appt, and getting ready for Devin's star of the week at the end of January. I'm also in super organization mode lately. I organized Jacob's and our big closets in the living room with labels. I started tackling the basement storage room yesterday and got rid of a lot of junk.

Hope everyone has a great week!!! Please leave a note in the guestbook to say hi!

Karla

Wednesday, January 4, 2006 11:02 PM CST

WOW! Can you believe it? An update two days in a row!

Jacob broke a world's record last night! He ate a whole jar of bananas AND didn't gag even once!!! It was pretty amazing. I even put some cheesy potatoes through the baby food grinder and you should have seen the faces he was making! It was hilarious. Needless to say, two tastes was enough for him. No veggies in his diet!!!

I guess Jacob was extremely happy, smiley, and chatty today at school. I really think he missed going to school. It's so apparent by his reactions when we ask him about school how much he LOVES it.

Jacob has decided to pitch a fit at bedtime lately. He lays down fine, but within a few minutes he is crying. As soon as he hears footsteps down the hall, the crying amazingly stops. AND there are no tears. HMMMM....I must have SUCKER written across my forehead. He has to have his nightly routine of jammies, leg braces, brush his teeth, 5 Little Monkeys Jumping on the Bed (he LOVES when I bounce him on the bed!) prayers, kiss, and CD. You forget ONE thing and he lets you know. We've purposely forgotten something to see if he cries about it. He especially hates when you forget to brush his teeth. That is his favorite thing lately. He loves his yummy fluoride too! Tonight, he was first mad because I forgot the monkeys, so after bouncing him, he was happy. Then the CD was ALMOST over. He knows what the last song is and starts crying as soon as it starts. LOL And he only wants to listen to the one CD. So once those two things were taken care of, he was off to sleep. I find it funny to finally figure this out...sometimes we get in the habit of not assuming things with him, but once we've paid attention to it, he is REALLY telling us what and HOW he wants it done! LOL

To answer Tracey's question in the guestbook, Dave got some new glasses, plus for some reason, he is unable to take a picture lately without closing his eyes!!! Darn man sometimes! LOL

Hope everyone is having a great week!

Love, Karla

Tuesday, January 3, 2006 3:12 PM CST

Hello! We had such a wonderful holiday break. I was able to catch up and visit with so many of my friends. Jacob and I went out to eat with Kimberly, my assistant when I used to work at Head Start, one day and then Tracey, a fellow NICU mom, another day. We also had visits with Angie, our Bradley/La Leche League leader/friend, Crystal, Amy and Holly. We were able to sleep in and stay up late. Not a lot of demands like usual, so that was relaxing.

Everyone was ready to go back to school this morning. Michael even said he missed being at school! Devin was ready and out the door with his new coat and backpack. Jacob was CHEESY anytime I even mentioned the word school. I could totally tell he was READY TO GO! I love seeing his memory developing. He knows what it means when I ask if he wants to go to school. If we say something that made him to laugh in the past, he thinks it is funny again, even when it has been weeks since he last heard it! It's these little things that are amazing us.

Jacob had labs drawn last week for his potassium level. His potassium was borderline low, so we are going to start supplementing potassium and have a repeat lab next week. They also drew labs for possible food allergies. I have noticed hives on his face after eating apricots and from some icing we used at Devin's school for the gingerbread houses. There was meringue powder in the frosting, so we are questioning a possible egg allergy. With all the new foods he is experimenting with during food group at school, I thought it was wise to be safe. No word on those labs yet.

Make sure you check out his photos. He was doing such a great job sitting up on Christmas Day playing with his toy. I would love to hear from all of you. My guestbook is lonely! Let me know how your Christmas was!!!

Love, Karla

Wednesday, December 28, 2005 8:00 PM CST

Hello everyone! We had a very nice Christmas. We spent Saturday hanging out and getting food prepared. Saturday night, we went to church, and then came home for supper and presents. Of course, we couldn't eat fast enough for the boys. They were so excited to open gifts! The boys spent time playing with their new toys and watching a new movie before I shooed them into bed.

Devin obviously was a little too anxious for Santa to come, because he got up at 2:00 AM! Grandma told him to go back to bed and he fell back to sleep for a few more hours. Once the boys got up, they were thrilled to see more presents under the tree. Always fun to open gifts. I didn't really notice that Jacob was all too thrilled about any of it. Just his normal happy self. Pretty oblivious to the concept of presents, but he did enjoy the tissue paper sound! And the new Barney movies were a hit!

Tonight we went out to eat for my birthday. We have a cool pizza place called Pizza Doctors and tonight was "Exploratory Surgery," meaning they had tons of different kinds of pizza, some very bizarre ones, but boy was it GOOD. Jacob even had some chocolate pudding from the salad bar which was pretty tasty too.

Another few days before the boys head back to school. So far we've had minimal fighting which is amazing. LOL

Take care everyone and check out the new pics!

Love, Karla

Saturday, December 24, 2005 3:08 PM CST

Merry Christmas everyone! We are enjoying a lazy day at home. We will be getting ready for church soon so we can at least get a seat! Crazy how many people are there on Christmas, even with 3 services. Dave has to usher tonight as well.

Jacob did something very exciting this week! At school on Thursday, Jacob frosted cookies for food group and licked the frosting. I guess he took a big bite and kinda gagged and it came out, but he still had crumbs he ate!!! They expected a lot worse gagging then he did. So that night, we were also frosting our cookies we made. I wanted to see how he liked it, so we frosted a piece of cookie and he LOVED it. We had to frost it 4 times :) Then I helped him rub it on his teeth. He was shaking he'd want to bite it so bad! Then he would a little, but not enough to break off too big of a piece. He got some crumbs though and NEVER gagged. He smacked so cute when he was tasting them :*) I'd rub more on his teeth and he loved it. I can't believe how close we are getting to biting and chewing!!! Literally ANYTHING that resembled a chunk he'd gag. It's hard to explain because most people think I should just be able to give him a cracker and he'd eat it. He doesn't even handle me mashing something up. I think it is because of his vision and not being able to watch us eat like babies usually do. SOOOOOO anyway, this is a HUGE step in the right direction. It just made me want to cry it was so sweet. Devin came into the dining room and saw him eating and screamed for Michael. They all were so happy for him :)

Tonight, we will open gifts from each other, then more presents in the morning. I wrapped a lot of Jacob's in tissue paper since he loves the sound of it. It will be a wonderful time together....we have come SO far.

May the peace of Christ fill your hearts this holiday season.

Love, Karla

Tuesday, December 20, 2005 9:47 PM CST

Good evening! It's been a while since I wrote again...time just gets away from me! Jacob loved his Christmas party at school. As we were waiting for it to start, Jacob was hitting a switch with his voice recorded on it. He was cracking himself up SO much over it, it was hilarious! Such a great sense of humor! Once all the kids got there, they sang some songs and had a visit from Santa and Mrs. Claus. Here's some pics to share :)

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Singing Jingle Bells!

And sitting on Santa's lap!

Friday was a special day for Devin. All the 1st graders were making gingerbread houses with a special person. Needless to say after asking some other people, Devin had to settle with mom, you know the mom who is so boring because she comes to school all the time? He got over it pretty quickly though!

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Jacob got his hair cut on Friday too. It was getting SO long!

Saturday, we had a very nice treat! I got to meet an April '99 mom that I have been talking to since I was pregnant with Devin! They live in Tennessee, so what a small world that Wendy's husband works for a company based in Rochester! They were in Rochester for a company Christmas party, so the boys and I went there to meet up with her. It was so cool to finally meet someone I know so well!

Saturday night, we had part two of the Christmas program. Michael was Joseph.

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Afterwards, we were calling him Joseph. He was so funny saying, "Yo! You can call me Joe or you can call me Seph." Such a 7th grader!

On Sunday, we went to Disney on Ice. It was a lot of fun and totally amazing they can skate like that! The boys really enjoyed it.

Today, Jacob was observed by a vision specialist from the WI DeafBlind Association. Jacob's team of teachers and therapists and I met with Lyn after class to discuss what she noticed and to give guidance on what to do to further develop his vision. I was so pleased to hear he IS using his vision. He IS advancing since the first time she assessed him last March. He IS extremely expressive emotionally unlike many children with CVI (cortical visual impairment.) It made me feel so good to know that we are on the right path with him and to continue doing all the good things we are doing. It was also very nice to get some new ideas and insights into the whys and hows. Jacob just continues to AMAZE me everyday. He is such a wonderful blessing to us and reminds us everyday how special the little things are.

Here's a Devin funny to finish with tonight! Devin has always been one to have to figure things out in his mind to make sure they make sense. We were driving in the van the other day when he started talking about Jesus' birth out of the blue. He said, "So the angel told Gloria she was going to have a baby? And how did he just get there? Was Gloria really sad because she wanted a baby so bad and then God put one there?" I said, "Who's Gloria?" and he said, "Jesus' mom!" And then I realized he was singing Gloria in Excelsis for the Sunday school program and thought that was Mary's name!!! LOL!!!!

Hoping these days leading up to Christmas are filling your hearts with joy.

Love, Karla

Wednesday, December 14, 2005 1:29 PM CST

Hello everyone on this very snowy day! It's me Jakey! There are huge flakes coming down. And Mom had to shovel off my ramp this morning when I went to school and again when Mommy got me off the bus! She even shoveled a path down the driveway to the bus. It's really hard pushing my chair in the snow.

When Mom took me off the bus, she took the blankie off my head for awhile so I could feel the snow. God sure must love me for sending such awesome snow that I can lick!!! Oh, I had so much fun! The snow tasted so yummy, I was saying, "Num, num, num!"

I've had a really good week. Sunday we went to Maya's birthday party! It was a princess party, but she let me wear a crown, so I could be the king. Then Monday, we went over to Maya's again for lunch. It was her real birthday that day. I was sitting on the couch, minding my own business, when Maya decided I made a really good table for her plate! Mom said there are some benefits of not moving my legs very much, I could be very helpful for Maya. I tell ya!

School has been going awesome, awesome, awesome! Mom asks me if I am ready to go to school and I get SOOOOOO excited! I have the coolest teachers and friends at my school. They always make me laugh. They also make sure I can do lots of stuff like my others friends do. It makes me feel so good to be so special!

Tomorrow, I get to see Santa and Mrs Claus at my school! Can you believe it? Me and all my friends are going to sing some songs too. I bet I will be smiling so big!

Me and Mom were SO excited to see some new entires in my guestbook! It is so neat to hear from people we never knew were reading my journal. Thank you SOOOO much for signing and for always thinking of me.

I hope everyone is having a good week.

Love Jakey
in snowy Wisconsin!

Thursday, December 8, 2005 5:09 PM CST

Hello! Thought I'd take some time to update, since it's been a few days. We've had a fun and busy week! Things have been so busy that I don't know what I'd do with a quiet day! I've been going into Jacob's school this week to work on some bulletin boards and decorating the hall. I sure miss that part of teaching.

Tuesday, we had a Christmas party for our county's disabilities unit. There was food, crafts, sing along, a DJ, and a visit from Santa. It was a lot of fun! Here's some pictures of the boys with Santa.

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And here is crazy Maya!

Today when I went into Jacob's school, I got to watch his food group. They tried popcorn puffs, string cheese, jicama, and red and green peppers. Jacob loved rubbing the cheese on his lips and even put it into his mouth. He took a bite of the jicama and swallowed a piece!!!! Then he took another bite and this time we could HEAR him take a bite!!!! Talk about HUGE progress in the eating department! Within the last 2 months, he has figured out how to bite on his toothbrush and is now biting at his clothes and keeping them in his mouth like a puppy dog :) I can't believe the progress!!!

Jacob was fingerpainting today, and I just couldn't help but take a picture of him. Isn't he just the cutest?

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Tomorrow, my mother-in-law Lorraine and I are going Christmas shopping. I helped her last year too and then went out for lunch. It will be lots of fun. Nice to have those traditions :)

Hope everyone is having a great week! My guestbook is VERY lonely though! I know there are tons of you reading!Let me know how you are all doing!

Love
Karla

Thursday, December 8, 2005 5:09 PM CST

Saturday, December 3, 2005 10:58 AM CST

Good Morning everyone!!!

We had a wonderful, busy week at home and school. Jacob sure enjoyed swimming on Wed. Everytime we ask if he went swimming and did Humpty Dumpty sat on the wall, Humpty Dumpty had a great fall :::splash::: he laughs. It has been so wonderful for all of us to see him remembering what we are talking about when we ask him about stuff he did at school. It is becoming more and more apparent. On Thanksgiving when my mom and sister were asking him about school and his friend Ethan, he got all shy and embarrassed. It is such a HUGE step in the right direction!!!

On Thursday, he had his favorite nurse. She made him laugh so much, it must have hurt! I just love watching other people enjoy my son too :*) It really warms my heart.

Yesterday was the great Staple Removal Day. Devin thought he was all that. He was so funny....he said OW after the dr was done, not while he was doing it. He had to keep the staples to share with anyone who happens to want to see them and many of those who don't! After his appt, we ran some errands and then went to his school for a family night. Devin had to take his staples in with him to show off. He is such a nut! He even entertained his teacher with his singing of the National Anthem and God Bless America. Picture it song opera style...that's Devin!

Today, we will put up our tree and start decorating for Christmas! We are so excited. I am so glad I am done shopping so I can enjoy this time with the kids and Dave.

Hope everyone is having a great weekend! Drop me a note and say hello!

Love, Karla

Wednesday, November 30, 2005 9:34 PM CST

Happy Wednesday everyone! We've had a very good week. Only had to bring Jacob in for labs for a potassium level, so no other incidents this week. Devin gets his staples out on Friday.

Jacob had swimming today. Check out his pictures on the photo page. He loves it :) They were singing Humpty Dumpty and having the kids jump into the water. Jacob was totally anticipating the splash and would laugh as they were singing. He is such a character!

When Jacob was so sick, I remember praying that if God chose for Jacob to live, that I would do my best to be the best mama I could to him, to find God's blessings in whatever he was or wasn't able to do, and to praise Him for those blessings. Throughout the last 3 1/2 years, we've been blessed in so many ways, by so many people's generosity to us. Big and small tokens of their hearts, many of those anonymously. It would seem that with time, such things would become less, as the newness of Jacob's condition wears off. However, 3 1/2 years later, we are still being blessed by many things. I received 2 cards in the mail this last week from Ronald McDonald House. A note was included saying that a donation was given in Jacob's honor from my mom and my sister....I opened the mail today to see a magazine concerning Children's Miracle Network, and a beautiful face just happened to be amongst one of the pictures...Jacob received a special blessing with holy water today from a friend....the list goes on. It amazes me and often brings tears to my eyes when I think about all the things God has blessed us with. Just when I need it most. It's there.

Last year, we received a book called Make a Christmas Memory...Simple Things You Can Do to Celebrate the True Meaning of Christmas. The boys loved doing all these activities last year, so we began doing activities again last night. We read a story and do some sort of project. It has been so much fun to connect with the kids and each other.

Hope this week is going well for everyone!!!

Love, Karla

Sunday, November 27, 2005 1:38 PM CST

Strep Throat, Thanksgiving, Shopping, and Staples

What a week we've had!!! It started with Devin having strep throat and staying home for two days. Then came Thanksgiving and our trip to my sister's. Friday was the big shopping day. Holly and I had lots of fun! I got some awesome deals. Friday afternoon when I was wrapping Christmas gifts, Devin was playing downstairs with his friend Colt and Michael. Colt accidentally tripped Devin and he fell backwards onto a wooden tool box. I heard him screaming, but thought he was just being loud. Then I realized it was a little more than that. Devin came upstairs dripping with blood. He cracked his head open. I couldn't see how bad it was because of all the blood, so I put him in the shower to rinse some of it off. He had a mighty fine gash in his head, so off to the doctor we went. Poor baby kept saying "I don't want stitches! I don't want stitches!" When we got there, the doctor decided to put staples in his head, two to be exact. Devin was a little frantic at first, but decided to just get the staples without numbing it. He was so brave! The doctor and nurse were awesome too. He has been bragging ever since about how cool he is. He was brave AND he looks like Frankenstein. LOL

Jacob has been saying MOM so much lately. Actually he says BOM. How cute is that????? It seems like he knows what he is saying. He holds his lips all cute too when he says it :) If I can ever catch a picture of it, I'll post it!

I can't believe it is going to be December soon!!! WOW has the time flown this fall. We have had 2 snowfalls already, but both times it's melted after a couple days. The rain that is falling now is making it disappear really quickly.

Hope everyone is having a great weekend!!! Please post a note in his guestbook. I know a lot of you are reading!!!

Love, Karla

Thursday, November 24, 2005 8:49 PM CST

HAPPY THANKSGIVING everyone! I was told by my sister Sandi today that I haven't updated in a week, so I better get one on here!! So here it is! We had a very nice visit today with family in the cities. It's about a 3 hour drive one way, but seemed to go very fast. Half of the way is to Rochester, so that part always goes fast since we know all about that route! My nephew Matt was DYING for the boys to get there....they always love spending time together. After a delicious meal, a few rounds of Scrabble, and some pie, we headed for home. Tomorrow is the day I look forward to each year! Holly and I are going to brave the crowds bright and early. It should be lots of fun! I am sure Maya will find some way to entertain us along the way.

Now the mushy, sentimental part of today....

There are so many things I am thankful for this year. We have spent almost an entire year and a half out of the hospital. Jacob has not needed any "extra maintenance" this year...in fact he has not been sick beyond the normal colds and hasn't needed to see the pediatrician for anything beyond well checks. SOOOO thankful for this.

I am thankful for the wonderful staff Jacob has at Family Learning Center. It has been beyond any expectation I have ever had for his learning. I am so thrilled to have people who love and care for him and include him just like the other kids.

I am thankful for Jacob's 2 bubbas who have learned so much about real life through him. They have given me sanity (and sometimes insanity!) in all that everyday brings. I couldn't ask for two better boys who love so openly and truly bring me so much joy.

I am thankful for a husband who cares so much about all of us and helps out with the many extra cares that Jacob requires. I am so glad I am able to stay home because he has a stable job.

I am thankful for all of you, who visit this page and give us support. Many of you I have never met face to face, yet I consider you to be very close to my heart. Those of you who I do know personally have helped us more than you will ever know, and maybe more than I have ever personally thanked you for. It is with all of your love and caring that we are able to do what we do.

I am so thankful for all of you I have met because of Jacob. I have often thought about how many lives he's touched and the friends I have made because of him. Top of that list are Holly and Maya. It has been a tough year for both of them. There are so many times I have wished I could make it all better for both of them, but knowing that Maya is home now after such a scare, makes me so happy.

And with that, I will leave you all with some handsome pictures of the cutest 3 year old in the whole world!!!

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Boy am I FUNNY!

And the ever famous look:

Love, Karla

Wednesday, November 16, 2005 11:32 AM CST

The Million Dollar Question:

Why is it that every time we go to Rochester, it is either
A. Windy
B. Raining
C. Snowing
D. A combination of the above

Either we are there way too much, Rochester's weather stinks, or we are just "lucky" enough to be there when their weather does stink! We came home last night in the snow, wind, and mess. I was lucky to go over 40 MPH. The site of a semi jack knifed in the ditch didn't settle too well either. But we made it! Did you know you can listen to a Barney tape six times from Rochester?

All Jacob's appts went well. He had blood drawn Sunday night. We were at the hospital to visit Maya anyway, plus it saved me a too early start in the morning. Monday, we started the day with a renal ultrasound. The kidney stone wasn't visible this time, but I'm not totally convinced it is gone since that happened once before...it wasn't seen on a scan and then the next one showed it was still there. We got his urine sample next, then headed up to the Spina Bifida Clinic. We saw physical medicine first. We discussed getting his new wheelchair. YEAH!!! We also talked about Jacob's skills and at what point can we say if he is not sitting, rolling ,etc at a certain age that he probably won't. We have a little window of opportunity left since it is basically 3 1/2-5 years old, so we are hoping to push forward hard with sitting. Not to say he couldn't learn to after this age, it's just less likely. We have also noticed that with growth, it makes it harder to compensate for his size.

Jacob and I headed for our favorite sandwich joint and brought one over to Holly. We visited for a while before we had to head back to see urology. Everything seems to look great there. He hasn't had any UTI's lately and so we won't have to see urology for a year unless he starts having frequent UTI's.

Neurology was so pleased with his progress. Jacob hasn't had any seizures for so long....YEAH! We are going to work on taking him off his Topamax at the next visit. Topamax is the culprit for the kidney stone and calcium in his urine.

Nephrology said he has an elevated calcium ratio again, so we are adjusting his diuril. Then in 10 days, we have to check his potassium levels to make sure things are okay there. Hopefully the adjustment is necessary just because he's grown. Even more reason to get off the Topamax.

It was also fun talking to Deb, Ann, and Paula, some other great people involved with Jacob's care.

Yesterday, Jacob was measured for his new chair! I can't wait until we get it! Sounds like I will have to be patient though......it will not be an easy process, much like it was for his first wheelchair and the stander. Hopefully it will only take 3 months instead of 6 like last time.

We also got to visit more with Holly and Maya and our friends Tracey and Brittany. It was like a mini Ronald McDonald House reunion. LOL

Today I spent the morning cleaning and washing clothes, basically playing catch up. It's always hard to be gone and then try to get back on track. It's all worth it though to keep on top of things. I am so glad his team is so proactive.

Hope you enjoy the new picture on the top!!! Didn't his first school picture turn out GREAT????

Love, Karla

Sunday, November 13, 2005 1:05 PM CST

Happy Sunday! We are all "enjoying" the cold Jacob shared with us. Such a nice boy he is! The week ended with nothing too spectacular. Today was church. Jacob decided that while giving bubba Devin a wonderful hug, he'd throw in a chomp along with it. He left a big mark and got a scolding. I think he understood he did something wrong. He was all smiley at first, then got really serious. Poor Devin! Jacob has found out that his teeth can BITE. He bites his toothbrush, so much that it is hard to brush them. His jammie sleeve or shirt sleeve has been getting it lately too. It's so funny to see him actually using those teeth! Unfortunately it was for the wrong purpose today! YIKES

We are off in an hour to head for Rochester. Jacob has a FULL day of appts tomorrow starting bright and early. We are excited to visit with Holly and Maya too. Maya was transported to Rochester, since she is very sick right now. Please keep her very close to your thoughts and prayers.

Love, Karla

Thursday, November 10, 2005 9:31 PM CST

Such a week of busyness, yet also time to play and relax.
I've had a couple dr appts, the toilet was plugged and we had to call our guy to unplug it, not a good thing to happen in a one bathroom house, and Devin lost one of the lenses in his glasses. Today was complete with Dave running out of gas on the way to work this morning. Thankfully he had some gas left in his truck from taking the boat out this past weekend. Oh and he missed Jacob's conference because he had to work late....of course the ONE night he works late all month.

Last night when I was looking at Devin's glasses, I realized the lens was out. Devin said, "Oh! That explains why I got sand in my eye!" (It was windier than heck yesterday) LOL!!! It was good timing because thankfully we had ordered some new glasses that just happened to come in this week. We decided he could miss school for a couple hours this morning and we'd go pick them up. Devin was so thrilled to be able to help Jacob onto the bus. We followed the bus to school, so Devin could see what Jacob does every day. He told me he was so glad everything was okay. He was worried Jacob would get lost or someone would hurt him. He is such a funny kid...so caring about his bubba! It was so sweet to see Jacob's face when he heard Devin's voice at school :) So after a little bit of playing, we headed to the clinic to get his glasses. On the way out, Devin suddenly developed an appetite and was STARVING. Funny how the clinic=McDonalds or Burger King. He was convinced he had missed lunch (it was 10:40) and if he didn't he was SURE they wouldn't know what he wanted since he didn't sign up! So he HAD to have Burger King. Such rationale!!!! LOL Mom fell for it, so he ended up bringing Burger King into the school to eat at lunchtime. The funny thing is, Michael had just asked me when he was going to the doctor again. I asked why. He said because he wanted to go to Burger King and get a Star Wars watch. I asked what Burger King had to do with the doctor and he said, "Well, we usually stop there on the way home!" LOL!!!! Both are now sporting Star Wars watches!

Tonight was Jacob's conference. We reviewed his progress on his IEP goals. Seems like he is doing okay, making small steps here and there. Everyone seemed pleased with his smiley, happy self. He seems to bring a lot of joy and smiles to everyone he meets. (surprise! surprise!) It's always a bit painful to me too when I think about his skills. He doesn't hold his trunk up completely upright, push himself up on his arms, roll, or sit. Not to mention the huge lack of vision giant that looms over us, adding more questions than providing answers. In order to do so many other skills, he has to have these foundational skills. He has come SO far. His progress is steps within steps. For each of these skills, he has progressed HUGELY from where he started. He just hasn't reach that final hurrah. I have hope to someday see this, as I look back and realize where we were. It just hurts so bad sometimes. Yet on the other hand, my FOUNDATION, my love, devotion and faith in him and HIM are still there.....just every now and then I need to take time to grieve. Not so much for him, but for me....and tomorrow will once again be okay.

Love, Karla

Saturday, November 5, 2005 9:59 AM CST

Good morning! Such a fun week with Trick or Treating! Jacob is loving his suckers. Mommy is loving the chocolate. LOL It's so cool to know that he can eat at least SOMETHING. What a huge, HUGE deal for all of us. These are the little things I used to take for granted. Not anymore. I was telling someone the other day about one of the biggest blessings we've received from having Jacob is that because of him we've noticed the littlest things and what a wonder each of those little things truly are. Like last night, I walked past Jacob without saying anything to him to sit on the couch and he turned toward me. We praised him immensely for looking towards Mommy! There is no direct eye contact with Jacob, but he sure was seeing me in his own way!!! Or how about the kisses the brothers get when they hold him? He just slobbers on them...sometimes too much with the cold he now has! LOL The "I love you too" he says everytime he kisses you. This one kills me.....Mr. "He's Never Going to Do Anything" knows how to say I love you. In that one phrase, he never has to say any more than that....it says it ALL. Even the hitting he has been doing when you hold him. Boy, has that left arm gotten STRONG!!!! When kids have CP, one side is often affected, Jacob's right side is weaker, and the other side makes up for it in many cases. His sure has!!!! One of my favorites though is how he throws an absolute FIT when Barney is done....it can't start fast enough again for him!!! (Gotta love auto-repeat) All these things make up a special little boy who by some standards is extremely disabled, but in his Mama's, Daddy's, and big bubbas' eyes he's PERFECT.

I am looking out the window and seeing "our tree" turning beautiful colors. All the rest of trees in our yard have long ago lost their leaves...but not our tree. Our tree was waiting for us 3 years ago.....
When we bought this house the year before Jacob was born...actually a year to the day of when Jacob was hospitalized for meningitis....one thing that drew me to it were all the beautiful trees in the yard. We only had pine trees at the last place we lived. I couldn't wait to make leaf piles with the kids, have leaf fights, take pictures, all those fall things you do. When we were in Rochester Fall of 2002, we went from wearing shorts when we came, to coming home in winter jackets. I remember asking Dave how the trees in our yard looked. I was sad we were missing it. We did see the trees in those couple blocks from Ronald McDonald House to St Mary's that were beautiful. I remember Devin and I purposely making as much noise as we could rustling through the leaves that had fallen on the sidewalks. We'd stop and try to catch leaves falling. We were sad when they were all gone. I couldn't help but think about all I was missing at home, those normal things you do and those things you miss, like the leaves turning and playing with my kids in a leaf pile.

Just before Jacob was scheduled to go home mid-November, Jacob's head nurse asked me if I wanted to go home overnight on Saturday to get things ready for his homecoming. I was reluctant at first since I had not left him more than to sleep each night. She reassured me it would be fine because she would be working and that I really needed to be home and organized before he got home and it was overwhelming, not to mention how good it would feel to sleep in my own bed. So I did....let me just tell you that men have a whole other idea of what clean means! LOL It was also at that time that I noticed one tree was still bright yellow. The others were bare, yet here was this one tree, as if it was waiting for me. And so, just before returning to Rochester the next day, we took the time to just be....the leaves were flying, the laughs were many, and we just were....memories like that last a lifetime....

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Love, Karla

Tuesday, November 1, 2005 9:35 AM CST

Hello everyone! I had a super de duper awesome Halloween! My mommy and bubbas helped me decorate my wheelchair for my costume. I was KING JACOB!

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At school, we had a party! We went trick or treating to the other classrooms. Here is my teacher Marilyn, me, and two of my friends!

For snack, we had yogurt smoothies. I even got to help make it!!!

They plugged the blender into the Power Link and I used my switch to turn it on! Just like I helped Bubba Devin make popcorn!

After I was done with school, Mama picked me up and we went trick or treating to the radio station where my girlfriend Jacklyn works. She wanted to see my cool costume. I even got some kisses out of the deal!

I took a long nap so I was ready for the big night. I loved it! It was so nice outside and it was fun getting candy! I got lots of suckers. YUMMY!

Here are me and my bubbas.

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Bubba Michael was Darth Vader.

Bubba Devin was a SCARY skeleton!

And me, the King!

Look at this one....I am thinking "MONEY!!!!!!"

When I got home last night, my feet were really cold...a harsh reality for mama of what spina bifida is about....my feet are really swollen today :*(

Today are my school pictures. Mama is going to school to make sure I look marvelous!

Hugs and Kisses,
Jacob

Tuesday, October 25, 2005 11:04 PM CDT

What an exciting last few days!!! I have gotten Jacob to repeat MA 3 times so far :) He doesn't necessarily know it means me yet, but it is a start!!!

We also carved his little pumpkin he got on his field trip to the pumpkin patch. Check out the pictures on the picture page!

Yesterday, his bus driver gave him suckers when he got off the bus. At supper, we gave him one. Normally, he just rubs it on his lips and drops it. Not this time! He even licked it! He was having so much fun with it. If he dropped it, I couldn't give it back to him fast enough. Check him out :)

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Notice how PURPLE he is!!! He ate the whole tootsie pop down to the tootsie roll center :) I can't believe the progress we are making with him. Before, he would have only tolerated a few tastes. If it went farther than his lips, he would have gagged. I am so happy and proud of where he is going!!!!

The boys are getting ready for Halloween! Devin is going to be a scary skeleton!

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Jacob even had to try on the mask!

BOO!!!!

And we have a new member in our family....introducing....

MICHELLE!!!

One final word....Jacob wants me to tell you "Don't hate me because I am BEAUTIFUL!"

Love, Karla

Saturday, October 22, 2005 8:51 PM CDT

I just realized I hadn't updated for days! Sorry! Jacob had a great week at school. He continues to jabber very loudly. He was talking so much one day that Lisa, his speech teacher, took his switch and recorded him talking. He played with that thing for HOURS, hitting it, laughing at himself, hitting it again! It was a riot. The funniest part was he had sounds on there I have never heard before! It was awesome :) If you want a wav of it, email me and I can send it to you!

Wednesday and Thursday, his teacher Marilyn was gone to a conference. One of the sessions she was going to was on cortical visual impairment, what Jakey has, so I am excited to hear what she learned!

Thursday morning, Jacob and I were on the radio for the Children's Miracle Network Radiothon again. It was lots of fun :) It was neat seeing everyone again. They couldn't believe the curls!!! He was in fine form, smiling like crazy and laughing whenever I'd ask if he was stuck (his arm was stuck in his coat when I tried to take it off!) He started talking to everyone too, but there was a lot of commotion going on, so he wasn't as loud as he can be sometimes! Here are pictures with his sweeties.

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This is Jacklyn from CC106.3, the country station we listen to. She is in love with Jacob!

This is Debbie from Magic 105. She always gets him to smile!

Yesterday, we spent some time visiting with Holly and Maya at the hospital. She was out for 2 weeks, but is back in again. Please keep them in your thoughts!

Michael had 2 friends over last night. They were both very well behaved and had a great time. Dave had to work this morning, then went to help his mom with some things. We went on a diaper run, Michael went to his dad's, and we've just sat around here the rest of the day....I like days like that!

Thanks to everyone who's signed the guestbook lately! It's always nice to hear from you :)

Love, Karla

Tuesday, October 18, 2005 2:51 PM CDT

My Trip to the Pumpkin Patch

I was so excited to go on my first field trip today! My bubba Devin told me it was going to be fun going to the pumpkin patch since he's been there before. The bus came and got me. My mommy rode with her friend Diane. She has 2 boys at my school too!

When we first got there, we all sat around the campfire. This is me and my aide Lori.

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My friends were all waiting too! Here are some of my friends.

My teacher, Miss Marilyn, is holding me. Ethan has the glasses on, next is Payton in the middle, and Zach on the left.

That is Ethan standing up. He is a very silly guy! Miss Marilyn is sitting by him too.

All of a sudden I heard some jingling! It was the horses coming with the wagon!

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I was so excited to get on the wagon!

I really loved all the bumps! They made me happy. I picked a really cute little pumpkin! It was very COLD!

Do you notice I like my finger on my lips????

After my friends and I were done getting our pumpkins, the other kids rode the wagon and picked a pumpkin too. I sat around the campfire again and even licked some smores off my lips! Here is me and mommy enjoying ourselves!

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I got back on the bus and met Mommy back at school! I sure had a great day!

Love, Jacob

P.S. There are some more cute pictures of me on my photo page!

Monday, October 17, 2005 10:13 PM CDT

Good evening everyone! I have all the boys sound asleep and I am sitting in a very quiet house. Oh so nice!!!

Thursday night, we had an awesome time at the family fun night at Jacob's school. It was nice for Dave to finally meet his teacher and see the classroom. I think he was very impressed with all they do with him. The boys loved making all the crafts too. Devin was so excited to be back there since that is where he also went to preschool. The snack was a big hit too....one popcorn monster and one chocolate brownie monster. Those kids can EAT when they want to!

Jacob got to play with his friends Blake and Levi on Friday and Saturday. They are so gentle and sweet with him. And boy, did they get him laughing!!! Then Levi, who is 2 1/2, would ask him "Is that funny?!?!?" It was so darn sweet!

We got the yard pretty much ready for winter. My hands are proof! I was busy pulling weeds, trimming some overgrowth, raking, etc, and my hands are killing me now! But I'll live. LOL

Jacob has been vocalizing SO much at school. The speech teacher told us the other day she was talking back and forth with him. When she went into her office and shut the door, she could still hear him through the walls! What a kid!!! To think that 2 years ago at this time of the year, I was asking the same speech teacher when Devin went to Oak Grove FLC, how to get Jacob to verbalize since he had NO, and I mean absolutely NO, sounds coming out except for a cry and a little laugh. Amazing the progress. And let me tell you, he is LOUD!!!

Tomorrow is our fun trip to the pumpkin patch! Jakey's first field trip! Be looking for pictures!!!

Love, Karla

Thursday, October 13, 2005 7:59 AM CDT

Good morning! Jacob actually slept last night until 7! It's probably because he didn't go to sleep until 10:30, but still! For some unknown reason, he has been waking up at 3:30-4:00 for the day. Can you say ANNOYING??? He is ready to go and thinks if he is awake, then you should be too. He yells at me! LOL Hopefully whatever is causing this, goes away soon....

Wonderful week of school so far! Monday was a 2 hour late start in our district, so Jacob didn't go to school. Yesterday, he decided to throw up his meds just as the bus came, so needless to say, after a change of clothes and more meds, I brought him to school. Because of Jacob's wonderful sleep schedule, we fall back to sleep around the time we are supposed to get up and so Devin almost missed his bus on Tuesday and Michael on Wednesday! So far today is going better.

Devin lost another tooth last night! I was in Rochester for the Family Advisory Council meeting, and Devin calls me telling me about it. I was given instructions to wake him up when I got home so I could see it! This morning he was snuggling with me and said, "I can't believe I lost another tooth!" and in the second breath, flew out of bed saying "MY MONEY!!!!" and ran to see what the tooth fairy had left him! He is such a riot!

For our meeting last night, we served a house dinner at Ronald McDonald House. It was lots of fun giving back to a place that has been so special to our family. Jacob came with me and visited with our wonderful Dr. Nickels while I was busy. Dr. Nickels was the resident in the NICU when Jacob was born and we have become good friends ever since! She has a 10 week old beautiful little Maya that I got to snuggle with too!!!! Thanks to that, I had a dream I was having a baby girl!! UGH! Jacob really enjoyed being entertained by her kids and didn't even cry when Maya fussed. WHAT A BIG BOY I have :)

Jacob has learned the fine art of OPINION. When he is listening to his Barney tape in the van or watching Barney DVD's, he has songs he doesn't like and I have to fast forward through them. The top two on his "I hate this song, you better fast forward it now" list are Mr. Knickerbocker and The Bear Went Over the Mountain. He will throw an absolute FIT....screaming and crying at the top of his lungs...the funny thing is, at the end of the previous song, he starts getting upset because he knows it is coming! LOL The most pathetic thing though is that he will INSTANTLY stop as soon as you fast forward it.

Today, we are going back to Rochester to get his wheelchair adjusted and then back quickly to go to the Family Fun Night at Jacob's school. It will be nice for Dave and the boys to meet his teacher!

Hope everyone is having a great week! Leave a message in the guestbook so I know you stopped by!

Love, Karla

Sunday, October 9, 2005 10:56 PM CDT

Hello everyone! Sorry it has been so long between entries!

Jacob and I had so much fun being in the Homecoming parade on Friday. I helped decorate the float in the morning while Holly kidnapped Jacob, and then in the afternoon, Jacob and I rode in the parade. Michael also marched with the band, which just happened to be 2 or 3 units ahead of us, so we got to listen to them the whole way! They are SO good for 7th and 8th graders! When we came to Devin's class, he was SO excited! All the kids were yelling hi to Jacob too. Devin couldn't quite understand why Michael didn't wave to him though. LOL

Devin, Jacob and I met Holly and Maya at the park today. We had such a nice time since the weather was perfect and the park is so beautiful, especially at this time of the year. Check out all of our new pics! When I was putting the collages together and also adding the picture on the front, I just couldn't help put think about how beautiful my boy is...Everything we've gone through to get him to this day has been so worth it when you just look at the joy and happiness on his face......

Love, Karla

Tuesday, October 4, 2005 11:15 AM CDT

Good morning! It has been a nice week so far! The ramp is as slick as it gets....I am LOVING being able to get him in and out of the house so easily and not trying to balance him, his stuff, my stuff, whatever coming in and out. The Lions Club will come back to stain it after they let the boards dry out some.

Michael and Devin have been hard at work raking leaves in the yard for a leaf pile. They wanted to have a leaf fight, so just as it was getting dark, we braved the mosquitoes (why there are still mosquitoes in October, I have no clue!) and went outside. Poor Jakey has a nasty bite on his ear :( But the leaves were worth it...he laughed SO hard just listening to the crunch of the leaves.

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As you can see he was totally covered!

Here's some more of the boys.

Yesterday after school, we met Amy and Trevor for lunch. Trevor is about 6 weeks younger than Jacob. Trevor had so much fun pushing Jacob around McDonald's playplace. He'd push him up to Ronald McDonald so he could touch him, he'd bump him into something which Jacob thought was hilarious, and when Jacob was talking to him, "NA NA!" Trevor repeated him. It was so cute to see them playing together. While Trevor could have just gone up on the climber and played the whole time, he chose to come back and play with Jacob, pushing him around. It was so nice seeing Jacob have a friend.

I went to Jacob's school this morning to make some plans for the float the school is having in the Homecoming parade on Friday. Of course, I also just had to watch my boy in action at school. At circletime, they were reading a book and Jacob also had a texture book he was feeling during that time. And jabbering too of course. Boy, that kid is "talking" a lot more! It's so neat to hear. During project time, he cut with scissors. They are hooked to his switch and Lori, the assistant, helped him cut it. He didn't like the noise they made....mostly because he knew mama was sitting there I think! One word...attitude! We helped him get through it with being silly. Next was snack. He did some very nice oral motor with a spinning mouth sponge. And of course he had to be in total control...aka death grip....over the spoon when he ate his apple blueberries. After he was done eating, he had playtime and that is when I left so I could come home and get a few things done. Another great day at school!

Love, Karla

Sunday, October 2, 2005 3:27 PM CDT

Good Sunday afternoon to everyone!

Friday, Marilyn and Lisa stopped by to update me on Jacob's progress, talk about what other things we need to start doing or need to focus on, that kind of thing. It seems like Jacob is learning his routine very well and the communication piece is coming along nicely. He really seems to be understanding more of what you say and will try to respond more to you. I am seeing not only the NO head shaking, but YES more often as well. He is using ALL DONE very appropriately and just seems different....like he is just getting it more and more. I shared with both of them that I was never worried about sending Jacob from the standpoint of me missing him too much or not wanting him to go. If I was worried about anything when I initially thought about school was that I wanted others to understand just how special he is JUST the way he is. It's hard for us sometimes because people often try to figure out what he is looking at....he is visually impaired. They try to tickle his feet...he can't feel anything below the knee. They say he looks tired...he is mentally handicapped. Everyone at school has been SO much more than I could have ever, ever hoped for. They really care about Jacob, include him in what the others are doing, regardless of his lack of ability to do it himself. This alone takes a lot of the teacher's time, but everyone has so willingly done that for Jacob. That has been the best gift we've received this year. My boy BELONGS.

It has been a very nice weekend. We started off by going to the Oktoberfest parade in La Crosse.

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The kids always enjoy getting the candy and other stuff they hand out. The boys even got mustaches and goatees painted on them!

Devin and Michael LOVED getting all the Mardi Gras beads and of course they want me to tell you they have 27 of them. LOL Here's Devin showing off his beads and his Fox 25/47 shirt he was given since the man from Fox thought he HAD to have it.

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Jacob did pretty well this time, only crying a little bit when the trucks honked their horns or blew their sirens. He doesn't look all that thrilled in this picture, but I think he was trying to figure out what the heck all the noise was about!

Today, the Lion's Club came out and finished the ramp! Here's the project from start to finish. I can't wait to use it for school tomorrow!!!!

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Hope all of you are having a super weekend too! God's blessings on each of you!

Love, Karla

Thursday, September 29, 2005 4:35 PM CDT

Happy Thursday! Boy, I've had a fun week! Bubba Devin always loves to eat popcorn, and this time he let me help him! Mama hooked the popper up to my switch and look out!!!

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I thought I was so funny! I'd hit it over and over...start, stop, start, stop. Daddy said it smelled like it was burning. Devin said it was the best popcorn he's ever had. Michael had to watch to make sure I was doing it right!

Yesterday, I got to go swimming with all my school friends! It was awesome. My teacher said I look like a little fish! It was so much fun. The PT held me most of the time and then they put me in a neck flotation and I did pretty well. Mom was glad I didn't pull the poop all over trick that I sometimes do when I get in the pool!

My teacher has this very funny toy. I push my switch to say, "I want the puppy" and then the puppy barks and gives me kisses. My school sure has lots of neat toys for me!!!
My teacher Marilyn and my speech teacher Lisa are coming over to my house tomorrow to visit with Mommy about how I am doing in school. I think I am doing great!

Check out some new pictures of me in the photo album too!

Love,
Jacob

Monday, September 26, 2005 10:02 PM CDT

Hello everyone! We had a beautiful weekend celebrating my mom's wedding. Here is the happy couple.

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It was so much fun having all 6 of us kids together again! We have not all been together since May 1992! Here are all 6 of us kids.

There was also 13 of the 16 grandkids there!

The boys are had so much fun playing with their cousins. Jacob got TONS of lovin' from everyone too. It was great!

Jacob had a great day at school again. He seems so happy to go. Wednesday they are going swimming for the first time! He should love that!

Not much else new to report. Please note the change in my email address at the bottom.

Love, Karla

Friday, September 23, 2005 5:16 PM CDT

Jacob finished the week up with a nasty cold, but still happy as ever. He even trained his teachers in on the fine art of cleaning up puke. The first time they panicked and called the mama. The next time they got it down. He gets so mucousy and can't help it I guess!
He also decided that Thursday was a no switch day. He refused to push them when asked and was rather proud of his defiance I might add!

We are on the road in 5 minutes to go to my mom's wedding :) We are all SO excited for her after being a widow all these years....in fact since I was just 10 months old! Happy thoughts to my mom and Marvin tomorrow!!

Love, Karla

Tuesday, September 20, 2005 7:31 PM CDT

Hello everyone!

I figured something out....my boy is a manipulator. The whole crying thing when I was putting him on the bus was his way of finding out who's boss. Thursday, he stiffened his body, you know the typical fit a kid throws, so I couldn't put him in his carseat on the bus very easily. I scolded him and told him it was enough. Come Monday, I guess he knew he couldn't get away with it anymore. No fits yesterday or today. There is a HUGE part of me doing this cheer. I've had to refrain from taking out a billboard announcing that "Jacob was NAUGHTY!" so I will just post it here. I am just thrilled with this new found attitude that has developed over the summer. He has come so far from what anything we could have ever thought or expected. It was 3 years ago today that our boy ended up in the PICU sooooo sick. I'll take naughty any day....

Love, Karla

Friday, September 16, 2005 6:45 PM CDT

Hello everyone! Jacob is busy watching Barney. First he was in his stander for 1 1/2 hours, now he is laying on his tummy watching it. The kids who wanted to be picked up after just 2 minutes of tummy time is now laying on his tummy for up to 1 1/2 hours because of the big purple dinosaur. Whatever works!!!

School went well yesterday. He did some more artwork, played with the kids, and did an awesome job feeding himself at snacktime. He even decided to throw a huge fit for me when I was putting him on the bus. Attitude!!!

Yesterday, I spent some time pampering myself by getting my hair done. Jacob had his cut today too. We will get the rest of the guys fixed up too, because next weekend is my mom's wedding!!! We are all so happy for her!

Please continue to keep Maya in your thoughts and prayers. She has been transported to Mayo to have her port removed. She still has her infection too after a week of antibiotics.

Hope everyone has a great weekend! Leave me a note to let me know you were here!

Love, Karla

Wednesday, September 14, 2005 5:41 PM CDT

I went to Jakey's school today! I rode on the bus with him. He cried for my benefit and when I stopped paying attention to it, he stopped. Boy, he learned that quickly!!!

When we got into school, the speech therapist, Lisa, vision therapist, Sue, the teacher, Marilyn, and the aide, Lori, were in the room. They did table time, where he played with some blocks. We gathered on the rug for circle time. He sat in a special chair by the kids :) He has Ethan, Jadyn, and William in his class. They sang a song and then did a morning message. Everything the teacher said, the kids repeated. The aide recorded on his Big Mack so that he could "talk" too! Then they all took turns circling their name on the board. The kids all said hi to each other. Once again, they put it on his Big Mack, so he could participate. Then she taped "I want a turn!" and so then he got his turn to go up front and circle his name. All the kids said "Hi Jacob!" and he said "Hi friends" back!!! It was the cutest darn thing. Then I shared Jacob's book I made called All About Me. The kids loved the picture of Jacob with Barney the best.

Next, they did project time. The kids practiced cutting and gluing. For Jacob, they put him in another chair to sit up at the table. It has a tray too. He stuck crunched up paper onto contact paper. He LOVED it. He laughed when he felt the stickiness :) I thought it was the COOLEST thing how he had a project too....I can't even tell you how much that warmed my heart to see him sitting with the kids :*)

Image hosted by Photobucket.com

Next was snack. He sat at the table eating his pears and pediasure while the other kids ate. It was awesome.

Afterwards was playtime. He worked with speech on turning on a tape player with a switch. Ethan came over and asked for a turn. Lisa said, "Jacob, can Ethan have a turn? Thank you Jacob!!!!" It was so cute!

After he was done with speech, the teacher put him in his chair and went to the tent where the other kids were playing picnic. She asked if he could come in. All the kids said, "HI JACOB!!!" and then Ethan said, " Jacob, come and eat a sandwich!" LOL! He sat in there with the aide and played :)

It was time to go home after that. He had a great day!

It's Dave and my anniversary today too, so we are going out for supper. Have a great night everyone!

Love, Karla

Monday, September 12, 2005 9:29 PM CDT

What a treat when I opened Jacob's backpack today. I found not one, but two art treasures. He fingerpainted last week and today he did bingo dabbers. He even has ink on his hands still :) It was quite the joy for me to see that ink, seeing that he never has had such a thing on his skin. Oh the joys of preschool....I even got to wash out some of the paint off his shirt from last week.

As soon as his little butt hit the carseat on the bus this morning, he started to cry. I sure hope it is just a matter of spending the last 4 days off from school and he'll adjust to it again. Give it time and I am sure he will be fine. The funny thing is, I don't feel like a panicked mama hearing him cry like that. I guess mostly because I am SO PROUD he is going to school. I can't help but think about where we were 3 years ago....I couldn't even begin to imagine preschool, nonetheless what was going to happen tomorrow.

Today was a I'm just going to lay in my bed all quiet and make you think I am sleeping day. No nap. That probably explains why he was in bed by 6:30 and sleeping by 7 huh?

Tomorrow is a new day and hopefully it won't begin at 4 AM since he went to bed so early tonight! LOL

I found this poem on another website and I sure hope whoever the author is doesn't mind me posting this here...

Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly.
One day, however, down the conveyer belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's uhm...well...different." "Yes, he is unique" said the second angel. "Well I think he is quite special," said the first angel "but I don't think he will quite fit our standard wrapping procedures." And the second angel added, "And we know he's special, but will everyone else?" "Not a problem," said the third angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special he is." "What a wonderful idea!" replied the others. So they searched the shelves high and low for their finest paper, and their most delicate ribbons.
When they were done, they stood back and admired their work. "Beautiful!" thay all agreed. "Now for our blessings," said the third angel "for it is time for him to go." "I will bless him with innocence and happiness," said the first angel. "And I will bless him with strength to face the many challenges that lie ahead" said the second angel. "And I will bless him with an inner beauty that will shine on all who look upon him" said the third angel. Before sending him off the third angel, who was very wise, gently tucked a note inside.

And it said:

Dear Parents,
Today you have received a very special gift.
It may not be what you were expecting,
And you may be disappointed, angry and hurt.
But please know that he comes with many blessings,
And, while there may be pain, he will bring you much joy
He will take you in a very difficult journey,
But you will meet many wonderful people.
He will teach you patience and understanding
And make you reach deep inside yourselves
to find a source of strength and faith you never knew you had.
He will enrich your lives,
And will touch the hearts of all who meet him.
He may be fragile,
But he has great inner strength.
So please handle him with care,
Give him lots of attention,
Shower him with hugs and kisses,
Love him with all your heart,
And he will blossom before your eyes.
His spirit will shine like the brightest star for all to see,
And you will know that you are truly blessed.

Love, Karla

Thursday, September 8, 2005 11:00 PM CDT

We have an artist in the family! Jacob fingerpainted today, with paint and with yogurt :) The yogurt was quite tasty I guess and he licked and licked it. In fact, he was still quite fruity smelling when he got home. LOL Jacob was also able to be a part of all the activities today by sitting in two different chairs they have in the classroom, which put him at the same level as the other kids. Pretty neat!

It sounds like he had a great first week. No crying on the bus ride home today because he had a fun new toy to play with. I think over time he will get used to it. Doesn't sound like he is having any problems with the noise at school. The aide sneezed today and he didn't cry, so that is good progress!

Tonight I went to Rochester for the Family Advisory Council for Mayo's Children's Hospital. We were able to see a mock up of the new exam room that will be on the 16th floor. It was pretty awesome! I am looking forward to that floor being opened next spring.

Here's some cute pictures I haven't shared yet!
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Love, Karla

Wednesday, September 7, 2005 10:23 PM CDT

School...Day 2!!!

Another awesome day! Jacob did really well this morning. When I put him on the bus in his carseat, he started to cry, but I told him he was a big brave boy and all was right with the world once again.

I went to Moms and More at church and on the way back, I stopped at the school. I was happy to see my boy looking good, lined up with the kids to go home. The speech teacher, Lisa, took me aside to tell me how he used a switch to activate this circle of bells ( very loud ringing bells I might add! LOL) He hit it once and it worked, kept hitting it, it worked again, then realized that he needed to HOLD it down to make it work continuously. BRAIN POWER BABY! Look at my boy go! Then he participated in group with his Big Mack switch, which was programmed to say Hi when the kids said hi to him...he'd push it and say hi back! While in group, Miss Marilyn, his teacher, was also asking questions like "Who has ears? Who has eyes?" etc and Lisa programmed his Big Mack to say "I DO!" so he could participate. At the end of the day, actually when I was walking in, they shooed me out so they could program his Step by Step switch. It told us about his day. The COOL thing is, they are finding ways for him to share with us, even though he is not able to talk! So tonight, Michael programmed it to tell about his night with us, and so tomorrow he can share with the class! My boy is the button pushing master I tell ya! He LOVES IT!

After talking to Lisa, I also got to talk to the vision therapist. She is coming Tuesdays and Wednesdays :) I am SO excited about that! Finally some more vision therapy! Also talked to Miss Marilyn who said she got teary eyed watching Jacob activate the bells..she was getting teary eyed just telling me about it! She said it was SOOO awesome to see how quickly it clicked with him! It was then that I really needed to leave, seeing that I put my boy on the bus and we are the first stop!

All is well at our house....I am happy, happy, happy!

Love, Karla

Tuesday, September 6, 2005 3:09 PM CDT

HAPPY SCHOOL DAY! Jacob went on the bus this morning. He looked like, "Why the heck are you putting me on here?!?!?" He was fine when I got off the bus, but at 9:15, 15 minutes after school started, I got a call telling me he cried all the way to school. I had a feeling he'd get scared by the noise of the bus and no mama to sit by him. But he was easily comforted I guess and was laughing when the speech teacher called me. He played in lentils at the sensory table, had his pediasure, and had lots of attention from all the ladies at school. The nurse, PT, and OT were there to help with the extras, and I think it went well from what I heard! When Jacob got off the bus, he was all smiles. He came in and kissed me for five minutes straight and TALKED. It was SOOOO dang cute!!! He snuggled with me for a while and then the nurse came. He had his stretches, his bath, and he was OUT! Gwen had to feed him while he was sleeping. I think he was whooped!

Check out the pictures! There are pics of Michael and Devin on their first day too, which was Thurs the 1st.

Karla

Monday, September 5, 2005 9:59 AM CDT

One more day until school! WOW. I am so excited for him to go...I think it will be WONDERFUL. On Thursday, the teacher, aide, speech teacher, and OT came over for 2 hours to discuss starting school and to get an update on his progress over the summer. I feel SO good about sending him. I feel like everyone was on the same page as I am concerning WHO Jacob is and our expectations for him. It should be a fun year for him with lots of changes! On Friday, we went over to his school to drop off all his supplies he needs. We talked some more to the teacher and also the adaptive PE teacher. He will start swimming at the end of Sept :)

On Saturday, Grandma Lorraine came over for a birthday dinner and then went to the rodeo with Dave. They had a good time. Sunday, we went to church and then over to some friends, Dawn and John's, for a cookout. Today, we are having a lazy day. Dave just woke up and is going out fishing. It's nice to have those days where you don't do a whole lot of anything!

I will update tomorrow with pictures of the big school boy!

Karla

Wednesday, August 31, 2005 3:49 PM CDT

Hello everyone! It has been so long since I wrote! Thursday night we went to Sesame Street Live. Jacob really enjoyed himself!

Friday night we left for the Lions Camp where we had a get together with the WI DeafBlind families. Grandma Lorraine came with. We got there around 8. It rained the whole way. Ice cream social was done by the time we got down there which upset the kids. Came back to our cabin and settled in. It was your typical camp cabin....lots of beds and closets! In between our cabin and the next was a living room area, with a sink, fridge, and microwave. We each had our own large bathrooms too. The family next to us were very nice! They live only about 40 minutes from us which was cool! Their daughter has a chromosome deletion and is now 12 years old.

Saturday we started with breakfast. Then we moved on to our meetings. The boys all had activities they took part in.....nature walks, arts and crafts, took a ride on the pontoon, swimming, and Michael's group of older kids helped make cookies and smores for that evening. They also served lunch :)

Dave and I went to the meetings. We had a PT talk to us at one, an augmentative communication discussion at another, relaxation, and parent to parent meetings. It was so nice to be together with Dave for those. We really have connected with many of the other families too since they all have kids with severe disabilities like Jacob. I think that was my favorite part of it....being around others who know what it is like. No stares, no hard to answer questions, just understanding.

Saturday night we had a costume party. Since Devin is the king of costumes, we all had something to wear. I was a witch, Dave was a wizard, Michael was a dracula ninja, Devin was Captain Scream (Captain America costume with a scream mask) and Jacob was Batbaby! LOL It was so fun....we all got up and said who and what we were...everyone was clapping and acting goofy. It was a riot. We spent a lot of time around the campfire and made smores, talked to other families...it was so much fun.

Sunday, we wrapped up with a few more meetings while the kids went on a wagon ride.

I can't even describe how much we got out of the weekend...it was so great to be around others who's kids are severe too. It's just different and awesome at the same time. I can't wait until next year! One of the speakers put it SO eloquently....she said that we probably all feel we would never wish this on our worst enemy. It is a struggle and painful. BUT at the same time, we wish we could wish it on our best friend because then she would see just how WONDERFUL it can be. I don't think I could have said it any better...I have thought about that all weekend and it is what I feel deeply in my heart. I wish you all could know just how wonderful the little things are. How heartwarming it is just to love him the way he is. It's pretty awesome.

We came home only to switch clothes and leave within a 1/2 hour. Off we were to Rochester for his visits. The day started with blood tests. We have an order from our ped that says they can take it from his foot. Went very well, since he can't feel it! He was smiling and flirting. Then the tech tells me that he needs to keep his leg elevated for 2 hours to prevent blood clots...that is why they don't usually take it from the foot. Lovely....nice way to scare the mama.

We then went to x-ray for his hip. He lays so still, it went fast. Next we headed for the peds floor for the rest of his appts. Started with the dietician. She thinks everything looks fine nutrition wise. He is getting enough pediasure and enough nutrients from it not to need to add any vitamins, etc. At four we may have to change some things. She thinks he looks really healthy and has a nice growth curve...FINALLY!

Saw Physical Medicine and Rehabilitation next. She is very tickled with how he looks and is very excited for him to start school where he will have more therapy. No concerns at all...in fact she didn't want us to see the PT for a consult this time and said we could come back in 6 months :) Used to be every month, then every 3, now every 6!

Deb the nurse came in next and took his vitals. Discussed starting school and all the necessary parts on their end as far as educating the school staff, building those connections with them, etc.

Had lunch next. Had to get my most favorite sandwich. YUM! It was like a Philly Steak and Cheese, but with chicken.

After lunch it was the developmental ped. I like him, but he drives me nuts too because it just always seems like there should be more. I like him, so it's not bad, just annoying. Plus the testing he does isn't appropriate or accurate for a visually impaired child, so it seems a little skewed. And Jacob is shy around other people generally, so he doesn't see the things I do. He finally said that it appears that I am consistently saying the same things and have seen growth with Jacob, so he knows I am not way off base and making it up. It was actually a little humorous when he said that....must have parents who are way out there! Anyway.....so according to what I said, he goes as high as a 14-16 month level with speech. He's a 2-4 month level for his motor skills. Around 6 months consistently overall.

Social worker came to chat....then neuro came in. She is very pleased and is hoping to let him outgrow another med which will leave us with one. Can't believe how far he has come but said it's because we have given the effort in all of it.

Orthopedic surgeon came to review his x rays. Hips look great and the hip sockets are deeper! His right was 50ncovered and dislocated last time a year ago and now there is full coverage. YEAH!!! The stander has helped!

We were free to go. Went to Target, out to eat, and back to RMH. We saw our friends from SPAIN!!! They were here for appts too!!!! Oh....I love those guys so much. It was awesome to be able to visit.

Yesterday, we had the wheelchair tuned up so it is ready to go for school. Had some other errands to do in Rochester and then came home this afternoon. Devin had his open house. I went to this new business in town called www.simplyentree.com and made a meal. Our moms group got together tonight to make meals to give the staff experience before they open. Went to Holly's afterwards to visit since they are home for a few days hopefully.

Today, I talked to the bus driver and teacher about school starting! The teacher and some others will be coming over tomorrow to discuss some more details about how things will go etc. I am excited.

As I am writing this, I am watching the guys out front digging post holes for our RAMP! I am so excited that the project has started! It should be so nice to be able to push Jacob in and out instead of lifting the chair into the house! YEAH!

Hope everyone is having a great week. Leave me a note! I miss hearing from all of you! Check out the pictures too :)

Love, Karla

Tuesday, August 23, 2005 10:36 PM CDT

Good evening everyone! Busy weekend it was....the Cornfest celebration happened in our local town. Saturday, Michael marched in the parade. He was so darn cute in his uniform, trying so hard not to wave at us like he was told. My boy still likes to find me in a crowd any time he performs. They sounded so awesome too :) Very proud mama here!

Saturday afternoon, my friend Tracey and I hit the mall. Me with my whopping $4.95 purchase. Tracey probably doesn't want to go shopping with me again since she spent more than me!!! Honestly, there wasn't anything that totally caught my eye! LOL It was fun playing with her twins while she looked around.

Sunday, we went to a church service at the park. They had a Jazz band leading the service. It was really cool. We ran home long enough for Jacob to take a nap, then headed back to Cornfest for carnival rides and CORN! Always have to eat the corn. Then we sat and watched a local band followed by Joe Diffie. It was an awesome concert. The weather was beautiful....it was so nice sitting there with family and friends and just enjoying ourselves. It was definitely one of those weekends that felt good, really good.

Monday night, we went to a special needs picnic. The group of wonderful people we work with from the county, threw a picnic for special needs families. They had a fish pond (which my boys cleaned house on!) a pinata, bubbles, sidewalk chalk, a clown, coloring, tattoos, all sorts of fun stuff and FOOD. It was so much fun. It felt so good to be around others who know and to also feel so normal with your children. They included Jacob in all the festivities which was so great. It was another awesome day!

Today Jacob was up early, only to go back to sleep....along with the mama! Have I told you how great these lazy days are? It's been so much fun! The nurse came today so I ran around with the boys a little. Devin had his school pictures today too.

This coming weekend will be a fun time going to the Wisconsin DeafBlind Lions Camp. We will be surrounded by other families with children similar to Jacob. We will attend some sessions, the kids will get to play, we will swim and boat and talk around the campfire and have lots of fun! It will be a nice way to end the summer before school starts on the 1st.

Next Monday also brings our next Spina Bifida Clinic. We are excited to see all his doctors and share how much farther he has come. It will be a busy day!

Hope everyone is having a great week so far! Please remember to keep Maya in your prayers.

Love, Karla

Thursday, August 18, 2005 10:22 AM CDT

UPDATE: OOPS Carolyn! Silly mommy never gave an update on Daddy. He is doing SOOOO good now that he has oxygen at night! Dad went to the doctor for his followup appt and found out that he had stopped breathing 17 times and his legs moved 83 times in the first 1 1/2 hours of his sleep study. Dad doesn't snore anymore, doesn't toss and turn. In fact, Mom's not used to all the peace and quiet! LOL

Love Jakey

Good morning! Check out the new pictures. We have had many nice days around the house. It has been overall quiet and peaceful.

Michael went with his dad this past weekend and came home on Tuesday. Today is his first official babysitting job. As I was going over all the things he needs to remember, he tells me to stop being a worrywart. LOL Oh my....my baby is growing up!!! I don't know if I am ready for that! Michael had his orientation for school::::AKA fork over a million dollars::: yesterday. They also take school pictures then. We are almost done school shopping. Just need to get a few more things when we go to Rochester on the 29th.

Devin's been playing with all his "guys" so much more now that we have his room all decorated. Him and his best buddy spend hours in there. It's fun to watch. Devin has his school pictures next week and then open house the following week.

Jacob has been making some BIG changes. He is now trying SOOO hard to feed himself. He has helped feed himself for a while now, but I am seeing much more progress in WANTING to. He is also helping put his head and arms in his shirts with little to no help, and quick too. All of Jacob's progress goes in steps. He might do it once and then not again for a long time. Then it becomes more frequent, then it becomes quicker, like his reaction time is shorter. It's awesome. He also has learned how to itch his nose! He would always make a scrunchy nose face and I'd itch it. He has learned how to do it himself :) All these things might not sound like huge things to the average person, but they are incredible to us. He is "getting it" so much more. It's really cool.

School is just around the corner....Michael and Devin start on Sept 1st and Jacob on the 6th. I am waiting to hear again from his teacher to finalize the details. It should be so exciting for him :)

Maya is in Cincinnati right now for some tests. Please keep Holly and Maya in your thoughts and prayers. You can read more about it here.
Karla

Thursday, August 11, 2005 8:34 AM CDT

I added pics of Jacob eating his ice cream cake :)

OH MY! We are SO touched by all the guestbook entries! Tons of people we've never met, but have come to learn about Jacob through caringbridge....how cool! Thank you so much for your birthday wishes! I know it isn't always easy to leave a note for the first time, so I really appreciate it!!!

Jacob has had an awesome week. We are enjoying the therapy-free week so much. I LOVE all his therapists, as does he, but it has been nice to lounge around in jammies for a while and not have to be ready for an 8 or 10 o'clock visit. The boys are done with ball games and Devin's done with summer school, so it is just the nurse and band lessons for Michael. It's been kind of like a mini vacation! LOL

Michael took babysitting class on Tuesday, so he wants the word out that he is "available." He was so proud of his card he received that we had to have it laminated on the way home. LOL He will also be marching in his first parade for Holmen's Cornfest Parade on the 20th. He's pretty excited.

Devin's been loving the superhero room. He plays in there all the time. We got all his guys sorted into separate totes, so he is having so much fun playing with them and all their weapons. He's such a character....he got some new clothes at a rummage sale last week, so he's been wearing them everyday. It's a big deal for him. On Saturday we had seen Sky High, so on the way home he had plans to wear gloves like this one "dude" on there. As soon as we walked in the door, and I mean literally as soon as we walked in the door, he found some black stretchy gloves, asked for me to cut the fingers off, and he was set. He wore them until yesterday when the one started to unravel. LOL He is so darn funny!!!

Jacob is enjoying his new toys and Barney movies. It's fun to see his reaction to something new. He got a Barney CD player with little plastic CDs and everytime Mr KnickerBocker plays he cries, so we've banned the blue CD from him. He's so funny about stuff like that!!! We also brought his real Barney CDs into the van and the first time he heard them in there and not in his room, I thought his eyes were going to pop out of his head! He was so excited! Yesterday, I was feeding him some yogurt and Jacob decided to totally take over. He grabbed the spoon, which he usually does, but he tried to even scoop up the yogurt once I showed him where it was!!! He was trying to be such a big boy!!!! The yogurt of course was everywhere, but who cares...he was trying so hard. I was still finding dried on yogurt on his arms and face when I got him dressed this morning :)

We are looking forward to the end of the month when we are going to the Wisconsin DeafBlind Lion's Family Camp for a free and fun weekend with other parents of children who are either deaf or blind. We went in March to a conference at Wisconsin Dells, so it should be fun to see everyone again. Lots of activities have been planned.
The day we get back, we will head up to Rochester to stay over for Jacob's Spina Bifida Clinic appts on Monday, the 29th. We have appts from 7-5 that day, so it will be a busy day!

Not much is planned for this weekend. We are going swimming tomorrow night, but not sure what else we will do.
Church on Sunday for sure.

Thanks once again for all the birthday wishes!!!

Love, Karla

Monday, August 8, 2005 7:15 PM CDT

HAPPY BIRTHDAY TO ME!!!! WOW! I am 3! It sure feels pretty darn good! My name was on the radio this morning for the birthday club and I won a frozen cake from Dairy Queen. We picked it up today and boy was it yummy! After I let it melt all over my highchair tray, Mommy fed some to me. I was so sticky when Mom got me out!

What a crazy 3 years it has been. We are counting our blessings on this wonderful day and asking all of you who read this to leave me a birthday message. It has been so incredible reading all the birthday messages so far! Thanks to all of you for being there for me!!!

If you didn't get a chance to read about my birthday party, go to the journal history....oh and check out my pics :)

Love, Jacob

Sunday, August 7, 2005 8:17 PM CDT

I have a BIG request! Can everyone who reads my site, please wish me a happy birthday? It would be so fun to hear from everyone who visits me!

Today was my big birthday party!!!! I had so many friends and family over...it was GREAT! Everyone played games, Mama helped me open up my presents (most were Barney things, surprise, surpise!) and I even smashed my cake. I had frosting all the way up to my elbows. There was some green frosting on my cake, and I looked like the Hulk by the time I was done. I even got a couple crumbs in my mouth and I didn't even gag! Big boy I tell ya!

Tomorrow is the big 3! It's amazing how fast this year has gone. I've made some nice changes this year for sure. I am now wearing 3T and lots of 4Ts and size 7 shoes with my AFO's on. I wear size 5 diapers too. I weigh around 30 lb and I think I am about 36 inches long. I hold up my head so good most of the time. I am working on rolling over so hard. I love to bang things to make them work. I grab faces all the time and love kisses. I cry when I am poopy or tired and mama better take care of it or else! My bubbas make me laugh so hard...they are awesome! I am no longer looking like a baby. Devin always says I look like I am 3 years old, maybe even 4. I can't wait to see what this next year has in store for me!

Here's a poem my mama wrote for me on my 1st birthday and I want to share it again!
A sweet and wonderous surprise it was from the start
A new life in our family, an amazing love in my heart.

Plans and dreams were made as most parents do,
Plans for the future, exciting and new.

Then in a single moment things started to change,
The plans for our family were soon rearranged.

For something was wrong the doctor told us one night
Your son will be different, things will never be right.

And as I heard these words I felt a tremendous grief,
How could this be happening? Complete disbelief.

And so began our journey to places unknown,
Of worries, and fears and a love which had grown,

A love so fierce and devoted, and determined to see,
A child, a miracle, be the best he could be.

And so it was on a beautiful August morn,
That an angel sent from Heaven into my heart and soul was born.

An angel indeed, I instantly knew.
For on his back was proof of where angel wings once grew.

And love him I did, with all of my heart.
My Jacob, my son, meant to be from the start.

But we soon found out that our journey would change,
And life as we knew it, would soon rearrange.

For Jacob was sick and soon we heard too,
Something was wrong with his brain, not much we could do.

Except follow our hearts, our faith, and our God,
Who sent us dear Jacob from where angels do trod.

And soon we saw that amidst all the mess,
That God was in charge, He'd take care of the rest.

For God is our anchor, amidst all the strife,
For it was God who decided to give Jacob his life.

And so our dear Jacob continues to be,
A miracle, a fighter, a true destiny.

And while things won't be easy,
We choose to believe, that God will be with us and each skill he'll achieve

Will be part of a miracle, a plan from above,
For dear Jacob was sent to teach us all about love.

Happy Birthday Jacob!

Mama's working on getting my pictures on, so check the photo page!

Love, Jacob

Thursday, August 4, 2005 7:46 AM CDT

UPDATE Pictures of the rooms are up and a lot smaller now! Darn program wasn't working right!

Good morning everyone! What a busy last few weeks! After planning on redoing the boys rooms for a year now, I finally got to it! And being the weird person that I am, I had to redo them all at once and get it done! LOL Michael's room was first. We painted circles of 4 different sizes and many bright colors all over the wall. We also gave him our bright green comforter for his bed. Jacob's room was my ebay creation...it is Barney! Surprise, surprise! If any of you just happen to have some Barney sheets laying around from your kids, let me know. I'd love to buy them! Devin's room is superheroes. One wall is red, one blue, one yellow, and one green. The red wall has the Spiderman, Incredibles, and Flash logos. The blue wall has Superman. The yellow wall is Batman with all the Batman words, like POW! BAM! etc. The green wall has the word HULK on it. I will post pictures this afternoon so make sure you check it out!!!!

Jacob graduated from Birth to 3 this week! Monday was our last day with the OT. Tuesday, we had the Early Childhood teacher, her student teacher, the PT, and the Birth to 3 coordinator here. It was a nice celebration of how far he has come! I had contacted Kristi, the coordinator, when I was still pregnant. My supervisor at Head Start where I worked, knew her well so we had contact shortly after finding out something was wrong with Jacob. It was sad to say goodbye to these wonderful group of ladies who have done SO much for our whole family. They have helped Jacob achieve so much, have helped give me ideas on working with him, and have been so much fun to visit with each week! I am going to miss having them here. We all agreed though that Jacob is definitely ready for school. It is something I just never envisioned happening :*)

Last night, we had some members of the Lions Club come over to measure for our new wheelchair ramp! They are volunteering to build a new ramp! With help from a man at Dave's work, who also helped put our swingset/climber up, they will hopefully get it done by the time Jacob starts school. He will need to be pushed out to the bus everyday in his chair. I still can't believe my boy is going to SCHOOL!

Only 4 more days until the big 3!!! We are having a party on Sunday to celebrate! Tomorrow is Dave's birthday too! So two big days in our family!

Hope everyone is having a great week! If I haven't heard from you in a while, please leave me a note. I've loved reading all your entries lately.

Love, Karla

Friday, July 29, 2005 10:54 PM CDT

ME AND MY MAMA

Being pregnant was probably the absolutely last thing on Mama's mind. Needless to say, I started out as a HUGE surprise and continue that tradition today.
The reality of having another baby didn't sink in. Mom thought maybe when she heard my heartbeat it would. NOPE. Maybe when she saw me it would. NOPE. It wasn't until she literally held me in her arms. I think Mom always had a feeling something wasn't quite right... even though everything else was going according to "normal." The day she saw me on the ultrasound, she just KNEW something was wrong with my head. It didn't look right. Then the techs were measuring and remeasuring...it was the worst sinking feeling. It was then that the rollercoaster started. Finding out something was wrong was one of the worse fears a mommy could have...you know you always say things like " I don't care as long as they are healthy" or "I'm not going to take that test because even if something was wrong, I'd love them anyway." Those things ran through Mama's mind.

The doctor scheduled appts at the big "MAYO CLINIC." Living here, Mayo has always seemed like the looming giant, the one place you go when others can't help you. It was then that Mom knew this was serious. Appts came and went, and before long, I was ready to be born. Mom went through so much for me. Amnios, blood tests, ultrasounds, and a c-section. It wasn't easy, but it didn't matter. You do what you need to do.

The day came and at last I could meet my mom. After I got all cleaned up and my back was wrapped little a little burrito, I met Mommy. I think we both fell in love right away. It was a relief to both of us to be together, if only for a few minutes before I was taken away. The hospital stay wasn't ideal with me in one hospital and Mommy in another, but she could watch me on a tv screen anytime she wanted and she did get to come visit me, so that was helpful.

Those first few weeks were tough for Mom and I. There was a lot of learning, doctor appts, and scheduling for all the extras that having me would entail. One night, I woke up crying and I just wouldn't stop....it was then that mom once again had the sinking feeling that something wasn't quite right....

It was that night, the night I turned blue and stopped breathing, the night I was rushed to CT and into the PICU that changed Mama forever....no longer was she the woman she was before.....see I was in trouble, her baby, and that is one thing no mama wants. I think all moms biggest fear is that they will lose their child...at least it was my mama's. The reality of that was slapping her in the face and it hurt. But I had some tricks up my sleeve and that stubborn mom of mine wouldn't just give in. No, she wouldn't listen to the doctors who told her I wasn't "worth" it. She didn't listen to the long blah blah blah stories how I wouldn't never be anything, do anything. All my mommy did was look at me and there was the answer....her heart was there outside of her body. So along with awesome support from Daddy, Grandma, Auntie Sandi and Uncle Bill, and all of her other friends, she pulled through.

It was there that she learned many things..... what REALLY matters in life is right in front of you. When things are out of your control, you learn about what is important, things that you can't live without, things you definitely can, and you learn humility. It was within those walls and the walls of Ronald McDonald House that my mom learned which relationships ran deep. She learned what it meant to FIGHT and if things weren't meant to be, you did everything you could have done with no regrets....

Ultimately though the greatest lesson she learned was of God's mercy and love. After Mom and Dad got the devastating news on how much brain damage I have, they walked down to the cashier's office to cash a voucher for meals. As the cashier handed Mom the money, she said there was something written on one of the bills. It said, "Whoever receives this money, may God granted mercy on their lives and He will begin to do great things through you," love Dominique, which means belonging to God. Another night, upon turning my life over to the Lord, whatever His will may be, Mom felt like she was filled with the peace of the Holy Spirit, that things were going to be okay, no matter what happened. And yet another great example of God' s love was when a doctor came in to talk to mom and upon asking his opinion on what to do, he told her, "The only one who knows Jacob's potential is God." Boy, I like that man! :)

Mom is always there for me. Our special times include snuggling, singing, rocking. I still am quite attached to Mama's hip even though I'm getting pretty heavy. I love giving her kisses and telling her so many things, but most importantly, I tell her I love you. I smile the best for mama. All she has to do is say my name and I smile. She's really good at making me laugh with all of her funny noises. If I cry, she is the best one at making me happy again. Mama and I have so much fun together. She knows me like no one else. When I need my nose scratched, she scratches it for me. When I am poopy, she knows my cry means I need to be changed. When I am tired, all I have to do is turn to Mom and she knows I am ready for a nap.

There are times that my mama hurts so bad. It's not always easy being my mama. There are many people who are extremely ignorant and rude. There are feelings Mama has that no one understands because they just aren't going through the same things. There are realizations of dreams lost. Realizations of the challenges I face. There are realizations that things can change in an instant and I could be sick again....realizations that she may some day go on without me.....

But, my mom never gives up hope for me. She dreams of things I one day may do, but also revels in the pure joy of what I can. My mama always tells me that if I never do anything more than what I am doing right now, she will still love me forever. If I need anything, Mommy's the first one to do it. If there are problems, she fixes it. If people are ignorant, she educates them. She carries her head high and loves me just the way I am. She is my #1 fan, my #1 advocate, my #1 cheerleader.

Me and my mama.... I just don't know where I'd be without her.....oh Mama of mine...thank you.

Love Jacob

Monday, July 25, 2005 10:17 PM CDT

ME AND MY DADDY

When Mom first found out she was pregnant with me, Daddy was so surprised and excited. Mom and Dad thought I was going to be a girl, but when the ultrasound showed me in all of my boyhood glory, Daddy laughed. It was a happy day....until we found out something was wrong with me. Daddy was so sad that he couldn't fix it....he wanted me to be okay and he was so worried about Mama.

Each visit Mom made to Mayo before I was born, Dad was there. Soon it came time for me to be born...it was Daddy's job to be there with me while the doctors helped Mommy. I was only a few minutes old when Dad came to me. He talked to me, told me how much he loved me, thought I was absolutely beautiful...

Time came for me to be transported to the other Mayo hospital where the NICU was. It was important to Mom that Dad be with me since she couldn't. As I got settled, I heard Dad's voice again and life was good....I had my daddy with me.

When I got so sick, it broke Dad's heart...he just couldn't imagine losing me, his little boy. Dad so wished he could spend every waking minute with me, but he had to work. Dad's heart was there with me though...I felt it.
I longed for the weekends when all of us could be together, me safe in Daddy's arms, my bubbas and Mama close by. Sunday's came too soon and once again it was just Mama and Devin and me.

Every day when Dad comes home from work, I get so excited to hear his voice. He says, "Hi JACOB!" and I smile so big. If Daddy doesn't come and talk to me, look out. I get so mad at him. I want Daddy to hold me right away too...boy he's fun to play with! I always have many stories to tell about Mommy too....he gets an ear full I tell ya!

Daddy sometimes gets sad because other guys at work talk to him about their kids and all the things they are doing. He knows it's not their fault that God made me different than their kids. It still doesn't stop the pain. Many people tell him they couldn't do what he does....that he is one strong person for doing what he does. My daddy is a very strong person for sure, but he still hurts.

Having me though has helped Daddy to look at life differently. He values everything a little more, can see the importance in all the things I can do, and truly loves me regardless of what I can't do. He brags about me to others, will start conversations with perfect strangers about me, and loves to show me off. He's learned how to give medication, hook up a feeding tube, and do therapy with me, all with one hand tied behind his back. Daddy has come closer to God and seen his blessings. He's seen how God can carry you through when you just don't think you can take another step. Oh Daddy of mine...I am so lucky to have you!

Love, Jacob

Wednesday, July 20, 2005 8:00 AM CDT

ME AND MY BUBBAS

When mommy first found out she was going to have me, Michael was very excited. Devin on the other hand didn't want to admit to anyone he was going to be a big brother. On that horrible day, April 30th, 2002, when Mommy and Daddy found out there was something wrong with me, my bubbas were there....and everyone was sad. As the reality of what was to come started sinking in, everyone prepared for what it would mean to have me in the family. It wasn't until just a few short days before I was born that Devin finally admitted I was coming....see he was laying on me and I decided to give him a big old kick in the head. That got him laughing and from there on, we've been friends. He wasn't a big brother yet though. He was "just Devin."

The day arrived when I was going to be born. Everyone packed up and stayed overnight in Rochester. Michael and Devin thought it was great fun because our Grandmas and Auntie Sandi, Uncle Bill, and cousin Matt were there too. My bubbas were in the waiting room, waiting to see me. Not long after I was born, my bubbas were able to see me. I think they fell in love with me right away. My pastor baptized me and told everyone what a special day it was because Michael and Matt were also baptized on that same day 9 years earlier!

We spent lots of time together in the hospital after I was born. Then came the day I could go home. Everyone was so excited! Our excitement didn't last long though, because just a few short weeks later, I was back in the hospital. My bubbas sure went through a lot those long 8 weeks. Poor Michael had to stay at home with dad during the week so he could go to school. Devin spent most of the time with me and Mommy, going back and forth from the Ronald McDonald House to the hospital. The things they learned in those 8 weeks....things most kids wouldn't even understand. It was definitely life changing.

Since then, there have been many doctor appts, a few more hospital stays, and countless therapy visits. All of which my bubbas take in stride. How lucky I am to have such caring and understanding bubbas. Not everyone may be as lucky.

My bubbas have learned many things from me. They have learned patience. Sometimes Mom and Dad can't help them right away because they have to help me first. I can't always do the same things as others can, so they learn how to be patient with me.

They have learned joy. My bubbas are often my best cheerleaders when I am learning something new. They marvel in everything I do and see the great things in the little things. They are the best ones to laugh at. They are so very funny in all the noises they make. Oh, how I love to play with them.....

They have learned self esteem and pride. They have learned to hold your head high, no matter what life may bring. They have learned to be proud of who I am, not what I can't do. They proudly push me through the grocery store in my wheelchair, show me off to others who ask about me, hug me in church, and know so much about me that when the doctors ask my mommy what I am doing, Mom doesn't even need to say a word.

They have learned hurt and pain. It isn't always easy seeing other babies and kids doing the things I can't. They ache for the things we've lost. They cry when days are bad. They sometimes wonder why life isn't fair.

They have learned hope. Hope for what was and what is to come. When I was in the PICU, my mommy told Michael that things were pretty serious for me, that I may die. You know what Michael's response was? "And maybe he won't."

They have learned to dream. They dream for me and hope some day I will be able to do the things I can't today. And when there are things I can't do, they help me enjoy it anyway...from spinning me in circles, to jumping up and down with me in their arms, to running with me in my wheelchair, to racing around the house with me in a laundry basket.

They have learned acceptance. I am who I am. And they love me the way I am. They have made friends with others who are different...friends with cancer, friends who have lost limbs, friends whose brains don't work the same as theirs, friends who are in wheelchairs. They have cried when some of those friends have died and remember the good times they shared. They have lived in the Ronald McDonald House and learned to play with anyone, not even notice their differences. They have loved such things so much that they wanted their birthday party in their second home....

They have learned that things are the way they are, so why not have fun if this is the life you have been given? How many kids do you know that are so comfortable in a hospital and doctors office that the first thing they want to do is take their shoes off when they arrive? Who have seen every bathroom, playroom, hallway, and know the Mayo Clinic and the hospital like the back side of their hand? Who can give directions to people who are lost in the clinic? Who can imitate the voice on the Mayo elevators to a T and make everyone else laugh? They joke with the doctors. They love the nurses. They have fun in a sometimes not so much fun place.

They have learned about love....love for one another, love for family, love from the community who has supported us, God's love. They have learned that in the hardest of times, God is there and God is good. That love is truly what rules the heart. It isn't about what we don't have, but what we DO have.

Much love to my bubbas...I am one lucky guy.

Love Jacob

Wednesday, July 13, 2005 10:18 PM CDT

The countdown has begin! It is just a little more than 3 weeks until Jakey's birthday! It is hard to believe he is going to be 3!

Devin started summer school on Monday. He is really enjoying it. This morning however, he didn't want to go because of his runny nose. I heard the story about how the school doesn't have kleenex, he didn't want to wear shorts with pockets to carry his kleenex in, blah blah blah. Boy this kid can be stubborn when he develops the 'tude! WOW. He came off the bus much happier than he went on it. THANKFULLY!

Michael spent the weekend and beginning of the week with his dad. He had a baseball game last night and will have one tomorrow too. They have had problems pulling a win off at the end...they do really good and lose by one or two points. UGH.

Jacob's had a busy week with therapy so far. Only 3 more OT and PT visits before he is the big 3! We will have the whole month of August off before starting school Sept 6th. As much as I will miss the therapists, I really am excited to start this new adventure!

Tomorrow we head to Rochester for another splint fixaroo. If you hear someone screaming, it most likely will be me. I am getting pretty sick of this.

Hope everyone's week is going great! It would be nice to hear from all of you!

Karla

Friday, July 8, 2005 10:05 PM CDT

Hello everyone! Another busy day came and went. Miss Mayafly was admitted to the hospital yesterday morning. Holly had a list of things she wanted me to bring up to her and so today we went to see her. Of course Jakey got covered in kisses. He is so funny how he recognizes people. He has his own thing for each person. Really cool.

PT came this morning too. She did some stretches on his hamstrings since they are getting tighter unfortunately, worked on sitting, laying on his tummy, and playing with some toys. He has a toy which you drop a ball into and then it plays a song. It was really interesting to watch how he first banged the ball to see if it made noise and when he realized it didn't, he grabbed it. He really seemed to enjoy the activity. He jabbered a lot during it too and has trying to find the edges of the toy, had to even lick it a little....surprise, surprise. I swear that kid should have blisters on his tongue for all the licking he does! The PT said it seems like he is exploring so much more. Probably explains the fussing he is doing. Seems like he does something for a while, then fusses like he is bored. Definitely some progress!!!

Tonight I will be sleeping with Darth Vader...Dave had a sleep study and found out he has sleep apnea. He got his CPAP machine today. Surprising how it took a doctor to tell him he had sleep apnea before he'd believe a certain woman who has told him so for hmmmm....8 years now????

We are hoping for a nice quiet weekend. We will probably see a movie or do something else fun with the boys. We've been having a very nice summer so far!

Hope everyone had a wonderful week! Drop by and leave me a note to let me know you were here!

Love, Karla

Wednesday, July 6, 2005 9:45 PM CDT

Hello everyone! Well, so much for Jacob liking the fireworks. He screamed...very LOUD. In fact, I think I sang "We are Flying in an Airplane" about a million times to keep him somewhat calmed down. Gotta love Barney...

Jacob has decided to voice his opinion very loudly lately. I think we are making a new step toward understanding. Another words, Jacob screams, Jacob thinks he gets what he wants. Doesn't always work that way however. He has this AAAH! voice that is very demanding. He seems to want to DO something. Not really sure what that always is though. I am sensing he maybe wants to move more??? Not really sure. His therapists have all said he is processing things much faster. Small steps in the right direction.

Jacob has been "talking" so much more too. Lots of "NAAA!" and "DUNG" These all vary in intonation and can sometimes sound so sweet or very demanding. He seems to need to talk when others talk to him. Again....small steps!

We are getting closer and closer to the big birthday too! WOW. Can't believe he is going to be 3!

Went to the clinic today, however this time Jacob wasn't even with! Michael had some drainage from his ear, which has never happened before, so we went in. He has had lots of issues with this ear forever. It is infected, so he is taking some meds to clear it up.

Hope everyone is having a great week!

Karla

Sunday, July 3, 2005 1:37 PM CDT

Life's never dull at our house...no siree! My mom, being her ever so graceful self decided to "help" dad with some yardwork and tripped on a hole in the yard, spraining her ankle. After sitting around for a while, Mom decided that the pain was just not going away, so we all packed up and went to the walk-in clinic. No bones were broken thankfully, just a really nasty sprain. After being in lots of pain yesterday, something finally popped in her ankle and she is able to walk better today. What a freak my mom is I tell ya!

Well, I did it. I decided to give my mom a run for her money when we were at the store the other day. I was quite insulted that she put me in a baby cart and boy I screamed at her!!! She went back and moved all her stuff to a regular cart and I sat in it with lots of help from my mama, oh and the packs of wet wipes on each side of me. I really wanted to be held, so once again I started screaming, you know the "I want my way right now!" kinda scream? The kind where everyone in the store is looking at you scream? YEP, it was me throwing a good old temper tantrum. See, if I could have, I would have thrown myself on the floor and kicked my feet or one of my mom's favorite tricks, the spaghetti noodle, you know where kids slip through their mama's arms like spaghetti? But being that I am not that good at this stuff yet, I just decided to scream. All the ladies in the pharmacy couldn't believe that I was throwing a fit because usually I am all charming when I am in there. Mom finally decided to take me out and just like that, I stopped screaming. I tell ya, she falls for it everytime! HEE HEE!

Today, Mom's going to meet her friend Tracey for some ice cream while I am sleeping. We were supposed to go out on the river in their boat yesterday, but you know Mom and her gracefulness had to screw that one up.

Hope everyone is going to have a fun 4th of July! We are planning on going down to Riverfest in La Crosse and see the fireworks! I LOVE fireworks! My bubbas can't wait to see me laughing at the fireworks. Actually, I think they like the part where my butt jiggles because I am laughing so hard the best. Silly bubbas...

Love, Jakey

Thursday, June 30, 2005 9:25 AM CDT

Geez! Are you all comatose out there??? I haven't heard from many of you for a long time!!!

We are having a great week. Little hot here, but still nice. I worked really hard for my OT on Monday. She put me in a cool rolly thing and I practiced rolling over. I think I am getting pretty good at it! Maybe someday I will roll over all by myself! I did roll a couple times once Mommy put me on my side. It's a start!

Tuesday, we went to Rochester for my splints, you know the ones Mommy is ready to throw out the window? They leave yucky marks on my knees. It makes Mommy and Daddy sad because I can't tell them it hurts because I can't feel my knees and then I get those yucky marks. We were given some new splints that make me look like I am the catcher on a baseball team. We are definitely going to bring them back. TOO big! I also got new straps on my AFO's since my feet are getting so chubby! We went to the wheelchair company and got my chair all tuned up and ready to go.

Michael and Devin had their baseball games Tuesday night. Poor Michael got hit by a baseball when he was up to bat. It hit him in the inside of his thigh. OUCHY! He has a very colorful bruise.

Yesterday, my PT came over and I was working at standing up next to a big foam roll. My saggy butt had to be held up, but I thought it was pretty cool! I worked a little harder for her this time and even got a little sassy a few times!

Well, I better get back to my Barney! I sure love being in my stander and watching Barney. He's pretty cool!

Love, Jacob

Sunday, June 26, 2005 1:25 PM CDT

JOKE FOR THE DAY!
You know you've been in the special needs world knee deep when your six year old, upon seeing a picture of an alien and flying saucer says, "Look mom! It's an AFO!" ( for those of you who don't know what an AFO is, it's the braces Jacob wears on his feet.)

Happy Sunday everyone! It has been a very nice week/weekend. Devin and I had some fun the end of the week with going to see the yo yo guy and to Herbie Fully Loaded. Very cute movie too by the way! Jacob wasn't too happy with the loud noise at the theater, so I asked them to turn it down and they did. The other cool thing about this theater is that Jacob and I get in free when he is in his wheelchair. Very cool! We also hit some rummage sales on Friday and ran into our friend Michelle who we haven't seen for a while. Yesterday, we all went bumming around getting stuff for the yard. We do not have the time that we'd like to get it all pretty looking, but it will have to do until the kids get older! The man who used to live here was a landscaper and let's just say, it is hard to keep up with that expertise! LOL Not to mention the fact that our riding lawn mower decided to crap out on us beyond any hope of fixing it and the dog dug up the flowers I just planted! UGH

Anyway....today was church. Jacob always LOVES the music. He is even starting to "sing" with. He loves to kiss me frantically too and then has to talk his jibberish loud enough for others to hear. Kinda hard for me to tell him to be quiet though when we've waited so long for him to make noises!!!!

I was having a conversation with a friend the other day about Jacob and special needs kids in general. While at a rummage sale, a woman had asked about Jacob and then proceeded to say she was sorry. While I know what she meant and didn't take offense to it, it made me think. I told her that there was no need to feel sorry, that we love Jacob just the way he is. I think sometimes people get so focused on "fixing" things when they don't match up to the ideal. And while us as a family have pushed and fought for the best things for Jacob, the thing that remains is that we love Jacob just the way he is, that if nothing were to change from the way it is today, it would be okay. While there are times we as a family feel sad about the reality of what we are facing, because believe me it the hardest things we've been through, it doesn't change the facts. Jacob is who he is. It's a pretty awesome feeling to love someone so basically. We've seen the other side of this diagnosis, and the side we are on now looks pretty darn awesome.

Love, Karla

Wednesday, June 22, 2005 9:48 AM CDT

Good morning everyone! If you still haven't heard about our wonderful Make a Wish trip to see Barney, please go to the journal history and check it out! I also have lots of pictures in there and in the photo section.

It has been a very nice week so far. Saturday, Dave and his friend Todd went to the airfest. The kids and I went to see Shark Boy and Lava Girl. I left my brain at home I think....I got up to pay for the tickets and no wallet. Yep, the bonehead that I am left it at home. I actually thought it was in the diaper bag, but nope. Luckily Holly was with and borrowed me some money to get in. Then I get out to the van only to realize I left my cellphone in the theater. It didn't get any better on Sunday. I forgot to drop something off for Holly for her trip to Rochester and didn't replace the checks in my checkbook (but at least I remembered my wallet this time!) when I knew we were going out for lunch for Father's Day! UGH. Oh well....things can't go too smoothly for us. I'd have to begin to wonder if they did! LOL

Jacob's decided it would be great fun to start waking up at 4:00 AM this whole week. He will do this really annoying, AHHHH! which can be intrepreted to mean, "Get your butt in here RIGHT NOW!" Just as you start to drift back to sleep, he shouts again just to keep you on your toes. This morning, I finally got up at 5:00 with him because it was becoming annoying, and he gave me tons of kisses and then proceeded to slap my face repeatedly, ever so lovingly of course! Sometimes it makes me laugh because part of me cheers when he does something "naughty!"

Devin has gone full blown into this pet thing. All he talks about is how he wants this or that for a pet. This week it is a duck or a guinea pig for a pet. We've already gone through rabbits, buffalos, cats, dogs, turtles, crabs, snails, moths, and crickets so far. It is enough to make a person insane I tell ya! LOL I remember when Michael did the same thing. They have it ALL worked out on how they will be able to take care of them, where they will put them, etc. Oh and as Devin said, since he doesn't make much money, I can pay for the cages and food and he'll do the rest.

Michael is spending the week with his dad. He left Saturday and may come home today or tomorrow. He really enjoys himself, but Devin sure misses him when he's gone. He doesn't quite know what to do by himself after awhile so we are on the "Can I go to..." kick. Hmmmm and it is only June...

We are getting back into therapy more this week. PT today and OT tomorrow. Jacob just isn't doing too much anymore for them. Not seeing big gains, but then again he doesn't really work that way. He's much more interested in licking his arms than trying to sit up. In fact, the goal of sitting by his 3rd birthday doesn't seem like it is going to happen. Sometimes it gets discouraging because you try and try and the progress is so slow. Yet I look at how far we've come and it puts much into perspective. He is doing much better at holding his head up in his stander though and has started to actually extend his arm enough to tap on the tray. He even played with a toy on it today. Little steps....

I've made a list of activities happening in the area this summer and also have plans for other places to go with the kids, etc. Yesterday, Devin and I went to the river to feed the ducks while the nurse was here. Neat memories for both of us. Today we are going to the library for a yo yo show. Just fun stuff together... So many summers go by without doing as much as I'd like to, so this year we are trying much harder.

Hope everyone is having a great week. Please leave a message in the guestbook or send an email if I haven't heard from you for a while!

Karla

Friday, June 17, 2005 3:29 PM CDT

Hello everyone! Check out the journal history if you haven't had a chance to hear all about my trip to Florida!
We had an awesome time. We are all still very tired this week, but after some extra snooze time each morning, we are feeling pretty good.

Monday and Tuesday, we were pretty lazy. Michael and Devin started baseball and t-ball that night. It was fun watching them play. Wednesday, my PT came and played with me. I worked pretty hard for her.

Thursday, my bubbas had to go to Dr. Brumm's for their physicals. Michael and Devin were fighting all the way to the doctor's and said they didn't want to sit by each other. Kinda hard in those small exam rooms! My bubbas are both very healthy. Devin just had to get some allergy meds for all the sneezin' and itchin' he does.

Mommy had a Family Advisory Council meeting in Rochester last night, so she dropped me and Devin off at Auntie Holly's to play. When Daddy got off work, he picked Devin up so he could go to his t-ball game and I got to stay with Holly and Maya until Mommy came back. Michael also had a baseball game last night too, so it was a busy day!

We are not doing much today. Daddy is getting excited to see the Thunderbirds at the Airfest tomorrow. He likes that kind of thing. Mom would prefer not to stand out in the heat and look up at the sky. I think I'd have to agree with her. I think we will just have to go have some fun of our own!

Bubba Devin said the coolest thing the other day...He told Mommy that he always wanted a baby like me, that he loves having a brother like me...besides baby's with problems are so CUTE! He sure is a funny kid!

Thanks to Linda for the nice entry in my journal. Even though it isn't always easy to take care of me, my mommy and daddy and bubbas just love me so much! That is what makes it look so easy...love is an amazing thing....

Hope everyone has a great weekend! Remember to check out the journal history and my picture page if you haven't heard about my trip to Florida!

Love Jacob

Monday, June 13, 2005 9:56 PM CDT

UPDATE: Added more pictures!!!

Monday, June 6th
We got up very early to get ready for our trip! The limo arrived at 5:00 AM. Devin saw it parked down the road, went outside and started screaming, "We're over here!" I am sure he was just waiting there because he wasn't scheduled to pick us up until 5:15. Devin came back into the house and told all of us to hurry up! The limo ride was awesome. The boys even got to play some Nintendo on the way.

When we got to the airport, we checked in and waited for the boarding call.

The plane from La Crosse was smaller, but everyone fit pretty comfortably. Dave is the only one of us who has flown before and he only flew once, so this was a new experience for all of us. Jacob didn't mind the flight at all. Before we knew it, we were in Minneapolis. We had a couple hours to wait there, so we got some breakfast, I talked to my sister Sandi and Holly, and then found our gate. There were 6 Make a Wish families all together! Quite unusual I thought. Jacob decided to puke on me while we were waiting to board. A man next to us got up and left. LOL Once we got on, everyone got situated. Dave and Jacob sat behind Michael, Devin and I. Devin got the window seat since Michael had it from La Crosse.

The flight felt long. The boys did keep themselves busy with their "stuff." Dave fed Jacob and once again, he threw up.

Once we landed, we were met by a lady from Give Kids the World. We were taken to baggage claim and to the Avis car rental. We got a nice van to drive for the week. Everyone was settled, bags packed into the van, and we were off to Give Kids the World.

We checked in, walked around the village for a while, and then went swimming for Shamu's Beach Party. I left the boys with Dave in the pool while I went to the orientation.

It was there that we got our tickets for the theme parks.

Once orientation was done, we went to the Polynesian hotel where we stayed for the first two days. The hotel was beautiful. This is a view from our deck.

We were given leis and then proceeded to find our room. The hotel has many separate buildings. After a long walk, we finally got to our room. We were all beyond tired. Jacob was still throwing up everytime I gave him Pediasure. The supply company gave us pretty princess pullups instead of diapers, they gave us the wrong kind of stroller for Devin, and we were just toooooo tired to even try to figure it out.

Jacob decided to throw up over and over. His throat was so swollen from his virus that he was having a hard time breathing. Then he'd choke on his saliva and vomit and oh my....I spent most of the night trying to get him settled. After talking to the pediatrician back in La Crosse, we decided to stop the Pediasure and switch to Pedialyte. On top of being tired from the flight, Dave and I were so scared for Jacob. We hadn't seen him that sick forever...We questioned bringing him into the hospital. Jacob finally settled down and we fell asleep about 2:30 AM.

Tuesday, June 7th
We woke up and started deciding what to do. Jacob looked a little better and hadn't thrown up anymore overnight.

We decided to wait for Barney since we wanted him feeling better for that. We headed for the Magic Kingdom. We enjoyed many rides and attractions there...Buzz Lightyear, Tomorrowland Speedway, Splash Mountain, Country Bears, Pirates of the Caribbean, Aladdin's Magic Carpet, Tiki Birds, Dumbo, Many Adventures of Winnie the Pooh, It's a Small World, Mad Hatter's Tea Party, Snow White's Scary Adventures, Mickey's PhilharMagic, Goofy's Barnstormer, and Haunted Mansion. Some rides we were able to do all together, others just the boys went on. We even got to witness Cinderella being crowned Princess and had many opportunities to meet the characters.

We enjoyed all the magic of just simply looking around. It is so hard to even explain how breathtaking it is! Plus, one of the best benefits was being able to go first in line and first for meeting characters. That part was very awesome. The night ended with the parade, which was very magical as well.

Wednesday, June 8th
By last night, we were getting some smiles out of Jacob, so we decided to go to Universal today.

All I can say is WOW! We were totally taken back by the sights and sounds. It truly was our favorite park. We headed for Barney first. On the way, we met lots of characters. Barney's show started outside with Mr Peekaboo singing and dancing. The doors opened and we were off! We got front row seats, with the stage just a few feet away from us. The Barney music started, the room went dark and then BAM! Out jumped Barney RIGHT in front of us! Jacob was smiling like I have NEVER seen him smile before. He was absolutely giddy! The other characters, BJ and Baby Bop, also came out and they sang some of their classics.

Jacob was just absolutely enthralled. It was so awesome! I was crying just watching him. It was a very emotional time in lots of ways...when you have a child who just can't enjoy things in the way others do so naturally...all I can say is I KNEW he enjoyed it. I didn't just THINK he did, I could totally see he was so excited. Yeah, Jacob smiles a lot and everything, but this was SO much more. So here sits Mama crying during Barney. Such a sight I am sure.

Afterwards, Barney came out to see Jacob, along with BJ. Baby Bop was backstage drinking her milk. LOL We were given so much personal time and attention. It was awesome. Of course the lady trying to take pictures with our camera, didn't do so hot, but we do have an okay shot of all of us.

The rest of the day, we totally enjoyed the rides. Back to the Future,
Men in Black, Shrek 4-D, Seuss Landing, Jaws, Jimmy Neutron, and Spiderman were our favorites.

We still are thinking about that Spiderman ride!!!! OH MY was that cool! WOW.

Men in Black came in a very close second. We also spent time in the Woody Woodpecker Kid Zone with a roller coaster, sprinklers, and other cool play equipment. The boys also got soaked on Ripsaw Falls at the end of the day. It was overall our very favorite day. We were treated SO special too by everyone that worked there. They were so good at getting us to the front of all lines, first for characters, and made sure we were all doing well and having a good time.

Once we got back from Universal, we headed over to Give Kids the World for our first night in the villa.

It was incredible! We had a kitchen/dining room area, a large living room, kids bedroom with a huge bathroom and jacuzzi, and our bedroom and bathroom. They also had a washer and dryer. Everything is taken care of for you, right down to pop in the fridge, snacks, and also laundry detergent and fabric softener. No need for anything. We had to try out the jacuzzi right away and then turned in for the night.

Thursday, June 9th
Today was the day Mickey and Minnie came to Give Kids the World!

We got pictures taken with them and then headed for Animal Kingdom, only to get totally soaked, starting in the parking lot! Despite the rain, we had fun watching the Lion King and It's Tough to be a Bug. The safari was awesome, but because of the rain, we didn't get the animals coming right up to the jeep like they normally do. Dinoland was fun with a bone dig and other dinosaur rides.

The highlight though was going on the Kali River Rapids and getting totally soaked! I went down with my back to the rapids, so it literally came up over my head! So much for wearing a poncho! The boys laughed about that for a very long time!

That night, we headed back to the village for Santa Claus! Yes, Santa came for a visit, along with arts and crafts and presents. It was lots of fun. We had to have our daily dose of ice cream as well. The village has an ice cream parlor that is to die for...all you can eat, any combination of ice cream, slushy, popsicle, etc. that you can think of!

They also have an awesome kitchen called the Gingerbread House where we ate breakfast and supper, and a pizza delivery right on site.

Friday, June 10th

Barney, Baby Bop, and BJ were at the castle this morning, so we had to hurry on over there!!!

Give Kids the World has an awesome castle with a game room and merry go round attached, along with a cool castle atmosphere.

Jacob was once again in love with his characters. Even though they do not talk, I truly believe he could see them enough to know who they were. He was beaming ear to ear. They spent a lot of time hugging and kissing him. We stayed there to watch other kids visit with them and then went up one more time to get another Barney fix.

We went to Sea World today.

It was a little rainy, but not too bad. We first went to the dolphins where we were brought over to the reserved area to feed them. The trainer also got the dolphin to get up on the wall so we could all pet her! It was amazing!

We loved the sea lion and sea otters show. They were absolutely hilarious!

Before the show, there was a mime there who was making fun of everyone as they walked past. We laughed so hard, we hurt. We also saw the sharks, the whales, Shamu show of course, penguins, and lots of other fish.

The boys enjoyed the Journey to Atlantis water ride the most. Jacob and I stayed at the bottom and watched people come down. Jacob laughed so hard as he got splashed everytime someone came down! He was totally soaked by the time we left, but he had SO much fun!

The mayor of Give Kids the World is a giant rabbit. We signed up for Mayor Clayton to come tuck the boys into bed. BOY were they surprised when this giant rabbit came to their bedroom! He covered Devin up with the blankets, fluffed his pillow, only to start hitting him with it! Devin was laughing so hard! Then he kissed Jakey goodnight as he wa snuggled in with Michael. We moved Jakey so Michael could get tucked in too. He also hit him with his pillow a few times. It was just so cute!

Saturday, June 11th
Today was the big MGM Studios day. They had the Star Wars Weekend going on there. We got to see the Star Wars parade, met Princess Lea, Chewy, Darth Vader, and Darth Maul.

Devin and Michael were chosen for the Jedi Training and got up on stage with the Jedi Master, with their robes on of course, and practiced their moves with a light saber.

The Storm Troopers came out, followed by Darth Maul and Darth Vader. Michael was the first to fight Darth Vader. It started raining, so they had to quit, which made Devin sad because he never got to fight. They did get a Star Wars figurine though, along with a Jedi Training certificate. It was the highlight of their day!

We went on to see more shows and attractions. We went on the Great Movie Ride, the Backlot Tour, saw The Little Mermaid and Beauty and the Beast shows, and went to Playhouse Disney and saw Bear in the Big Blue House, Jo Jo's Circus, and Stanley. In the Animation Studio, we saw The Incredibles, which Devin was absolutely ECSTATIC over. The lady told him that Dash wasn't there because he was too busy running around and Violet was in school.

Michael got to learn how to draw Pooh, which he thought was cool. The boys also went on the Tower of Terror. Dave and Michael went first, then Devin decided to go. Needless to say, he didn't like it. He says that was the worst part of his trip. It was so packed with people there for Star Wars and since it was also raining, it was hard to do everything we wanted to do like Indiana Jones, Muppets 3-D, Honey I Shrunk the Kids, and the cool restaurants there, but we felt that overall we had an awesome time. The night ended with the Fantasmic show. That is just absolutely UNREAL. No words can describe it. The fireworks, the lights, unreal.

Sunday, June 12th

We were considering going back to Universal today, but once we felt the heat and saw how much time packing was taking, we decided to just hang out at Give Kids the World until our flight. The boys loved playing in the castle, eating ice cream, riding on the train and merry go round, and all the arcade games they have.

What an amazing experience...nothing that you can ever put into words. Everything was taken care of for us, from the reservations, to the car rental, to Jacob's supplies, to the presents for the kids, to the food, to the money for our expenses, to the directions to each park...it was awesome. We were able to relax and forget about stuff for awhile. To feel normal, to actually feel like a VIP going to the front of the line, meeting the characters first, it was incredible. We were sad to see our vacation come to an end. We headed for the airport, returned the van, and got our boarding passes. We went through security and had Jacob and his wheelchair frisked. Quite the experience! LOL The man saw me fanning myself and said not to worry it was routine. Little did he know I wasn't fanning myself because I was worried about what they were doing....DANG it is HOT down there!!!! Nothing against you southerners, but I don't know how you live in that heat! I have never sweat so much in my whole life! The other thing we found "interesting" is the way people talk down there! We really had to listen close to what they were saying because their accents are so thick. And the "y'alls" were too funny! The boys got a kick out of that one!

The flight from Orlando to Minneapolis took forever it felt. We were also late getting in, so we had to hustle it from one side of the airport to the other in just a few minutes. In fact, they were calling our names on the the loud speaker just as we got to the gate! LOL We got settled into the smallest airplane ever and Jacob decided it would be fun to cry. Then, I was trying to get his meds ready and the stewardess knocked my arm and launched Topamax all over the airplane! What a sight we were! It amazes me how quickly you can fly from Minneapolis to La Crosse. The boys loved the baggage claim. They did it all! LOL The limo driver met us there and took us home, helping us get our luggage in and out. Holly had left us breakfast and dinner for us for today so I didn't have to worry about groceries. We spent some time unwinding and went to bed. Michael, Devin and I slept until 10 AM, Jacob until 11:30, while poor Dave had to be at work by 7:00. It took me most of the day to put things away. I still have some things I have to do, but overall we are settled back at home. Our trip is definitely one we will remember always....

Karla

Friday, June 10, 2005 10:28 PM CDT

Good evening everyone! It is Holly again, I just talked to Karla and it sounds like they are having a wonderful time. Jakey is back to his smiley self and having a ball. She said he smiles anytime you ask him if he saw Barney and he has seen him a couple of times. They are loving Give Kids the World and all the parks. Tomorrow they are going to MGM and then returning home on Sunday. I'm going to let her give all the details of the trip, but I know today they went to Sea World and had a chance to feed the sharks and dolphins. Yesterday they went to the Animal Kingdom and despite the rain they had a good time there too. The day before was Universal and that was their big day with Barney and Devin loved the Spiderman ride. They don't get home until late on Sunday and I'm sure they'd be thrilled to see lots of welcome home messages in the guestbook. Maybe it will motivate her to get pictures up for us sooner, LOL!!

Holly

Tuesday, June 7, 2005 9:55 PM CDT

Wednesday UPDATE!!!!
Karla called this afternoon and Jacob is starting to feel much better. He went to see Barney today and was so excited when he came out on stage. She said it was the biggest smile he's ever had (who knew they could get any bigger?!?!). They've moved to Give Kids the World for the rest of the week instead of the hotel which will be a wonderful experience.

Hi everyone! This is Holly. I just heard from Karla and they arrived safe and sound yesterday in Orlando. Jacob still isn't doing very well and had a really bad night last night. His tummy is just not cooperating and he's not his cheery little self. Please send some prayers he perks up before his big day with Barney. She said he is a touch better this evening and they were able to get him to smile. He's been getting lots of pedialyte, but not much food at this point.

They are still having a great time and had a fun day at the Magic Kingdom today and parade this evening. The boys all enjoyed Give Kids the World, but I'll leave all the details of that up to Karla when she gets back.

Thanks for checking up on them I know they appreciate all the thoughts and prayers for their safety and Jakey's health on their trip.

Holly

Saturday, June 4, 2005 10:10 PM CDT

Hello everyone! I pretty much feel like crap. At some points, I will be happy and even try to laugh, but overall, I am sick. My throat hurts and there is yucky in between my nose and throat. I snore when I breath. Just like Devin did...UGH. When I do laugh, I have such a pained look on my face. It's funny, but boy it hurts to laugh. The Motrin seems to be working for the most part, so I am going to be better tomorrow...Mom can wish right? In the wee hours of the morning, I fussed for 3 hours. Dad finally snuggled with me and I went right to sleep. Daddy is rubbing it in to Mom that I just wanted him. Mom believes it was because he turned the lamp on. Silly guys.

Tomorrow, we have church and a nice lazy afternoon hopefully with it. We are all going to bed early since we have to get up so early. We have everything packed and ready to go!

Jacob

Friday, June 3, 2005 8:04 AM CDT

Good Morning! 3 DAYS! WOW This week has gone fast! Today is the last day of school for my bubbas. Mom and I are going to bring Michael McDonald's for lunch. They get out early today, so we will bring him home too.

Well, it happened....I got Devin's crud. I started getting a fever yesterday around noon. Mommy took me to the doctor just to make sure it wasn't a UTI or ear infection. Everything looks good, but I have the same red throat like Devin did and feel sore. I was kinda crabby last night in my sleep, but with some Motrin I feel better. I don't have time to be sick for my trip, so please keep the prayers coming for a quick recovery! Thankfully it happened now. We are also hoping no one else gets it!!!

Yesterday morning, we had my IEP meeting. I think my new school is going to be FABULOUS! My teacher is so cool and made me laugh and laugh, just like last time. I think everyone is ready for a new challenge and are excited for me to come in Sept! At our meeting, there was the Director of Pupil Services from the school district, the school psychologist, OT, PT, adaptive PE, speech, my vision therapist and the lady who will be replacing her in the fall, the school nurse, my teacher and her assistant, my Family Support worker from the county, and my Birth to Three coordinator. WOW!

Hope everyone is having a great day! Leave me a note to let me know you were here!

Love, Jakey

Wednesday, June 1, 2005 7:21 AM CDT

Good Morning! My wishgranters stopped by last night for the last visit before my trip. All I can say is WOW!!! We got so many gifts again! We got Mickey, Donald, and Goofy plush toys, Barney, Baby Bop and BJ, a Bear in the Big Blue House backpack, Barney DVD, Make a Wish beach towel, Barney party favors, color books, crayons, Disney shirts, Make a Wish shirt and button, Harley Davidson sweatshirt, Genie hat, camera, calling card, autograph book, Disney's Wishes CD, balloons, and a cake from Cold Stone Creamery. Plus we got our airline tickets and spending money. It should be so awesome! We got our itinerary with everything, and I mean everything, explained to us SO nicely! We got lots of tips on travelling, things to remember and what to take and not take with, a Disney guide to your trip and all the parks, etc, etc!!! Our family is in ABSOLUTE AWE over what Make a Wish does for a family....no words can ever, ever explain it. Here is a picture of me and my wishgranters from our visit last night.

Our day was very, very busy yesterday! Sue, my teacher, came first. I didn't really want to play with her toys. I did like when she read me a story though. Mom had a visit from a friend from church, then my OT came. I showed off my stander for her. She thought it was pretty cool! My nurse came next and Mom went to run some errands for our trip. After a very long nap, I woke up and Make a Wish came just a few minutes later! It was a pretty cool day. Today, we are going to bring Devin Burger King for lunch. They have Star Wars toys...see my bubba bases if he wants McDonalds or Burger King on the toy. Sad, sad, sad I know...LOL

Hope everyone has a super great day!!!

Love Jakey

Tuesday, May 31, 2005 6:25 AM CDT

Good Morning! It's a beautiful sunny day here! I am busy playing my piano. I've been really bossy here lately. If someone doesn't pick me up when I want them to or if I am done with something, look out. I have mastered the fine art of getting my way. I have this really loud "AWWWW!!!!" which means "get your butt in here right now and pay attention to me." I've been making some exciting new noises when I talk and I am very loud. When Michael and Devin play by me and make funny noises, I've gotten really loud! Mom and Dad look at each other and say, "What the heck was THAT?!?!?" I think I am surprising them with all my talking!

WE had a nice quiet weekend. On Saturday, us boys got our haircut. Mom got hers cut earlier in the week. Michael went first and the lady even put a few highlights in his hair. He looks pretty cool! Devin got his cut next, then me. I love getting my haircut. I am such a good boy! I look mighty spiffy with my curls. My hair was getting really long! Daddy went last.

My trip is coming up so fast! To think next week at this time we will be in Florida....fun and sun BABY! Everything is ready to go, just a few more things to pack. Our wish granters are coming tonight for their last visit. I'll update on our visit tomorrow!

Love, Jacob

Friday, May 27, 2005 10:21 PM CDT

Another week gone. Wow the time flies! Devin has been home the last two days from school. He has a virus that leads to high fever and headaches. I want everyone to keep all of us in your prayers that we don't get it too, especially Jakey, just before our trip. Devin likes to share his germs, so hopefully we can avoid it.

I realized I haven't done a good Jakey update for a while on the things he likes, can do, etc. Jacob is wearing 3T's and some 4T's. The 2T's are gone for the most part, except for a few outfits that are a little bigger. He wears a size 5 diaper. He wears a size 6 shoe without his AFO's and a size 7 with them on. In La Crosse without clothes on he weighed 28 lbs 10 oz. and at Mayo with clothes on he is 30 lb. He is around 36 inches tall. Devin was 30 lb and 36 inches at his 3 year check up, so Jacob has done some serious catching up and is even bigger than Devin was at this age. Jacob is wearing the clothes Devin wore then summer Jacob was born...that just seems so wrong to me...where did my baby go??? Especially when he was so little for so long!

Jacob is still eating just baby food, yogurt and pudding. No desire to go beyond that. He gags horribly when we try anything else. He has licked a sucker and popsicle too. He has all but 2 of his molars, so hopefully one day he will realize he can use those teeth to chew! Whenever you put him in his highchair, he starts going, "AW! AW! AW!" over and over. He knows it is time to eat!

Jacob is sitting by himself in a frogged over position. He can sit up straight with guidance. He tries to push with his left hand for leverage. Most times he is too busy licking his legs to care about sitting up. If he sits against you, he needs no support at all. His head support is so much better. We are about 80 % there. He will roll with some coaching, but doesn't roll continuously across the floor. He does like laying on the floor though and gets so excited that he straightens out his body or he'll raise his hands way above his head. The stander is a huge hit, which is made even better by Barney entertaining him everytime he is in it.

Jacob loves his Sparkling Symphony piano. In fact, he spends a lot of time playing it. He bangs so hard on the keys. If he doesn't like that song, he will keep hitting it until he finds one he likes. Not too often does he let a full song play...he wants to bang it again! He isn't wanting to hold toys very much anymore, nor does he feel the need to chew on them. Usually he checks it out a little when I put it in his hand and then drops it. He tends to like things that he can bang on instead. It is often difficult to have him play with stuff because he doesn't see well and doesn't search things out on his own. I have to give him the toy, and if he drops it, he won't try to find it again, so I have to hand it to him again. Even other toys don't entertain him for long or he just doesn't know how to do them or that they are even there. The piano is definitely his favorite.

Jacob shines socially. He is always smiling and is so happy. He loves to grab my face and kiss me. His bottom lip puckers up and he has to talk between his teeth in this loving little whisper. Then he will kiss me. It is hilarious. He acts like he hasn't seen me in forever each time I pick him up. He says I love you, but his favorite word is DUNG. Over and over we hear DUNG. Sometimes it is GEE DUNG. Other times it is AW DUNG but dung is definitely a very important word in his vocabulary. I just wish I knew what it meant! LOL We hear NA! a lot too. He turns his tongue sideways when he says it. It must feel cool. He will also say, "HUH?" very appropriately too! He is getting so much better at repeating the sounds you say to him. I ask him to say DUNG and he repeats it. Same with NA and HUH too. Very cool. The other day I said I love you too! and I swear, he repeated it. It sounded like "I love you DUNG!" kinda slurred together. He's just too funny.

Jacob still thinks burping, farting, sneezing, and any other weird noise the boys can make is absolutely hilarious. His favorite sound is plastic bags rustling. He is hysterical everytime I have to change the garbage bag in his room. He has started to fake laugh and making himself laugh when he wants attention. Like if he farts, he laughs to get Michael or Devin to say, "What did you do?" The boys are definitely his favorite playthings. They are so good to him and he just sucks up all the attention.

This coming week will be busy with therapy, his IEP, end of school happenings, and our last Make a Wish visit. I also have to get our stuff packed and make sure I have all the meds ordered. We are getting so excited to go to Florida!

Hope everyone has a great weekend!

Karla

Wednesday, May 25, 2005 3:10 PM CDT

Hello everyone! We have been doing okay here. Busy getting ready for our big Make a Wish trip in just 12 days! Hard to believe the time is finely here. We are waiting to hear from our wish granters one more time. They will then come out with the tickets, itinerary, traveler's checks, etc. It's been nice to talk with my sister Sandi and Holly about favorite sites and also some good traveling tips. Anyone else have ideas or suggestions, let me know!

We went to St Mary's on Monday to pick up Jacob's new stander. Check out his pictures. We also spent time with Holly since Maya had surgery on Monday. You'll have to check out Jacob wearing Maya's glasses while she was in surgery. We were joking saying, " I can see! I can see!" Okay, some of you may think that is just wrong, but you have to have a sense of humor in this otherwise stressful life! That night, we were able to meet another Caringbridge family, the Tidds. Robin and Jaxon are just too cute! It was so much fun to visit and laugh.

Being at St Mary's made me think about our time there. Not all times were bad. We were able to meet other families, some awesome nurses and doctors, the chaplain, and social workers. When I looked back at Jacob's journal, I started it because it was easier to keep everyone updated than doing emails. So when I started his journal, I just started writing from where I last left off. Little did I know that there would be so many more people following Jakey's life. It started as a way to keep family and friends at home updated about his progress and the next thing I know, we have met many more people along the way! I thought it would be kinda fun to tell you about what some of you "missed."

When Jacob was born, we had family and friends at the hospital with us for support. Jacob was baptized by our pastor who came to Rochester just for the event. After the baptism, which was special because Michael and my nephew Matt share the same baptismal date with Jacob, he was transported to St. Mary's to the NICU. That is when we got to meet Dr Nickels. She was the resident on the receiving end and from that moment on, we've been connected and stay in touch with each other. I was still at Methodist where Jacob was born. I could watch Jacob on the tv in my room. It was hard to be separated, yet I knew it was something that had to be done. Dave went to be with Jacob so he would hear a familiar voice. I was able to visit each day, and four days later, I was discharged and went to the Ronald McDonald House. My mom stayed with us and my sister and her family were also still in town through the weekend. Jacob had his surgery to close his opening and place a shunt. It worked for a few days and then had to be redone since his tummy wasn't absorbing the fluid. We went back to surgery for a different shunt. Not long after, he was getting ready to go home. We spent 19 days in the NICU.

I honestly don't remember much about those early days, since we were so busy learning about our baby and running to the doctor all the time! We were able to get his picture taken before he decided to have an extended stay at Club Med. At six weeks old, he got so sick at 1:00 in the morning. He had a fever, crying, lethargic. It was awful. We went to our hospital in town where they diagnosed his UTI and sent us home on amoxicillin. Not long after coming home at 5 AM, both Jacob and I crashed. At 10 AM I woke up and tried to feed him, but he wouldn't eat. It was then I called the neurosurgeon and we went to St Mary's ER where we stayed all day until we finally got a room around dinnertime. It was then we were told he had meningitis. That night as we were finally starting to fall asleep, he stopped breathing many times. Nothing like seeing your baby turn blue :*( Dave meanwhile is snoring on the cot. Yeah...about 10 doctors in the room and there's Dave. LOL He was rushed to CT and it was then I realized how serious this was as we couldn't keep up with them running down the hall. I went into shock I think. He was then brought to the PICU where they intubated him. I can still remember watching the doctor so calmly look at Jacob, look at the monitor, give orders, and repeat the same thing. I wanted to scream for someone to get excited!! Dave and I slept on the nice "comfy" couch for all of 10 minutes I think. We called family and they came instantly. It was awful. We were informed of his brain condition on top of everything else. It was quite the blow. BUT I never gave up on him and we just loved every second we had with him. If he was only going to be with us a short time, I wanted those memories to also be happy. We had footprints and handprints molded. We had memories made of him. We were told he wasn't going to make it, he was too sick. But one doctor told us that the only one who knew Jacob's potential was God...and that is what we clung to. Then, slowly but surely, he started coming around. The ventilator was gone, he was able to breathe on his own again, he went right to nursing, started getting stronger. After 5 weeks in the PICU, he went to surgery for his new shunt. It is there that Jacob's journal began! If you are curious, you can go read some of the entries from then.

I have to say though, in all the sadness there were good memories. Devin used to wear his Spiderman costume all the time. He'd sling webs at anyone who came close. He would also wear his Power Ranger costume. One day, our nurse Tom came to Devin and told him he was the blue Power Ranger (Tom was wearing a blue flight suit.) Devin told him, "No you're not! Where is your helmet?" Tom went out of the room and the next thing we see is Tom with his flight helmet under his arm, walking down the hall. Devin was laughing so hard, he couldn't even make a sound. We laughed and laughed til we cried. It was awesome. From that day on, he WAS the blue Power Ranger. Then there was Elisa, who Devin was in love with, my fellow nursing moms, Laura and Catherine. Our nurse Missy who was with us many times. Scott, our other cool male nurse, who more than once passed me the Kleenex and helped me deal with "issues" with certain people. Marnie the nurse who gave Jacob the spa treatment...all he was missing were the cucumbers on his eyes. There are just so many I remember and who have changed my life. There were lots of good memories too....oh and the Ronald McDonald House. I can't even begin to tell all of you about the awesome people I met. In fact, that is where I met Holly.

This has gotten much longer than I ever intended, but it is good to remember where we've come from and look to the future to where we are going. Jacob has come so far. He's developing an attitude of how, where, and when he wants things. He's verbalizing so much more. And the kisses and loves, I can't tell you how sweet they are! Next week, we have Jacob IEP to start preschool in the fall...I really NEVER thought we'd see that day.

Love, Karla

Saturday, May 21, 2005 2:52 PM CDT

Hello everyone! It's me, Jakey. I thought I'd better update before everyone started worrying about me. I am doing really good. A little crabby today, but Mom will just have to get over it. My cold is gone, my UTI is gone, and I am a happy camper! Now we just have to work on staying healthy through my wish trip!

Monday, I had my PT and OT come over. I worked kinda hard. Tuesday, my teacher came over. I was being a little stubborn for Sue. After she left, Mom and I went out for breakfast with a lady from church, then we went out for lunch with Mommy's assistant she had when she used to work! Kimberly lives in Alaska now. She was home for a visit. It was so nice to visit with her again. Mom said it was just like she saw her yesterday...funny how old friends are like that.

On Thursday, I went to see Dr. Brumm. The nurse cathed me and told us the good news that my UTI is gone. We went back to visit with Auntie Holly and Maya and they asked us if we wanted to go to Rochester with them. It was fun going with when it wasn't my turn to see the doctors. I did get to see my nurse Deb and my Dr. Nickels. They are so awesome. I love them very much! Thursday night, our family was asked to speak at a style show fundraiser for Children's Miracle Network.

Friday, Holly babysat me so Mom could go with Devin on his field trip. I sat in Maya's bed, snuggling with her. She loves fixing my curly hair. She is also getting really good at making me laugh. Maya was transferred to Mayo last night for her surgery on Monday. We will be going to Mayo on Monday to pick up my new stander, so I will get to make sure my Maya is doing good after her surgery.

Check out the pictures Mommy put on here if you haven't seen them already. Also, keep an eye on my Barney counter! I can't wait to go on my wish trip!

Hope everyone has an awesome weekend! Please leave me a note, especially if you haven't for a long time.

Love, Jacob

Monday, May 16, 2005 10:08 PM CDT

NEW PICTURES ADDED 5/18/05!

This was emailed to me and I thought I'd share....

Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have given
throughout the pages of time. She says it doesn't matter whether it's a boy
or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin. Every mother wants a baby so gorgeous that
people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on page 57,
column two). Every mother wants a baby that can see, hear, run, jump and
fire neurons by the billions. She wants a kid that can smack the ball out of
the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that
didn't fuse, a missing chromosome or a palette that didn't close. Most of
those mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the
fourth grade when you didn't see the kick ball coming and it knocked the
wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even
years later, take him in for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as they bear the brunt of
devastating news. It can't be possible! That doesn't run in our family. Can
this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles with nary an ounce of
flab or fat, virtual powerhouses of strength with lungs and limbs working in
perfect harmony. Then the athlete walks over to a tote bag, rustles through
the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third
knee surgery, or on a trip home from an echo cardiogram, there's no such
thing as a perfect body. Every body will bear something at some time or
another. Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen, quietly treated with trips to the doctor, medication or
surgery. The health problems our children have experienced have been minimal
and manageable, so I watch with keen interest and great admiration the
mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out
of a wheelchair 20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred specialists yammering
in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned
souls explaining how God is at work when you've occasionally questioned if
God is on strike. I even wonder how you endure schmaltzy pieces like this
one -- saluting you, painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer for this, you
didn't jump up and down in the motherhood line yelling, "Choose me, God.
Choose me! I've got what it takes." You're a woman who doesn't have time to
step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the
strength of a draft horse while holding onto the delicacy of a daffodil. You
have a heart that melts like chocolate in a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can be warm
and tender one minute, and when circumstances require, intense and
aggressive the next. You are the mother, advocate and protector of a child
with a disability. You're a neighbor, a friend, a stranger I pass at the
mall. You're the woman I sit next to at church, my cousin and my
sister-in-law. You're a woman who wanted ten fingers and ten toes, and got
something more. You're a wonder.

Sunday, May 15, 2005 10:44 PM CDT

Happy 12th birthday Michael!!! If someone knows where the time went, please let me know! I was reminded this weekend that next year he will be a teenager, which is something I hadn't even THOUGHT about! Oh my...I am feeling old! I told Michael that he needs to stop this growing up business right now. I don't want anymore of it. LOL Michael has been a joy from the day he was born. Very challenging at times, very active all the time, with an imagination like none I have ever seen before. He sees things in ways I have never thought of, is always curious and trying to figure things out. These can be not so good traits at times (lol) but overall, they are the wonderful things that make Michael who he is. When Devin was born, he quickly took the role of big brother very seriously. He has been my supporter from the minute we received the call saying something was wrong with Jacob and has on many occasions shown and reminded me of God's plan in regards to Jacob. He has had to withstand more than one child probably ever should have to, but has come out of it with a stronger sense of what really matters in life and has stood up for what he feels is right. Happy Birthday, my sunshine!

We had a nice weekend away. We went camping at Jellystone Park for the Children's Miracle Network fundraiser with Jacob's Godparents, Kevin and Amy and their boys. Saturday, they had a kid's carnival with games and prizes, face painting, etc. We all went on a train ride, played in the game room, watched Karaoke for a while, and had fun around the campfire. It was colder than cold and very rainy at times, but it was fun. We came back today and while Devin and Daddy watched movies together, I took Michael to see his dad, and Jacob and I went to visit Holly and Maya in the hospital.

The last week has brought many emotions to the surface again for me. I sometimes wonder if this will ever get "easier." I know in many ways it has. I think about the medical stuff and know I have come far in my knowledge of what is really no big deal, how to administer this or that medication, changing feeding tubes, having to do this or that test...the things that used to make me nervous or upset, sometimes even make me want to pass out, that has become easier in many ways. The actual care of Jacob and knowing who Jacob is has become a lot easier. But seeing what I am missing with Jacob isn't always easier...having people stare at us while they walk past and almost run into someone or something because they are staring so hard isn't....the fact that the care he needs is very time consuming and relies on my best efforts to remember a million things we have to do in a day isn't always easy...I just sometimes feel that reality slaps us in the face when we see other children doing things Jacob will never be able to, the reminders that he can't see, the reminders of how hard it is for him to eat beyond pureed foods, all those things that I know can't be changed, at least not easily. Yet at the same time, I also know this is how it is. I've accepted it as our life. I make the best of it, and know that it isn't other people's "fault" that they have "normal" children. It doesn't always ease the pain though. It just is what it is. Some of you may think I am rambling, may even roll your eyes a time or two. While others may understand what it means because you are feeling it too. Some days, weeks, months, are great. In fact, lots of things ARE great when it comes to raising Jacob. But then, this little thing happens and once again, the human side of my heart is hurting, the parent side of me. Dave and I have talked many different times about this cycle and how it just BAM! Hits you like a brick. It's funny, because many of the same things trigger it for both of us. It is so great not to be alone in all this...

Tomorrow brings another week of busyness. Therapies tomorrow and Tuesday, nurse visits, and a follow up with the dr after completing his antibiotics for his UTI. Jacob has gotten over his cold WONDERFULLY. We are so greatful his immune system is able to fight off the bugs so quickly and easily. He is as happy as ever and has been finding great humor in making himself laugh. Like a true boy, he burps, farts, or sneezes and then looks toward his brothers to cheer him on. If no one notices or says something, he starts laughing at himself. He is such a nut!

Hope everyone had a nice weekend. Thanks so much for the kind words in the guestbook. They mean so much to all of us!

Love, Karla

Monday, May 9, 2005 7:04 PM CDT

Hello everyone! Jacob and I got back this evening from a day at Mayo. He had a visit with the physical medicine doctor regarding his bowels and the episodes he has had, the neurologist regarding the possibility that these episodes are seizures, and urology regarding his UTI's. A busy, busy day....

I find myself overcome with many emotions as I enter the clinic. The sense of fear isn't as strong as it was a couple years ago when I first started going there during my pregnancy. I am used to the routine of finding a spot to park in the parking ramp, finding my way through the subway and to my appts. I do feel a sense of anticipation and anxiety on what the day will hold....are we going to find out something that's going to require more testing, surgery, etc. I also feel a sense of pride in knowing how far my boy has come....from a very sick baby who wasn't supposed to do anything, nonetheless live, to a happy, smiley, flirtatous little man. He has come so far, above any expectations we could have imagined. Yet, we also know with the pride and excitement comes the reality of what he will never be able to do. A sense of sadness overcomes me at times when I see other spina bifida kids, the way Jacob was "supposed" to be...walking with walkers or braces, many in wheelchairs, but so aware mentally, able to see and talk, able to do many things Jacob will never be able to do. Along with all of that, I get a sense of confusion and being overwhelmed by everything we have to go through. It's not easy seeing many doctors in one day, having to get blood tests, urine tests, xrays, ultrasounds. Trying to put what you know, what you've heard from the doctors, and reality as you know it, all into a nice pretty little package. Instead there is a complex puzzle of if this happens, then that will happen, and compromises made within your own head on what is okay, what you can handle, what's not so bad, and if, if, if.....

Mostly though, I have a sense of okayness, familiarity, comfort, and home when I am there. It is within these walls that I can see others going through the very same emotions I am going through, whether it is young or old, similar circumstances or not. I can find that person to visit with in the elevator, the lady in the cafeteria so willing to take my tray and pack it up for me so I can tend to Jacob, the friendly smiles, the comments toward that cute curly-haired boy of mine, the lady playing the piano in the subway and those singing along, the peace and comfort from those I have entrusted to help take care of my son, the genuine caring and concern I get in return, the friendships and the bonds..

We are all set to go on our Make a Wish trip June 6-12th. We are so thrilled that we can have this time away as a family. What a blessing it is. Watch Jacob's Barney countdown to keep track of how many days we have left to go!

Hope all of you moms had a wonderful Mother's Day. I couldn't help but think of my own mother, friends I have who are amazing with their children, caringbridge moms, and those who spent the day without their child...many thoughts and hugs go out to Kelly and Penny on their first Mother's Day without their angels....

Take care everyone and thank you so much for your continued support. It means more to me than you know.

Karla

Friday, May 6, 2005 7:02 PM CDT

Oh my...I am sick. I woke up crying this morning at 2:45 with a 103.2 temp and a major poopy diaper. Mom called the ped on call and he said we could wait until the clinic opened. We spent the whole morning there...from 9:20 to 1:20. Long day. I had an x-ray, blood, urine, and stool samples were collected and I was just not happy at all. So far, there is a chance of a UTI, the culture is being run on that. I got an antibiotic shot just in case. My lungs look good, Mom was afraid I aspirated yesterday with all the coughing and puking I was doing. I slept a lot this morning, and by this afternoon, I was pretty happy again. I took another nap and hopefully I will start feeling better tomorrow.

We have good news! Airplane reservations are being made for my Make a Wish trip!!! We will leave on June 6th and come back on June 12th. It should be so much fun!

Hope everyone had a great week! Please keep happy,no bad germies thoughts for me!!!

Love, Jacob

Monday, May 2, 2005 10:22 PM CDT

WHEW! What a crazy, busy weekend! I am going to let my bubba Devin tell you all about it!

Thursday the 28th was my birthday. I have been counting down since April 29th of last year. In fact, I've had lots of plans for this big day! I woke up to Mom, Dad, and Michael shooting confetti all over me. It was SO SWEET and just what I wanted! I got to open all my presents and even play with them before going to school. Mom came to my school with Teen Titan hero popsicles. All my friends loved them. Mom and Jakey ate lunch with me. It was cool. When I got home, we got ready for my concert. I had my concert at 6:30 and Michael had his band concert at 7:30. Michael's grandpa and grandma took us to McDonald's afterwards for a treat. You can see the ketchup on my chin in all my pictures!

I could hardly stand it waiting for Saturday to come. Michael's friends got to my house first and I was so worried none of my friends were going to be there in time! Once everyone got there, we all got into the van. We rode with Mom on the way there while Dad and the other boys jammed to the music in his truck. We got to Rochester and it was so cool showing all my friends the McDonald House. We played in the gameroom for a very long time and then Mom said lunch was ready. I had lots of other family and friends come too! After we ate, we opened presents, did my piana (pinata for those who don't know Devinese!), and then had ice cream sundaes! I even gave everyone a tour of the house so they could see how SWEET it is. My friends think I am so lucky to stay there!

Once we got all cleaned up, it was time to go to the hotel. We got our swimtrunks on and into the pool we went! Mom and Auntie Sandi took our orders and went to McDonald's to get our food. It was pretty pathetic when we saw them carrying the food in on a cart! Dang us boys can eat!!! After supper, we all hung out, watched tv, and then Michael and his friends went downstairs with Dad. Me and my friends played The Suite Life of Zach and Cody. We had more fun with that cart you get at a hotel. I asked Mom if we could stay up to midnight and she said YES! WOW!

When we woke up, we went downstairs for breakfast. It was very yummy! Then off to the pool again before heading home. Me and my friends rode with Dad on the way home. Mom got to listen to the boys tunes until Jakey started crying. Just imagine Michael and his friends listening to Barney....Mom was laughing so hard, especially when I Love You came on. She asked if the boys could just feel the love in the the van! LOL!!!

We dropped off all the friends and it was time to relax at home. I didn't go to school today because I have a yucky cough, but hopefully I will be ready for school tomorrow!

Check out all my cool pictures from my birthday!

Love, Devin

Thursday, April 28, 2005 10:45 PM CDT

HAPPY BIRTHDAY DEVIN! My bubba turned 6 today! I know it is late, but I thought I'd journal anyhow.

Devin woke up this morning to confetti poppers shooting confetti all over him. He was so excited! After opening his presents, he spent time playing with them. Mom and I went to his school at snack time and brought popsicles. We stayed until lunch and ate with Devin. My nurse came shortly after we got home, so I had a little tub, some nummies, and took a nap! Boy was I tired!

Tonight, was Devin's Kindergarten concert as well as Bubba Michael's band concert! We went from one to the other. Michael's grandma and dad came to watch it too. Afterwards, we met grandpa at McDonald's and had a treat. It was lots of fun.

We are getting all ready for our exciting weekend! We can't wait! We also heard from Make a Wish again and it looks like we will be going June 5th! Some more papers have to be finalized, but so far so good! Look out Barney, here I come!

Love, Jakey

Monday, April 25, 2005 9:42 PM CDT

Alright Auntie Amy....here I am! The rummage sale has made Mama dead on her feet. Boy it's a lot of work, but so worth it! We had an AWESOME sale! I spent the day outside on Friday, but Saturday it was just too windy for me to be outside. I was surprised that Mom wasn't blubbering over all the baby clothes and baby furniture. She was SO brave! She did save a few favorite outfits from all of us boys for her special box. This should keep the baby fairy away! Actually, Mom and Dad are quite happy with us three boys and life is good.

A funny thing has happened to my bubba Devin...he seems to keep getting these sicknesses periodically. First it was Super Heroitis. Then Incredibleitis. Now it was Rummage Saleitis. He just could not go to school on Friday...poor thing. Mom didn't fall for it though and he wasn't too happy. He was so afraid she wasn't going to have the sale when he came home.

Bubba Michael was so excited to go rummaging on Sat. He found so many cool things....superhero toys for Devin, a Barney for me, CD case for Dad, a necklace for Mom. Oh did I forget the lovely wolf pictures he got or the huge reindeer that plays Christmas tunes continuously unless you take out the batteries? Oh AND he has blinking lights on his antlers!!! It's amazing what comes home when Mom isn't there to sensor the purchases!

Therapy went well today. I worked very hard. Maybe someday I will learn to use my arms to actually push up with. That's what they want me to do anyway. I have learned a really neat trick...I can turn my toys on with my head when the therapist is here. My OT always makes me laugh too. She is a funny lady!

I have been having these spells the last week, especially the last few days. We are beginning to think they are seizures. :*( PLEASE pray for guidance and answers. It's been 14 months since I had seizures, so hopefully the neurologist will help us figure out what to do.

Also keep Miss Maya in your thoughts and prayers. She is up in Rochester now hoping to get some testing done and get some answers to some problems she is having. Meanwhile, Pookie is making himself at home again. He loves sitting on Mom's lap when she is trying to type for me!

This weekend, my bubbas are having their birthday party at the Ronald McDonald House! Devin has wanted to have it there for a year now and with Maggie's help, we were able to celebrate it there! We will have our party and then serve ice cream sundaes to everyone in the house. We are very excited! We are going to stay over at a hotel afterwards and go swimming. Mom is letting the boys bring some friends too. Hopefully she will not be insane by Sunday morning.

Mom will try to get some new pictures up on here soon!

Love, Jakey

Tuesday, April 19, 2005 2:39 PM CDT

Hello everyone! It's raining, it's pouring, Jakey man is snoring! What a crazy rainy day. Little man is out. We had such a nice weekend. On Saturday, Devin, Jacob, Holly, Maya, and I went to see Robots. One of the theaters in town give free tickets to people in wheelchairs plus their companion. What a sweet deal! On Sunday, we went to church and then to the park for an afternoon of play! The funniest thing happened. Maya and Devin were playing hide and seek. Maya doesn't quite understand the hiding part. She just goes somewhere and stands there, in plain sight. Devin told her to hide again, and this time, she moved just a little farther away on top of a hill. Devin, being such a good sport, started saying, "MAYA! Where are you?!?!?" and looked all over. Meanwhile, Maya was standing there going, "DEVIN! I am right here!!!!" We laughed so hard our stomachs hurt. What a kid....going along with it, just so she felt she was important. The things Devin has learned from being around kids with special needs is priceless. Miss Maya is back in the hospital, so please keep them in your thoughts and prayers.

Friday and Saturday we are having a rummage sale. I got everything ready and priced, and boy am I tired and sore! LOL UP AND DOWN the stairs a million times... And by the way Carolyn, you better bite you tongue there missy! The thought of another baby in this house is just TOO much! LOL!!!!

Take care!

Love, Karla

Saturday, April 16, 2005 4:56 PM CDT

It's been another week of therapy, nurses, and fun with my bubbas. I worked hard for my OT this week, but not for my PT. It was much more fun to lick the toy drum in front of me and turning it on with my forehead than to sit up like she wanted me to. On Thursday, we went on a road trip to Rochester. We stopped to say hi and Happy Birthday to my buddy Brittany and Mommy went to her Family Advisory Committee. Mayo Clinic is working on having pediatric specialities all together on one floor and so Mom got to check out the architect's plans and fabric/wall colors. Pretty cool!

Mom got a letter from the opthamologist yesterday which talked about my appt and plans for vision therapy when I go to the big boy school. He also said my vision is reduced to at least 20/200 and may be even worse, just able to see light, because of my brain damage. Such tough things to hear sometimes...

Today, we met Holly and Maya at the movie theater. We saw Robots. It was pretty funny! I am always a good boy in the theater. I get lots of extra snuggly time too.

Next weekend, is Brice Prairie's big rummage sale so if any of you live around here, you'll have to check it out! Mom got brave and decided to sell my baby clothes. Crazy woman has such an attachment to them for some silly reason! She did keep some of her favorites though for our memory boxes.

Sending everyone lots of love! Make sure you stop and sign my guestbook. Mommy and I love all the messages! Thanks to all of you for the prayers, love, and encouragement!

Jakey

Monday, April 11, 2005 8:25 AM CDT

Hello everyone! We had an early morning yesterday. We got up and went to visit my Grandma and Marvin. My Godfather Justin was coming to Grandma's too, so I wanted to see him since it's been a year since our last visit. My Godmother Kelly came over too, and her fiance George and my Auntie Lista and Uncle Dean....it was a really fun time! We went to church and then came back for lunch. I got lots of snuggling time with Justin. In fact, I even kissed him and told him I loved him. I sure have a lot of special people in my life! Please check out my pictures!

Today, I have the PT and OT coming to play. Mom's also waiting to hear the results of my urine cultures. I am on antibiotics now to be safe.

Hope everyone is having a great day!

Love, Jakey

Saturday, April 9, 2005 10:02 PM CDT

Hello everyone! I am sorry it has taken me so long to update about our trip to Mayo. Thursday morning, bright and early, Mom and I left for Rochester. The first person I saw was the opthamologist. He says everything is the same with my eyes. With my optic nerves a little pale, as well as the brain damage I have to my cortex, it causes me to have the cortical visual impairment. He did recommend that once I get into school, I should have vision therapy every week. I sure hope I can!

After the eye doctor, I went to these vampires who wanted to suck all my blood out. Darn people had to hold my arms and I tell ya....I hate that! Mom lost an order stating they could draw from my feet so I had to go through the torture of getting it from my arms. My stupid veins always move, so they had to do both arms before it worked.

I went to get my new harness for my wheelchair next. After much complications and some people thinking my mommy wasn't busy enough so she could do their job too, we finally got it on. I sit so much nicer in it now. Plus it is super duper easy for Mom to get me in and out.

I went back to the clinic just in time for more torture. I got my botox in my right arm....5 whopping shots. Actually the thing that made me the maddest is that they held my arm down again. I hate that. I hate it more than the shots actually! So once that was done, 3-5 minutes max if that, I smiled at the doctor so he knew I wasn't mad at him. Just like a switch I turned the tears off.

It was now time to finally go see my favorite nurse Deb. I had some smilin' to do. We talked to Dr Driscoll too, but by that time I was sleeping so I never got to flash her my cheesy grin. Once we got everything discussed with her about my wheelchair and botox, it was time to go! LITERALLY. It was CATH TIME. Actually, that isn't so bad, I don't really care at all about that. A little uncomfortable, but I am a big boy.

Once we were all done, Deb got Mom a coffee treat from Starbucks and then my favoritest doctor called! Dr. Nickels took care of me when I was first born. I love her very much. She asked if we wanted to come over for supper at her house. She has 2 really awesome kids that were so fun to play with. It made me so happy to see how nice they were to me. I started getting really tired from my busy day, so we went back to the hotel.

On Friday, I decided to get up early since Mom wanted to sleep in. Then once she was up, I decided to take a nap. Gotta keep her in line you know. We went to see the nephrologist about my kidneys. She was so happy with how great I am doing! I don't have to take my potassium anymore, but I do need to take my diuril still. My tests all looked good except it looks like I have a UTI :( Mom's a little scared since the last time I had one it didn't turn out so hot for me, and it could also mean that I may need to be cathed on a schedule if I start getting too many of them. But we will worry about that stuff later. Just keep good thoughts about what this infection could mean. I did start taking some antibiotics right away so hopefully that will help in a hurry!

Today was spent running around doing errands and hanging out with my bubbas. Tomorrow, we are planning on going to my grandma's house since my cousin/Godfather Justin will be there! I'll let you know how our visit went!

Love, Jacob

Tuesday, April 5, 2005 11:25 AM CDT

Good morning everyone! I had a busy day yesterday with the PT and OT coming. I was not happy with the PT at all. She wanted me to do some really hard work and boy did I let her have it! My nurse and my teacher are coming today. Always busy busy busy!!!

On Saturday, I got to ride in the swing for the first time! I actually could hold up my head pretty good! You'll have to check out my pictures!

Tomorrow night, me and mom are going to church to talk to the confirmation kids about me. It should be cool. Then Thursday we are off to Rochester for 2 days of appts. Wish me luck!

Love, Jacob

Saturday, April 2, 2005 6:56 AM CST

Good Saturday morning! I was up at 4:45 today. I just couldn't help myself! I just fussed a little, but when the sun started shining in my window by 6, there was no more crib for me!!!

My grandma Lorraine is staying over for the weekend. She had some laser surgery on her eye yesterday, so we are taking care of her. Mommy and I took her to the doctor yesterday and then we ran over to the hospital to see Holly and Maya for a while. I haven't gotten many Holly snuggles lately, so I was so excited to see her! Of course, Maya HAD to have Miss Karla sit by her! I think she likes my mama a lot!

Last night, I was laying with Mommy and Daddy on the bed and they were trying to get me to say MA. I was quite humorous as I kept saying "DA!" instead. Then I decided to try and I said, "NA?" and Mom and Dad laughed at me. I said NA a couple times and then I finally said, "MA!" Once must not have been good enough because Mommy kept making me try to say it again. Finally, I shook my head no at her and the lady left me alone! Pretty cool huh?

Not much going on this weekend. Just hanging out. Dad has to work today for a little while. I think Mom, bubbas, and I are going to hit Walmart this morning. This coming week, we are heading up to Rochester again for more appts. I am seeing the Opthamologist and having Botox on Thursday. Friday, I see Nephrology for my kidney stone. Hopefully my tests come back that I don't have so much calcium in my urine this time!

Hope everyone has a wonderful weekend and leave me a note to let me know you were here! Check out my new pictures too!

Love and Kisses,
Jacob

Wednesday, March 30, 2005 8:02 AM CST

Good morning! It is me...Mr Cheesy! I am grinning ear to ear, watching Barney. My hair is getting curlier by the minute too. Boy, do I have some curly locks! The cool thing is we can at least give the illusion that my head is wider! LOL

My bubba Michael left this morning for a 3 day field trip to Eagle bluff Environmental Learning Center . He was so excited. The best part is he gets to bunk with all his buddies. It should lots of fun. I forgot to tell all of you what my bubba told me the other day. He said he is so lucky to have a brother like me who loves to cuddle instead of one who has to run around all crazy. :)

I was a little crabby yesterday, but so far today I am feeling happier. I just wanted mama to hold me yesterday. Then when my nurse was here, I decided to puke all over my bed. Of course I did this JUST after she changed my sheets. HEE HEE!!!

I am talking so much lately too. I always have something to say, but my favorites are "I LA!" and "Gee gee gee gee da!"

Hope everyone is having a great week! Leave me a note to let me know you were here!

Love, Jakey

Sunday, March 27, 2005 2:32 PM CST

As my great-grandpa used to say, "Christ has risen and the Easter bunny's been here!" Happy Easter to everyone!!!
I hope this Easter Sunday has brought a new realization to the wonderful gift God has given us in his son, Jesus Christ.

We've had a super Easter weekend! Yesterday, we went down to see the big rabbit at Copeland Park for the Easter Egg Hunt! My bubba Michael helped me get some candy. Mostly because he is too old for it, so he thought he'd "help" me and also "help" me eat it! What a good bubba! Devin and I both won stuffed animals for prizes too! It was fun because we got to see my cousins Penny and Patty, oh and my cute little cousin (she's just a little older than me actually!) Lydia who gets prettier everytime we see her. We also saw Hope and Cody, which are old friends of my mama's. They met me for the first time. I was charming as ever! We even went to Chuck E. Cheese to play for a while, so it was a very fun day!

Today was church of course. They had beautiful music and trumpets and bells....WOW! I spent most of my time kissing Mom and Michael and telling them I loved them, while the big old lug Devin laid on Mom and slept. It was quite fun all trying to fight for Mom's lap and attention, but oh well...I think Mom likes all the lovin'.

The Easter bunny brought me some cool Barney movies (like my previous 31 movies weren't enough!), some juice bottles with Barney, Baby Bop and BJ's heads on them (I can't drink very good but we can pretend!), some really cool Roll Around balls for my gumball machine , and a toothbrush. My bubbas got lots of candy and fun toys, including silly string! They already had a silly string fight outside! They are watching Fat Albert right now.

Hope everyone is having a wonderful day and thanks to everyone who has signed my guestbook! I really like hearing from all of you as well!

Love, Jacob

Thursday, March 24, 2005 9:12 AM CST

Hello everyone! We had a very busy day yesterday! We ran into La Crosse because bubba Michael had an appt. Mom also dropped off some prescriptions for me. After Michael's appt, we went back to pick up my meddies and went to Burger King. Someday, I'll be able to eat french fries! They smell so good! We got home just in time for the nurse to come. I was busy taking a tubby while Michael, Devin and Mommy went to get Holly some clothes and bring Pookie back to our house. I took a little snooze and when I woke up, we were ready to go to Chuck E. Cheese for my friends, Blake and Levi's party. I did really good with all the loud noises and I even got to give Crystal and Amy some loves while I was there! We sang Happy Birthday and ran out with cake in hand so we wouldn't be late for our Make a Wish visit.

The visit went great. They brought so many gifts! You'd think it was Christmas!!!! I got the Barney movie on DVD, Train Conductor Barney, Barney, Baby Bop, and BJ beanies, Barney color book and crayons, Barney blow horn, a stuffed bunny and a stuffed bear, and a Harley Davidson sweatshirt. Michael and Devin got Harry Potter Legos, Perfection, Batman and Batman car, CD holder with Make a Wish on it, jump ropes, 2 small wooden games, baseball cards, and Harley Davidson shirts. IT WAS SO AMAZING!!!!! We are going either the first week in June or last part of May. We will see what they decide since they need some time to plan ahead for us. The cool thing is they will pick us up in a limo and take us to the airport! We will have everything planned for us. We will have spending money and a van rental. We will have so much fun! Check out my pictures to see my wish granters and me and my bubbas in our Harley shirts!

We are looking forward to painting easter eggs today and on Saturday, we are going to an Easter egg hunt! It should be lots of fun!

Tuesday, March 22, 2005 11:41 AM CST

Good morning! I had such a busy day yesterday! I went to my new school with Mommy to check out some equipment. We met with the PT and she showed Mom all the equipment they have available, as well as talked about some other equipment I may need when I start school next year! I got to hang out with the adaptive PE teacher and flirt with her and all the ladies that came by! My teacher came in and met me too. In fact, she held me for a long time and she is so funny! I laughed so hard at her silly noises. I know I am going to have so much fun at school!

PT came to my house yesterday and I didn't want to work at all. In fact, I threw a pretty big fit at one point when she was messin' with my arms. Darn lady! I yelled for a while and then I growled at her. Mom took me and put me in my crib for a few minutes and I slept a little before my OT came. She had this really fun contraption called a Creepster Crawler that I tried out. I didn't go anywhere yet by myself, but I really liked being up on my knees. Check out my pictures!

Last night, Mommy went to see Maya in the hospital. She fell and got an owie on her port site. Poor Maya! I stayed home with Daddy. I am not feeling the greatest lately. Yucky diapers and crabby sometimes, but nothing too dramatic. Hope I start feeling better soon!

Love, Jacob

Sunday, March 20, 2005 10:24 PM CST

Hello everyone! We had a nice weekend. It finally stopped snowing and wow! There was 15 inches! It looks very pretty, but I want spring to come so I can go outside!

Saturday, Mom got a really cool report about me from Mayo. Here's the best highlights:

From the neurologist:
He is aware of his environment and indicating his needs through body language and gesture. He has several phrases that have communicative intent at this time and these include "up" and "I love you" He can indicate to his mother when he wants to go to bed and when he is hungry.
Jacob is a happy, socially responsive, and interactive infant. He flirts with the examiner and his mother. He was heard to babble repetitively with consonants and to say something that certainly sounded like "love you."
She went on to say that his seizures are under control and that she wants to see him every three months to keep him in good shape. Then she added "The family is doing an excellent job in terms of caring for him."

From the physical medicine doctor: Happy, charming little boy. Many more vocalizations than I have heard before. With prompting, I heard his approximation of "I love you."
Jacob has good head control at this point and nicely emerging trunk control. I fully expect that he will be an independent sitter some time soon.
I expect that at some point in the not too distant future we will be talking about transitioning him from a standing frame to a gait trainer.

WAHOO! Isn't that awesome?!?!?

Today, we had an awesome cantata at our church called "Once Upon a Tree." It was absolutely beautiful and I was in awe thinking....Jesus died for ME and YOU. As you enter into this holy week, may you think deeply about what Christ did for you, the pain he endured and the amazing sacrifice..."For God so loved the world, that He gave His one and only Son that whoever BELIEVES in Him, will NOT die, but have ETERNAL LIFE."

Love, Jacob

Friday, March 18, 2005 1:50 PM CST

Oh my! I am so sad that no one has signed my guestbook lately!!!!

Can you say SNOW!?!?!?!?!?!?! WOW! Our meteorologist, AKA Michael, has been out many times with the ruler and let us all know the snow totals. Last count, we are up to 8 1/2 inches! School was obviously closed for the day. I am enjoying having my bubbas around. They always make me smile and laugh!

Our wish granter from Make a Wish called and because of the snow he won't be able to make it tonight. :( It makes me very sad that of all days it had to snow today! But he will come on Wednesday instead.

We are supposed to continue getting lots of snow tonight and tomorrow too. Some of Mom's plans have changed because of the snow, but we are still planning on going to Palm Sunday church and listen to the Easter cantata. It is always so beautiful!

I have to share a special warm fuzzy with you all. Devin's teacher was telling mama at his conference how caring and compassionate Devin is to other kids in his class. He is very patient with other kids, especially one boy with autistic tendencies. He will say the same thing over and over, which can annoy others. Devin told the kids the other day that "everyone's brains work different" and to basically leave him alone! My bubbas used to go to a sitter named Penny before I was born. Michael and Devin love Penny so much. Penny's oldest boy, Tyler, was born with some disabilities like me and in Sept, Tyler became an angel. We all miss him so much. Mom was talking to Penny yesterday about how patient Devin is with others and how he learned a lot of that having grown up around Tyler and now Jacob. When Daddy came home, Mommy told him about her conversation with Penny and Devin who overheard it said to Dad, "Tyler taught me how to take care of Jacob." What a cool thing to have learned so young....I am truly blessed to have such a wonderful family and friends surrounding me.

Love, Jakey

Wednesday, March 16, 2005 7:03 AM CST

****Added new pictures!****

Good morning! I am busy playing my piano. I sure love my piano! It sounds like I need some new batteries again though!

We got a call from Make a Wish. They are coming over to visit with us on Friday night! I sure hope we can go meet Barney. I love my Barney so much. Last night, Dad put me in my stander and didn't turn my Barney on. Can you believe it? He wanted me to be in the stander without my Barney? I got a little angry with him, but started smiling as soon as he turned it on.

Yesterday, I kept telling mommy "I LA!" over and over again. I sure love my mommy!

Hope everyone is having a great day!

Love, Jacob

Sunday, March 13, 2005 6:44 PM CST

New Pictures added!

Hi everyone! We had a very fun, busy weekend! We went to the Wisconsin Center for the Blind and Visually Impaired conference in Wisconsin Dells. Grandma B came with us to watch me and my bubbas. Mom and Dad went to lots of sessions and learned some new things about kids like me! We would have meals all together, and then Grandma would watch us while Mom and Dad were gone. Michael and Devin went to SibShop on Saturday. They had lots of fun activities for them and they got to talk to other people with bubbas or sisters like me! The coolest part of the weekend was being around so many other kids just like me. We felt so normal. No one was trying to figure out what was wrong with me, trying to figure out what I was looking at or telling my mama I look "tired." There were feeding tubes, wheelchairs (lots of them looked like mine!) and kids with goofy shaped heads! It was awesome!!!! One of the therapists even came over to help screen some of my vision and she does think I see, just different than you do! I definitely reacted to something in my field of vision, but I don't look directly at things, I look more TOWARDS it. I have what they call cortical visual impairment.

Last night, we went swimming! I used to hate the pool, you know the blood curdling, scream and blow my mom's ear drums out kind of hate it??? Now I love it! I was kickin' back, relaxin', just floating around in the pool. Such is the life...

Today, we had a lady playing some cool music for us. She let me sit on her big drum and while she was turning my legs around, she dropped me and I fell on my head :*( Stupid stupid lady!!!! Mommy was very angry. I cried and cried, but I am fine now.

Tomorrow starts another week of therapy and fun. Hope everyone had a nice weekend! Please sign my guestbook so I know you stopped by!

Love, Jakey

Wednesday, March 9, 2005 5:05 PM CST

Hey everyone! We got home last night. I had my AFO's and splints adjusted yesterday. I also had my wheelchair adjusted, and I was told that I needed to stop growing so fast! While we were waiting for my wheelchair, my PT from Mayo came to visit me again and I tried out a gait trainer. It basically looks like a big walker. I thought it was pretty cool. I didn't move at all, but I did put my feet down on the floor a few times. Ann was making me bump into the big metal cabinet and of course I thought this was hilarious! Definitely all boy!

I did something really cool today! I went to the high school and Mom and I talked to the kids about me. We went with Deb Kroner from Children's Miracle Network. She talked about what CMN is and then we told my story. I had lots to say throughout the whole presentation. I'm getting to be a noisy boy and whenever Mom tells me to SHH, I get even louder! I decided to show everyone my puking tricks today too. Boy, that Mom can sure JUMP fast when she needs to! Of course, I did this just when we needed to talk, but hey, we pulled it together and I showed everyone my BIG SMILES! Mom even strategically placed me over the wet spot on her shirt so no one could see my pukie. We talked to everyone about how sometimes bad things happen and there are things you can't change, but you CAN change your attitude. It is all a matter of prospective. She shared how when bad things happen, there are so many more blessings that come out of it than just the bad parts. We hope we made an impact on everyone who heard our story.

Tomorrow, my teacher comes to play. Mom needs to go back to Rochester tomorrow night for a Family Advisory Council meeting. I think I will hang out with Holly until my mommy gets back.

There are quite a few of you I haven't heard from for a very long time, so please remember to sign the guestbook or email Mommy to let us know how you are doing!

Love, Jakey

Monday, March 7, 2005 7:40 PM CST

Hello everyone! Karla here. We had a long, busy day with appts. Started with routine bloodwork and urinalysis. Saw the dietician, who gave us the great news that Mr Cuteness is 50th percentile for both height and weight. The calorie and fluid intake he is getting appears to be adequate now. At 3, we will do a complete diet workup and making sure he is getting the right vitamins, protein, and minerals.

Physical Medicine came next and was very impressed with all of his new skills. She even got to witness his "I love you" and I think I spotted a few tears in her eyes. We discussed the whole splints, braces, and wheelchair, issues and will have things modified tomorrow. We are still trying to get the stander approved...very frustrating. Next month, Jacob will also start Botox injections for his right arm contractures. PT came in and we discussed his equipment needs some more and will see her tomorrow as well to try out some new equipment.

Neuro came in and was so impressed with the Jacob she saw before her. It was a nice visit, very emotional in many ways for we talked about what was, what is, and what is to come. To put it simply, we have a miracle boy amongst us...plain and simple. What it also means is there are still things to be concerned about and watch carefully. There was lots of discussion about reality and life expectancy, hopes and dreams, and once again reality.

Developmental peds came in last and did an exam as well as talked to me about how he is doing overall. There is still a lot of concern over his lack of vision holding him back from his potential. I too feel this holds back his abilities, in fact it is one thing that I find responsible for many of his delays. He is placing him at a 4-5 month level overall considering his deficients in many areas and his scattered skills.

We will be coming home tomorrow after a few more appts. We will return in April for his Botox and opthamology appt.

Please keep our buddy Parker in your prayers as he is in the hospital for infection following his vagal nerve stimulator surgery.

Karla

Sunday, March 6, 2005 2:16 PM CST

Happy Sunday everyone! I am going to Rochester today, but I thought I'd better update first!

I think we can mark it down in my baby book that I am saying another word. Everytime Mommy says I love you, I say, "I LLLAA!" back at her. I am very affectionate too while doing this, I give lots of kisses all the time!

My buddy Maya came home on Thursday after spending 31 days in the hospital! I was so glad to see her at home finally! We went out to the movie yesterday together. We both did such a great job in the theater. I never cried once.

Tomorrow, I see the dietician, neurology, developmental pediatrics, physical medicine, PT, my favorite nurse Deb, and also have some blood tests. Tuesday, I get my wheelchair adjusted and my AFO's adjusted. Hopefully everything will be great! We will be staying at Ronald McDonald House for two nights, so Mom will update after my appts!

Love, Jacob

Tuesday, March 1, 2005 7:40 AM CST

Good morning everyone! I had a much better sleep last night than I did the night before! I thought I'd take Mom and Dad on a little adventure through the land of no sleep on Sunday night. Those darn people weren't liking my adventure much at all. In fact, they darn right hated it I think. Can you believe they'd only come in every now and then and talk a little to me? They changed my diaper, and made sure I was okay, but they never once picked me up. HHMMPH! I guess they are realizing my tricks. Darn...I thought I could play that one a little longer before they caught on. Yep, I am starting to learn the fine art of MANIPULATION!

I had a nice weekend. We went to church on Sunday and then we went to a family fun fest in La Crosse. It was great, especially when I got to see my ladies...the radio crew that interviewed me this fall! Debbie and Jacklyn were so excited to see me. I played shy a little too, just to get them really oohing and aahing over me. We talked to Jacklyn for a very long time while my bubbas were jumping in the bounce house and going down this really big slide. It sure was nice getting some lovin' again!

After we were done there, we went to the hospital to see Miss Maya. She was so excited to see me, she even held me for a very long time and sang me all these cool songs. She knows how much I love when people sing to me. Hopefully, she will be able to come home sometime soon! She's been in the hospital for a very long time!

Yesterday, my PT came and we worked...not too hard, because I thought smiling was much more fun than actually working. I did push with my legs a few times. I even laid on my belly over my big frog that cousin Emily gave me and tried so hard to push up with my arms. It is hard work, but I am getting stronger all the time.

Next Monday, is my big day up in Rochester. I am seeing neurology, physical medicine, developmental pediatrics, my favorite nurse Deb, and have some blood and urine tests too. Wish me luck! I can't wait to show off my new stuff to everyone!

We got a letter from Make a Wish yesterday, and it looks like I might get to go on my wish trip soon! My wish granter will call us and make arrangements to come meet me soon. I really want to go meet Barney at Universal Studios. Wouldn't that be fun?!?!?

Love, Jacob

Saturday, February 26, 2005 10:34 AM CST

Good Morning everyone! Mom and I slept in today. We just woke up at 10!! Actually, my first wake up call was at 3 and I didn't fall back to sleep until 5, so I think we needed the extra sleep. My bubba Michael has 2 friends staying over, and they are having so much fun. Devin loves to play with them too. They are really nice to him and he has only cried once about them not letting him do something, so that's good!

Make sure you check my last journal if you missed the exciting news. I am still sitting here shaking my head at my uncle Bill....to THINK I'd be sad about the Vikings and Randy Moss! You did make Mom and Dad laugh though!

I had 3 people from the school district and my Birth to 3 coordinator come over yesterday to talk about my transition. Yep, the time has come for this big boy to go to SCHOOL!!! I decided to start sneezing when they were here and I gagged a little too. Mom told me I better not show them ALL my tricks! I was so tired, so I took a little nap in mama's arms. From what Mama told me, I should have lots of fun at school! It sounds like everyone is excited to get to know me and that they will get some special equipment ready for me! They have lots of it in storage, just waiting, which is awesome.

I also got my pictures taken yesterday for my 2 1/2 year birthday! They turned out really cute. I will share them when they come in!

When I got home, all the sneezing I did all day, turned into a full blown cold. I'm sure I am NOT going to like this!

Hope everyone is having a great weekend! Thanks to everyone who signed the guestbook. We look forward to reading it everyday. We also want to thank everyone for supporting us all this time. Your kindness and love will never ever be forgotten!

Love, Jakey

Thursday, February 24, 2005 9:58 PM CST

Hello everybody!!! It is me, Jakey. I have done something pretty incredible the last 2 days.....GUESS WHAT?!?!?

I SAID MY FIRST WORD!!!!!

Yes, I do believe it is true. My mom has been bugging me to say UP everytime she picks me up. SO I decided to give in and do it. Actually it sounds like "AW!" I'll need some time to perfect the "P" sound. You know, Mom thought it was a fluke, because every now and then I do the AW sound. But I am doing it whenever Mom asks me for the most part anyway. Of course, Mom had to sit and blubber a little while after I said it the second time ( I think she finally believed me!) I am hoping and praying that I remember this word and that when I go see my doctors on March 7th I can remember to show off a little. Aren't you so proud of me?!?!?!?

Jakey

Monday, February 21, 2005 10:03 PM CST

HELP WANTED: Super Duper Diaper Changer
Job qualities we are searching for include a reliable individual who can come at a moment's notice when Mom so beckons their name. Must be able to handle REALLY stinky diapers, the kind that migrate north in both front and back. Must be very fast at cleaning my butt as I'm mighty fast with hands. Job will last at least until my 2 year molars come in or longer as Mom sees fit. Any one interested may apply by emailing my Mom or signing my guestbook.

I guess you all know what I've been up to! Waist high in poop! On Saturday, one of my molars just POPPED right in. The other ones are getting really close to coming through too. I tell ya....it's tough being two.

I got my haircut again today and boy am I spiffy! My hair has gotten so curly when it is long. Robin left a little bit of curl on the side, but cut it over my ears and at the pointy top of my head. My head's tall enough without the extra height! LOL

Tonight, me and bubba Michael were snuggling on the couch and we both fell asleep. Check out our picture together :)

Love, Jakey

Friday, February 18, 2005 8:18 PM CST

New Pictures! My mommy loves the tie picture so much, she had to put it back on! Daddy took some pictures of me too. Can you believe how big I am getting?

WOW! It's been way too long since I've updated. I've had a pretty good week. I worked with PT and OT on Monday. I even got the extra bonus of seeing my teacher that day too! So picture this, Valentine's Day, surrounded by all the ladies...what more could a boy want???? In fact, I gave my PT a big hug and even kissed her. I've been doing a lot of that kissing business. Mommy gets slobbered on about a jillion times a day!

I've decided that my voice is a thing that just shouldn't be wasted either. I am jabbering all the time. I like to say, DEE DEE DEE, AAAH! AAAH!, DADADADADADA, NNNNNNNNN, and lots of combinations of the above with a question thrown in every now and then, or a really loud AAAHHHH! which means get your butt in here and pick me up right now! I redeem myself after screaming by grabbing Mom or Dad's face and kissing them. Suckers fall for it everytime!

I've also continued my partying tradition at 3-5 AM in the morning. Sometimes I throw a 1:30 AM in there just to keep everyone on their toes. Every third day about I decide to sleep all night. Such is life off of Phenobarbitol I guess!

My friend Maya went to Rochester last night to have some testing done and will be transported back to the hospital in La Crosse tomorrow. She's been in the hospital since the beginning of the month. We love her so very much, so keep her in your prayers!

Love, Jakey

Sunday, February 13, 2005 1:46 PM CST

New Pictures! Do you think I look like a little man?!?!?!

I have had a nice week with Daddy home. I like when Daddy helps take care of me. On Thursday, we picked up my bubbas a little early and went to Rochester. My mommy was asked to be on the Family Advisory Council for the children's hospital at St Mary's/Mayo, which she is very excited about! Our family truly believes that when your life takes some turns that may be very difficult, God blesses you so much more in return. He leads you on new paths, shows you other strengths, talents, and joys that you may have never ever known unless you went down the hardship path to start with. We have enjoyed finding these little gems along our paths. Things that give our struggles purpose and new meaning...things that bring new people and new experiences into our lives.

Today, we went to church. I was all dressed up in my fancy outfit. My bubba Michael held me through all of church. He even brought me up front for the Children's Message and Communion. Many people smiled at him and said how much they loved watching him take such good care of his brother. I am so lucky to have such wonderful bubbas who look at me with such gentleness and kindness, who look at the things I CAN do with awe and excitement, and don't spend time focusing on the things I can't do. I am sure it isn't easy for them with friends and classmates experiencing a different path. Instead, they look at me with pride. Oh, how I love my bubbas....

Hope you are all having a great weekend! I think I am going to head for bed for a little nappy poo!

Love, Jacob

Tuesday, February 8, 2005 10:47 PM CST

Hello everyone! It is me....the big 2 1/2 year old! Yes, today is the day! I am so darn proud of myself. Devin was so excited when Mom told him it was my 1/2 birthday. He came running into me and told me HAPPY BIRTHDAY JAKEY!
You'll have to check out my pictures :)

I've been up to my same old tricks. I prefer not to sleep too late anymore. You know, I might miss out on the sun rising! Wouldn't want to do that you know. My mom wasn't too happy with me this morning at 3:00 AM when I decided I was up for the day. Maybe she'll get smart soon and get to bed earlier. HMMMMM

My PT and OT were here yesterday. I was cute like always. The cute trick works wonders for me. Today, my teacher Sue came over. She plays the coolest things with me. Today she brought me a shiny heart balloon and we'd pull the string to make it come down, down, down, and then I'd hit it to make it go UP! Everytime we'd say UP I'd laugh so hard. When we'd start saying DOWN, I knew what was coming, and I'd get so excited. My nurse came today too, so Mom and Dad went out to pick up my meddies.

Poor Dad...he took the week off for vacation and his stupid truck broke down. He needs a new transmission and has no idea how he is going to fix it or how he is getting to work next week. There is always something...

Sending lots of hugs and kisses!

Love, Jacob

Sunday, February 6, 2005 6:29 PM CST

Hello this Sunday! Mom spoke a little too soon about the sleeping thing....yep, I have been having lots of fun getting up in the WEE hours of the morning and staying awake, talking and jabbering. In case anyone isn't enjoying me being awake, I throw a little scream in there every now and then too, just to make sure no one thinks about sleeping. It has been so delightful for mom, she can't even express it in words! I haven't even been taking very good naps during the day either. Too many things to do! I've got to get in all my piano practice, Barney movies, playing with my toys, standing in my stander. Mom is missing the nap thing, but I'm not!

Maya is still in the hospital, so please keep her in your thoughts and prayers!

Hugs and Kisses!

Jacob

Friday, February 4, 2005 6:43 PM CST

Sorry I forgot to add...So far, so good! No seizures! Life without phenobarb has been good. I didn't sleep very good the first 2 nights, but I've been fine since and I've been talking up a storm!

Sorry it has taken me so long to write! I am slackin' here! I've had a great week in my Jakey sort of way. PT came on Monday and made me work really hard. My nurse came Tues, Wed, and Thurs. No major pooping incidences this time! OT came on Thursday since she was busy on Monday. I always love knocking on my tray as soon as I sit in my highchair. It is "our" game...I hear her voice, I knock to start the game! I did really good eating for her, a little gaggy because Mommy gave me apricots, but I pulled through and no puke was to be seen! YEAH for me! That is a huge accomplishment to go so many days puke free!

Daddy has been with me two nights this week when Mommy went to the hospital to see Maya and Holly. Miss Maya has an infection in her central line, so they are hanging out there for a few days. I haven't gotten to get my Holly fix because there are lots of sick kids up there and Mommy doesn't want me to catch anything since I have been doing so great! I even managed to get over my cold in just a week, so hey hey hey! Look at me go!

Daddy has vacation until next Friday, so we hung out today. Daddy took my bubbas to the dentist this morning and I tagged along with. Mom was busy at an appt. I think it's good for daddies to get a taste of the mommy life every now and then! No cavities yet for my bubbas! YEAH! Then when we came home, Mom and Dad went out to eat lunch and I even got some ice cream out of the deal. Then we went grocery shopping, and I smiled the whole time, especially when Mom was making my wheelchair go bump bump by popping a wheelie.

I am just hanging out this weekend, nothing too exciting going on, which is actually pretty nice. Please sign my guestbook to let me know you stopped by!

Love, Jakey

Sunday, January 30, 2005 10:50 PM CST

Hello everyone! We had a nice weekend. Lots of doing nothing, yet busy at the same time. I got to go to Holly's and snuggle for a little while on Saturday night so Mom and Dad could go out for awhile. They went to Daddy's holiday work party. It sounds like they had fun. I was sleeping on the couch when they got to Holly's and my eyes popped wide open as soon as I heard my mama. I sure love that mama! I give kisses and kisses and more kisses all day long.

Today we went to church. At one point, I psyched mom out a little and pretended I was going to puke. Of course it was during a really nice quiet part of the service. It's always fun to see how Mom's going to react.

This afternoon, I went with Mom to pick up Michael at his dad's house while Daddy and Devin went out ice fishing. You'll have to check out Devin's pics! I went shopping with Mom and Michael and saw Mommy's friend Dawn. I was acting all shy and didn't want to show her any of my tricks. A guy's gotta do that sometimes you know!

Tonight was the last night for my phenobarbitol. I have been on it since I was about 4 1/2 weeks old. I still take two other meds for my seizures, so hopefully, cross your fingers, this will be it and I can stay off the phenobarb for good! Feel free to storm the heavens with no more phenobarbitol prayers, do a little no more phenobarbitol dance, anything you feel like doing. This is a big monumental occasion here people! It appears that all 4 of my two-year molars decided to make their appearance at once, which isn't a great thing since teething has always seemed to produce an increase in seizure activity. The real test lies ahead, so please keep me in your prayers for continued seizure control. It's almost been a year since my last seizure!!! WAHOO!

Hope everyone has a great Monday, and leave me a note to let me know you were here!

Love, Jacob

Wednesday, January 26, 2005 7:09 PM CST

Good evening!

My wise friend Carolyn wrote: "YOU are what IS - a perfect child with a heart of gold. After all, it is the heart, not intellect and "normal" progress, that the Lord is looking at!" Thank you so much for knowing what IS.

I had a wonderful day, minus the snot that has invaded my nose. YUCK YUCK YUCK. I hate when I have a cold. It is no fun, especially when Mommy takes the handy dandy snot sucker after me.

My nurse Lisa came today and boy did I show her a neat trick! Just as she was getting me out of the tub into my towel, I decided it was the perfect time to let it go....I pooped down her shirt, her pants, and right onto her sock, leaving a little trail across the bath mat too. She looks at me with a smile and said, "What did you do Jakey?!?!?" and I gave her this "WHO ME???" kind of look. I think she fell for it!

Make sure you check out the pictures in the photo album. The ones of me and my mama were taken at Mayo for some advertising for The Ronald McDonald House!

Have a great day and leave me a note to let me know you were here!

Love, Jacob

Monday, January 24, 2005 5:35 PM CST

New Pictures Added!!!

We received the pictures Ronald McDonald House and Mayo took of us for advertising! Check them out!

I had a very nice weekend. We went to church on Sunday and I wore my new shirt from my Godmother Kelly! Don't I look handsome?!?!?

My PT was supposed to come today, but had to reschedule. My OT came though and she couldn't believe how good I am eating again! That stupid acid reflux was making eating pretty yucky, so now I am feeling much better! Everytime I'd take the spoon to take a bite, I'd hit my face and make a mess. I was laughing so hard! You can see my messy face on my pictures too! Even though I had a bib on, I had to change my clothes when we were done.

I have learned how to snuggle and give hugs so good now. I lay my head down on Mommy's shoulder and give lots of lovin'. I never have been able to turn my head quite right, so this is so special for everyone getting hugs from me!

Hope everyone is having a great day!

Love, Jacob

Saturday, January 22, 2005 9:19 AM CST

Good Morning! It sure is snowy here! We got lots of snow last night and it looks like we are getting some more! My bubbas are already outside playing, Daddy's shoveling, and Mom and I are hanging out in the house. The snow sure is pretty though!

We've had a quiet last few days. Wednesday, 3 of my nurses came at once! One of the new nurse's aides had to be trained a little more on how to take care of me, so we had lots of people here. I, of course, love all the attention.

Thursday, Devin had an eye dr appt. He picked out new glasses. Mom's not quite sure they are the cutest things in the world, but Devin picked them out and he is the one that has to wear them! So now we are hearing the daily countdown on how many days left until Devin gets his glasses. He doesn't forget important details like that, and won't let anyone else forget either!

Last night, Michael wanted to have a friend sleep over, but it was snowing too much already. The funny thing is, we met Corey's mom first. In fact, she was Michael's nurse when he had his tube put in his ear this summer! She asked him where he was going to school and then said that her son Corey was starting there too since they had moved over the summer. She told Michael his name and said to say hi to him if he was in any of his classes. The weird thing is, a few months later, Michael and Corey became good friends and then we linked him to his mom and told him about the conversation we had with her! Funny how things work sometimes!

Mom started a schedule with me (well not that she didn't have one before, but this one is written down) so that she remembers all the things the therapists want me to do in a given day. It has helped a lot and Mom feels on top of it! YEAH!

Note from my Mom:

Yesterday, brought a flood of emotions yet again....I should know these days will come, but somehow they catch me a little off guard, mostly because it can be one little thing that sets them off in an otherwise perfect day. I received a letter from the school district announcing their preschool screening. Attached, was a checklist of skills he "should" be doing. Before I even looked at it, I ripped it up. These forms do not apply to him and because he is in Birth to 3 already, we are not supposed to be mailed these forms. So, needless to say, it didn't make me too thrilled. Then I open a letter from a recent dr appt stating that Jacob is clearly microcephalic, extremely delayed, with evidence of brain damage and cerebral palsy/spasticity. It also said he had no speech and had some difficulty with drooling. It said there was little space for his g-tube since it sinks into his skin while he sits slumped over. While obviously he is microcephalic, extremely delayed, has brain damage and CP, he does not drool and he was jabbering the whole time he was in there! Guaranteed it wasn't words, but he was so happy and interactive when he was there! I just hate how some people write things....it sounds like he is a drooling blob all slumped over and non-responsive. It could have at least commented on how he was smiling and interacting during the appt. It makes me so sick to my stomach. Mostly I think because I just don't see him that way....he is my beautiful son. Yes he has LOTS of issues, but he is my son first who has come SOOOOO far from the days we were told he was going to die, that the meningitis was so severe, he'd never survive, especially since most of his brain is missing. How he'd never respond to any of us, how he'd be completely spastic, having continuous seizures, and be in a vegetative state. What I see is SOOOO much more than that. Yes, he will probably never walk, he may never say words, he may never do the things you and I find such ease at doing, but he is so much more than that.....

I hope everyone has a wonderful weekend! Please leave a note to let us know you stopped by!

Love, Karla and Jakey

Wednesday, January 19, 2005 9:27 PM CST

Hello everyone! Today, I got my new Bumbo chair. I absolutely love it! I can sit up really good in it! Mommy added pictures of me sitting in it :)

Today, I went to Devin's school for show and tell. He told everyone that I have spina bifida, my eyes don't see too good, I have a feeding tube, and I have half a brain. One of the boys said, "OH that's why his head is all squished over there!" :) The kids all thought I was really cute too. Devin said, "Even though Jacob has lots of problems, he is still very special." When it was question time, one of the boys asked if I was very brave. Of course Devin said yes :)

I have been doing so good since I got some new meddies for my yucky acid reflux. I am not gagging so much and I only puked two times this week! YEAH! It sure is nice for everyone.

I have started doing a lot more talking lately. I like to jabber in my Jacobese language and the best part is that sometimes I sound like I am saying sentences, sometimes it sounds like a statement, and sometimes it sounds like a question. It is so much fun to tell everyone what I am thinking! Tonight I started making some new noises that no one has heard before. It is so much fun when people talk back to me too!

Hope everyone is having a great day!

Love, Jacob

Tuesday, January 18, 2005 8:30 AM CST

Yesterday was a very busy day! It started when I decided to either A) pull my tube off, or B) maybe I blew it off with my fantastic poop, which meant that Mom had quite the mess to clean up in my crib. My jammies and onesie were soaked with pediasure. At first mom was trying to figure out why she smelled something like pediasure and a poopy diaper combined, and then she soon found out when she went to get me out of bed.

Devin woke up very crabby and didn't want to go to school. Somehow along the way, he missed his bus, so Mom had to bring him in. The -9* temperature was quite fun....Oh and then Devin says he "forgot" where his classroom was. The thought of mom walking through the halls with no shower, makeup and hair barely combed wasn't too appealing, so Devin had to quickly "remember." Needless to say, he came home fine, so he must have found it.

My PT came and I was doing some cool stuff. I was sitting on my new Pelletz Chair. Then, she laid me on my tummy and I was lifting my head up so good. Every now and then, I'd take a break, looking all cute at her of course, and laughing a lot too. She wanted me to hold up my head to the count of 5 and since I think counting is hysterical, I'd only get to 3 before I couldn't stand it anymore!

My OT came too and we tried on my new thumb splint. My right thumb tucks under and after trying many different kinds of splints, I hope this is the right one to help me out!

I took a nap, and when I woke up, my friend Trevor was here! He is just a little younger than me. He brought lots of cool toys to share with me. I even got lots of hugs out of the deal. He loves pushing me in my wheelchair too. Check out our pictures!

When my bubba Michael came home, a miracle happened! He found his jacket that he lost! We are offering a million dollar reward for anyone who can figure out how someone loses a coat when it has been below zero outside. At least the mystery is over, and he found it. Right where he left it, I guess. Right where Mom looked too....sounds a little suspicious if you ask me!

Today, my nurse comes over again. Mom is going to run some errands and exercise while I am being spoiled.

Hope everyone is having a great day! Thanks to everyone for signing my guestbook! I love having so many messages to read!! Also a big thanks to Hugs and Hope for sending so much happy mail. Me and my bubbas were so excited to get mail!!!

Love, Jakey

Sunday, January 16, 2005 11:09 PM CST

Hello everyone!

I had a very nice weekend, even though it is VERY VERY VERY VERY VERY cold outside!

We went to church this morning, and they had the cool praise and worship band. I love all the music! I was blinking when the drums were loud, but otherwise, I spent the whole time smiling.

Tonight, Mom and Dad were talking to me and I kept on saying, "HUH?" They laughed so hard at me, that I did it even more! They'd ask me a question and I'd say, "HUH?" again. It's always fun making Mommy and Daddy so happy.

Ever since I started on my new meddies, I've only puked once, so I am hoping this is the key! I hate puking...it makes me so mad that I scream and shake.

Tomorrow, I have PT and OT again. I'll let you know if I feel like cooperating. I've gotten really picky about eating lately!

I added some new pictures, so you will have to check them out!

Love, Jacob

Friday, January 14, 2005 8:51 AM CST

Happy Friday everyone! I have had a super busy week! Sunday, we left for the Ronald McDonald House. Holly and Maya came with too since Maya had appts just like me.

Monday, we dropped Holly and Maya at the clinic, and then went to check out some new splints. We ordered some new fancy ones that will be much softer than my old ones. We went back to the clinic to find Holly and Maya. We also met up with my favorite resident doctor, Dr Nickles. She was so happy to see me and thinks I am doing some really cool stuff now. We went out to eat together, and I even got some snuggles out of the deal!

That afternoon, I went to see GI. I have been having lots of acid reflux and yucky puke, so my mommy thought it was time to see her again. I started some new meddies and hopefully it will help. I hate puking. I get so darn mad!!! She didn't think we needed to do any other testing which was great because some of the stuff they want you to do really stinks.

We went to the mall after our appts so Mommy could buy Devin his Incredibles socks. My brother is in love with Dash. He wants his hair to be long just like Dash, but I think Mom is going to have it cut this weekend....he is starting to look like a girl! LOL

Tuesday, we had to bring my wheelchair in to get fixed. Then I had to meet with the dietician. She said I am getting to be a very big boy!!!! I weighed 28 lb 1 oz and I am 35 inches long! Everyone agreed that it was time to back down on the calories a little, especially since I've gone from a 12/18 month to a 2T/3T in just 6 months!!!

On Wednesday, we went to try on my new splints. They are super cool! Oh and they are purple! So far, they seem to work really good and I am styling in a different color than red and blue all the time! My wheelchair was fixed too, so I went to pick that up. Now I can recline again!!!

We came home yesterday. I went with Maya to see our pediatrician on the way home. Maya made a tent for me on the exam tape with the crinkly paper. I LOVE the sound of paper, so I was laughing so hard. Maya really loves me lately. We are becoming very good friends :)

Today is catch up day....that happens when we've been gone so long. My bubbas were so excited to see us when I got home! It's supposed to be a very cold weekend, so I think we will all just snuggle together!

Love, Jacob

Wednesday, January 5, 2005 10:03 PM CST

Hello everyone! It's been a few days since I wrote. We have been very busy again now that my bubbas went back to school and I started my therapy again. Monday, my PT and OT came. I really didn't want to work so much. Kinda stubborn actually. My OT brought a new cool toy called a Mac switch. She recorded "More applesauce please" on it, so that everytime I pushed it, she'd give me more applesauce. Well, it didn't take me long to make the connection between the button and food being put into my little ol' mouth, so since I was being sassy, I totally contorted my arm so that there was no chance in heck that I was going to push that silly old thing. My mommy and Laura found it quite amusing, especially when I'd start talking through my clamped teeth too just to make sure nothing else slipped in there by accident.

Yesterday, my teacher came. I got to touch a whole bunch of cool textures. Then she let me fingerpaint with Cool Whip. It sure was fun! And YUMMY too! We also made a cool wreath with my handprints.

Today, my buddy Trevor came over to play! I sure like him. And he really likes me too. In fact, he had to come and watch me take a bath, just to make sure the nurse was doing it right. Then he followed us into my bedroom to help me get dressed. He sure is a nice friend. I even got some hugs and kisses before he left.

My Birth to 3 coordinator came over today too to talk to mommy about transitioning into the big boy school next year! YIKES! We are going to have a meeting before school is over since my birthday is in August. There is lots of paperwork and things to think about with me starting there next year. Mommy said today that she never got a chance to think about me going to a big boy school and now the time has come to rejoice in that. :*)

Tonight, my bubba Devin and I played McDonald's. I had to ask the people what they wanted, Mommy helped me write it on paper, and then Mommy told me to tell Devin the order. He'd cook it all up, set it on my lap, and Mom would push me back over to the table to give it to my customers. We had lots of fun. It's so cool when my bubbas treat me like a normal kid and let me play with them.

I have been having lots of acid reflux, so Monday I get to see the GI doctor at Mayo. Maya has appts too, so we are going to stay up there together for a couple days. I have to get my wheelchair fixed and get casted for new nighttime splints. My legs have gotten so chubby, my old ones don't fit anymore!

I am also the featured child on Hugs and Hope this month. Our PO Box is 204 instead of 402. I think Mommy's lost it somedays! LOL Please see my address below and send me and my bubbas some happy mail!

Hope everyone is having a great week! Thanks to all of you who signed my guestbook! I love reading all of your posts.

Love, Jacob

Saturday, January 1, 2005 11:19 PM CST

HAPPY 2005 EVERYONE!!! I didn't get to count down to the new year, because I was fast asleep in my crib. But I did have a good day today snuggling with mommy....oh and puking and pooping. Such is the life huh???? Let me just say I am pretty gaggy lately and that mommy actually had to throw away a onesie because I was so poopy. HEE HEE!!!!

I am the featured child this month on Hugs and Hope. Please check me out!

In honor of the new year, I'd like to give a little recap of 2004:

This year sure has brought some amazing changes for me. The beginning of the year, brought a 4 day hospital stay because I was having so many seizures. With the help of our brilliant neurologist, we found out I was having infantile spasms, which wasn't the best of news, but we at least knew what we were dealing with. With that, came lots of steroid shots that my big brave mama did all by herself. Oh, and lots of rolls on my little ol' body! We were so happy to get rid of those stupid seizures right away, which from what I hear is pretty amazing stuff. The bad thing is after being on steroids, I didn't want to eat anymore and so little old me got skinnier and after much effort on everyone's part, I got a really cool tubie! It has been so nice for everyone involved in my care. I spent 5 days in the hospital that time. I have also been at the doctor lots of times, more than anyone wants to even count, plus now I have nurses coming over to my house too. It's lots of fun to play with them and they give mommy a little break.

I have done amazing things this year! Trying to feed myself, holding up my head better, trying to sit up, pulling my arms out of my sleeves, feeling faces when you hold me, giving LOTS of kisses, sitting in a bathring, getting a cool new wheelchair, getting lots of teeth, playing so much more and figuring out how to turn my toys on, signing more and waving bye bye when I want to, saying da da and lots of other Jacob language, and learning the fine art of getting my way.

I have had many cool experiences this year! Aside from all the yucky surgeries and medicines I've had to take, the numerous tests to figure me out, and all the doctors I've had to see, it really is fun going to Rochester, especially when we stay at the Ronald McDonald House. We always love the time we spend there with others. We even had a really cool interview with them for a 30th birthday celebration video shown at their convention and our pictures taken for some advertising. I won 2nd place in a national photo contest. We got to go on the radio to talk about how special I am for the Children's Miracle Network Radiothon. Mommy and I did a talk for the Birth to Three state conference. Mommy joined a coalition and the Family Support board to help advocate for kids just like me.

This year brought sadness as well....our buddy Tyler died in September from a seizure. His mommy used to take care of my bubbas when my mommy went to work and even took care of me a couple of times. We sure miss him....
Our buddy Carl died in November after a long battle with cancer. We saw Carl many times this year since we were often in Rochester at the same time. We sure miss Carl too....

Some of the best memories of the year though are spending time with the people I love....Holly and Maya moving from Michigan to Wisconsin in February, celebrating holidays with my family, celebrating Grandma B's 70th birthday and Grandma Lorraine's 75th birthday, spending time with all my aunts, uncles, and cousins at both parties, being sassy with my auntie Sandi everytime I see her, and snuggling with Holly, Crystal, and Amy....
Having my friends love to push me around in my wheelchair, just loving me for who I am, visiting with my Ronald McDonald House buddies...Lea, Dylan, and Patrick, spending time with Kelly and Carl, Holly and Maya, and visiting with Tracey and Brittany while at St Mary's, and getting to know all of you better through my guestbook and touching lives just being who I am.

Thank you for continuing on this journey with me and giving my family so much encouragement, understanding, and love. We couldn't do it without all of you. I'd appreciate it if everyone who reads this entry, signed my guestbook and wished me a Happy New Year full of GREAT THINGS!!!! Oh, and check out my pictures too!

Love, Jacob

Thursday, December 30, 2004 10:37 PM CST

Thanks to everyone who sent my mommy birthday wishes! Mom and Dad went out on a date, so I had a great time snuggling with Holly. The only problem was Maya thought she could actually laugh around me. I do not like when she laughs, so I screamed. Call me picky, but it drives me crazy!

We also went to Mayo on Tuesday. I got fitted for a new hand splint, talked to our PT about my stander, and got my wheelchair adjusted. I have to bring my chair back again so they can do some work on it. I also got to spend some time flirting with all my ladies. I saw two of my nurses at the clinic, then stopped by to visit at the PICU. Sorry we missed you Elisa! It's so cool how many of our nurses have signed my guestbook! We also had a photo shoot for some advertisement Mayo Clinic and The Ronald McDonald House are doing! I was charming of course.

Since my bubbas are off from school this week, we have been doing a lot of sleeping in. It feels great! Especially for my mama :) Michael has been with his dad this week, so it is just Devin and I hanging out. He can make me laugh SOOOO hard. You will have to check out my pictures. He even put sunglasses on me like Agent Cody Banks. I tell ya, that bubba of mine sure has an imagination!

Hope everyone is having a great holiday season!

Love, Jakey

Sunday, December 26, 2004 9:55 AM CST

Merry Christmas everyone! I hope you all had a wonderful holiday! We had a nice time at home. We went to Christmas Eve services at church, then came home to open presents! I sure loved my toys and clothes. I even tried to rip the paper a couple times, but I got so excited, I was shaking.

Christmas Day, we opened some more presents. Holly and Maya even came over for the day, so I got lots of Holly snuggles since Maya was busy playing with Michael and Devin. My bubbas and I had lots of fun playing with all our new toys!!!

Tuesday is my mommy's birthday! She loves me so much that she'd give up part of her day for appts in Rochester. We'll still have fun though!

Check out my new pics!

Love, Jacob

Tuesday, December 21, 2004 10:21 PM CST

Good evening everyone. We have had a busy last few days!!! Sunday, we went to church to watch my bubba Devin's Sunday School program. After church, we left for Rochester. We went shopping at the mall for a little while, had lunch and then went to see Holly and Maya. We played in the playroom, and I even sat in one of the chairs like a big boy and colored for the first time! Mommy helped move my hand back and forth, making a beautiful picture! It only took me a while to figure out that I could eat the crayons too. They were very yummy and made my teeth turn cool colors. Check out my pictures :)

We visited for a while before going back to the hotel. McDonald House was full, so we stayed at a hotel instead. I usually hate the pool, but this time I thought it was SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO fun!!!
I especially liked when my bubbas made big splashes. I laughed so hard, I could hardly catch my breath! I was splashing, kicking my legs,and I even liked to float a little.

Monday, we had to get up early for appts. I decided that 1:45 A.M. was a fun time to wake up and screamed until Mommy came and laid down with me. Needless to say, I was still awake at 4:00, but I think Mom was snoozing a little in between there sometimes.

I had an ultrasound and x-ray of my kidneys and bladder. Daddy came with me this time! It was fun showing him how big I am when I get these tests done. Mommy and bubbas got breakfast and did puzzles until I got done. Then, we went to get my tubie changed! My mommy did it this time. Bubbas had to watch too, and Michael was so very proud of himself when he didn't pass out.

We had a nice break for a couple hours, so we went to lunch, then Auntie Crystal called. She was at Club Med too so we met them and showed them where they could eat too. It was so cool to see Crystal and Paul there with me!

After lunch, I saw Dr Driscoll, my physical medicine doctor. She thinks I look FABULOUS and that I am working so very hard at so many things. We are going to continue working on eating, but she is happy that I am eating, so no pressure.

Dr Kramer, my urologist, thinks I'm peeing really good and since I haven't had any UTI's, I don't have to be catheterized yet! WAHOO!!! I can see him in 1 year. :)

Dr Kuntz, my neurologist came in and was so excited to see me too! She always smiles when she sees how good I am doing. She thinks I am amazing and look FABULOUS too! No one could believe how big I am now! I had to show off a little for her too of course.

Carma, our social worker, came and got my bubbas so they could go talk and play a little while. She is so cool too. After talking with Carma, we all decided to stay another night since it was so very slippery outside!!! Actually, I shouldn't say we ALL decided....Daddy wanted to go home, but Mommy said something about wanting to live to see Christmas.

We checked into our hotel and once again went swimming. It was SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO much fun! I laughed so hard again. Boy, I think Mommy needs to start taking me swimming more often!!!

My bubbas are so darn funny. Devin got an Incredibles costume at the Disney store and if any of you know how Devin is, he had to wear it to the hospital and clinic, mask and all. So of course everyone thought he was so funny. I think he likes the attention even though he'd never admit it. Then Michael talks to every person in the waiting rooms, like he's known them forever. I think there are many people now who know our entire life story.

We came home today, and guess what???? SO DID MAYA!!!! We are so happy she made it home! Mommy went over tonight to bring Pookie back. Maya was acting so silly!

I hope everyone is having a great week as we count down to Christmas!!! I sure can't wait to open presents!!!

Love, Jakey

Saturday, December 18, 2004 6:41 PM CST

Hey everyone! I am having a great day. I am busy pooping today, which is always a good thing if you know what I mean. I have found great power in this wonderful scream of mine. You should see the reaction I get. Hmmm....if I would have known it would be so good for me, I'd have tried it sooner! I have also found out how cool it is to talk all the time. You should hear me jabbering!

We were going to Rochester today, but there aren't any rooms at the Ronald McDonald House, so we will go tomorrow instead and stay at the hotel. My bubbas will love to swim, so that will be fun. Me on the other hand...I don't like the pool so much, but I am sure Mommy will try again, just to see if I like it this time. I have lots of appts on Monday, so please think of me. I see urology, neurology, physical medicine, social services, and the nurse. Oh, and my mommy gets to learn how to put a new tubie in!!! How fun is that?

We are going to have a family movie night, so I better go!

Talk to you later and please remember to sign my guestbook!

Love, Jakey

,llllllllllllllllllllllllllc mmmmmmmmmmmmmmmmmmmmm, vbnn
(That says I love you and go check out my new pics that my bubba Michael took!)

Thursday, December 16, 2004 10:17 PM CST

Hello everyone! The week has gone so fast! Mommy and I took Grandma Lorraine Christmas shopping today. I did fabulous except for at the end during lunch, I thought it would be fun to poop. Mommy was expecting a poop day, so she was prepared.

I went to the dr this afternoon since I was really crabby last night and have a cold. I was also acting like my throat hurt. Sure enough...I have a yucky throat. Not strep though. I hope it gets better quick. I weighed 27 lb 5 oz today!!! I really enjoyed talking to Barbara and Dr. Brumm. I hope they understood all the things I was telling them. Dr. Brumm spent a few minutes talking back and forth with me. I also had to show her "SO BIG!!!" She was very proud of me.

I got my haircut today! My friend Robin does such a great job! She makes me smile when she takes the buzzers out. I liked having my hair cut and combed so much that I started to drool. Boy did that feel good! Check out my pictures. I am finally getting some bangs :)

We are getting ready to go to Rochester this weekend. I have appts on Monday, so we are going to have some fun before my busy day.

Hope everyone is having a great week! I was so excited to see my cool nurse Laura signed my guestbook!!! We loved it when Laura took care of me. She was very cool :)

Love, Jacob

Monday, December 13, 2004 10:13 AM CST

Good morning!

Well, I finally did it much to my daddy's happiness....I said Da Da. Actually, I said, " Dee Dee Dee Da Da." While my mom was very happy I said this, Daddy couldn't help but rub it in her face. They are always joking about making me say Ma Ma or Da Da first. Mommy said that I can keep on saying "DO DO" until I get the Ma Ma down. Well, I say "MMMMMMM" all the time, so she isn't totally convinced that I am not ACTUALLY saying Ma Ma. Daddy meanwhile is grinning ear to ear.

We went to Rochester yesterday for Maya's birthday. Actually we kind of blew there...the wind was horrible. It has gotten to be kind of a sick joke, everytime we got to Rochester. It is either A.) Windy B.) Raining (or snowing in the winter) or C.) BOTH. You take your pick. These are the only driving conditions we know of while going to Rochester.

We had a super cool party for Maya with lots of presents, we decorated her room with streamers and banners, brought pizza for lunch so Auntie Holly could eat, and then she even had some cool singers caroling in the hallway who came back to sing just for her. It was really fun. We always enjoy our time with Maya because she is just too funny and cute. Mommy sat on her bed playing with her almost all day so Holly gave me lots of snuggles. I even stayed up all day long so I didn't miss anything!

I am waiting for my PT and OT to come today. I have been working really hard on sitting up this week! I need to keep using my arms to help me and work on endurance. I know I can do it!!!

Check out my pictures!!!
Love, Jakey

Some thoughts from my mommy:

The longer Jacob is with us, the more we live in this new world of challenges, some things are becoming more apparent to both Dave and I. We share in the sorrow of realizing his head isn't growing in any kind of proportion to his body, that the prediction of his face growing, but not his head, is becoming more and more apparent. We are sad when we have those little reminders of things Jacob isn't yet enjoying like other two year olds...like the fact I bought him a Barney toothbrush. I know it's a Barney one, but he doesn't seem to care like his big brothers always did. The sadness in his lack of sight for all the beautiful Christmas lights and decorations we see. His excitement is not apparent for these things, because he just simply doesn't see them or know they are there. The constant struggle in forging forward in eating table foods, in being too big for some equipment, but being developmentally ready for it. The knowledge that when he opens his presents, we have to have them all prepared with batteries, untwisting all the ties ahead of time, so that he can enjoy his toys by feel and sound, since his sight just won't be a factor in his enjoyment. These things continue to pop up as reality for us. We feel sad, maybe even shed some tears over these things that we have "lost," but in return we are able to look at these things and treasure them in our hearts....
The sound of his voice when he wakes up in the morning...his beautiful song he shares with us from his crib to let us know he is awake and ready to go!
The way he reaches up to kiss me a million times when I am holding him, just to show how much he loves me.
The way his face lights up when he hears his bubbas playing, his daddy's voice...
The smiles which are almost ALWAYS present on his face...yes, he really is happy all the time.
The laughs we hear over funny noises. Burps, farts, sneezes, hiccups, are some of his favorites. He also loves when you bump his wheelchair up and down, jump off the couch and fall on the ground like you are hurt, and many other crazy noises...
The determination he has to try...the willingness to work with therapy, to do his best, and the WONDERFUL smile of sheer pride when he does it.
The love we receive from him is incredible. The joy of knowing we have him to love. Knowing we have been blessed surely outweighs the sadness that sometimes creeps into our hearts....we love you Jakey :)

Saturday, December 11, 2004 11:34 AM CST

Hey everyone! Check out my new pictures. I am looking mighty handsome if I do say so myself! There are 2 where I am actually sitting up by myself and using my arm to PUSH!!! I am getting so big. My PT said I can't leave Birth to 3 until I am sitting up. I better get working on it, I only have 8 months left before I am 3 and go to a new big boy school!!!

I have been talking so much lately. I ask questions, get excited, make simple statements. Mom says she can hear lots of intonation (big word huh?) in my voice and someday she'll understand everything I am saying. I especially like growling at people though! I like licking my skin too and making this awesome noise. Kinda sounds like a cat you could say. It drives mommy nuts after a while, so I like to do it even more.

Speaking of which, I am really good at being stubborn too. I like to clamp my teeth shut so no one can feed me. I like to hide my face when mom wants a picture. Aren't I clever????

Tomorrow is Maya's birthday!!! She is going to be 6! Please wish her a happy birthday.

Please remember to stop by and leave me a note in my guestbook. You guys have been slackin' lately!!! If you haven't written in a while, please sign it today!!!

Love, Jacob

Tuesday, December 7, 2004 3:04 PM CST

Hello everyone! I've had a pretty happy week. Saturday, we went up to see Holly and Maya at Club Med. We scared Holly because she didn't know we were coming!!! It was nice to get some snuggles again. Plus, I poop everytime she holds me, so I felt much better after our visit!

Sunday, we went to church and it was so fun. I love all the music, and I smile all the time. I also love to give Mommy kisses in church. Grandma Lorraine had come for the weekend too, so she came to our church with us. It's always fun seeing Grandma!

My OT came over yesterday, and we worked on feeding. I am really good at eating when she lets me hold my Nuk brush. I chew on it in between each bite. Mom and the OT are trying to figure me out. I don't make a lot of sense sometimes, but I sure am cute!!! Gotta keep everyone on their toes you know!

Sue, my teacher, came this morning and we sang some cool songs. Oh and she brought this cool drum and I loved hitting it. I am getting so smart at knowing when things are in front of me. I am reacting quicker and quicker each time. I even signed "MORE" so Sue would turn the music on again!

Our family is getting ready for Christmas. We put up the tree this weekend. It is very pretty! Mommy's all done shopping and mailed out Christmas cards yesterday. Now, we are enjoying doing some activities together each night to get us all in the Christmas spirit. My bubbas really like it and I do too!

We ask that you keep Holly and Maya in your prayers as she continues her stay in the hospital. We also ask that you remember those families who are celebrating Christmas without their child this year....our friends' Damien, Carl, and Tyler...

Much Love,
Jacob

Thursday, December 2, 2004 8:37 PM CST

Hello everyone! It's me Jakey. If you didn't get a chance to read Mommy's journal from yesterday, please check it out in the journal history.

I had a great day! My PT came over and I worked so hard using my arm to help me sit up. I actually pushed down with it many times, which for a kid with high muscle tone in my arms, I think it's pretty awesome! Mommy laughs at me sometimes because I make such funny faces when I work so hard. I even have to add a few grunts too just to let everyone know how hard it is!

After PT was done, the whole Birth to 3 Team came to discuss how I am doing, what new goals we want to set, things we need to work on, and what goals I have accomplished. It was great fun showing off for everyone. My vision specialist was here too, so we talked about more ideas to help me with eating since my vision is limited.

One day, I was being crabby and so Daddy was singing to me. I didn't stop crying, so Mom told Dad to sing a different song since that one wasn't my favorite anymore. So he sang another one and I still was crying. So Mom said to try again, that wasn't my favorite anymore either! Daddy said, "Does Jacob have a greatest hits album or what???" Which turned into a laughing fit on everyone's part. Thus came the idea to make my own CD. Mom completed it today. It has my Jacob song from Songs of Love, You are Special by Barney, If You're Happy and You Know It, The Wheels on the Bus, Bingo, Baby Bumblebee, and lots of other cool songs that I love the best. It is a collection of Barney songs, songs my teacher sings with me, and ones I love to listen to in the van (believe me, I think Mommy is turning cartwheels that she doesn't have to only listen to that one CD anymore!) She even put You Are Special and If You're Happy and You Know It on a few times since I really like those songs! When the music started, I was just so darn happy. I was shaking, smiling, biting my fingers...the excitement was just too much! Check out my cute pics to see me!

Hope everyone is having a great week! I am going to help put up the Christmas tree this weekend. Don't you think I'll be a good helper??? I'll tell everyone how it needs to be done! You know...with a whole lot of "DEEE DEEE's" and "DOOOO DOOOO DOOO's" and "NNNNNNNNN's!"

Love all of you!

Jakey

Wednesday, December 1, 2004 7:58 AM CST

Some thoughts from my mama today....

Our little buddy Carl is being laid to rest today. Our family so wishes we could be there, but too many complications here to make it a reality. I am very sad that we won't be able to come, but we will be there in spirit. It amazes me, being in this "world," our world of disabilities, disease, cancer, dying....it's so different than my world before Jacob. Yeah, I knew kids who died and it was sad, but this just brings it all so much closer. When you meet these families, share the bond of knowing your child may not survive, it does something to your heart and soul. Your relationship starts at a different level immediately. There are things that don't need to be spoken, just because you KNOW. And with that, comes a deeper, truer relationship.

When we found out that Jacob was going to be born with issues, we sought out shelter for our family during the stay at the hospital. It was then that we found Ronald McDonald House. At the time, I thought the whole concept was cool, then as I stayed there and it became my home, it became so much more. The bonds you form with people are incredible. Nothing that can ever be put into words, just a feeling. Words don't do it justice actually. When Carl died, an amazing thing happened....the whole Ronald McDonald House family, the whole Mayo family, surrounded them. Every site I read mentioned Carl's death, every family who knew them, signed their guestbook, our "family" made plans to go to the funeral....but then I think, this shouldn't surprise me. That is what the spirit of the Ronald McDonald House, the spirit of the families you meet, is all about. Being there for one another...ALWAYS.

Love, Karla

Tuesday, November 30, 2004 8:46 AM CST

Hi everyone! Hope everyone is getting ready for Christmas! We are all excited here, especially us boys! We love presents. We are getting our tree this weekend, so that should be cool!

We had a quiet weekend. Yesterday my OT came and worked on feeding. I am so stubborn sometimes. Mom fed me sketti on Sunday night and let me tell you, that was NASTY! Mom said I carried on and on, well, I didn't think I was that bad, but yucky! Mom gave me some yogurt too and I ate that all gone!

I went to the dr yesterday too. I am 27 lb and 33 3/4 inches! I am getting so big! We are going to have to adjust my calorie intake so I don't get too big. I have gained 9 lbs since June! I had my liver function and potassium level checked and everything was great. Dr Brumm thought I looked different, like I am really growing up. I think I look more like a 2 year old now and not such a baby. I am starting to wear 3T clothes too. Poor Mom is having a hard time keeping me in clothes now!

Continue to keep Carl's family in your prayers as they celebrate his life tonight and tomorrow. Also keep Maya in your prayers during her stay at Club Med.

Love, Jakey

Saturday, November 27, 2004 2:05 PM CST

UPDATE: I ask you all to keep Kelly, Tom, and their family in your thoughts and prayers. Carl passed away last night in his Daddy's arms and is now dancing with all the angels in heaven. We will miss you Carl!

Friday, November 26, 2004 4:17 PM CST

Happy Friday everyone! That crazy mom of mine dragged me out in the dark to go shopping. I don't quite understand it, but Mom said she does it because it's "fun." It was for the most part an okay day. One benefit of having me with is that we get the good parking spots! I got lots of people telling me how cute I was, because of course I did lots of smiling. Then there were some others that like to say I look sleepy. That bugs Mommy. I'm not sleepy, just have a special look because I am a special person. Sometimes I am just trying to figure out what all the sounds are around me. Now if I yawn, THEN you know I am tired!

It looks like Christmas will soon be here! The countdown begins! Notice my ticker just above to see how many sleeps until Santa comes!

Tonight, we are going to go visit my friend Angelina and her baby brothers. It should be fun. The grown ups are going to eat pizza, I'll just settle for smelling it.

The other day, I was giving Mommy so many kisses, well I got so excited that I accidentally bit her too. She told me, "NO! NO!" and hurt my feelings. I cried so hard. I have never cried like that before, but Mommy gave me some love loves and then I was fine.

Maya continues to be in Rochester in the hospital, so keep her in your prayers as they try to figure out how to prevent these frequent hospital stays and get her home for her birthday! Also keep Carl in your prayers as he continues to battle his cancer. There are so many kids who have touched our family so greatly...families we never would have met if it wasn't for me! Mom likes to tell me that even when things are taken away from us as such, there are so many things God gives us back in return to make it even more sweet.

Remember to stop by and sign my guestbook and check out my pics!

Hugs to all,
Jacob

Friday, November 26, 2004 4:17 PM CST

Happy Friday everyone! That crazy mom of mine dragged me out in the dark to go shopping. I don't quite understand it, but Mom said she does it because it's "fun." It was for the most part an okay day. One benefit of having me with is that we get the good parking spots! I got lots of people telling me how cute I was, because of course I did lots of smiling. Then there were some others that like to say I look sleepy. That bugs Mommy. I'm not sleepy, just have a special look because I am a special person. Sometimes I am just trying to figure out what all the sounds are around me. Now if I yawn, THEN you know I am tired!

It looks like Christmas will soon be here! The countdown begins! Notice my ticker just above to see how many sleeps until Santa comes!

Tonight, we are going to go visit my friend Angelina and her baby brothers. It should be fun. The grown ups are going to eat pizza, I'll just settle for smelling it.

The other day, I was giving Mommy so many kisses, well I got so excited that I accidentally bit her too. She told me, "NO! NO!" and hurt my feelings. I cried so hard. I have never cried like that before, but Mommy gave me some love loves and then I was fine.

Maya continues to be in Rochester in the hospital, so keep her in your prayers as they try to figure out how to prevent these frequent hospital stays and get her home for her birthday! Also keep Carl in your prayers as he continues to battle his cancer. There are so many kids who have touched our family so greatly...families we never would have met if it wasn't for me! Mom likes to tell me that even when things are taken away from us as such, there are so many things God gives us back in return to make it even more sweet.

Remember to stop by and sign my guestbook and check out my pics!

Hugs to all,
Jacob

Wednesday, November 24, 2004 10:13 PM CST

Hello everyone! Yesterday, we got the joy (or laughter if you want to call it!) from watching my bubba Devin and the rest of the Kindergarteners do some dances. Quite entertaining. Especially when they did Skip to My Lou. Let's just say, not everyone knows how to skip. LOL The Turkey Tango was my favorite though!

My bubba Michael had a friend sleep over last night, which was lots of fun for both Devin and Michael. Michael is so good at sharing his friends with Devin, which really makes Devin happy.

Today, my nurse came over and gave me a tubby. I sure love those! Daddy came home, and Mommy and Michael took his friend home, and then they went to see Maya in the hospital. She is at Mayo now because she needed a new PICC line :(

My mom has some words to say to you all:

Tomorrow is Thanksgiving, a day to give thanks for the things we are blessed with. Our family feels blessed for many things, of which most of you already know, as I tend to share that with the world! Sometimes, too much from what I gather. I have been informed that I am trying to make myself look as if I am worse off then everyone else, that no one has it as bad as me. That I stress too much about not taking things for granted. I just can't win no matter what I say I guess. If people truly know me, they know this isn't the case at all. But I am not going to let some opinion stop me from sharing my son with others. No way.

There are many good things happening to us. Signs of God's great love and promise to be with us throughout this journey. I feel it. This week, we received 2 cards in the mail, saying that they had read our article in the paper and wanted to share some of the spirit with us by buying us our Christmas tree. That Jacob was a gift to us and we are giving a gift to our children by being good parents. It brought tears to my eyes. It was simply signed Someone Who Cares. Two separate cards...two signs of caring. The spirit of those who care is amazing.

This past Saturday, I had the experience of attending a funeral for a friend of mine I met while attending La Leche League when Devin was a baby. She died from breast cancer at the age of 37 with a 4 year old son at home. How incredibly sad, yet a happy day for Tammy to finally be free from the pain and rejoice in heaven. Please keep her son Gabriel in your thoughts as he continues to live on without his mama.

Hope everyone has a wonderful Thanksgiving!

Love, Dave, Karla, Michael, Devin, and Jacob

Monday, November 22, 2004 12:48 P CST

Hello everyone! I know....I'm a slacker. We have great news though! My buddy Maya is home! She came home on Saturday. I was so happy to see them. Mommy and I brought Pookie back to their house, and I got my Holly snuggles.

Devin is getting so big now that he is in Kindergarten! He knows his letters, he's copying different words, learning to read a couple words, he learned his initials, he's trying to write in cursive like big bubba Michael, and HE LEARNED TO TIE HIS SHOES!!!! Devin asked me if I'd please post that exciting news on my website and show his pictures too. So go check them out!

I had therapy today and I worked so hard! Guess what I did?!?! I was sitting up and I pushed up with my arm! I have never done that before! I am getting so big and strong. I even wanted my right arm to work, so I'd grab it with my left. All that happened was I fell forward, but someday I will get it with my right arm too! You just watch and see!

I was so tired from working, that I decided to gag and puke for my OT when she was feeding me. Oh well...Gwen my nurse came and gave me a bath, and now I am ready to sleep.

Hope everyone has a great day and a very Happy Thanksgiving!

Love, Jacob

Tuesday, November 16, 2004 10:32 PM CST

Hello everyone! We had a nice quiet weekend at our house. Then yesterday, I had OT and PT. I worked hard, but I am being a little more stubborn lately, letting them know exactly how I feel about all this work stuff. The PT was talking about controlling the tone in my arms. I am so tight, especially when I get excited. My stupid nervous system is telling my arms to do one thing, while I want to do something else. I have to figure out how to tell my muscles what to do. I am going to keep on trying and trying though!

Today, I went to Mayo again. We visited with Holly and Maya, I caught up with all my buddies at Club Med, and we had a good day. I especially liked seeing Warren, the chaplain today. He's always so cool. I got to see one of my OT's there too. Please keep Maya in your prayers as she continues to struggle with issues. Maya seemed to be in pretty good spirits today. Mommy and Maya were busy cutting together today! Maya looks a little like Edward Scissorhands. She's kind of a maniac with scissors!

We saw the nephrologist today. She said I'm doing great! The calcium in my urine is lower, which is great so I hopefully won't get any more kidney stones. My potassium is a little low though, so I have to take some through my tubie. Dr Monaco is so cool. She talks to me the whole time and Mommy tells her what I want to say. I really like her because she thinks I am very special. I like when people talk to me like I am important!

On the way home, Mom let me listen to my CD. Did you know that I can listen to my CD 5 times between Rochester and my house??? How cool is that!!! I don't think Mommy thought it was as cool as I did. In fact, at one point, she thought she could turn her music back on. Well, I let her know a thing or two about the fine art of music. If You're Happy and You Know It and Five Little Monkeys are much better than any of that stuff she likes to listen to.

I was so happy to get home tonight. Devin and Mom were playing the Incredibles, I was baby Jack Jack and Dad was Mr Incredible with some sound effects every now and then. Michael was Freezo and boy, was it fun!!! Everyone was doing all these cool noises and I laughed so hard! Then bubbas put me in the laundry basket and ran with me through the house. I laughed so hard I peed my diaper! Oh I tell ya...I sure love my bubbas. I am so happy when they play with me!

Hope everyone had a great day and remember to sign my guestbook!

Love, Jakey

Saturday, November 13, 2004 5:45 PM CST

NEW PICTURES!
Hey everyone! It's me. Little slow on the update! I had a great week. My nurse Lisa was here on Wednesday and Thursday. She is always so much fun because she talks to me the whole time she is here. I really like that.

Thursday, my vision therapist Sheila and Birth to Three coordinator Kristi came over. Kristi had to hold me and play with me. I was being a little stubborn when it came to playing with my toys. I was trying to trick her into thinking I didn't know how to do any of my toys, but Mom told her my secret. Darn it anyhow! So then I decided to play and it really was fun! Sheila thinks my vision is about the same, but my development has really blossomed! Sheila is going to look for some ideas on feeding since my vision really affects my eating abilities. For those of you who haven't seen me in person, my brain doesn't process what my eyes see, so I don't look directly at you, I don't track objects, in fact I really can't see much of anything, but I do look out the corners of my eyes sometimes, and I am starting to explore with my hands more. I love to grab Mommy, Daddy, and bubbas faces when they talk to me. Lots of people will try to figure out what I am looking at too, which always brings a lot of comic relief. I think it's because my eyes do look around a lot and are very expressive, they just don't see so great!

Yesterday, I went to Mayo to get some blood drawn and a urine collection. I am seeing my nephrologist (the kidney dr.) on Tuesday. She is always so cool when I am there. She talks to me and asks me lots of questions. I tell Mommy what to say and she tells her! Me and Mom are quite the team you know!

While we were at Mayo, we had lunch with my favorite nurse Deb. She is my Spina Bifida Clinic nurse. She always makes me smile. I get so sassy when she talks to me. I like to show off for the ladies you know. She gives Mommy so much support and makes her job easier. It's nice to have such a wonderful additional "family."

We also went to see Maya Paya. She was SO happy to see "Miss Karla." Hopefully she will come home next week. We sure miss her when she is in the hospital! Maya was looking much better than she did last Sunday. Please continue to keep her in your prayers!

I was on the front page of the paper yesterday! You can check it out here Jacob, the Miracle Boy

Mom read on another site that Carolyn, who so wonderfully signs our guestbook is battling some of her own health issues. I ask that all of you keep Carolyn in your prayers as she is an amazing woman who has touched many people with her thoughtful words, her giving spirit, and her genuine prayers.

Love, Jakey

Tuesday, November 9, 2004 10:09 PM CST

NEWS: I have a P.O. Box now so if anyone wants to send me or my bubbas some happy mail, we would really love it! My bubbas are always wanting mail too!

Hello everyone. I am finally getting sleepy, but I'll write quick before I go to bed. Yesterday was my busy therapy day! I worked so hard with PT. I was laying on my tummy and pushed on my arms for the very first time! It was a tiny tiny push, but I did it! Maybe someday I will be able to push my whole body up on my arms! OT came too and I showed her how I can eat a Cheeto. I ate about 1/4 of a Cheeto. Someday, I will eat the whole bag like my bubba Devin does. Hopefully he'll still want to share with me!

Today, my teacher Sue came over. She had lots of fun songs that we sung together. I get so excited and sign MORE MORE! Oh, how I LOVE my music!

I was so tired from all the playing, OH and all the crying I was doing early this morning about 2 o'clock (OOPS!) so I took an early nap. My nurse Gwen came, and I was sleeping. Mommy thought I'd wake up soon, but when she got back, I was still sleeping! I slept for 5 hours today!

Tonight, Mommy thought I should try some cheesy potatoes all mashed up. I don't know what the heck she was thinking. She must have thought I'd actually LIKE them or something....I did the gagging, puking trick, but it didn't work. She made me eat some more. Boy, I don't see how anyone can eat vegetables. They are NASTY! Now give me some fruit and you've got a deal! Mommy asked me if I wanted more, and I shook my head NO. Daddy asked if I wanted more, and I shook my head NO. Michael asked me if I wanted more, and I shook my head NO. Devin asked me if I wanted more, and I shook my head NO. Finally Mommy gave up making me eat it. I wanted to say, "IT'S ABOUT TIME!"

I was busy helping Mommy wash dishes tonight! She put me in my stander and gave me a plate with some water on it. I washed it up really clean! It was fun splashing and licking the water off my hands.

After all my hard work washing dishes, I laid on the floor on my tummy. Mommy was trying to get me to push on my arms again. I did just a little and got really mad. Bubba Devin stuck up for me. He got in Mommy's face and told her to stop, that I'd had enough! Way to go Devin! I heard Mom tell him that I have to keep trying and trying and sometimes I will get mad, just like when Devin learned how to pump on the swing. I hope Devin didn't fall for it. I need someone on my side when Mom makes me work too hard!

I hope everyone had a great day! Please remember to keep Maya in your prayers.

Love, Jake the Snake

Monday, November 8, 2004 7:55 AM CST

Good morning everyone! I am in my glory this morning playing my piano, watching Barney, ahhh what more could one baby want? Actually I am not much of a baby anymore. I am getting so big! I have been showing off so much lately! My bubbas like to play together and do all that cool superhero, boy type spitting noises. Well, I decided that I was going to join in with my AWWWW AWWWW's! I am very loud. Not to mention very cool. I even squealed for the first time too. Mom can't believe how LOUD I am!

Saturday, we went to Geoffrey's, which is like Toys 'R Us, for their grand opening! There were so many cool things there! We even got to see Spiderman! Devin was so excited. He got shy all of a sudden because he was SO excited. You'll have to check out our pics!

We also went to see The Incredibles on Saturday! It was SO cool. Devin's convinced that our family can be The Incredibles right now. Mom, Dad, Devin as Dash, me as Jack Jack and Michael as Syndrome. Mom suggested that Michael could be Violet the older sister, but for some reason, that didn't fly too well! So now Devin is on a hunt for who Violet could be. Holly told him Maya could be Violet because she has long dark hair, but he didn't think Maya was big enough to play the part. You see, Devin has definite ideas about many things. Speaking of Devin, he lost another tooth! He couldn't wait to go to school today so he can show everyone!

Saturday night, my buddy Maya was transported to Mayo. Her tummy hurts her so bad by her new tubie. We drove Auntie Holly's car to Rochester yesterday for her and visited for a while. We were sitting eating lunch when a resident doctor came by. She asked my mommy if she was Karla and then asked if this was Jacob. Mommy recognized her from before and the doctor said, "I remember Jacob from the PICU! Oh my gosh, I'm going to CRY!" She told Mommy that I was definitely a miracle and that I was so sick before....she was so happy to hear that I was doing so good.

Daddy let me listen to my CD all the way to Rochester yesterday, so on the way home from Rochester last night, Mommy thought she could listen to Kenny Chesney. Well, let me tell you! HMMPH! I was not very happy. I screamed AWWWW at her until she turned that stupid music off and put mine back in. Then I smiled and raised my eyebrows to let her know just how it was supposed to be. Aren't I tricky?

Mom and Devin were playing with this cool tube you stretch out and it makes funny noises. Everytime they did it, I screamed AWWW at them. Everyone was laughed so hard at me. Then Devin started singing "I'm a little acorn brown" and when he was done, I'd sign MORE MORE! So he'd sing it again. I am really letting everyone know what I want!

Hope you all have a great day and make sure to keep my special Maya in your prayers. We hope they find out what the problem is and she can come home soon.

Love, Jakey

Thursday, November 4, 2004 5:24 PM CST

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That is Jakey talk for hello everyone! How are you! It's me Jakey! I have had a super de duper week! Halloween was fun! Monday, I had Auntie Holly babysit me so Mommy could go to a meeting. Silly me fell asleep after the OT was here, so she didn't get very many Jakey snuggles. Poor Holly.

Tuesday, my PT came and played. I am doing so good. I am getting stronger all the time, with an attitude to go with it! Can you believe my mom makes me do so much work lately? She makes me pull myself up to sit now. She used to help, but she said something about the game being over now and so I have to do all the work! HMMPH. My nurse Gwen came over Tuesday and I loved it.

Wednesday, we went to Moms group at church. I had to show off and drink from my cup a little. I am getting so good at it. No bottles all week so far!!! I had my nurse Judy come over again while Mommy went out to have some time by herself!

Today, another new friend came over to play with me. She is getting her nursing degree, so she's volunteering some time for a project by playing with me! It was so much fun having all the attention! Then my nurse Lisa came over today and played some more! I was so busy kissing her. She gave me my cup, but I was so darn tired after such a busy morning, that I fell asleep, so Lisa put the rest of my pediasure in my tubie.

Tomorrow, I have an interview with a newspaper guy about Ronald McDonald House. How crazy crazy crazy lately! Check out the pictures from my Ronald McDonald interview. I also have some cool leaf pictures too. Pretty cheesy I am!!!

Take care and write me a little note in my guestbook!

Love, Jacob

Sunday, October 31, 2004 9:42 PM CST

BOO!!!! Happy Halloween! I hope everyone had lots of fun today! Last night, we went to the University of Wisconsin-La Crosse to trick or treat at the dorms. They also had some fun games my bubbas played and even had a haunted house that bubba Michael and Daddy went into. I had fun just looking cool in my Superman costume!

We went to church today, then I took a nice nap so I'd be ready for trick or treating! We went with Holly and Maya to the mall and then walked around Holly's neighborhood. My bubbas looked very scary! It was lots of fun! I liked walking through the leaves the most. It was so funny!

Maybe next year I can get some candy! I can't eat it yet, but my bubbas said they'd share suckers with me.

Love, Superman!

Thursday, October 28, 2004 10:11 PM CDT

Boy, have I been slackin'! It's been too many days since I last wrote. Grandma and Marvin stayed until Tuesday morning. Marvin, Devin and Daddy were all sick. Grandma drove home and then got sick within a 1/2 hour of being home. Michael and Mommy got sick on Wed, but not very bad at all. I have been fine. Just a little extra poop, but nothing to worry about!

I have been pretty stubborn lately when it comes to drinking my bottle, so Mom decided to try a cup tonight. I did pretty good! Just one little gag otherwise, I was awesome! 6 whole ounces BABY!!! How is that for cool? Maybe I am ready to start a cup a little too..Mom's going to have to work on that with me!

My bubbas had today and tomorrow off from school for teacher conferences. Mom still has all her hair intact, so that must mean it was a good day! They always like to play together, sometimes cooperatively and sometimes not so very nicely, but today was a fun day!

Saturday, we are getting together with my friends to paint some pumpkins. That should be lots of fun! I might even have to try it!

We will go trick or treating on Halloween. I am going to be Superman! My bubbas are going to be some scary dudes. Naughty mommy I know, but oh well.

I noticed my guestbook has been pretty empty lately...where is everyone??? I miss ya! Let me know how you are doing!

Love, Jakey

Monday, October 25, 2004 10:38 PM CDT

Hi everyone! It's me Jakey. I've been so busy this weekend! We went back to the radiothon on Saturday so that my daddy could meet everyone. Mommy talked a little again and my bubba Devin was making me laugh so hard that everyone heard me laughing on the radio! I had to flirt with Jacklyn again and give her lots of love. It's so much fun being loved by all the ladies!

We also went grocery shopping and had Grandma Lorraine over for lunch on Saturday. Nothing else too exciting went on that day.

Sunday, Grandma B and Marvin came to visit. My grandma has a boyfriend! How funny is that!

Today, I was busy, busy, busy! I got my flu shot this morning. You know, I am so darn brave, I just jumped a little. Crying is for babies. I'm a big tough guy now...steroid shots do that to you ya know? I even got on the scale today and guess how much I weigh now??? 25 lb 8 oz! I am so darn big!

When we got home, Grandma B was busy sewing curtains for our dining room. They turned out very woo woo! All 3 of my therapists came over today! My PT, my teacher, AND my OT! I was so darn tired by the end of it...in fact I spent most of my time being sassy and refusing to cooperate! I'll teach them who's boss. Darn people think a boy should work on a Monday morning. HMMPH! My vision therapist is coming tomorrow. It will be nice to hear what she thinks about me.

Holly and Maya will be coming home tomorrow too! That means we'll have to give them their cat back, but it will be so nice to see them again and get some snuggles!

Hope everyone is having a great week and thank you for everything! You are all the best :)

Love, Jakey

Friday, October 22, 2004 4:50 PM CDT

I have had an awesome week! Yesterday, we went to Rochester to get my wheelchair adjusted. I am getting so big! I also got to see Maya and my friend Brittany which was so cool since I haven't seen her for over a year!

We also stopped at the Ronald McDonald House. When we won the photo contest , the photographer said we could donate her proceeds to a charity of our choice, so we picked RMH!

Today, I was the star on the radio! Well, actually my mom was, but she was talking about me. We talked on 3 different stations about how cool I am for the Children's Miracle Network Radiothon. You can check me out on the CC106.3 website as well as my cool pics with the DJ's on my photo page! Everyone locally can donate to CMN and say it is in my honor. The phone number should be on the CC106.3 site. You can also hear my song on the radio, on either CC106.3, Eagle 102.7, or Magic 105. It is on within this hour (better go check the radio!) and will be on I believe tomorrow, probably around 2-3.

My bubba Devin lost his first tooth yesterday too, so you'll have to check his pic out too!

Love, Jacob

Wednesday, October 20, 2004 12:04 AM CDT

Our family has had so much excitement lately! Mommy and I presented at the Birth to 3 Conference, I won a photo contest, (check me out under Little Heroes!) we were interviewed for the Ronald McDonald House, and on Friday, we will be on the Children's Miracle Network Radiothon at 9:00! If any of you are in the La Crosse area, we will be on the La Crosse Radio group stations.

Our family is so excited that we can share how God has blessed us with others. Some may wonder why we are being chosen for all of these experiences or how we are so lucky to have received these rewards...our family thinks of it this way. Mommy and Daddy will probably never get the joy of me looking at them in the eyes, watching me crawl, walk, say their names. They will probably never get to watch me go off to college, get married, have children of my own...they may never get to watch me grow old. But they can share my story, GOD'S story, of love. They can have the joy in knowing that part of my purpose is to touch others, to teach others to enjoy the simple things in life, to feel God's presence...I think somehow our family has paid their dues, and I think we deserve it.

Love, Jakey

Monday, October 18, 2004 6:28 PM CDT

Hello everyone! We had a nice weekend in Rochester! We saw my buddy Maya. It's nice visiting someone in the hospital instead of being the patient. Maya is trying to match my record of the longest hospital stay. Crazy Maya was on a cutting frenzy. You should have seen the scissors and paper flyin'! I think we should call her Maya Scissorhands.

We stayed at the Ronald McDonald House on Saturday night. It was fun ordering pizza and just chillin' out watching a movie. We had to get some beauty sleep because on Sunday, we were interviewed by a production company for a presentation going to be shown at the Ronald McDonald House's 30th birthday party! I am not sure how much footage they will use of our family, but it was cool.

Today, my PT and OT came over! It was fun playing with Lori. I tried out a new chair thingy she had and I also got my stander adjusted since I am getting SO tall! My OT Laura tried some noodles and carrots in a baby food grinder with me. Can you say YUCK YUCK YUCK?!?!? I don't know what the heck Mommy and Laura were thinking giving me such junk! Finally, they gave me some yogurt and I just couldn't eat it fast enough! I had to eat fast, so they wouldn't take it away from me and give me that crappy stuff again!

My Auntie Sandi, Uncle Bill, and Matt are at Disney World! I wish I could have come with so I could say hi to Barney at Universal Studios! Make sure you say hi to Barney for me Matt!

Love, Jakey

Friday, October 15, 2004 10:41 PM CDT

Hey everyone! I had a great time at the Birth to 3 conference yesterday. Mommy helped give a presentation and I was her cute little prop! My teacher Sue was there to help take care of me. I think Mommy did a great job and everyone learned a little more about how our day usually goes around here (crazy as it is sometimes!)

Today was a nice do nothing kind of day. I was sure to fuss just enough though so Mom wouldn't think she had it too easy. I am really good at that. A different nurse came today and boy was she fun! I love getting held and snuggled and she was definitely good at that!

We are going to see Maya tomorrow so we had to do some errands tonight to get ready for our weekend trip. I sure miss Maya when she's not here. We took her kitty to our house yesterday so he wouldn't be so lonely. Pookie finally made an appearance tonight. Our dog Annie was really nice to him too!

Hope everyone has a nice weekend! Stop by my guestbook and say hi!

Love Jakey

Wednesday, October 13, 2004 5:52 PM CDT

Hello everyone! Sorry I haven't written for a few days. Busy busy busy I am!!! Sunday, I was busy getting lots of snuggles. I got to see Holly and get some snuggles. I also got to see Carl's mommy Kelly and get some snuggles. I also finally got to meet Margo and Corey! Mommy's been talking to Margo for a long time now! Corey is as cute as a bug's ear Mom says.

Monday, my OT came over to feed me. I made sure she didn't forget that I am in charge. I was very good at using my new spoon. It is curved so it goes into my mouth easier. Laura says everytime she comes, I make nice changes, so Mommy was very happy to hear that!

Tuesday, my teacher Sue came over. She always has so many fun toys to play with. I am signing more all the time now. I want to play so bad! Kelly watched me for a while because Mom had to go get beautiful at the salon. I started gagging when she was feeding me my bananas. Mom told me that I am not supposed to show those tricks to other people! Sorry Kelly :( My nurses came yesterday and today. I love all of my nurses so much. They are good snugglers.

Tomorrow, me and Mommy are going to talk at the Birth to 3 Conference! We are both excited :) Our family is doing an interview this weekend and next Friday too! Pretty soon, you're going to see my name in lights! LOL

Hope everyone is having a great week. Make sure you keep my friend Maya in your prayers.

Love, Jacob

Sunday, October 10, 2004 7:59 AM CDT

Good Morning everyone! I was up bright and early this morning, singing in my crib. I decided to start coughing and pretending I was going to puke. Always gets the mama and the daddy runnin'!!! HEE HEE! I am just too tricky sometimes. Now I am playing my piano...my normal morning ritual. I know as soon as my butt hits the chair, just what Mom's going to put in front of me.

Friday we went and saw my buddy Maya. She wasn't doing so hot that day. I hate to see her sick :( I did get my Holly fix though. I tell ya, she gives the best snuggles. I sure have lots of cool ladies in my life who love to give me snuggles...what every boy wants huh???

My bubba Michael had a friend come over on Friday. He was telling him all about me and he was so proud of me. I sure love that.

Saturday, we went shopping and Mom decided to turn my carseat around!!! Oh my gosh. It is the COOLEST thing to sit like a big kid! I was so proud of myself! Michael made mommy put the mirror just right so he could see my face too. My eyes got so big and I was so cool. You'll have to check out my picture :)

Today, we are going back to Rochester to see Holly and Maya again. Hopefully, there will be another visitor there too, my buddy Corey! Our mommies talk on the internet all the time. Corey has Mito just like Maya. It should be a fun day!

Hope everyone is having a nice weekend. We need to go get ready for church, so I'll talk to you later!

Love, Jacob

Thursday, October 7, 2004 6:35 PM CDT

Keep the prayers coming for my buddy Maya! She was transferred to the regular peds floor, but she is acting weird today, not her normal self at all. We are all worried about her!

I had a nice morning...I played my music, I ate some nummies (tutti fruiti baby food!), watched Barney and got lots of lovin' from my mommy. Pretty much everything a boy could want. My nurse Gwen came to play. I ate my whole bottle for her without throwing up on her! I didn't want her to think her day was going too good, so when she was getting me ready for my bath, I peed ALL over my shirt, bed, then she moved me to the changing table and I peed some more! It was lots of fun!

My mommy wants to get on her soap box here for a minute:

****Oh what a day! I called Walmart Friday to order some pediasure from the pharmacy. Well, come Tuesday, I still hadn't heard if it was in and when I called, they said it was overlooked. I said, "We are out!" The pharmacist said that I shouldn't have waited so long to call! WHATEVER. So I go in yesterday to pick it up and guess what? It wasn't ready because they didn't have a UPC for it. Come back tomorrow they say! I said I need it now! So I got one case. Today I come in and asked if it was ready and all I got was sighs, huffing and puffing, and "Oh I forgot!" I was livid and let them know it. Put it this way, I wasn't very nice! So finally they get a UPC for it and when we get up to check out, the cases were put together under 1 UPC instead of 2, so more waiting...I told them I will not be doing this every month and if they can't get it right, I will be bringing my business elsewhere. They all acted like it was such a pain and that it was such a bother. WHATEVER. I then went on to tell her that I have enough going on in my life with Jacob's issues to deal with, without having problems getting his formula too! That people should do their own job. She promised it would be better next month...who knows if I want to deal with them again. UGH UGH UGH!****

Okay, back to my normally happy programming! LOL So when Mommy got back, I was taking a really nice long nap. I got up and started playing again. Then bubbas came home. Devin was singing a silly Halloween song and saying BOO! It was so funny! I laughed and laughed, so hard that I couldn't catch my breath!

I am wearing a 2T outfit today too. Talk about spiffy! I can't believe how big I am getting! To think I was only 9 lb at 6 months old :)

Have a great night!

Love, Jakey

Wednesday, October 6, 2004 9:07 PM CDT

Just a quick update tonight. Please pray for my friend Maya. She had surgery today and is very sick right now. She was admitted to the PICU, my old stomping grounds. I sure hope she feels better soon!

I have a bad cold again. YUCKY. I am not feeling so hot, so I took a 3 1/2 hour nap today. My nurse was here, but I slept the whole time! I was pretty fussy. Mommy told me she was getting tired of my WAHtitude! LOL!!!

Tonight, I did something really cool! I sat in the bathtub ring and even splashed for the first time all by myself! It was so cool! You'll have to check out my pictures! My bubba Michael also took a funny picture of me. I look really silly!

Take care everyone and have a great night! Don't forget to say a prayer for my friend Maya.

Love, Jakey

Tuesday, October 5, 2004 8:04 AM CDT

Good morning everyone! I hope you are having a great day! I am busy playing with my piano and telling Mommy what to write. Oh how I love my piano. I am very musical you know!

We had a nice quiet weekend. Daddy went over to Grandma's house on Saturday to help her with some things. Mommy and I hung out and played. Then we went to Auntie Holly's for a movie. I got lots of hugs from Holly too.

Sunday we went to church. After lunch, Mommy went shopping, so Daddy and I hung out for a while. I just took a short nap because I didn't want to miss the excitement of the Packer game! Daddy was screaming and yelling like most Daddy's do when they watch a football game. Unfortunately they lost. I am sure Uncle Bill will have something to say about that!

I took a big boy tubby with my bubba on Sunday night! I just love to lick the water off of me. It is so much fun. Mommy held me so I wouldn't slip, but I did so good! Check out my pictures!!!

I also tried some mashed potatoes for supper on Sunday. It took a lot of convincing but I finally did it. Mom's on a mission to get me eating regular food. I like to gag a lot, but she told me to get over it. So much for sympathy!

Yesterday, my OT came over to feed me! I remembered exactly who she was and why she was here, therefore the spoon was MINE!!!! I wouldn't eat unless she let me help. I took huge bites too and only gagged a little at first. Boy, I am so darn smart!

Today we have a lazy day. My nurse is coming over to give me a tub and feed me.

Have a great day and leave me a note to let me know you were here!

Love, Jakey!

Friday, October 1, 2004 9:44 PM CDT

So did anyone miss me?!?!?!

We've had a busy week at our house. Mommy's trying to catch up after being gone last week at Mayo and the Ronald Mc Donald House.

I had PT and OT on Monday. They worked me really hard. I even got a little mad at my PT for making me work. She told me, Sorry no sympathy! Mommy had to agree with her too. Darn Mom. Grandma Lorraine came to snuggle with me for a while too on Monday, so it was a nice time visiting with her. I just love my grandmas! I also got the pleasure of meeting Alma, a cool lady from Washington Monday night! Her daughter Deanna and my mommy talk on the computer, and she was in Minnesota visiting some relatives, so we got to meet her! She gives the best snuggles :)

Tuesday, my teacher Sue came! We always do so many fun games together! Then my nurse came and I had so much fun smiling at her. I love all the attention I get all the time. Tuesday night, we went to Oktoberfest and my bubbas got to go on some rides. Michael rode everything, even the zipper! We think he's absolutely CRAZY!

Wednesday, we went to Moms and More. My nurse came when I got home. We had another fun cuddling day. I got tired and fell asleep for the 2nd time that day! I think all my work caught up to me!

Thursday, I got to snuggle with another fun lady! Mommy's friend Ann babysat me so she could go with Devin to the apple orchard. Poor Devin was trying to bite his apple and a stupid bee came and stung his finger. Thankfully Mommy was there, because Devin doesn't do so good when things like that happen! The stinger and it looked like part of his butt were still in his finger! OUCHY!!! Mommy did get some cute pictures of Devin pre-beesting, so you'll have to check them out!

After my snuggle and smile fest with Ann, we went to Devin's school for lunch! I just love my bubba so much. One girl was so funny. She said to Mommy, "He has one of those big heads, huh? I have a small head!" Another Jacob came up to me too and I smiled so big at him. He thought my bumpy head was funny. I just love all the attention everyone gives me.

Mommy and I picked up Holly and Maya and went to Rochester. I tried out a super duper way cool stander. It has like this cool farm print on it and everything!!! I was soooooo cool in it. I lifted my head and everything.
Maya had to try out some cool wheelchairs, so we dropped them off and went to get my Spidey AFO's fixed. They are working slick now. We went back to pick up Holly and Maya, and wouldn't you know it, my pathetic mother had to stop and talk to everyone in the hall. I swear, she knows way too many people at Mayo! Of course, I got some attention out of the deal, so that was okay. I was so impressed though how good Maya knew how to drive a wheelchair! She certainly was stylin'!

Today, my friends Blake and Levi came over because their mommy had to go to the hospital. She has MS and was having a flair up from being overly tired and stressed out. Please keep Auntie Crystal in your thoughts and prayers. We love her so much!

Mommy had lots and lots of running around to do. Of course, I didn't want her to have it too easy, you know us babies got to keep our mommies on their toes. First, I decided to take a nap, so that when I woke up, it would be pouring rain. Then I decide to have a poop day. You know, the kind where every diaper has poop??? So we got in the van. Mommy comes to take me out when we got to our first stop, and I had puked all over my coat, my bibs, and my shirt. Usually Mom changes me on the back hatch of the van, but because it was raining, that wasn't going to work. Just imagine my mommy trying to get her butt in the backseat with me to change me. Believe me it wasn't a pretty picture. So then I decided it was the perfect time to poop again. After much cleaning up, we were ready to go! We made lots of stops, I had lots of fun smiling at everyone and then it was time to go home. You'll have to check out what the rain did to my hair!

I think it will be a quiet weekend. I will really try hard not to shake stuff up around here since I did a good enough job today. Have a great weekend everyone!

Love Jaker, Jaker, troublemaker

Sunday, September 26, 2004 8:54 PM CDT

Hey everyone! It's me. I am having a great weekend. We went to the Oktoberfest parade yesterday. I loved all the fire truck sirens and the loud noises. We came home and then we went grocery shopping. Nothing too exciting.

Mommy woke up with a lovely case of pinkeye. Go figure...all the years she worked with kids and all of us having it many times, she never caught it. Now she does. She probably caught it at Mayo or Ronald McDonald...who knows!

I have my uncle Chuckie here visiting. Us boys think he is great fun. Mom and Dad thinks he drives them crazy. Well, at least they are still sane for the time being. That might change in the matter of seconds.

Today I went to my buddy Trevor's party! He's two like me :) It was lots of fun. Thanks for inviting me to your cool party!!!

Tomorrow I have PT and OT coming. Mommy gave me some little cheerio-like things yesterday. They were little little little tiny tiny pieces, but I did it! I only gagged a little. I am going to show my OT tomorrow how big I am!

Take care everyone and have a great week!

Love, Jacob

Friday, September 24, 2004 8:10 AM CDT

I'm home!!! We had a nice visit at the McDonald House. Wednesday, we didn't have any appts, so Mommy actually thought she could sleep in. I wanted her to know who was still boss, so I woke up at 4:30 AM and decided to scream every time her eyes started to close. Hee hee :) I'm pretty sneaky aren't I?

After Mommy realized sleep just wasn't going to happen, we got up and went to the mall. Then we went to see a movie and I slept the whole time. That night, we had a house dinner, and I decided to shake it up a little by coughing and puking. Fun huh??? There was a nice lady there who helped Mommy clean me up and she even held me for a while. I just couldn't stand all the coughing and kids making noises, so we didn't enjoy ourselves too much, but the food was yummy!

Yesterday, we got my chair adjusted since I am getting so big. We went back to clean up our room and I took a nap so Mommy had to do all the work. We left just in time for a storm to come through. There is something about Rochester....everytime we go it is either raining or very windy!

Today, we are taking it easy. Nothing exciting except picking up my medicine. Tomorrow, we might go to a parade! That will be fun!

Hope everyone is having a great week! I was a little sad when I saw that not many people signed my guestbook when I was gone. :(

Love, Jacob

Tuesday, September 21, 2004 6:35 PM CDT

Hello everyone! I am writing from the Ronald McDonald House! We got here on Sunday, after a very fun weekend with my Auntie Sandi and Uncle Bill. Holly and Maya are here too so Maya and I have been having lots of fun! She likes to push me in my chair. I love the bumps the best, so I always giggle, even when she runs me into the wall.

I had a very busy day yesterday seeing all my doctors. I had an x-ray of my hips first, then they had to take some more of my blood. They also wanted some pee, so Mommy put my pee bag on first because she knows me, I get mad from the poke and I pee. Sure enough, we got 2 things done at once! Yeah!

So then I went to see Deb, my favorite nurse. She thought I was looking mighty cute and except for my cold, I looked and sounded great. Dr Driscoll came in next. She is the physical medicine doctor. She was so excited to see and hear about all my new tricks! She said I am doing super and to keep up the good work.

I took a little lunch break and tried to take a nap, which isn't always fun in my chair because I like to be part of the action. Finally, my eyes wouldn't stay open any longer and I snoozed.

After lunch, we had an ultrasound of my kidneys and bladder. I laughed so hard when the lady pushed the button for the table to move! It was so funny!

Next, we went back to talk to the social worker. I had to flirt with her a little. Then we saw Dr Kuntz, my neurologist. I think I nearly gave her a heart attack because I have gotten so big since she saw me last!!! She was so happy to hear all the good news, especially that I haven't had any seizures! YEAH for me!!! She told mommy that there is always the chance that they will come back, but for now, things look good, and since I have gained so much weight, we had to adjust some medication. After 3 months, I may even get to wean from one of them!

Orthopedic surgery came in and said my hips look really good. My right hip is slightly worse than the left, but still in normal range. My hip sockets are getting deeper. It must be from being in my stander everyday! He said no surgery for me right now, so everyone give me a high 5!!!

This morning, we all walked back to Mayo for more appts. We saw the dietician and guess what???
:::DRUM ROLL PLEASE::::

I AM ON THE GROWTH CHART!!!!!!!! (Stand ovation demanded here please!) I am 25% for height and weight combined!
We discussed feeding issues and Mommy and the OT are supposed to start trying some more foods with me. I have a high gag reflex in my cheeks, but as far as the dr can tell, I have little risk of aspirating, so the plan is to continue forging ahead with the food!

I ate some lunch, then saw the PT and got my new AFO's. We are also going to try to get my very own stander so I don't have to borrow one anymore.

I decided to take a nap, and from what mommy told me, I got a new tubie in today. I don't remember any of it though, because I was SLEEPING the whole time!!!

I slept until my next appt with the nephrologist. Exciting news there too!!! NO KIDNEY STONE! It disappeared...it's gone!! I must have peed it out sometime I guess. Who knows. Nothing in my bladder either. The only concern is that the calcium levels are still high in my urine, which just means my potential for forming stones is still there. So we increased my diuril and will come back in 3 months.

My mommy is very happy with how the appts went and wants everyone to know some things she has learned this week...
We are so blessed for many things:
*I can protect my airway. I cough and gag, which sometimes gets sickening when I puke, but it's a good thing!
*I can clear my own secretions. I cough, I swallow my spit, all those good things!
*My seizures are under control!
*I can swallow food and not aspirate it!
*I am getting stronger everyday!
*I am happy...I interact with others, smile, laugh, and enjoy my life.
*God is using me to make other people happy. I heard so many times today that I made people's day just being who I am....

Love, Jacob

Friday, September 17, 2004 8:53 AM CDT

Good morning! I first want to extend a HUGE thank you to everyone reading my page. I have been very blessed to find out about a few people who have been reading my page...people I never knew about! I encourage others of you who have never signed my guestbook, to either sign or email my mommy. It is so cool knowing that people are out there supporting us, praying for us, and are amazed at what a miracle I am! Your entry or email brightens Mommy's day!

Yesterday, I hung out with Mommy in the morning, then I got really sleepy, so I took an early nap. My nurse Gwen woke me up! I was so happy to see her since she is so much fun to play with! I have been getting better at eating my bottles for everyone as long as they let me help hold the bottle.

Mommy was getting supper ready last night and was making such a commotion with all the pans in the cupboard. I thought that was the funniest sound! Mommy put me in my highchair and gave me a pan and a spoon, and I made the prettiest music!!! Check out my pictures! Can't you just hear me playing???

I've learned a nice new trick. I have a lovely yell that seems to bring Mommy running. It's kinda like a "Hello?!?!? Aren't you going to come and pick me up?!?!?" kind of yell. So far it has been pretty effective :)

I woke up with snot all over my face and arms...needless to say Mommy was a little grossed out. Lovely...I have a cold AGAIN! Which can only mean one thing...the snot sucker is coming back out. yeah.

Today, my teacher Sue is coming to play and Kristi, the Birth to 3 coordinator, will be with her! I want to show Kristi all my new tricks! I think she'll be impressed :)

We are going to my Auntie Sandi's for her birthday party!!! I am so excited!!! I get to watch my big cousin Matt play a football game too. I am going to cheer really loud for you Matt!

On Sunday, Mommy and I are going to Rochester. I have appts on Monday and Tuesday and we'll come home Wednesday. Daddy will be in charge of the bubbas. Hopefully Devin doesn't give him so much grief getting up in the morning like he does Mommy. I think Mommy's ready to scream in the mornings with old crabby britches.

Hope everyone has a great weekend and I'll update when I get to Rochester!

Love, Jacob

Wednesday, September 15, 2004 10:08 PM CDT

Hey everyone! It is me, Mr Cuteness. I have been a busy guy today!!! We spent the first part of the morning with the Moms & More group at church. There were some cool babies there who played with me and then one made me cry, but I was pretty brave. I just cried a little. After we were done there, Mommy put me in the van and we drove to La Crosse where I got to talk to a really pretty lady from the radio station!!! As soon as I saw her, I showed her "SO BIG!" The cool thing is, she even knew what I was doing! I had to show her my best smiles and flirt a lot. I even shook my rattle for her and dropped it a couple times. She picked up on my game really fast! Then she asked if I liked Barney and I got all sassy with her, teasing her by shaking my head no. Mommy talked to her too and told her all about me. There is going to be a Children's Miracle Network radiothon in Oct, so my story will be on the radio! How cool :) I think the lady was very impressed with me and how smart I am considering all the stuff I have been through!

My nurse came today and I finally ate for her because after all this time, people are figuring out I want to HOLD the bottle too! So as long of they will let me have my hand on it, I decided to eat today. I sure am showing everyone who's boss lately. Oh and tonight Mommy let me feed myself ALL by myself. Was I excited! I had a death grip on my spoon just in case Mommy changed her mind...I wasn't going to let her get it from me! She had to help scoop the food up, but otherwise, my old tongue would come out and I'd lick it first, then put it in my mouth. I was a little messy, especially when I realized how much fun it was to bang my spoon when lots of bananas were on it, but hey....I'm just a baby remember??? So overall, I was pretty proud of myself. Not so bad for a kid like me!

Love, Jacob

Monday, September 13, 2004 5:58 PM CDT

This has been a sad week for our family. We all feel so sad about Tyler. Mommy went to the funeral on Friday, while Holly babysat. See what happens when you let Auntie Holly babysit me for a while??? She dresses me up in a goofy purple Tinky Winky outfit!!! How cute am I??? You'll have to check out the Barney pictures she took of me too. Can you just feel the love???

We had a nice weekend. Mommy left me with Daddy and went to rummage sales on Sat. She was gone for a very long time. She came back and got me while Devin went to a birfday party for his buddy Colt. Then she went running around some more. Darn moms I tell ya!

Sunday, I was in my glory back at church. The music was really cool this week because we had our praise and worship band there! I was smiling and cheesy the whole time. My friend Sharon came over in the afternoon and babysat me so Mommy and Daddy could go on a date. She is a nurse, so she knows lots about me, my tubie, and loves to play with my bubbas. I didn't want her to think I was too easy to take care of, so I puked on her. Hee hee!

Today, my PT came over and played. She thinks I am getting so big! Then my OT came over and worked on feeding me. Last week, she let me help, and I wasn't about to let her forget that! That darn lady thought she was going to feed me by herself! No way!!! So I closed my mouth up really tight and refused to open up. But then she let me hold the spoon with her and I'd eat. 4 times she tried to feed me all by herself and every time I'd refuse. I was ready to scream , "Get the hint already!" but then Mommy said, "He definitely wants to help!" Smart, smart mom. She took some pictures of me eating too!

The Packer game is on tonight. Sorry Uncle Bill, even though I was born in Minnesota, it's in the blood. Go Packers!

Love, Jakey

Thursday, September 9, 2004 10:19 PM CDT

Check out my new pictures. I am so dang cool in my new highchair!!! Mommy has been thinking about getting me a highchair, but knew that I wasn't ready to sit in one. She never even thought about looking at them to see if they had shoulder straps now! And sure enough...there are some that do!!! They have so many new fancy dancy things now. As you can tell in the picture, I am also learning how to feed myself!!! I surprised everyone the other day by shoveling in the food. Mommy just had to help me so I didn't shove it down my throat, but I am doing so good!!! Yeah for me!!!

We went to Rochester today to get my new AFO's fitted. I am going to have SPIDERMAN AFO's!!! Mommy told the nice man that made them for me to be prepared for a certain 5 year old to come begging him for his own pair....I wonder who Mommy's talking about?!?!? Could it be the same bubba that was begging for a wheelchair and saying it wasn't fair that he could walk and I couldn't?!?!

Mommy and I had lunch with my super cool nurse Deb. Of course I had to do a lot of flirting and showing off...just part of my job you know. Tough, tough life I lead. Afterwards, Mommy went shopping for some clothes for herself! That never ever happens! I spent my time flirting with the salesclerks. Like I said, tough, tough life.

We went to see Tyler tonight...funeral is tomorrow. Miss you buddy!

Love, Jacob

Tuesday, September 7, 2004 10:25 PM CDT

What a day!!! First, my teacher Sue came over. We played so hard! She was trying to teach me how to drop some little Easter eggs into a bucket. It was so fun. I was pretty good at it to for my first time! Oh and the cool thing is I signed "more" 2 times on purpose!!! I think that just may be my first word :)

After all the excitement of playing with Sue, I was kinda tired, but the my OT Laura came. She was helping me use my Nuk brush. I thought it was fun to hold it, and I even brushed it back and forth in my mouth. Then Mommy brought us some pudding to taste on the brush and YUMMY! That was so cool! I kept putting it into my mouth and when Laura didn't do it fast enough, I went after it with my mouth, just like a little bird. Everyone was laughing at me and thinking I was so big! If they'd only let me try to feed myself earlier! Hopefully they are catching on that I am much smarter than they think sometimes!

My nurse Judy gave me a bath to wash all the nana pudding off me. Then we snuggled in the chair for my bottle, but I was pooped! Before you know it, I was snoring. So much for the bottle! I think Mommy snuck into my bedroom and put it into my tubie when I was sleeping. She's pretty sneaky like that!

Tonight I got to see my bubba Michael's new school! He is in middle school now and thinks he's pretty hot stuff! I really liked meeting all his teachers and seeing all his classrooms. I even laughed a lot for bubba, just to let him know how much I liked his school.

We got some sad, sad news yesterday. Our friend Tyler became an angel. He was almost 14 and was very special just like me. His mommy Penny took care of my bubbas when Mommy used to work. Our family has many special memories of Tyler....the way he'd always ask for a hug, want to know who was picking up the boys from daycare, or say the funniest things. Once he said he couldn't go to school because he had spring fever. Or the time he saw Michael's Reggie White Packer jersey and said, "Hi Reggie!" Or how he'd always have to nurse his doll when Mommy would nurse Devin when she came to pick him up. Then was the time we were visiting and Tyler smelled me and said I had pooped my diaper. Actually he just wanted to help Mommy change me! Tyler loved Bob the Builder and spent many hours playing Bob. Mommy played Bob quite a few times with Tyler...she'd have to call Bob on the phone, help fix stuff...Penny, I wish we could fix it. I wish we could make it all better and Tyler would come back to you. I wish you didn't have to go through all this pain, but until we see you again Tyler, fly high friend....We love you.

Love, Jacob

Monday, September 6, 2004 8:54 AM CDT

Hi guys! You'll have to check out the top of my journal. Mommy helped me update it!

We've had a really nice weekend! My uncle Chuckie is here visiting and he isn't driving Mommy crazy which from what I have gathered is nothing short of a miracle!!! On Saturday, Mommy, Devin and I went to Holly's so Mommy could get her Big Brother fix with Holly. Daddy, Chuckie, and Michael all went to the races. Mommy thinks the races are stupid. She only likes to eat the pretzels there! I decided it would be fun to spend my night pooping at Holly's house. I must have left quite an impression on her, because she had dreams of me pooping that night!

Yesterday, we went to church. I just love church! All the singing, prayers....they just make me smile and laugh. I spend the whole time in church smiling. Sometimes I smile so much that I distract the people behind me. They are watching me more than listening to the pastors! OOPS! My mommy and daddy say that I know that I am a child of God and I am worshipping and praising him in my own way...pretty smart aren't they?

I went to visit my buddy Angelina yesterday. She was giving me kisses and nose rubs. I'd smile at her and she'd smile back at me. She has 2 cute baby brothers, twins mommy calls them. They cried a few times which made me so upset. I don't like when other babies cry. Mommy said I need to get over it. So much for compassion!

I decided to get up very early this morning, 5:30 AM. I was laying in my crib, talking and talking. I wanted Mommy to know I was awake, so I screamed for her, then laughed when she walked in my room. Darn lady thought she was going to go back to bed, but I had other ideas, so I would cry everytime she was just drifting off to sleep. Pretty sneaky aren't I? Finally she decided to just sleep in Devin's bed, right next to mine, so that she could talk to me when I needed her.

I hope everyone has a nice relaxing day. It is supposed to rain all day here, so I guess our plans for the beach aren't going to happen.

Love, Jacob

Friday, September 3, 2004 10:54 PM CDT

Hi guys! I am feeling much better! I think I had some yucky bugs in my tummy that were making me feel so sick. Poor mommy gets so worried when I get sick like that. I scared her so bad before, that it's hard not to worry when I get a fever. She never was so worried about my bubbas! I'm glad Dr. Brumm is so good about seeing me right away. She's the coolest!

Michael is having lots of fun at middle school. Devin started Kindergarten today. He had a very fun day. When Devin was waiting for the bus, he told Mommy to start crying now. Little snot. Mom took pictures of my bubbas on their first day(s) of school. She took two of Michael and more of Devin, but it's not because she likes Devin more. It's because somehow I think Michael would be a LITTLE embarrassed if Mommy followed him out to the bus with the camera! Mom was teasing him that if she forgot to give him a kiss in the morning sometime, that she would have to run out onto the bus to give him a big smooch! She's so funny sometimes!

Yesterday was Grandma Lorraine's 75th birthday!!! We had her over for supper last night and then tonight, Mom and Dad invited her out to eat, but the surprise was that lots of other people were there too!!! Lots of my cousins were there, my great aunt and uncle, my uncle Chuckie, and Grandma's neighbor. It was so cool to see Grandma so happy! My cousin Lydia had to try out my wheelchair. She thought it was pretty cool, so we traded spots....she sat in my chair and I sat on her mommy's lap! You'll have to check out the pictures of Grandma's party and silly Lydia sitting in my chair!

Hope everyone is going to have a nice Labor Day weekend! Drop me a note to let me know how you are doing!

Love, Jacob

Wednesday, September 1, 2004 8:46 PM CDT

Boy, have I had quite the last 2 days!!! First of all, we went to see Maya in the hospital at Mayo yesterday, the one I spent so much time in. Mommy was saying hi to everyone and Auntie Holly was ready to close the door because my mommy was driving her crazy! LOL I saw the PT and OT yesterday. The PT looked at my AFO's and nighttime splints and said they were made wrong. So we will go back next week to have them redone. We will also have the dr write a letter so I can get my own stander and not borrow one anymore. Then we saw the OT. She splinted my right hand so my thumb can sit in the right place. I thought that was so cool. I also think the splint is fun to play with and give me some time, and I'll learn how to take it off!

I went to sleep last night, and then woke up at 1:00, crying and crying. I wish I could tell mommy what hurts. Everytime I would fall asleep, I would get owies and start crying again. Then I started to poop and poop. Boy, I kept Mommy busy. Daddy was sleeping the whole time of course and never even heard me. He must be deaf, because I was so loud! I got really hot all of a sudden with a fever. Mommy was worried. She laid down with me after bubba Michael got on the bus for his first day of middle school. We slept for an hour and then I started crying again.

Mommy called the dr and she brought me there. Devin was getting tired of me crying and said, "You can go over the speed limit! I don't see any cops!" He is so darn funny! It looks like I have some infection somewhere. The dr said I had a little in my urine, so they gave me a shot of antibiotics, and will talk to Mommy tomorrow. They also did some cultures of my blood and urine, so we will see if any funky bugs start growing. I hate funky bugs, so hopefully they stay far away from me!!!

I have been very sad, tired, and yucky feeling. Hopefully tomorrow will be better. I did learn a new trick today though! I shake my rattle and then drop it on the floor! Mommy says, "WHAT DID YOU DO?!?!?" and I laugh. She gives it back to me and I do it again. It is a rather amusing game if I do say so myself. Mommy is so impressed that I am so smart! That is a really big deal she says. My doctor and nurse thought I was pretty cool too!

Mommy and Devin missed Kindergarten orientation today, so they are going tomorrow. Devin is really excited to go to school on Friday!

Remember to sign my guestbook! I like seeing who came by to visit!

Love, Jakey

Monday, August 30, 2004 9:23 PM CDT

Hey everyone! It is me...Mr Cuteness! I had a busy day today! Michael had to be at the hospital really early today to have his tube placed in his ear. He was very brave and so was Mommy. We got to try out the new surgery building at our hospital. It was really cool! Devin was so excited because they had donuts and chocolate milk in their waiting room. I can't wait until I can eat donuts too, because they sure look yummy!

My OT came today when we got home. I had to show her how good I can shake a rattle now. I am so darn cool if I do say so myself. I am figuring out so many new cool tricks lately! Laura also helped me eat some babyfood. I sure like to gag a lot, but I think I did a little better today.

I woke up with a snuffy nose today and that stupid mom came after me with the booger sucker. I was so mad at her! Tonight, I cried and cried and cried. I made sure I screamed extra loud to make her realize just how mad I was at her. Then she had to nerve to sing, "If You're Happy and You Know It" to me. Does she THINK I look happy?!?!? She just shoved a stinkin' thing up my nose! UGH Mommies sometimes!!!

I have some pretty cool news! When I was just 1, I had my picture taken by Mainly Kids, a photography studio in
La Crosse. The photographer entered my picture in a contest and I won 2nd place!!! How cool is that!?!?!? Here is the picture, aren't I cute?!?!?

Love, Jakey

Saturday, August 28, 2004 6:41 PM CDT

Hi there internet buddies! My friend Maya was in the hospital this week and is going to Mayo for some tests. Please keep her in your thoughts and prayers!

Mommy had a really cool surprise for me today! She took me to see this big red fuzzy guy called Elmo and all his friends at Sesame Street Live! I liked all the lights and music. I was so excited! I'd straighten out my body and get all sassy. They had a break, and when they came back out, I laughed. I was wondering where those silly guys were! I was so happy to see them again!

My bubba Michael is having surgery on Monday morning to have a new tube placed in his right ear. He has problems hearing good without it, so we have to be up bright and early on Monday to bring him to the hospital.

My bubba Devin has a new title, the best pooper helper in the world. You see, because of my Spina Bifida, the poopin' muscles just don't work very good. Mommy has to put lots of poopin's juice into my bottles (Miralax) to keep me poopin' good. Well, I was having a little problem today. My tummy hurt so bad, I was crying, Mommy thought she'd have to make a Walmart run for the big guns, but first she decided to check my diaper. Well, Devin was in the room with us and just happened to jump off his bed. I always think jumping is the funniest thing so of course I laughed, and WHOOPS! Out came the poop! How cool is that??? So now we have a new poopin' trick!

Hope everyone is having a super de duper great weekend!

Love, Jacob

Wednesday, August 25, 2004 10:09 PM CDT

Hello everyone! I ask that you all keep my friend Maya in your prayers. She is sick and in the hospital right now. I got to visit her 2 times already. It isn't very often that I get to visit someone in the hospital. Usually people are visiting me! I gave Holly lots of lovin' though to help make her feel better. It's tough on the mamas because they love us so much.

I had my teacher come over yesterday to play. She brought some really cool pianos for me to bang on. I wanted my right hand to work too. Darn thing doesn't always work the way I want it to, so I used my left hand to help bang on the piano. I thought I was pretty cool. Next time, Sue is going to bring some cool toys so I can work on dropping things into a bucket. I think that will be fun. I hope it isn't too hard of work though!

Hey Matt, I'd love to come to one of your football games. I bet you will be so big and tough out there!!! Tell those boys to stop screwing around. Are they so dumb that they didn't catch on that if they screw around, they have to run some more??? You tell them how it's done!

Mommy has been busy getting stuff ready for my bubbas to start school next week. Devin says he is so excited and he's not going to miss Mom at all. Mommy told him he needed to stop that growing up RIGHT NOW. She said she doesn't have time for that getting big stuff. Devin didn't buy it. He said, "I know, it's hard! But you are just going to have to live with it!" (Guess where he's heard THAT one before!)

Hope you are all having a great week! Please sign my guestbook so I know you've been here!

Love, Jakey

Monday, August 23, 2004 9:08 PM CDT

Hello everyone!!! I had a very busy day today. First Lori, my PT came to play. She worked me very hard. I did some neat stuff for her though. She thinks I am getting very strong. Plus, I had to smile a lot at her so she doesn't forget how cute I am. Then Laura, my OT came. Lori, Laura, all these names to keep straight! Today was her first day working with me. I showed her how good I can eat baby food. I did a little gagging, but no pukies, so I was very proud of myself! She is going to help me stop gagging so much, which I think will be wonderful since it is mighty nasty to be gagging all the time! I want to learn how to eat crackers all by myself without any help and all the other yummy stuff my family eats. I have been sitting at the table with them in my booster seat though. My first OT added some shoulder straps to my booster seat so I can sit up better in it. Mommy put some banana baby food on the table today while they ate supper and boy was that fun!!! I smooshed it in my fingers, licked it off my hands, YUMMY! Check out my pictures and you can see how cool I am!

Tomorrow, Sue my teacher comes to play. I always like when Sue comes here! She has lots of fun toys to play with.

I have been sitting in my exersaucer a little more and I like it. Pretty soon I will figure out how to bounce in it and even play with the toys on it! Just give me a little time and I'll show everyone! I also love playing in my little room, under my musical gym, and with all my new toys from my birthday. Mommy says she likes how much I am changing lately! I really am getting smarter every day!!!

Love, Jakey!

Sunday, August 22, 2004 9:28 AM CDT

Good Morning! We've had a nice weekend so far! We got to see my friends Patrick and Dylan yesterday. Their bubba Damian was in the NICU and PICU with me, but sadly, he died last summer. It was nice seeing their mommy Lea too and getting lots of lovin's from her. She thought I was getting so big and couldn't believe how good I am holding up my head!!! We met them at the Holmen Cornfest parade yesterday. It was a really cool parade. I thought the firetruck's siren was hysterical. Mommy gave me a bottle and then I fell right to sleep, so I didn't see the whole parade, but when a kid's got to sleep, a kid's got to sleep! We walked over to the fest grounds so everyone could eat lunch. I can't wait until I can eat real food. That corn looked so YUMMY!!! Dylan and Devin rode on some rides together. Those two sure are buddies. There is something about Ronald McDonald House friends that is just so special!!!

Mommy and I were snuggling on the chair when we got home, and before you know it, both of us were sleeping! We woke up at 8:00 just in time for Big Brother. I'm glad we did otherwise mommy would have been mad if she missed it. Then we noticed that Daddy was sleeping too! I think there must have been some sleeping spray in the air yesterday because we were all so tired! Devin was sitting watching cartoons and eating lots of snacks. Stinker.

Today, we are being lazy. We have a crazy week ahead of us with PT and OT tomorrow, Early Childhood on Tuesday, swimming on Wed (hopefully!), and ear dr appts for mom and Michael on Thursday. Mommy's ear and head have been hurting lately, and Michael is getting a tube placed on the 30th. Finally someone else is having surgery except me! LOL

Hope everyone is having a great day!

Love, Jakey

Thursday, August 19, 2004 10:17 AM CDT

Hello everyone! Call me the slacker! We had a nice weekend and a busy week so far! Monday, we went to Mayo. I saw the dietician and she was SOOO excited to see how big I've gotten!!! She couldn't get over it! I am at the 3rd percentile on their charts. My mommy couldn't get my leg stretched out any farther because I hate that stupid wooden messuring box they put me in, so I was 1/4 inch shorter at Mayo then I was at the pediatrician. Oh well...we know the truth!!! The dietician said to keep up what my mommy is doing. They don't want me to get too fat though! No one is ever satisfied I tell ya! First they complain because I am too small and now they don't want me to get too fat!

Next, my bubbas went to see the social worker and talk to her about being a bubba to a special brother like me. I think they liked that. While we waited for Maya to get done with her appt, we listened to a guy singing. It was pretty cool. There were other kids there like me. One girl was dancing so cute. My momma really liked that. She thinks us kids are pretty special.

Michael and Devin are starting school soon so Mommy had to buy them lots of clothes and school stuff. We went shopping for a long time, and then we had to go pick up my new bathchair. It is really classy! Mommy also took me over to the hospital to see this really cool Dr. I love. Dr. Nickles was there the day I was born, so I was so excited to see her again! I was smiling and loving her up! She is going to be a neurologist and thinks kids like me are pretty cool. I showed her most of my cool tricks and she can't believe how far I have come! I think she was pretty impressed :)

Michael had middle school orientation last night with Mommy, so Grandma and Daddy took care of me. My bubba is getting so old and my mommy is going to cry I think. Then Devin starts Kindergarten and oh boy....we will need lots of kleenex at our house. I think it will be fun though to just have Mommy at home with me!!!

You will never believe what happened last night...my stupid medicine port on my tube came open and I had formula all over my stinkin' crib, sheets, bumper pad, my splints, my legs, back, neck, jammies, and diaper. I had a bath right away! My mommy was told this would probably happen, but YUCKY!!!! So I guess we have been totally initiated into the feeding tube hall of fame.

We finally have a quiet day at my house. I think Mommy likes those days. I have already watched Barney this morning, so life is good!!!

Make sure you sign my guestbook! I like seeing who has been here!

Love, Jacob, the feeding tube king for today!

Saturday, August 14, 2004 7:41 PM CDT

Happy Saturday everyone! I am most impressed with Miss Carolyn's wise words in my guestbook: We just keep on believing the impossible, and He responds with a miracle - small or large, He is ON it! Thank you so much for giving the praise where it is due! I know the Lord has worked big miracles through me! My mommy is so impressed with my huge leap in skills lately. I have been noticing my arms! They are ever so fun to play with! I can swing them around and hit things very hard! If I had known they could be this much fun, I would have used them before! WOW!!!! I especially love to beat up my musical activity gym. I lay on my boppy under it, and I hit the keys over and over and over. It is quite amusing. I am also giving people 5 if you ask me. Like you don't even have to show me how anymore, I just slap your hand. I am starting to make so many cool connections in my brain. I can't wait until Sept to show off to all my doctors at Mayo! Mommy is keeping it a secret until then! SHHHH!!!!

Speaking of Mayo...we are going there on Monday! We will see the dietician to make sure I have enough yummy stuff going into my tubie, and then my bubbas will see the social worker to talk about how cool it is to have a bubba like me, and also how hard it can be sometimes too. Then I get to go see Dr Nichols. I have known her since the day I was born!!! She is going to be a neurologist to help kids just like me!!! I am so excited that I gave her such good ideas on how cool kids like me are. Mommy has to pick up my new fancy dancy bath chair too. I can't wait to try it out. It is a Leckey bathchair for any of you other mommies who think all this special needs equipment is cool. Maya and I always laugh at how goofy our mommies are....They drool over cool wheelchairs. Talk about silly!!!
After all of our appts, my mommy wants to go shopping for school. Once Sept comes, my bubbas are both going to school and it will just be Mommy and I at home!

Today, we went to a really cool place called Norskedalen. It had a bunch of old houses from years and years ago, that you could walk through, all decorated like it was back then. We even saw an old schoolhouse. The coolest part was that someone was getting married outside there! It was so pretty with a little creek running through, some old bridges, and everything. It reminded my mommy of Little House on the Prairie. It was amazing how small the houses were, even though lots of people lived in each house.

I spent some time in my exersaucer tonight! I am so big now! I only needed my boppy around me to support me a little! WOW! Check out my pictures!

We will go to church in the morning, then my buddy Cole is turning 1 tomorrow, so we will go to his party!

Hope everyone is having a great weekend! Leave me a note in my guestbook!

Love, Jakester

Thursday, August 12, 2004 6:57 PM CDT

Hey everyone! It is so cool being 2! I think I am such a big boy now. I have been holding myself up so good, giving 5 to everyone, hey, I even sat in the booster seat last night at the table for the first time! It has straps that go across my shoulders, so that helped a lot, but I was so big!!! YEAH for me!

I went to the dr today for my 2 year checkup. I am 22 lb 11 oz and 32 3/4 inches long! I am in the 10th percentile for height and JUST below the line for weight!!! I have never ever ever been on the chart since I was born, so I am so happy! Normally I am in the white box area, you know the part where they give the instructions on how to chart?!?! Yep, that is where I was! My dr was so happy!!! She said everything looked really good. My ears are clear, my lungs are great, I am very healthy right now.

I have been busy with therapy this week. I am showing off more and more for everyone. I like to beat up my toys lately. I hit the buttons over and over really hard. My therapists think I am so funny when I do that.

I better get going. Big Brother is on and my mommy needs to stop helping me type so she can go watch it!!

Love, Jakey

Sunday, August 8, 2004 10:00 PM CDT

Happy Birthday to me! Oh what a day! I woke up this morning, talking and jabbering. Mommy and Daddy came into my room to wish me a happy birthday. I was so excited for my party!

We had lots of people at my house. The kids played some silly games, like a candy hunt in my rice table, throw Barney into my wheelchair (I wasn't in there at the time, thankfully!) and who could drink a baby bottle the fastest. It was funny to watch everyone look so goofy!

It was so much fun opening presents. I got some neat toys and some cool clothes for fall. I will be stylin' that is for sure! I got some Barney movies too, a Barney CD, books, and a cool talking Barney. That's me hugging him up above. I just love Barney, can you tell?

I especially loved when everyone was singing to me. That was so awesome. I love the Happy Birthday song anyway, so when everyone was singing, it was so cool. Then Mommy gave me some cake and I squished my fingers in the frosting. Devin showed me how, and then he showed me that I could even EAT it! WOW!!! I was careful not to get any cake in my mouth though, you know me, Mr Gag and Puke, but the frosting was MMMM MMMM good! I made a really big mess and it was so much fun.

After my cake, I took a little nap, because I was so tired. Then I woke up to visit with some more friends! What a cool, cool day. Can you believe it? I'm 2!!!!!

Oh and I suppose I should tell you all that I am getting so much bigger. I am wearing mostly 24 month clothes now, size 5 shoes with my AFO's on, and 3's without them, and size 4 diapers (yes I said size 4!!!!) My thighs are 10 1/2 inches around now. I am getting chubbier!

I can sit up with some help from Mommy and my boppy pillow. By my 3rd birthday, I should be sitting up pretty good by myself! I still am working on rolling over. I am getting better at holding up my head when I am in my stander and on my tummy. It is still HARD work though! I can kick my legs, make my toys work, and I really like my musical gym now. I sat in the exersaucer the other day with a blankie and my boppy on me. I thought I was cool. I love to lift my head off the floor when I lay on my back. I am working on a six pack stomach.

I still love my pediasure and my bananas the best. I love prunes too, and lots of other fruits, but veggies make me puke. Literally. Oh well....I like sweets, what can I say.
I get fed through my tubie at night and it makes my tummy feel so good. It also is making my thighs get fatter.

I love playing with my bubbas the best. They are hilarious. I like to give Momma the best kisses, and Daddy is so fun to growl at. I tell him all about my day when he comes home. I love all my aunties and uncles, my grandmas and my friends. Oh, it is a great world I live in. I hope you all know that, just by my smile.

Make sure you check out all my new pictures. They really are all from today, but as you can tell I had a change of clothes in the middle of the day. You see silly mommy shared some pudding with me at my party and well, lets just say, I gagged, which of course made me projectile vomit all over my outfit. I just hope I didn't make my guests gag. You see they were all trying to eat when I did it! OOPS!!!!

Love,
Jakey (the big 2 year old!)

Saturday, August 7, 2004 3:14 PM CDT

Hello everyone! 1 day until my birthday! WAHOO! I am getting so old if I do say so myself. And cuter too of course. Auntie Holly took some pictures of me last night and we are going to have some more taken tonight, so hopefully soon I'll be able to share my birthday pictures with all of you!

Tomorrow is the big Barney party. I am so excited! Lots of Grandmas are going to be there, aunts, cousins, friends, wow. It will be fun! My mommy is planning some games too, so I'll tell you tomorrow how everything goes.

My mom says this year went fast, even though we had lots going on, my stupid seizures, worrying about me not eating very good, bladder and kidney stones, my feeding tube being placed. Oh well....I do what I have to do! But I do the cuteness thing the best I think. My mommy always laughs at me because she can be so worried about me, then she looks at me and I am so darn happy, the worries melt away.

2 years ago tomorrow, I came into this world, 4 weeks early and screaming my lungs out! I was huge for being 4 weeks early...8 lb 8.2 oz on 8/8/02. The drs brought me into this warm room, with the light right in my face. Soon though daddy came in and talked to me so I wasn't scared anymore. Then after Mommy was all ready, they brought me to see Mommy and the rest of my family and friends, my bubbas, my grandmas, Auntie Sandi and Uncle Bill, cousin Matt, Crystal and Amy, and my pastor from my church! He came to baptize me. I only got to see mommy for a little while, then they took me in a big ambulance to the NICU with a whole bunch of other crying babies. I was the biggest one there I think! Mommy and Daddy were so proud of me. I was such a fighter from the beginning! Kinda like what my bubba Michael said to me yesterday....he said, "Jacob, you are kinda like Yu Gi Oh. You keep fighting and you never give up. That makes you a winner."

Here's a poem my mommy wrote for me last year in honor of my birthday. I wanted to share it with you again!

A sweet and wonderous surprise it was from the start
A new life in our family, an amazing love in my heart.

Plans and dreams were made as most parents do,
Plans for the future, exciting and new.

Then in a single moment things started to change,
The plans for our family were soon rearranged.

For something was wrong the doctor told us one night
Your son will be different, things will never be right.

And as I heard these words I felt a tremendous grief,
How could this be happening? Complete disbelief.

And so began our journey to places unknown,
Of worries, and fears and a love which had grown,

A love so fierce and devoted, and determined to see,
A child, a miracle, be the best he could be.

And so it was on a beautiful August morn,
That an angel sent from Heaven into my heart and soul was born.

An angel indeed, I instantly knew.
For on his back was proof of where angel wings once grew.

And love him I did, with all of my heart.
My Jacob, my son, meant to be from the start.

But we soon found out that our journey would change,
And life as we knew it, would soon rearrange.

For Jacob was sick and soon we heard too,
Something was wrong with his brain, not much we could do.

Except follow our hearts, our faith, and our God,
Who sent us dear Jacob from where angels do trod.

And soon we saw that amidst all the mess,
That God was in charge, He'd take care of the rest.

For God is our anchor, amidst all the strife,
For it was God who decided to give Jacob his life.

And so our dear Jacob continues to be,
A miracle, a fighter, a true destiny.

And while things won't be easy,
We choose to believe, that God will be with us and each skill he'll achieve

Will be part of a miracle, a plan from above,
For dear Jacob was sent to teach us all about love.

Happy Birthday Jacob!

Thursday, August 5, 2004 7:51 AM CDT

Good Morning everyone! Sorry I haven't updated for a long time, but Mommy has been trying to get the computer to cooperate. When she called someone to help her, they made it worse, stupid people! So anyway, here I am! It's my daddy's birthday today!!! HAPPY BIRTHDAY DADDY! I love you! Daddy is always so much fun to play with. I always get so excited when he talks to me and I like to talk back to him. He woke up really early and went fishing. He has the day off from work too. Grandma is taking us out to eat lunch. Maybe everyone will share some ice cream with me. I love when someone shares their ice cream with me!

Sunday, we went to Rochester for the NICU reunion. We got to see my friends Ethan and Angelina and her new brothers. My mommy had fun visiting with everyone. Then we saw my very first nurse after I was born. She thought I was extra cute and extra special. Mommy told everyone about how sick I was after I left the NICU. I think everyone was pretty surprised. But things are good now and I am happy as ever!

PT came on Monday and I worked so hard! I was showing off for Lori in my stander. Mommy took some pictures too. You'll have to check them out!

I am getting so excited for my birthday! Just 3 more days! I hope I like to smash my cake this time. We are having a Barney party since I love Barney so much.

Hope everyone has a great day and please sign my guestbook so I know you were here!

Love, Jacob

Friday, July 30, 2004 4:58 PM CDT

Hello everyone! I have been having a pretty good week. My bubbas finished summer school on Thursday. Me and mommy enjoyed sleeping in once they left for school. I think we are ready for school in the fall! It was nice around here without Michael and Devin fighting, but I also miss how silly they are with me too.

We went to the Children's Museum yesterday with Holly and Maya, and Amy, Dakotah, and Trevor. My friend Levi has a rash so he couldn't come with Crystal and Blake. We missed them a lot. It was lots of fun though! You'll have to check out my pictures. My mommy let me ride the firetruck with Devin. I laughed so hard! I love when mommy lets me do big boy stuff!!! I was pretty brave the whole time. Usually I cry a lot when I am there, but I did really good this time. I am so proud of myself!

Today, Michael went to the band room at the middle school to pick out an instrument. He was playing lots of different ones. I am not sure I liked all the ruckus. It was very loud and some of them sounded like a sick duck, but it was pretty cool. Michael decided to play the baritone. Devin was so jealous Michael got an instrument and he didn't. BROTHERS I tell ya!!! Devin had to get out Michael's recorder to play. Mommy wasn't too happy with all the loud squawking. She told my brothers they have to go in their rooms with the door shut or downstairs with the door shut! I thought that was pretty funny!

We had a visitor today. Mommy's coworker from Head Start came today for lunch! Janie brought pizza over and Mommy really enjoyed visiting with her. I think Mommy misses teaching sometimes, but then I know she LOVES staying home with me too!

We are planning on going to Rochester on Sunday for the NICU reunion. It will be fun to see our friend Angelina and her new brothers!

Hope everyone has a great weekend. And sign my guestbook too!!!

Love, Jacob

Monday, July 26, 2004 10:04 PM CDT

Hello everyone! I hope you all checked out my CUTE pictures! I have to say I am a mighty handsome fella! Thanks to everyone in my fan club for all the compliments. I have figured out that I can get my way A LOT just by being cute, but SHHH don't tell my mommy I said that. I want to use it to my advantage for as long as I can!

Saturday, we took a really long drive up to see my cousin Matt for his birthday party. He is 11 like bubba Michael, but he is really tall! I had to make my rounds, saying hi to everyone and flashing my cheesy grin. My auntie Sandi was the funniest one. Everytime she'd talk to me, I'd get all sassy and shake my head. She kept calling me her boyfriend. She also taught me how to "give me 5!" and I did "So Big!" for her! WOW I surprised everyone! My "so Big!" is SO CUTE! I raise my arms up just a little, and I try to get that darn right arm to cooperate, but everyone knows what I am doing. My cousins Kelly and Emily thought I was so cute dragging my right arm around trying to make it work. I do have to admit, I am definitely tops in the cute dept!

Sunday, we all went to the Mall of America. Bubbas, Matt, Daddy, and Uncle Bill rode on the rides. They had fun. I spent the day being cute, smiling at Sandi and Mom, and being cute. Do you see a theme here? Oh, I also ate a bottle in there too and took a little nap, so it wasn't all fun and no work.

We had a long drive back home. Mom came and sat by me for a while, gave me some milk in my tubie, and then I fell asleep. I was so tired because Sunday morning I woke up at 4:00 AM and just couldn't go back to sleep. And since I couldn't sleep, I figured why should anyone else either??? Just as Mommy and Daddy would start drifting back to sleep, I would let out a loud cry. Can you believe they thought about falling asleep on me???? That they would have the nerve to sleep while I was wanting to PLAY?!?!? What the heck....Anyway, so I got a little cat nap in on the way home, then decided to really catch up on my sleep last night. I didn't wake up until 10:00 this morning! I had drool marks down the side of my face, I was sleeping so hard!

My PT and speech therapist came today and boy, did they work me hard!!! I was so tired and full from the nanas that she fed me that I could hardly move. Auntie Holly was babysitting me, and she didn't want to pick me up right away. You see Holly had a really bad experience the last time she fed me nanas. I think I scared her. Just imagine the exorcist, you know head spinning, you get the picture. Who would have known one little body could have that much puke in it??? :)

My nurse and Grandma came over today too since Mommy had a meeting and a massage. It was a crazy day at our house. Lots of people in and out, but I got my bath and my nap in. Life is good.

Hope everyone had a nice weekend! Oh, and Crystal, my auntie Sandi says she has a bone to pick with you....you know the whole "favorite aunt" thing. We'll let you two fight that one out!

Love, Jakey!

Thursday, July 22, 2004 6:54 AM CDT

FRIDAY UPDATE! My mommy adds some cute pictures of me. I don't even think I'm cute, I KNOW I'm cute! Go check them out!

Since my auntie Crystal has to be SO sassy, I'll write another entry! I've been having a very nice week, being cute, sassy, grinding my teeth, and overall thinking I am pretty hot stuff with how strong I've become. It's pretty fun sitting up on Mommy's lap now, being all silly when I do it. Mommy even makes me sit up on the floor sometimes. I THINK I like it, but sometimes I feel like screaming at her to pick me up already, can't you see I am folded in HALF!?!?!? But I can't complain too much about my mommy. She's pretty cool. She takes good care of me and makes me happy. I love to give her lots of kisses too, which makes Daddy kinda jealous. I get so excited when I hear Daddy come home from work though. I have lots of things to tell him. I have been talking to lots of people lately too, which is pretty cool. If someone talks to me, I have to talk right back to them. I hope they understand what I am telling them, because I have lots of good stories.

Monday, my PT was sick, so I didn't get to play with her. My speech teacher came though. She always is messing with my mouth. Darn lady thinks I need to use my top lip. And of course my mommy agrees with her, so I can't even get Mommy on my side. Rats!

Michael had a dr appt on Monday. It was so nice to go to the clinic and watch someone else have an appt and not me! The dr said that Michael can swim this summer, and then in August, they are going to put a new tube in his right ear so he can hear better.

Monday night, my mommy went out with Auntie Crystal, Auntie Amy, and Auntie Holly to celebrate Crystal and Holly's birthdays. I stayed home with daddy. Mommy had a really good time she said, talking and laughing with her friends. I think mommies need time to get away from us kids. It was fun for me too, because I had Daddy all to myself, well I had to share him with Michael and Devin, but you know!!! I was already sleeping by the time Mommy came home.

Tuesday, I had to go to Mayo to get my Mic-Key button changed. Auntie Holly and Maya came with us. It's fun to have someone to talk to when we go to Mayo. It gets a little boring in the van by ourselves. Maya was being my friend and was making me smile a lot. I'd even shake my head no at her, which she thought was SO funny. Maya was tickling me with my jiggle gator while we were waiting for the dr. Then she started crying about something, which made me SO sad. I hate to listen to other kids cry. Then Maya got even sadder because I was crying, which made me cry even harder. Our mommies were thinking everyone was going to ask us to leave the waiting room with all the ruckus we were causing. It's always fun to cause a scene every now and then. It gets those mommies going! Hee Hee!!! We must not have been too annoying though because we had a lady come up to us and say how adorable we were. That made our mommies so happy.

I finally got to see the dr 1 1/2 hours later. The nurse saw me and said, "Oh there's Mr Smiley lashes!!!" Everyone thinks my eyelashes are so beautiful. The physician's assistant (PA) came in and she said that because I still have a yeasty rash on my tummy, they will wait until Sept to change my tube. Meanwhile though, she cleaned it up a little, burnt off some yucky granulation tissue. Most people think it hurts a little, not me. I was swinging my arms and smiling. I am a crazy kid! The PA said I was such a sweet boy and talked to my mommy about how special kids like me and their families are, that we are handpicked by God. I told her she was right! God told me so Himself! I hope she understood me when I talked to her! It was really special for my mommy to talk to a dr about these things.

Wednesday, my nurse April came over. She had a surveyor from the state watching her. I decided now would be a GREAT time to cry ALL through my bath. I never have cried for April, but thought I'd shake things up a little since she had someone else watching her today. Aren't I sneaky???

Our family went to the La Crosse Loggers game last night. It was SO hot sitting there, but it was lots of fun.

Today, I am going to see Auntie Holly for a little while so mommy can get her massage. Her head hurts her a lot, so hopefully she can feel better soon.

Saturday, we are going to Auntie Sandi and Uncle Bill's house for Matt's birthday party! I am so excited to see them again! I want to show them all my new tricks. I bet Sandi will think I am a little porkchop now that I have gained so much weight! Wait until you see my thighs! I can't wait to see Matt either. He loves me SO much and I think he is pretty special too!

I hope everyone is having a great week! Please sign my guestbook so I know you were here! My birthday is in 17 days!!! I would love it if everyone who reads this site, will send me a Happy Birthday wish when my birthday comes!

Love, Jacob!

Sunday, July 18, 2004 8:45 PM CDT

Another day....where is everyone? It is quiet around here!!!

Jacob has had a nice day. He's been singing and happy. He was laying under his musical gym today and beating the crap out of it. I had to laugh at him. I could hear him HITTING it from the other room. Song after song played. I walked in to see him, his head about 3 inches off the boppy pillow trying to sit up. He cracks me up. Crazy kid!

Jacob had a major poop today. Through the clothes onto me. YUM. However, in a sick sort of way, it was really cool too since he hasn't really had major poop blowouts. Just to let you all in on something, special needs moms get a kick out of talking about poop. It is quite the big deal in the special needs world. It beats suppositories and enemas anyday!

I was thinking about 2 things that happened which I don't think I shared! Wednesday, Jacob went to the doctor and had an abscess drained from his incision. One of the internal stitches was trying to come out, and over a month later decided to get all yucky on us. So the doctor lanced it. Jacob laid there all happy and singing. Devin was wondering if Dr Brumm was going to stab him with the scalpel. And I was so brave, I never passed out. It was a happy day all around!!! Oh and he weighed 21 lb 2 oz :)

I have talked different times about the things the boys have said and done concerning Jacob. Michael and Devin are so caring and loving, it is neat to see. Anyway, we were at the wheelchair company discussing some issues about his Kid Kart. Devin was checking out all the wheelchairs on display and found one he just HAD to have. He asked if he could buy it for a couple dollars (make sure you roll the L's on your tongue when you say dollars like Devin does!) and I told him it was lots more than that. So he asked the lady if he could buy it for a couple dollars and she said about $5000! So he proceeded to say it wasn't fair that Jacob has a wheelchair and he doesn't. That he has to walk and that Jacob hasn't learned how. Now how is that for a twist? I laughed so hard about it. He is jealous because Jacob has a wheelchair and can't walk. Precious.

Hope everyone had a wonderful weekend! We were mostly lazy today, but that is a good thing to be occasionally!

Take care!

Love, Karla

Saturday, July 17, 2004 9:03 PM CDT

Happy Saturday! Hope everyone is having a nice weekend. Thursday morning, Jacob got his 2nd haircut. He still has curls too :) He sat very nice and loved the clippers buzzing by his ears. He laughed so hard.

Michael and Devin had games on Thursday night. Devin is done with t-ball, and Michael has a few games left. It has been a fun time watching them play.

Friday, I had a dr appt for my reaccuring headaches. I am going to start OT massage therapy again (didn't have to twist my arm for THAT one!) and I am taking ibuprofen. They also did a blood test to check for inflammation in the artery in the back of my head. Hopefully it isn't that, but the possibility is there since that is where my pain is stemming from. Hopefully I will hear the results this week.
I am finding out after over 2 years of high stress that it begins to manifest physically. I think after a while it has caught up to me, especially now when things are going okay for the time being.

Jacob has had a wonderful day. Very happy, took a good nap, but didn't eat much. He was laying on the floor tonight and tried to roll over. I gave him a boost on his side, and he flipped. Then he laid on his tummy for a while, licking the carpet. I was encouraging him to look up, but he pretty much just laid there, faced pressed against the floor. Then he started raising his butt up, trying to get his knees under him. All the while he is still flat on his face! LOL His skills are so unbalanced at times! He cracks me up.

Monday is a busy day with appts, therapy, and a ladies night out. Tuesday, we go back to Mayo to get his Mic-Key button changed (his feeding tube.)

Remember to leave me a note in the guestbook! It has been pretty quiet this week!

Love, Karla

Thursday, July 15, 2004 7:15 AM CDT

Hello everyone! Another 5 hours and 17 blissful minutes yesterday as Michael and Devin went to summer school. They are really enjoying themselves and so am I! I went back to bed after they left yesterday. I woke up to Jacob's pump an hour later, turned it off and didn't wake up until 9:38!!! It was so nice.

Jacob had a great day. We've gotten into a nice routine during the day. A balance between eating, playing, napping, etc. It helps so much to have the feeds running at night.

Jacob has decided to use his attitude to get his way. If I walk past him and he thinks I am supposed to pick him up, he'll scream this high pitch squeal. The other day, I put him in his stander when he didn't want to be in there and he screamed. I also had him in his wheelchair one day, came over to put the tray on so he could play, and he wanted me to pick him up, yet knew that when the tray was on, he wasn't getting out! LOL It is funny to see him make those connections. Then when I do pick him up, he frantically kisses me over and over like he hasn't seen me forever. It's a riot.

I put Jakey on the floor last night to sit up. I let go and he stayed there!!! He sat there for about 1/2 an hour. He was crouching over a good part of the time, but it is a start!!! I remember when the other boys did that too. It reminds me of a frog! I was able to video tape it and took some pics. I will try to get digital pics of him today if he'll do it again. Meanwhile, check out some new pics of curly boy!

Love, Karla

Tuesday, July 13, 2004 11:01 PM CDT

Hello everyone! I am still alive. We have been having issues with the computer, but hopefully it is going to be okay.

We have been busy with baseball, t-ball, and summer school. Michael's team is doing pretty good this year. The games are a lot of fun to watch. Devin's t-ball games are a riot. They have no clue what they are doing. Devin was too busy talking to the 2nd baseman today to run. It is hilarious!

Jacob is doing really well. He is such a happy guy all the time. He has started "talking" so much more. If you say something to him, he'll start talking back to you. Sometimes he growls too. It's so cute. It is like he realizes talking means something and he's going to be a part of it! He worked with PT and speech yesterday and was so tired when he was done. That darn top lip is still an issue. It is very tight and doesn't want to function a whole lot, but we will continue to work on it. He seems to be getting closer to sitting all the time. Now we just have to work on using those arms to support himself! I am thinking within the year he should be sitting up. HOPEFULLY!

I forgot to thank Holly for putting up the cute pictures of Jacob on the website! She babysat one day and took lots of pictures of Jakey. I love the ones with Barney. He loves watching his Barney movies. As soon as the music comes on, he gets so excited. When we were in the hospital, I put a tape in and he got the funniest look on his face like "What is Barney doing HERE too!?!?!?!"

Our friends Tracey and Dave had their twin boys at the end of June too :) Tracey, I need pictures of Preston and Justin!!! Congrats to them!

The boys started summer school yesterday. Devin is in Camp Kindergarten and Michael is taking 3 classes, Games, Amazing Art, and Healthy Fitness. It is so nice for them to go together, since they won't be in the same school this year. They ride the bus to school, and I have 5 hours and 17 minutes of pure BLISS.

Hope everyone is having a great week! Take care and leave me a note in the guestbook!

Love, Karla

Thursday, July 8, 2004 12:02 PM CDT

Happy 23 months Jakey! One more month to his 2nd birthday :) This past year went so fast.

Jacob had a checkup yesterday. He weighed 20 lb 13 oz! He finally broke the 20 lb mark. Everyone was cheering for him. He gained 17 oz in the last 19 days. His ear infection is gone, so hopefully we can stay healthy for a while.

Jacob absolutely loved the fireworks. He laughed the whole time, so hard his butt was shaking. He loved the loud booms, the louder the better.

Here's a review of his past month. Jacob has gained about 2 1/2 lb in the last month. He is about 32 3/4 inches long. He wears 18 month and 24 month clothes. He is in size 3 diapers and 4's at night because he wets so much. He wears 3 shoes without his AFO's but 5's with them on. He has the cutest pair of Nikes :)

Jacob eats two 6 oz bottles during the day and baby food. At night, he gets 16 oz in his feeding tube. He is still having issues with gagging at different textures, but overall eats very well. The speech teacher is working on feeding with him every Monday. We also will continue going to the OT at Mayo as well.

Jacob is bearing weight on his legs. I never thought I'd ever be able to make him stand up on my lap. What a great accomplishment it is :) He will push so hard with his legs, buckle, then get back up again. He gets a funny monkey-lip face too when he does it. LOL He is kicking his legs, straightening his trunk, and has his legs a lot straighter lately. He used to have total frog legs, but now they are straightening out so much more. He is getting closer and closer to sitting up. He has gained so much strength in his trunk. I love being able to carry him and he helps support himself. It has been such a huge joy to experience these strides, to see every accomplishment as the HUGE blessing that it is. Too often we take things for granted. You just assume your child will develop in a certain way. However, when you don't expect your child will develop and connections, however very small, are made, it is the most amazing thing to witness. It has been so wonderful, that words can't even express.

Jacob's personality continues to blossom. He loves his brothers immensely. They are a constant source for entertainment. He knows the many people involved in his care and those who loves to snuggle him. He loves his nurses and makes sure to flash that cheesy smile to anyone who will fall for his patheticness! He is a character.

Hope everyone is having a great week. I am having lots of computer troubles, so I am at Holly's using her computer.

Love, Karla

Thursday, July 1, 2004 6:02 PM CDT

Hello everyone! We had a nice Wednesday. We went down to Riverfest and the Grand Excursion. It was cool to see the boats, plus numerous people dressed in the traditional clothes for that era. Pretty cool. The boys had to get Tom Thumb donuts and so did mom :) Luckily it was much cooler yesterday than it is today. I hate humid weather.

Last night, we went to the premier of Spiderman 2. It was awesome. Jacob spent half of the movie laughing. He loved the loud noises, especially the fighting scenes and the web slinging. I think it is because Devin makes so many of those same noises he thinks are hilarious. We got quite the chuckle out of him. Of course, Devin was in his glory. He started playing Spiderman outside of the theater and as soon as we got home, he had to get his costume on. He wore it to bed and half of the day today. Burger King has Spiderman toys, so he thought he needed to go there in the middle of the afternoon. I reminded him that he was just there 2 days ago and the toy would be the same. He didn't like that idea too well. Michael had a hearing test today, so we went to the clinic. Devin thinks that a dr visit=McDonalds or Burger King. A lot of times it does, so therefore Devin gets SOOOOO hungry all of a sudden when he hears me say we have to go to the clinic. LOL When McDonald's had the neopets, the boys got quite a few since Jacob was in the hospital during that time, I get Happy Meals a lot too, etc. Well, Michael was telling someone at Mayo about how many he had which led me to clarify WHY they had so many. It was quite funny and a little embarrassing having to explain. LOL

Michael's hearing test came back questionable. The one test didn't indicate fluid in his ears, yet the other did indicate low frequency hearing loss, so we will see the ENT in a couple weeks.

Last week when we were at the park, a little boy came up to us and started talking about the neopet we had in Jacob's wheelchair ( I told you we have a lot! LOL) He then said hi to Jacob and asked his name. He said, "Do I know Jacob?" to which I said, I don't think so, since I didn't recognize the boy. He said he thought he did, that he remembered when Jacob had come to his school, when I told Jacob's story to the kids. I asked what grade he was in and he said 3rd, but you came when I was in 1st! To which he added that he thought it was Jacob because he recognized his head. I laughed so hard!!!I was so happy to know that he remembered the talk I had given the kids before Jacob's benefit last April. Jacob has done his work well :)

Tonight we have a baseball game, so I better get going!

Take care!

Love, Karla

Tuesday, June 29, 2004 9:54 PM CDT

Hello everyone! It has been too long since I had an update on here! I have been having problems with my computer, so hopefully I can write this before I am kicked off.

Jacob is doing really well. He is getting stronger and bigger every day. We go on Friday to the ped, so it will be cool to see what he weighs now!

We have been doing lots of fun activities with friends and family the last few days. Holly and I took the kids to the park on Friday. Saturday and Sunday, I finished painting the bathroom, which was NOT fun, but very pretty. If I ever get the idea to paint it again, please kill me first. It was not a fun project. Sunday, we also went to a picnic with Dave's side of the family, which was lots of fun. Last night, we had a ladies night out, Crystal, Amy, Holly and I...and Maya too :) We celebrated my birthday, exactly 6 months late. We made new rules for the birthday club last night, so there's no slacking anymore (did you hear that Crystal?) LOL It was so fun talking and laughing and just being with friends. Tomorrow, we are going to take in Riverfest in La Crosse. There is going to be riverboats making a journey up the Mississippi River too, like in the old days, so it should be cool to partake in that experience too.

Monday, I had another meeting for the coalition I am participating in. I joined a subcommittee which will be working on a single point of entry and a parent handbook, so that when a child is diagnosed with a disability, the parent can have one number/person to contact for information. From there, the parent will be directed to the right services. I am excited to be part of this, as I have had to do a lot of the work myself with Jacob. It is also nice to use my energy positively in order to help others entering this crazy journey.

My boys deeply love Jacob. Anyone who sees Michael and Devin with Jacob can tell just how much they love him and adore him. Devin had a really sad day this weekend. It really hit him that Jacob is different and that he won't be able to walk, that he probably won't be able to talk, and that generally he doesn't do too much. He stated these facts to me as if he really understood the dynamics of what Jacob is facing, and sobbed for his brother. He wants him to be able to do all the things he sees other babies doing, yet knows this just won't happen. All the while, he continues to love Jacob so much. It was one of those moments where I too cried, not for myself or Jacob, but for the pain Devin was feeling, knowing that it effects everyone in our family.

Take care everyone! Hope you are all having a great week!

Love, Karla

Thursday, June 24, 2004 4:23 PM CDT

Happy Thursday everyone! We had a nice visit to the OT at Mayo yesterday. She fed him some food with cereal mixed in to thicken it up a little. She felt that his actual eating was fine. The gagging and whatnot on chunks is more of a sensory issue. He doesn't know what to do with that sensation, so he gags. She tried a little chunk of cereal and after gagging and nearly puking it back at her, she said she wouldn't do that again! LOL So the plan is to continue thickening his food plus giving him lots of sensory experiences in his mouth. We have some Nuk brushes which we will let him chew on and explore with, plus trying different tastes and textures of food.

A lady from our church had a pizza delivered for us last night, so I wouldn't have to cook supper. It was absolutely wonderful, especially the root beer floats also delivered :) YUM

Today I did a lot of phone calls to Mayo trying to figure out some issues. With his feeding tube now placed, I was thinking we could take him off his diuretic. With the weight gain, his seizure meds might also need to be adjusted, so Deb was contacting both of these Drs to see what needed to be done, if anything. We also got the okay to soak in the bathtub since things are healing nicely and scheduled our follow-up to get his tube replaced. I got a call from the company ordering his bathchair. The approval is still in the works, so hopefully after they send in Jacob's height and weight, the chair will be approved. I saw the one we want yesterday. It is very nice :) We are borrowing one from Mayo now which is also very nice. In fact, today, he got to soak in the tub. His first REAL bath all by himself!!!! Up until now, he has been in a baby bath or just was washed off in the tub, but not really immersed. He has taken baths with me, but that is different. He was a big boy today!!! He loved it. Now we just have to teach him how to splash.

Jacob has been grinding his teeth like crazy. It is driving me insane!!!

Hope everyone has a great night and remember to drop in and say hi in my guestbook!

Love, Karla

Tuesday, June 22, 2004 7:53 PM CDT

Hello everyone! We have had a nice week so far. It is nice and cool outside, yet warm enough to wear shorts. My kind of weather! Yesterday, we had PT and speech come. The PT warmed Jakey up for speech's visit. We worked on feeding and getting his top lip to work at taking the food off the spoon. His top lip isn't very functional yet, so we will work on that this summer. We will also work at desensitizing his mouth since he seems to gag anytime there is a chunk of food in it.

I did lots of housework yesterday, laundry, dishes, the bathroom, sweeping, vacuuming, mopping, and cleaning the carpets. The nurse was here, so I got a lot done, then Jacob took a nap, so that was nice.

Today we had Early Childhood. Dave's cousin Patty called to pick up the swing we borrowed, so she came out with her daughter Lydia. It was nice visiting with you Patty!

Michael had a game tonight. He had just come back from his dad's and ended up falling asleep in the van. I drove all the way there and then he said he didn't want to play, so we came all the way home and went to Devin's game. I think he was just a little sad about leaving his dad's after a fun weekend, and then fell asleep on the way there, and didn't feel good.

Tomorrow, we are off to Mayo for a feeding evaluation. It should be interesting to see what the OT there thinks.

Please remember to leave a message in the guestbook. I really enjoy getting messages from all of you!

Love, Karla

Sunday, June 20, 2004 10:20 PM CDT

Happy Father's Day! We went to church this morning, then had lunch at Famous Dave's. Michael went with his dad overnight. After lunch, we went mini golfing and then Dave and Devin rode on the go carts. When we got home, Dave and Devin went fishing, Jakey was sleeping, and I spent some time in a quiet house talking to friends on the phone. It was a nice day.

After the Lord's Prayer today in church, Devin asked me if the devil would get into Jacob's heart since Jacob couldn't pray. I told him no, that Jacob is kinda like a special angel. After church, we talked a little more about it and explained to him that when Jacob was baptized he became a child of God's and that God is in his heart. We explained that people like Jacob are kind of like special angels, that God lives in their heart and that we can pray with and for Jacob. Michael told Devin that when people like Jacob die, they get the biggest wings because they are so special. It brought tears to our eyes instantly, and Dave told Michael that was one of the nicest things he has ever heard. I am so proud of how special my boys are....

This week brings PT and speech, Early Childhood, and an OT visit at Mayo. Hopefully somewhere in there, I will find some motivation to finish painting my bathroom. UGH

Take care everyone!

Love Karla

Saturday, June 19, 2004 8:50 AM CDT

Good morning! All continues to go well here. Jacob had his recheck yesterday. His right ear is still infected. He had gotten 5 1/2 days worth of antibiotics before he went into the hospital. While there, he was on a strong antibiotic for possible shunt infection, which the drs said would cover his ear too. Well, either it didn't or the infection came back. The big news is he gained 12 more oz in the past 8 days!!! He is 19 lb 12 oz. The nurse reminded me of our 20 lb party we are going to have! The dr said name the time and place and I will be there! LOL Jacob continues to get so much stronger. It is amazing.

Michael also had his physical. He had his tetanus last year, so he's good to go. He was a little worried he'd need a shot. LOL He weighed 79 lb and is 55 1/2 inches. He failed the hearing test in his right ear, so we are going back to ENT for further testing. When they looked in his ear, they found his old tube with LOTS of wax growing on it. It was out, just hadn't fallen completely out. We thought he'd be able to hear better after getting that out, but no such luck. That right ear keeps giving us troubles.

We did a bunch of errands yesterday after the appts then went to Holly's to watch 50 1st Dates. That is such a cute movie. Definitely a must see. Today I am supposed to help at the concessions for a baseball tournament (one that Michael's not even in, go figure!) and then I might think about finishing painting the bathroom. It is only half purple right now. I think my motivation got up and left, but I am getting kinda sick of seeing it only half done. And I think the nurses will probably start wondering about me when they give Jakey his baths every week! LOL

Hope everyone has a great weekend! Remember to drop me a note to say how you are doing!

Love, Karla

Thursday, June 17, 2004 12:14 PM CDT

Hi everyone! I just realized it has been a few days since I updated. Jacob had his post op appt. on Tuesday. Everything looks really good. There is some pinkness around the site, but they didn't feel it looked infected, just healing. There was a little tear in his skin also at the site. It is healing well too.

Feeds continue going well. I feel much more relaxed too. I love being able to feed him baby food again. He tried some jello last night and liked it. Kinda made funny faces, but he liked it. Today he got excited when he heard me stirring his food. I think he knew what was coming!

We had a meeting today with the Birth to 3 team. His OT will be leaving mid July, so we will add the speech therapist who will also work on feeding. We are going to focus on feeding, trunk control, and sitting this summer. I want him to be able to smash his birthday cake this year and lick the frosting. :)

Speaking of birthdays.....his is coming up!!! Last year, we had a balloon release with so many of you! I want to do something special again for him, so any ideas would be greatly appreciated!!!

Hope everyone is having a great day :)

Love, Karla

Sunday, June 13, 2004 12:07 AM CDT

Good morning everyone! We are all doing very well here. The feedings are going great. He is tolerating them so well. It has been so nice knowing he is getting what he needs and not having to wrestle him down to eat all the time. He has been eating a jar of baby food each day as well and hopefully we will be able to add another one at night soon. He has 12 oz during the day of pediasure, which is really easy to get in. The site seems to be healing really well. We go back Tuesday for our post-op appt.

Thursday, Jacob went to the dr for a weight check and he had gained 12 oz in 14 days, making him 19 lbs even :) We have to go back every week for a weight check, so I am excited to see how much he grows!

Michael had a ball game Tuesday which they won. Thursday's game was cancelled because of rain. Friday and Saturday they had tournaments. They lost all those games. He will have games Tuesdays and Thursdays. Devin has t-ball Thursdays, so we'll have to figure out how we'll get to each of their games when they overlap. We are looking forward to a fun summer of games, swimming, and fun with family and friends.

Yesterday, the fence was completed. It turned out really nice. The dog has been in her glory running around the yard. Dave is trying to get the lawn mowed and trimmed today. The riding lawnmower needs a part welded back on it so if anyone nearby could help him fix it, I'd appreciate it! Just let me know.

Jacob has been in such a wonderful happy mood like usual. It sure is nice to see him so happy. We heard many comments today at church about how good he looks and how alert and animated he gets when the music is playing.

Take care everyone and have a great weekend!

Love, Karla

Wednesday, June 9, 2004 9:45 PM CDT

Good evening everyone! I am attempting to write a longer post without getting kicked off of the internet.

Yesterday, Jacob turned 22 months! We are working our way to the big TWO!!!! Here's a recap of the month.

Jacob weighed 18 lb 4 oz at his last checkup. I can't wait to see what he weighs now. I am sure he has gained a lot of weight :) He is about 31 3/4 inches I believe. He wears size 18-24 months. Some 2Ts fit even. He has a size 2 shoe still. Little, little feet!!! But when he has his AFOs on, he wears a 5. He wears size 3 diapers comfortably.

Jacob is getting stronger in his trunk and has started to do the wiggle. He will just wiggle around when you hold him. He will also straighten himself up so tall like he has a big burst of energy. His head control is improving still. He gets a little floppy still at times, but overall he is doing great. We are working on lifting that head while on his tummy. He can do it, but it is SOOO hard! He seems to have a firmer sitting position where I can just have my arm around his waist for support. His legs have been kicking like CRAZY! He likes to thunder kick sometimes! To that he adds his little wiggle :)

He tries SO hard to use his right arm. He wants to so bad. He'll pick it up with his left and guide it to where he wants it. He has been using it solo as well though which is so exciting. He gets mad at it though because it doesn't do what he wants it to all the time!

His processing time continues to be longer. However, with toys and such that he loves and knows, he will play really good with them. He seems to take everything in and really listens, chews on his hand, and such before touching it.

Now with the feeding tube placed, we will be able to reach our feeding goal! YEAH! He is drinking 28 oz a day, with water flushes as well. He is eating baby food again too. We are going to really try to focus on feeding issues this summer.

Socially, this kid is hilarious. He loves all the attention from people. He smiles and flirts, especially with those he knows, as well as the nurses!!! He is quite the ham when he wants to be. He will shake his head no just to be funny. He started this full face clown-looking smile. He's such a goof! He loves to laugh at Michael and Devin. In fact, they can't barely talk or breathe without him laughing at them. I just love how silly he can be.

Take care everyone!

Love, Karla

Tuesday, June 8, 2004 3:30 PM CDT

Hello everyone! We are home! I am having some problems with the computer, so that is why I haven't updated. We got home last night. Jacob's feeds are going good. He vomited Sunday morning after having his first overnight feed, yesterday morning they had to stop it for a little while, but he did great last night. He is so smiley and happy, laughing all the time the last few days.

So far so good though. I really like using it for his meds. Now we will see how much he grows!

Take care and hope you are all having a great week! It is hotter than heck out there and Michael has a baseball game tonight.

Love, Karla

Saturday, June 5, 2004 8:39 PM CDT

Good evening everyone! Thought I'd get on here before computer hours are over at the RMH! Today was another good day. He is so darn happy all the time, so that is wonderful. The nurses are loving him SO much, which of course he loves. The sassier the better for him. He just smiles and smiles and flirts like crazy. He was so excited to see us this morning which was SOOOOO cool. It totally made my day to see how he reacted to us coming in. His feeds are at the goal they had set for him, so tomorrow, they will discontinue the day time feeds and move onto nighttime feeds like we would at home. He is tolerating everything very well. His site is looking good and no fevers, even though he did feel a little warm today just to scare me a little. He ate some baby food this morning and even took a nice nap today. The weekends are very quiet in the hospital, which is a nice break sometimes from the craziness of the week when all the specialists and doctors are coming in. His antibiotics were done this morning. They ran them 48 hours, so hopefully if there was a chance of getting any infection in his shunt, the meds took care of it.

Hope everyone is having a great weekend. We came back to the RMH, Dave made spaghetti, I'm washing clothes, the boys are busy in the gameroom, and we will watch a movie shortly.
Please keep Jacob in your thoughts and prayers and continue signing the guestbook. I love getting messages!!!

Love, Karla

Friday, June 4, 2004 5:29 PM CDT

Hello everyone! We walked in this morning to a very smiley boy! He's back to his normal sassy self!!! We had a picture laying on the table of Jacob at 5:45 AM smiling and laughing with one of the nurses! LOL What a ham. He has been awake ever since. No nap today at all, crazy kid.

The surgeon came by and said everything looks good. He will be on antibiotics for a couple more days to cover the risk of a shunt infection. We are looking at coming home Monday.

We had lots and lots of visitors in and out today. Deb, our spina bifida clinic nurse, the OT's and PT's we have worked with here, the social worker, 2 dieticians, and then the physical medicine doctor along with the OT and PT. We had some serious discussions about Jacob's therapy needs, how much is expected of us, as well as what can we truly expect him to do. I have thought long and hard about many things over time and one thing I think I have always done is be realistic about what Jacob is going to be able to do. It was nice to be able to figure somethings out in my mind and get some good ideas on where to go from here.

Tube feedings started today and he is tolerating it well. We had some teaching today about some aspects and will continue to do so over the weekend. The plans are in the works for supplies for us at home. I think it will take some getting used to, but it will be much nicer I am sure.

We are planning on seeing Harry Potter tonight with the boys. Deb reminded me to take time for ourselves and to use this time to relax a little too and do things with just Michael and Devin. Besides, the nurses love to cuddle him :)

Thanks so much for the guestbook entries. It is so wonderful to sign on and read them. Keep them coming! They help get us through all this stress. Sandi and Matt, your entry really touched me. Thanks so much. Matt, you are quite the kid!

Love, Karla

Thursday, June 3, 2004 6:20 PM CDT

Hello everyone! Jacob is doing pretty good. We were here at 6:30 this morning, he went in around 7:30 and I stayed with him until he was asleep. Surgery started at 8:30 and he was done around 10:30. He was in his room by 11:30. This is the same room he went to after his shunt surgery.

Surgery went well. There were only a few flecks in his bladder, so they aren't sure if he passed the stones or if his bladder is just thickened there so it looks like he has stones. He will have an ultrasound tomorrow to find out. His feeding tube looks great and we were able to use it for meds already. He is pretty dehydrated tonight however, no wet diapers since surgery and his mouth and throat are very dry. We saw only two tears today too. They increased his IV fluids. He will have 48 hours of antibiotics to hopefully ward off any possible shunt infections. It is a huge concern for them, but they are pretty confident he will be okay since they took precautions to help prevent it.

He has smiled a few times and I heard a little babbling from him too, but not for long. Hopefully tomorrow they will start some tube feedings and we will learn how to take care of it, etc.

We were able to get into the Ronald McDonald House today, so we will be heading there shortly since we are very tired. I think I got 2 hours of sleep last night and when I finally woke up, the alarm had been on for 45 minutes!!! Thankfully I had taken a shower last night. I get kind of weird about not being able to sleep when I know I have to be up early. Anyway, please continue to keep us in your thoughts and prayers. The info for the hospital is on the bottom of the page.

Love Karla

Wednesday, June 2, 2004 4:28 PM CDT

Hello everyone! Quick note before we leave for Rochester. Jacob will have his bladder stones removed tomorrow, as well as a feeding tube placed. So far so good on the health. Pray all night if you have to that he'll be healthy for the surgeries!!! We aren't able to get into the Ronald McDonald House yet, which makes me a little upset. It is so much easier to stay there and just walk back and forth. We are going to be staying at the Best Western Apache though which has a waterpark, so that is fun. Plus a yummy breakfast :) Jacob will be there at least 5 days, since they need to run a course of antibiotics as well to prevent any shunt infections. I am hoping to update again tomorrow once the surgery is complete and we are settled. It should be done late morning. Please keep us in your thoughts and prayers. If anyone would like to visit us or call us while we are there, we will be at St Mary's. I'll have my cellphone too for those who know that number.

Love, Karla

Monday, May 31, 2004 3:04 PM CDT

UPDATE We will be going to Mayo this afternoon (Tuesday) for a consult with the surgeon regarding a feeding tube. He would be available Thursday to place it along with the already scheduled surgery for his bladder stones. Please keep us in your prayers today as we attempt to make the best decision(s) for Jacob.

Happy Memorial Day to everyone! Thanks to those who signed the guestbook!

I just realized I haven't written since Wed. OOPS! We have had a lot of fun, busy days. Thursday, Jacob woke up with a fever. Devin was graduating from preschool and Michael had a picnic at his school that day, so we made an appt for the PM to see the dr. Devin was so darn cute in his cap and gown. Too funny. I will add pictures when I get them back. Jacob has an ear infection, so he was put on some antibiotics. It was also decided that a feeding tube is becoming more necessary, so the Dr Brumm is calling the surgeon at Mayo to schedule an appt. We aren't sure of that date yet.

Friday, Devin and I went grocery shopping once the nurse got here. Dave has been taking guitar lessons from a man at church, along with a few others, and so they decided to get together as a "band" and have their first "concert." One of the members offered her house and garage, and so we had a BBQ/potluck as well. It was so fun. Oh, and the best part was the band's name.....Holy Crap. Holy because it is church-based and crap because they sound like crap! LOL They even had t-shirts made which says Holy Crap (crap was in the form of a guitar) You get what you Pay (this word was crossed out) Play (this was also crossed out) PRAY for! On the back they had their Tour dates. July 4th was a concert on the White House lawn, but it was cancelled! LOL Very funny!

Saturday, Holly, Maya, the boys, and I met Lea, our friend from the Ronald McDonald House, and we took all the kids to McDonald's playplace for lunch. It was so fun visiting and catching up with her. It has almost been a year since Damian, her little boy, died. Holly and I gave her a wooden velvet-lined memory box with "I am with you always" engraved on the front, along with a place for his picture. It is beautiful.

Saturday afternoon, we went to my cousin's graduation party. My mom was there as well. She came home with us afterwards and stayed until today.

Sunday, we went to church. After lunch, my mom and I finished my laundry room. It is a really pretty blue. We put up a border which looks like a clothes line with clothes hanging on it. I hung up my own mini clothesline on the wall and hung up some of the boys' baby clothes. It is so cute!!! Then I hung up the other laundry wall hangings I had bought. It turned out really nice.

Sunday night, Holly and Maya came over for supper. We sat around and visited, and then played some cards.

Today, we have been lazy. We played a few games of Scrabble this morning and then Dave's mom came over to grill out with us. Jacob has been in the best of moods lately too, so it has been a nice weekend.

Michael is done with school on Wed. We will leave for Rochester once Dave gets home and knock on wood, Jacob will have his surgery on Thursday. The only thing that may prevent that is if they decide to reschedule it so that he can have his feeding tube placed at the same time. I'll keep you updated on what's going on.

Hope everyone is having a wonderful weekend!

Love, Karla

Wednesday, May 26, 2004 5:31 PM CDT

Hello everyone! Funny thing how I can have 100 hits a day and yet no one has signed the guestbook since FRIDAY!!!!

We had a fun time at the movie theater on Sunday. Shrek is hilarious. The movie was sold out, so we had to buy tickets for a later showing. Sunday, I bought paint and whatnot for my projects. So far, I have painted the laundry room a really cool dark blue, kinda like denim color, and need to just do some touch ups and put up the border in there. I got a border which looks like a laundry line. I also got some laundry wall hangings too. The things you can find at Menards... LOL

Monday, I had a meeting at the county building. I am a part of a coalition starting in the county for children with special needs. We will be addressing many issues, but my favorite is called a single point of entry, which basically means that when a parent finds out their child has special needs, they can contact one person/agency who will direct them to a variety of resources in the community. What I have found to be very frustrating is that any resource I have used has been totally sought out by me and that all services available to me have not been disclosed. When I mention such services to those I work with they will say, "I know about that!" and it is so frustrating because I feel someone is picking and chosing what is being told to us and what is not. So anyway, I am glad to be a part of this group.

Tuesday, we picked up Jacob's splints and AFO's. The AFO's will help with weightbearing so his ankles aren't so weak. I had to put other shoes on him over the AFO's so he went from a 2 to a 5 instantly! LOL

We continue to struggle with the feeding issue and I am frankly tired of it. I just don't know how much more I can take of any of this frankly. I am just tired of asking for help, yet no one truly helps. They give me expectations that are totally ridiculous and I jsut don't have enough time in my day to do all I am supposed to. Jacob is also getting very sensitive to others crying or making loud noises, so it is making it harder and harder to go anywhere. When asked what to do about this, I was told maybe I could go into a situation where others kids are around, like McDonalds and leave after 5 minutes....sure that will really work. I just give up asking for help and suggestions because it just doesn't and won't apply to him.

So anyway, I found out that the early childhood teacher Jacob will have when he transitions into the school at age 3 has a daughter with spina bifida. What a huge blessing since she will totally understand all the ins and outs of this birth defect and will be able to understand me and what I am going through.

I hope everyone is having a great week and write to me for Pete's Sake!!!

Love, Karla

Saturday, May 22, 2004 9:59 PM CDT

Good evening everyone! Not a whole lot of new stuff going on here. The posts for the fence were placed today. All 45 of them. WHEW!!! It looked like it was going to rain, but decided to hold off and all the posts are ready to go. They need to set for a while and then either next weekend or the following weekend, the rest of the fence will be put up. It will be so nice to be able to let the dog outside without having to watch her so closely, as well as the boys being able to be outside this summer without me needing to worry about them as much when I am tending to Jacob.

I also have been planning some painting projects for this summer around the house. We had planned to do some work in the house when we bought it and I didn't get very far, so it should be nice to get some things done.

Jacob had a good day. He decided not to take a nap today until about 7 and then only slept 1/2 an hour. Hopefully he will go to bed here soon. His eating is about the same. It's picked up a little since his cold is getting better, but still not what it was prior to the cold. His diapers are pretty wet though, so I guess I am not too worried.

On Friday, I talked to the OT who made his helmet. She is contacting the PMR doctor and neurologist to see if another one should be made or if we are just going to say enough and we did the best we could. His head has not changed much at all. It is still very thin and narrow and longer than the average head. It bugs me that this happened and continues to be one of the things I get sick thinking about. But what can you do? His head will just always look funny I guess. Hair is helping a little, but his hair is growing in really weird too.

Tomorrow, we are going to church and then we are off to see Shrek 2 for Michael's party with his friends. He is bringing 2 friends with and Holly and Maya are coming too. It should be really cute!

Take care everyone and remember to sign the guestbook to let us know you were here!

Love, Karla

Thursday, May 20, 2004 10:18 PM CDT

Good evening everyone! Jacob is feeling much better and is smiling and laughing again. His eating has picked back up a little, but we still have a couple ounces to go before we are back to what we were doing last week.

Today, Devin had an eye dr appt. His glasses Rx will be changed a little. I also made an appt to see if the prescription I received a few months back is wrong since I have been having lots of headaches. Around that time, my thyroid levels were off, so it is a possibility that I will need my Rx changed too. We then ran to get meds for Jacob and had lunch in the van on the way to Michael's school for his DARE graduation. Afterwards, we had to go to Walmart for a few things and then came home. There were a few good shows we watched tonight. The boys were all sleeping by 9 which is wonderful. Jacob has been waking up around 2-4 this week, so hopefully soon he will get back into his routine again.

Jacob has really been kicking his legs a lot lately. He gets so excited and his legs just go crazy. He has been stomping his feet on the foot rest too. Because of his spinal cord injury (the spina bifida) his level of function basically ends at his hips and sometimes his knees. Therefore, he does not use his legs at all. They basically just flop around. He can bring his legs upwards by using his hip flexors however. Well, lately he has been extending his legs and kicking and I just think it is the coolest thing to see. His whole body gets into it. It is just too cute!

Please keep two of Jakey's friends in your thoughts tonight. Maya and Corey are both in the hospital and can really use your prayers.

Love, Karla

Tuesday, May 18, 2004 8:03 PM CDT

Hello everyone! Jacob decided it would be fun to wake up at 2 and stay up until almost 5 o'clock this morning, crying and fussing. Dave made a Walmart run at 3:30 for Babylax since he hadn't pooped for 2 days and thought maybe that was the problem. It was part of the problem, but not enough to make a big difference in his less than desirable attitude. He has been a little bit better today. He took a 3 1/2 hour nap so that was nice. We've had a quiet week as far as visitors, therapists, and phone calls so far, so that has been nice.

In all the sanity that goes on around here, I got a good laugh tonight. We were sitting at the supper table with Dave's friend, as Michael starts throwing a fit that he couldn't roast mini marshmallows over the grill (yeah picture that one!) and Devin is flying through the room doing his loud superhero voice, and Jacob is crying because I coughed, and I was reminded of a wall hanging my mom had and is so fitting for our house:
Welcome to my happy home!
Come in, sit down, converse.
It doesn't always look like this,
Somedays it's even worse!

I laughed so darn hard as I recited that poem to Dave. Somehow he didn't find it as funny as I did! LOL

Hope everyone is having a good day. Hopefully tomorrow Jacob will be feeling better and my headache will finally go away!

Love, Karla

Monday, May 17, 2004 10:27 PM CDT

Jacob is absolutely miserable today. He only ate 15 oz. all day and that was pushing it. He just won't eat. I gave him some yogurt tonight with meds thinking he loves it and maybe would eat, but he barely ate enough to get his meds in. He has cried almost all day. Anytime I cough, anyone talks too loud, or whatever, he cries. Michael said, "I think there is something seriously wrong with him." And I am beginning to wonder myself. There is no fever, I think it is just from his cold, but he is just not himself. We only saw a couple smiles today, no laughs, and only a couple times did he talk. His muscle tone is awful. He feels like a limp noodle. Hopefully he'll be better tomorrow. I talked to the pediatrician today and she didn't seem to think he needed to be seen yet. I really don't think there is anything they could do for him right now, but if he isn't eating tomorrow still, I may bring him in Wed. Please keep him in your thoughts and prayers. His surgery got rescheduled for June 3rd, but we aren't saying it too loudly around him, just in case he gets some crazy ideas!

Love, Karla

Sunday, May 16, 2004 8:33 PM CDT

Good evening! Well, we are at home because Jacob will not have surgery again tomorrow. He and I both got a horrible cold from our visit to Mayo last week. UGH. So once again we cancelled. I called the urologist on call, and he will inform the service that we will not be there tomorrow. So we try again I guess. Jacob looks absolutely miserable and it scares me a little. He had a slight fever last night and now this AM he didn't want to eat much because his nose is so congested. I got him some decongestant in hopes of drying some of it up.

Yesterday was Michael's 11th birthday. We celebrated by going out to eat pizza and then went to the children's museum. He picked out a movie to watch last night too. We had a nice day.

Today, we had the last day of Sunday school event. The kids sang in church and we had the worship and praise band. They sung Testify to Love and that song gets me everytime. I couldn't help but cry. If you have ever seen the Touched by an Angel show that was on, you'll know why.
Afterwards, they had a chicken Q and games for the kids.

There have been some things weighing pretty heavy on my mind lately. I have been trying to reduce some stress around here and so after talking with Deb, our nurse, I decided to talk with the pastors at church regarding needing some help. They discussed it with a committee at church and I was contacted by someone about how and what they can do to help. We have talked about Dave and I having a date night and so we will see if anyone in the church is respite certified or willing to watch the boys. When I am at Mayo all day, it is hard to come home and want to cook a meal, so during appt days, someone would deliver a meal to our home. We also discussed having a list of people who would be willing to help do repairs as needed and possibly building a wheelchair ramp. I think these things would be very helpful.

It is hard sometimes to figure out how much I say to others, how much to ask for help, how much to share about how I feel because I am not sure how others will interpret it. Sometimes I feel like as time goes on, no one wants to really hear it because they have heard it before. That I am rehashing the same things over and over. That we are still having the same issues and problems, the same stresses. But reality tells me this continues to be a challenge, that things never really get easier. Some things do, but new stresses continue to fill those areas. All the while, I continue to enjoy Jacob as well. He really is a sweet, sweet boy. That fact is really not debateable. That is one constant in all of this craziness. I do struggle with his lack of development, with the reminders that we are on a different path. It can be the simplest thing that happens. Like today, I saw a swing I wanted to get Jacob, but looking at it closer, I knew that he'd never be able to sit upright in it. Then others with babies the same age are talking about theirs sitting on a regular swing and being able to hold on. Now how am I supposed to respond to that? One part of me is happy for them. Doing that is a big step! But the other part of me knows we won't experience that, that we aren't even able to swing without being held closely in mama's arms. I try, I really do, to let those things not affect me. I am simply happy that Jacob is alive, but somehow that doesn't always help the ache in my heart. The normal worries of a child having a cold or ear infection, running too fast and scraping their knees, putting up the gate so they don't bump down the stairs, etc have been replaced by so many others worries. Real worries about did he get enough to eat today? Did he get his meds on time? We need to keep him healthy enough to have surgery. Has he spent enough time on his tummy today? Did we do his stretches?
And what about his diapers? Were they wet enough? What appts need to be scheduled or what appts do we have this week? All those things and more run through my mind everyday. And yet, I question if I should say any of this because over time, do people want to keep hearing the same things over and over? Yet this is our journal of our life with Jacob...and as much as some people may wonder why I keep rehashing the same feelings over and over, this is our life. Sometimes I hate it, but most times, I have learned to embrace it. Sometimes I wish I could just rewind and do it over again, but most times I don't. Sometimes I wish I could scream at the top of my lungs how unfair this all is, but then I look at Jacob's sweet face. Sometimes I wonder WHY? Why didn't he "just" have spina bifida? Why did his head have to be shaped like this? Why US? and then I get a sneakpeek into the wonders of God's miracles. I guess most times I just realize that it's because I am a mom, a mom to 3 wonderful boys, one of which brings so many emotions,that I hurt so badly, yet also feel things so deeply.

I hope you all had a wonderful weekend and that as you look at your children, realize how blessed you really are.

Love, Karla

Friday, May 14, 2004 10:53 PM CDT

Hello everyone! Jacob had OT visit yesterday, but they didn't do a whole lot. I want him to work on laying on his tummy more. He tolerated a long period of time yesterday and today. He even lifted his head up a little.

Today, the vision specialist came. She thinks he has made some nice changes since the last visit and recommended that we continue doing what we are doing.

Jacob ate 23 oz today, plus baby food and 3 oz of water. YEAH! Big change. His diapers have been really wet. He started the reglan today which will help his tummy empty faster.

Tomorrow is Michael's 11th birthday. The cool thing is Devin's birthday was on a Wed. and that is also the day he was born. Michael's birthday is tomorrow and he was also born on a Sat. He wants to take a couple of friends to see Shrek 2 when it comes out. Tomorrow we have some people coming over to help set up the fence posts and after that, they will plan on when the rest of it will go up.

I have been having lots of pain in my shoulder and neck/head again. So much for the effects of therapy lasting too long. I wonder what I am supposed to do to prevent this...just too much stress not to I guess.

Please remember to sign the guestbook. I enjoy hearing from you all. Jacob will be having surgery on Monday, that is if he doesn't catch my cold first. We have all been healthy, but of course now I have to come down with something. UGH

Love, Karla

Wednesday, May 12, 2004 10:10 PM CDT

Good evening everyone! We are home and Jacob is happy. Well, when isn't he happy I guess! He did scream for the last 1/2 hour home. I tried to sing If You're Happy and You Know It, but he didn't think that was too funny. He'd scream even louder. LOL

Jacob had a stomach x-ray this morning where he swallowed barium and they watched it go down. Structurally, everything is formed normally. No concerns there. Jacob hated the barium and thought that if he bite the nipple and smiled at everyone, that maybe he'd be cute enough and he'd get out of the test. No one fell for it...sorry buddy! We resorted to the syringe and they got enough in him to do the test. He needed a bath afterwards since he kept spitting it out and then shook his head in it. YUMMY.
Matt, he is not glowing anymore. He pooped it all out! :) Too bad you weren't with me to change his diapers!!!

After the test, we went to see Deb and she set up an appt for his splints to be made at the prosthetic shop in Rochester. Deb and I went down for coffee, well I had a cooler, and visited for a while about Jacob. It is so wonderful to have someone I can talk to and who helps put things into perspective.

We then went for his splint casting. They used the casting material and then cut it off. It was funny to see his legs look like that. They will be sent to La Crosse and fitted here, so that will be nice. He will have nighttime extension splints and AFO's.

We got some lunch and headed back to RMH. Warren, the chaplain from the hospital, came over for a visit. It is always so wonderful to talk to him as well, because he too puts things into perspective for me. Jacob slept most of the time, but woke up at the end to show off a little.

We headed over to the clinic, only to have to wait over an hour to be seen. Jacob talked the entire time. In fact, he has been singing for the last 2 days. It is hilarious. When we finally got into the dr, he ate some food and then was ready to sing again. The dr would stop and say, "Now Jacob! What do you have to say about that?" and he'd stop talking. Then she'd go back to talking to me again and he'd do it again. She'd say something to him and he'd stop. It was rather funny. I am seeing some patterns in his interactions with others and I think he is understanding a lot more than we know. She said everything looks fine. His GI tract is formed normally. He was a little slow to empty at the 4 hour time period, but nothing grossly abnormal. She put him on some meds to speed up the emptying of his stomach and maybe that will help with the amount he can consume and the vomiting. If he continues to have periodic vomiting, he will need to have a CT scan to make sure his shunt is still working okay. A G-tube is still a possibility, but because the tube would be placed close to the area where the shunt tubing lies, the risk of infection is greater, so it will be a wait and see game for now. If it becomes necessary, then they will sew the stomach to one side somehow so as to reduce the risk of infection to his shunt.

We got back to RMH and packed up. They had a house dinner, so we ate first, Jacob had his bottle, and then we left. We got home a little after 8.

Tomorrow, we go back to the daily grind of therapy and what not. It was so nice getting a chance to visit with other parents again at the RMH. It helps to refresh my spirits again a little.

Take care everyone.

Love, Karla

Tuesday, May 11, 2004 4:56 PM CDT

Hello! Tests went well today. He had to drink some radioactive stuff mixed into his bottle. Then every hour we came back to take pictures of how it was going through his GI tract. I got a puzzle finished as we sat there waiting. At least I had something to do! LOL

We came back to the RMH and took a long nap. It is nice to be able to relax a little too. We are going out for supper again tonight with Kelly and Carl. Not sure where yet.

Tomorrow he has his stomach x-ray and then his appt with the GI doctor again. We also are going to have a visit from Warren, the chaplain at St Mary's and maybe see if we can be a checker with the OT to get his splints made.

Hope everyone is having a great day! Drop us a note to let me know you are thinking of us!

Love, Karla

Monday, May 10, 2004 8:24 PM CDT

Hello from the Ronald Mc Donald House! We came last night and had appts today. We saw GI today and she has a couple of ideas as far as why he may be throwing up, or basically dumping his tummy after he eats a few times a week. She said it could be from slow motility in his GI tract. This happens a lot with neuro kids since that part of their brain doesn't function well. It could be a kink in his GI tract, which happens sometimes in Spina Bifida kids. There could be some irritation still from the ACTH shots. Or lastly, and my least favorite reason, it could be from his shunt. He is going to have a gastric emptying study where he drinks his bottle with some special junk in it and they will see how fast his tummy empties. Then on Wed, he will have a stomach x-ray in the morning and see GI again in the afternoon to follow up on the reports. There is some concern with his size and discussion if a feeding tube would be appropriate, but because of his shunt, it would need to place extra carefully so not to cause a shunt infection (the shunt drains into his peritonial cavity.) We then went down for a blood test and to get a stool container. We saw nephrology today as well and she was pleased with the increase in his urine. Double what it was last time. She didn't feel that a feeding tube was necessary just for the fact of his fluid intake, but if GI thought it was necessary because of his growth issue, then it would be a bonus for the intake issue as well. However, if in the next 3 months when we have our next visit and he has produced more stones, then she would say yes, it needs to be placed.

Holly and Maya were here and Kelly and Carl as well, so we ordered out from TGI Friday's and watched Survivor. Holly and Maya left tonight. Kelly and I went to Bon's Buffet for Chinese tonight. YUMMY! It is fun visiting with friends we have made here at the house.

We have to be at St Mary's at 8:00 tomorrow morning for his test. He was NPO at 8:00 tonight, which doesn't really matter since he never shows he's very hungry anyway. The GI doctor said his appetite center of his brain may not be working.

Hope this finds everyone well and I will hopefully update tomorrow after his appt.

Love, Karla

Saturday, May 8, 2004 9:19 PM CDT

Happy 21 months to me! Yep, this is Jacob, back for another journal entry. I asked my mom if I could take over today and she was glad to let me. Another happy day around here! I have continued to brighten everyone's day with my smiles, giggles, and kisses. The kisses have been interrupted with an occasional bite lately. My mom doesn't think it's very fun and Devin didn't like the chomp I took out of his ear that one day. I tried to say I was sorry by smiling at my mom really big when she scolded me. I think she fell her it. She's kind of a sucker that way! Works everytime! (Score two points for the Jakester!!!)

I am finding out how fun it is to talk all the time. My favorite sound to make is done done done. I figured out that my tongue is quite functional and if I stick it between my teeth I can make some really cool noises. If mommy calls my name, I like to say UH and if she says I love you, I answer her back with a long UHHHH. I think she has caught on to this means "I love you too." That mom is pretty smart, so I think she does.

I have been kicking my legs out a lot lately. It is fun to do tummy crunches too. I hate when people think I am a baby or something and make me lie down. I want to sit up and see everyone like a big boy. And if one more toddler and his/her mommy says look at the baby, I think I may have to slug them. I feel like screaming at them, yeah I may be little, but I am older than you pal!!! It does get rather annoying. My mommy and I also think it is hilarious how everyone will try to tickle my feet. I want to say, you could tickle them forever and I won't feel it, but I don't because I like making them look stupid tickling me forever. Hee hee. I am getting closer to rolling and someday when the time is right, I will do it. I need to make it spectacular though, so I am holding back a little.

I have grown a little this month. I am 31 3/4 inches and 18 lb 8 oz. I am wearing 18 and 24 month clothes, size 2 shoes, and size 3 diapers. My feet are finally starting to look bigger. I have 16 teeth now. I just need my 2 year molars.

I have started finding more things hilarious and laugh a lot everyday. Devin continues to be the funniest person I have ever met. He makes such funny noises and I can hear his voice anywhere we are. Michael is pretty funny too, but I tend to like to snuggle with him a little more. He kinda protects me. Sometimes he comes and gets me when I am crying in my crib and then he swings me around. It is lots of fun. He also likes to give me rides in the laundry basket or run me through the house in my wheelchair. All those fun things babies do, but I appreciate it so much especially since my legs don't work so great and I can't do those things like other kids my age. He's a pretty special bubba.

Mommy thinks I can see a little better because I turn my head toward people more often. I also love my little room and can make lots of noise with the toys in there. It's pretty cool. I talk to them, but they don't talk back darn toys.

I saw Dr Brumm on Friday and I see a new doctor on Monday at Mayo. She is going to help decide if I should have a feeding tube. I know that my mommy tries so hard to feed me. I know that sometimes I just need a little extra help and that it doesn't mean my mommy didn't try. I also know that my mommy will do what's best for me. I trust her decisions since she has always had my best interest in mind. I also have to see the nephrologist again. Mommy is having me pee in those funny little bags again. The dr wants to see what my pee looks like for 24 hours. Let's just say it isn't the most fun thing I have ever done! We have to be at Mayo early Monday morning, so we are staying at Uncle Donald's House with Maya and Holly. Maya likes to call it that, which drives Devin absolutely crazy. Devin's kinda fun to drive crazy sometimes! We are hoping to see Carl and Kelly too. Maybe they'll watch Survivor with us! I hope Rupert wins!!!

Tomorrow is Mother's Day. I feel very lucky to have such a great mommy. She takes such good care of me, pushes me to be the best I can be, gives me great hugs and kisses, and loves me just the way God made me. I know sometimes she gets sad and struggles with how much God has given her, but I thank God everyday that He trusted my mommy so much. I love you mommy!!!

Please remember to sign my guestbook. I know a lot of caringbridge families have expressed how much it means to read the words of encouragement from others. Our mommies and daddies go through so much, emotionally, mentally, physically and spiritually raising us special angels. It helps lift their spirits to hear from others. To be encouraged to keep on going. To know that after a hard day, they can come to their website and read a note from someone. Their struggles don't end just because they have been doing this for a year or two. Their struggles just change and it helps to know that others are thinking of them. So please sign my guestbook! Especially if you have never taken time to do so or haven't for a long time!!!

Love, Jacob

Wednesday, May 5, 2004 7:23 AM CDT

Update:Added new pictures!Good Morning! Jakey got tooth #16 yesterday morning! His right bottom eye tooth. We continue to try to get Jacob drinking more. He has been taking 20 oz daily, some food, and with 1-4 oz of water besides. His diapers have been wetter which is a good sign. It takes a lot of urging to get him to eat this much, but it has been okay.

PT came on Monday and was pleased with his progress. It has been 2 weeks since she's seen him. He laid on his tummy and lifted his head up a few times for us. This is a huge thing since he is still very weak in his back muscles. Early Childhood came over yesterday and he was putting on the charm. We continue to witness his delayed processing time when he plays with toys. It takes him 5-15 minutes to even want to touch a toy that he has just been introduced to. He listens to it, seems interested in what it does, but it just takes him that long to want to interact with it.

Last night, we went to the circus with Holly and Maya. After finally getting the lady in the box office to understand there were two kids in wheelchairs and that no, Jacob was not sitting on my lap, and no he wasn't over 2, and that we had 3 others besides, we were seated in the wheelchair section. Dave and the boys were seated up and over a section. I tried to get them by us, but she wouldn't, only to see 3 open seats right below us. Once the intermission was over, I had them come sit by us since there was another chair open next to me. The kids had a great time. It was the Ringling Brothers circus. Very entertaining and awesome acts. Jacob started crying right away when everyone clapped and screamed. He hates screaming. After that, I'd just say YEAH! to him and he'd smile, no more tears. It was cute. I think he liked all the noise and lights. He was even trying to clap himself I think. Maya didn't like how loud the motorcycles were and plugged her one good ear with her finger. It was quite hilarious.

Jacob just had an eyelash in his eye and now it is all red. For those of you who have seen his eyelashes, you can just about imagine how much one of those bad boys would hurt!!!

We are going to Moms group this morning. Tonight, Michael has baseball practice. Tomorrow, Devin's school has Hans Mayer, a children's musical artist, coming. On Friday, Michael has the 5th Grade Bash, where the kids go to the middle school for a dance, food, and fun. I am chaperoning. I think it is a neat idea. Saturday we are having Dave's brother over for supper and Sunday we are off to Rochester in the afternoon since Jacob's first appt is at 8:00. We have to be there in time for Survivor of course.

Hope this finds everyone well. Please remember to sign the guestbook. I like hearing from all of you too.

Love, Karla

Monday, May 3, 2004 10:01 AM CDT

Hello everyone! I talked to Deb the nurse on Friday for almost an hour. I was telling her it is nearly impossible to feed him 24 oz plus water, juice, and pedialyte and still get in food, etc. like the nephrologist wants. The only time he has eaten to the capacity they want him to is when he was on the steroids. He nursed a lot before, but we aren't sure exactly what he was getting. Anyway, there is talk that he will need a feeding tube. She is so wonderful. I was crying on the phone to her and she just always knows what to say to put things into perspective. She acknowledges how much this sucks, she acknowledges that things aren't normal, but yet she acknowledges that Jacob is a wonderful little boy that deserves the best. She knows I can't do everything, nor does she expect me to. She gives me advice on how to ease some stresses, to get a break, and tells me how great I am doing. I would be lost right now without her.

The ped. called me later on Friday and says that her suggestion is going to be getting a feeding tube too. That he needs more than what he is taking. We feel it is linked to his neurological issues. That his brain is still like a newborns so he only takes what a newborn would. I am heartbroken in many ways. I feel like it is just one more thing, one more reminder that he is not and will never be normal. The other side of me feels that it would be a good thing so I and others aren't stressing so much over how much he eats. He can do the normal bottles and food during the day, and hook up his feeding tube at night. It just is a lot right now and will mean lots more appts to get stuff figured out right now. We have to go back on the 10th for appts and then on the 17th he will have surgery to remove the bladder stones.

With pushing Jacob to eat, his diapers have been much wetter. He is eating about 20 oz and even took some water. He refused to take it from the bottle, so I took the nipple off and poured it down his throat. He had no choice but to swallow! LOL (really I am not that mean!)

We had a nice weekend overall. We had the boys' birthday party on Saturday and Michael had his first communion on Saturday night. Michael's dad was there, he took communion with me, and even helped give it to him. He's not very religious, so I thought that was really special. Dave came up there too. Pretty cool.

Jacob was in his glory with all the attention. He flirts so incredibly bad, to the point of being pathetic. LOL He loves my mom and my sister so much. My mom was holding him Saturday night and was just smooching on him. He was eating it up so bad. Yesterday, she rocked him. He decided it was much more fun to smile at grandma than sleep.

I have figured out why I have been so sad and angry lately (another one of those stages I go through I guess.) It's because of Jacob weaning. I am so heartbroken he is done nursing. It wasn't how and when I thought it would happen. It was the one thing we had together that was so special. It is what got me through his hospitalization, it is what I could do for him. It has been incredibly hard and I am still reeling from it. That and the nursing hormones aren't there anymore! UGH

So anyway, just thought I'd keep you up to speed with what's going on around here. We have lots of activities for Michael and Devin's schools this week, so it should be fun to focus on them before going back to Mayo next week.

Love, Karla

Friday, April 30, 2004 2:27 PM CDT

Today marks the two year anniversary of the start of our journey. Some of you were there with me during these sad first days, and some of you I met along the way, so I am going to tell you about how it started.

I had an ultrasound at 16 weeks which showed the baby was developing normally, but we weren't able to see the sex. I wanted to know this time around, so it became a joke that I had to think of some reason to get another ultrasound. I began having what I thought were gallbladder attacks, and so I called my dr who put it off at first, but then said it would be a good idea to have an ultrasound to figure out what was going on. At first they were only going to check my gallbladder, kidneys, liver, etc. but I told them I really wanted to see the baby too. So after approving it through the dr., I got to see Jacob too. The first view of our baby was definitely all boy. No doubt about that! I was a little disappointed at first, but then I watched him moving and kicking and the thought of having another boy wasn't so bad.

It was then that the tech started looking at his head. She spent a lot of time looking at it and I could tell it didn't seem right at all. Instead of round it looked more lemon shaped, with the corners kinda dented in. She then left and came back with another higher power wand and looked some more. She left again and came back with a huge medical book and another tech. I asked what was wrong with his head. Of course they couldn't say anything and said it could just be the angle they were looking at it. I knew that wasn't true. Meanwhile, Dave is clueless to the world and didn't realize things weren't right. They told us to wait for the radiologist to come talk to us, but they couldn't find him, so they sent us home.

I went back to work and told everyone something didn't feel right at all. That night, I came home and started looking on the internet for ideas on what could wrong. The weird thing is I KNEW it was hydrocephalus, I just didn't know how to spell it! I don't know how I knew, I just did. At 8:45 PM, I got the call from my dr that I was dreading. She said, "Hi Karla, this is Cheri Olson. I am calling about the results of your ultrasound." Right then, I knew it wasn't good. Drs DON'T call at 8:45 at night. She said that my gallbladder, liver, kidneys, etc were all fine and they saw no source for my pain. However, they noticed fluid on the baby's head and it didn't look good. She said they didn't see an opening in his back (spina bifida) however which was good. She said that he would probably be born early, he'd need a shunt, told me what it would do, that he could either be mentally retarded or have super intelligence. That she was doing research on it before she called me so that she could tell me more about it. She said that I would either need to go to Gundersen Lutheran in La Crosse to see a fetal maternal specialist or to Mayo Clinic, that she would not be able to deliver him. Right then, I knew it was REALLY serious. She asked if we knew what we were having and if he had a name yet. She wished us the best and said she'd be praying for us and that she'd contact me tomorrow with updates on where she thought we should go for the best care.

I hung up the phone and was completely numb and in shock. I sobbed from the depths of my soul. I have never cried so hard up to that point. Dave and Michael became hysterical and they didn't even know what was going on. It was horrible. I remember shaking so hard and throwing up just sick to my stomach even thinking there was something wrong with our baby. We didn't sleep much that night. I think I spent most of the night sobbing. The next day, I had to go to work because I didn't have many personal leave days left. It was a horrible day, but I made it through. The dr. called me at work numerous times to arrange appts for May 8th at Mayo. We wanted the best doctors available for our special guy.

It was the longest wait EVER. May 8th finally came. We were to receive some answers. We met with a genetic counselor, had an extremely long ultrasound, and met with the doctor to review the results. The genetic counselor knew just by looking at the scans from La Crosse that Jacob would have spina bifida. I really had thought this myself, even though they were unable to see an opening in La Crosse. It was a relief to know what we were dealing with. Jacob proved to be a stinker during the ultrasound. He moved around so much they had a hard time getting a good view of his back. They knew it was low and that he had good movement at least for the time being. He also did not have clubbed feet which is pretty common with SB kids. His hydrocephalus was severe however. The rest of his organs looked healthy. At least we had some positives to hang onto. When we met with the dr, he asked about an abortion, but said he felt from talking with us, we wouldn't want one and he said it was getting too late in the pregnancy anyway. I said ABSOLUTELY NOT. He might not be perfect or this may not be what we had planned, but he is our SON. The day was extremely emotional and hard, but a relief at knowing WHAT was going on.

The next day, we went back to Mayo to meet with the neurosurgeon and get his opinion on things. I left this appt crying and cried all the way home. I should have known then just how delightful this man would be to work with! Actually, he is a wonderful dr, knows his stuff, but he is extremely blunt and his bedside manner could use some touching up.

We followed up with my doctor in La Crosse and the specialist at Mayo for the remainder of the pregnancy. When it appeared the hydrocephalus was getting too severe, we did amnios to check his lung development. Two amnios later, he still wasn't developed, but they couldn't wait any longer, so Jacob was born at 36 weeks.

And the rest is history :) If we only knew then what we know now, I think somethings would be different, but you can't go back and wonder about all the what-ifs. It doesn't get you anywhere. What I do know is that we are sure lucky to have such a wonderful little boy.

Love, Karla

Wednesday, April 28, 2004 7:06 AM CDT

HAPPY 5TH BIRTHDAY DEVIN!!!! I can't believe he is that old already :) His birth was quick and wonderful. He was born in 3 hours and 40 minutes, completely natural with no pain medications or interventions, all of which I am very proud of. Devin was a huge blessing to us, and I mean HUGE! He was 11 lb 1 oz and 22 1/2 inches long!!! You'd never guess it now. He's not very big, 42 lb and 41 1/2 inches. He is having a party tonight with a few friends and then Saturday we will have a family/friends party along with Michael's birthday celebration and 1st communion. It is nice that Michael's birthday is May 15th so we can celebrate the two together.

We spent the last two days at Mayo. Monday, we saw Dr. Kuntz in neurology. She is very thrilled that the seizures are under control right now, but concerned that he has developed bladder and kidney stones. We discussed putting him on the ketogenic diet, which is a diet high in fats, no sugar, which often works for seizure control. We were going to come back and begin training on it that afternoon, but after talking with the nephrologist, the kidney doctor, they all felt it would be better to leave Jacob on the Topamax and try to increase his fluids instead.

We then saw Dr Voight in Developmental Peds. He reviewed Jacob's skills and I was happy to tell him about his gains and progress since getting his seizures under control.

Our last appt was with Dr. Shaughnessy, the orthopedic surgeon. He reviewed Jacob's hip x-ray, and he feels his right hip looks fine, that it isn't only 50 % covered like originally interpreted. He thinks it was how his leg was positioned. He also agreed with getting him in a stander, but because of his weak ankles, we need to get AFO's (ankle, foot orthotics/braces) to keep his ankles straight. We also discussed his lack of weight bearing in general. While Jacob has a level L5/S1 visible defect on his back, he feels his function is L1, which means his spinal cord damage is higher than his defect is. This is very common with Spina Bifida kids. The spine has different sections, His is in the lower back, the Lumbar area (L) right below that is Sacral or your tailbone area (S). It is also more complicated because of the huge area of brain damage Jacob has, not to mention the damage that possibly came from the meningitis, ventriculitis, and BLAH BLAH BLAH. Anyway, the dr said Jacob would be a fun patient to have for med students to try to figure out without giving them any info, kind of as a last exam before they can graduate. I THINK that was funny....or at least I think it was supposed to be. I guess you have to find some humor in all this crap. The good news is, he didn't feel there was any need for surgery at this time.

Tuesday brought more appts, so we decided to stay over at the Ronald McDonald House. Holly and Maya were there too. We went out for supper and shopping. It is always fun to have a friend there to hash stuff over with. Kinda like free therapy. LOL

Anyway, Tuesday we saw nephrology. His 24 hour urine came back relatively okay except for a few values. His volume was grossly under the norm and 3 values showed that he basically has lots of sediment to cause stones, which we already know. The plan is to get him drinking double what he is in pediasure, plus to add water, juice, or pedialyte. How in the world I am going to accomplish this I have absolutely NO idea. He refuses to eat most of the time. His appetite is non-existent after the steroids. He will smile at you and just bite down on the bottle. He thinks he's funny. I am lucky to get 15 oz a day, she wants him to have minimum of 24 oz. Oh and not to mention Jacob thinks it is a really great party trick to projectile vomit if you give him too much to drink, so this should be fun. While I would do anything for him, I know he is not getting enough to drink and obviously is producing stones as a result, I just don't know how this is going to be accomplished. We are going to see GI as well and hopefully figure out some of the issues with his slow moving tummy.
Jacob also had labs to draw and then we stopped up to get prescriptions for his AFO's and night time leg extension splints. It was a very busy day.

When we got home last night, I took the boys to get their haircut. We dropped Michael off at Boy Scouts and came home. Devin decided he needed a little more hair cut off, so he took the scissors to his bangs. Yep, it finally happened. Of course I wanted to get his pictures taken this week. It is pretty hideous, but could have been a lot worse. I'm going to bring him back in and see if they can fix it a little more.

Tomorrow Michael and I are going to the MN Science Museum on a field trip with his 5th grade class. It should be lots of fun!

Hope everyone has a great day! Stop in and leave us a note. It has been a heck of a week and it is only Wed!

Love, Karla

Sunday, April 25, 2004 7:40 AM CDT

Good Morning everyone! I looked at the journal yesterday and realized the last time I updated was Tuesday. I don't know what happened to Wed, Thurs, Fri, or Sat. OOPS!!!

Jacob went to the ped on Friday for his pre-op appt. He will not be having surgery on Tues. We rescheduled it for Mon, May 17th instead. He has a cough, cold, and now this AM he has a fever. We will be going to the walk in when they open. Yesterday, he started having a more bronchial/croupy sounding cough. I talked to the on-call dr about getting him on antibiotics, since I knew what direction it was heading. He said no. I am going to have to talk to our ped and have her talk to the other drs about if we ever call on the weekends. I just don't always feel like they even know who Jacob is. Things are different for him and you can't just treat everything like you would with another child.

We will still go to Mayo on Monday however. He will see neurology, orthopedic surgery, developmental peds, and the nurse, Deb. I am excited for them to see the changes in him. He has started going in circles when you lay him on the floor. He pulls his upper body forward, like tummy crunches, and eventually works himself around in circles. He has continued to get himself on his side and I just know someday he will roll over. He's THAT close :) Laying on his tummy and supporting himself on his arms is still so hard plus he doesn't like it much. I need to be more disciplined about putting him on his tummy.

Amongst all the yucky germs floating around, Jacob continues to be his happy self. He flirts with everyone he knows, to the point of being pathetic, laughs at everything Devin does, and loves on Michael. It is so neat to see his reactions to the boys. Devin was being silly the other day and falling to the floor. Jacob was hysterical. Last night, Michael put Jacob in a laundry basket with a pillow and blanket and raced him from one end of the house to the other. He was giggling and smiling so big. He loved it :)

Hope everyone is having a nice weekend! We have been hitting some really good rummage sales this weekend too, which is always fun!

Love, Karla

Tuesday, April 20, 2004 9:24 PM CDT

Hello everyone! Hope this finds everyone well. We had a nice time at my mom's party. Jacob liked all the attention and was very social, flirting with lots of people, smiling, and carrying on a Jakey style conversation :)

We are back to therapy sessions again this week. PT came yesterday and brought a stander. This will encourage weight bearing and help deepen his hip sockets. Hopefully we will help prevent any further damage to the right hip and also keep the left hip in place.

Early Childhood came today and Jacob was playing with his absolutely obnoxious piano which has these balls that pop up REALLY loudly. He sat and watched us play with it for at least 15 minutes before he started hitting it himself. Once again, he proved that it just takes his brain longer to process what he wants to do. The other day he was laying in his little room and wanted to grab the bells with his right hand, but because it doesn't work the same as the left, he got very frustrated and started screaming. I gave him the bells in his left, and he instantly started chewing on them. That is what he wanted. How cool to see him making connections and being able to tell me what he wants!!!

We have a pre-op appointment with our ped. on Friday and then Monday we head back to Mayo for more Spina Bifida Clinic appts. Tuesday is his surgery and hopefully he will be well enough for it. Dave has bronchitis and a touch of pneumonia. Devin has the start of an ear infection and a cough. Both of them are on meds. Hopefully Jacob will be okay.

Take care everyone and remember to drop me a note in the guestbook! I am not a mind reader, so I don't know you've been here unless you tell me! LOL

Love, Karla

Friday, April 16, 2004 10:57 PM CDT

Just a quick note to say everything continues to go well. Jacob ate more today, but then promptly threw up all over dad. UGH. He is still his happy self though.

Holly and I hit a lot of rummage sales this morning with no kids tagging along! Devin and Maya were at school and my friend Kelly babysat Jacob. Thanks Kelly!!! It was nice to get out for a while. I found tons of clothes for Jacob so I think he is beyond set for the summer!

We will be going to my mom's birthday party tomorrow. It should be lots of fun! Hope everyone has a great weekend!

Check out the easter pics too. I added some the other day!

Love, Karla

Wednesday, April 14, 2004 6:51 AM CDT

Good morning everyone! I thought I'd update before sleeping beauty wakes up. We have had a busy weekend/week so far. We had a nice Easter at home. Monday morning we left for Mayo. We first saw Dr Driscoll in physical medicine. Jacob's hip x-ray report was in and he has 100overage on the left hip, but only 50n the right, meaning it is somewhat dislocated. The muscles that run on the outside of his legs are getting tight, so we need to spend more time stretching them. He sits/lays in a frog legged position all the time because of the lack of muscle strength, which in turn makes those muscles tight. His hamstrings are also still tight, which we use the extension splits at night for. We are having new splints made however, ones that will hopefully stretch him a little more and provide ankle support so he can start standing in a stander. Because he is unable to stand on my legs, his legs just collapse under him, we need to get him in a stander to start deepening those hip sockets. Hopefully we can keep him stretched out enough to keep any surgeries at bay for a little while. We also discussed needing a new thumb splint to work on his right thumb which tucks under his other fingers still. The one I have comes off a lot. While we were in there, Jacob finished eating a bottle and promptly threw it back up, which then warranted a visit to the dietician and GI doctor. We will hopefully see them at the end of the month. He has been having such a poor appetite and when he does eat, you have to limit him to 4-5 oz because anything over that he will throw up now. I don't think his stomach is emptying very fast.

Next we saw the social worker. It is always nice to talk to her and make sure we are on the right track with services and such. Urology came in next. They reviewed the CT scan from Friday and saw 1 stone in Jacob's kidney. It is small and in a place that shouldn't cause any pain. At this time, they will not operate on it, but will follow it closely. The CT of the bladder did not appear to have much sludge, so we had another ultrasound yesterday, which did show the sludge still and maybe even a little more. It appears to be pretty stubborn stuff, so he will have surgery on the 27th to remove it. I had collected his 24 hour urine over the weekend and was shocked on the lack of urine he is producing. I discussed this with them and they are also concerned that he is not producing enough which in turn causes the sludge and kidney stones. Hopefully when his appetite gets back to normal, his output will be more. It is such a vicious cycle because he just doesn't want to drink much.

We had an OT and PT visit yesterday as well and reviewed some things we should be working on with Jacob. We also were able to see some bathchairs that would be appropriate for him and will try to order one. He is still in his baby bathtub, so we definitely need a change! We got a new thumb splint as well. It is always nice to touch base with other therapists to make sure we are doing all we can for him. I know we can't predict the future, but sometimes it is hard to know what to wish for and what to know will never happen...Jacob is still so newborn in many ways as far as physical skills. Do we wish and hope for things to one day happen or are we fooling ourselves. He has made strides, but not huge ones and the ones he has made have been a long time coming. Sometimes I just feel like I want him to suddenly surprise us all and roll, sit, crawl, but then the other rational part of me knows I may never see my son accomplish any of that. So there is that conflict in my heart. When you have a disabled child, you kinda play that game. How much do you hope for and how much to you accept as reality so that your heart isn't hurt in the long run. And I know people will tell me, but look what he has already done! That is definitely not the point in my thinking. I am so very happy for what he has accomplished, but it doesn't change the facts that he is not only physically handicapped, but visually and mentally too, which makes the situation much more complicated. If he can't see well, where does his motivation come from? And if he is mentally handicapped, then the processing time is longer and sometimes we don't wait long enough for him to respond.

Michael and Devin also came with and enjoyed swimming in the pool both Monday night and yesterday morning before the ultrasound. It was lots of fun for them I think. I try to make it fun as well, not just sitting and being quiet while I talk to the doctors.

Not much else going on this week which is nice. Next week we will start back with therapy again. This weekend we are going to Hastings for my mom's 70th birthday party. We are excited to see everyone!

Take care and have a nice rest of the week!

Love Karla

Friday, April 9, 2004 9:17 PM CDT

Hello everyone! Another busy day. We had to be at Mayo at 8:30 this morning for a CT scan of his abdomen. He always does really good laying there. He is quite enthralled with the whizzing and whirling of the machine. He cried a little when I had to hold his hands above his head, but otherwise he could have cared less. He's so funny. Most kids would be screaming their lungs out and have to be sedated. Not him. He thinks it's funny.

We had a 4 hour break, so we went to Target, then to Toys R Us so the boys could spend some of their money. As I got out of the van, I noticed a screw in my tire. Oh joy....So off to Tires Plus we went, which happened to be at the end of the block. We walked across to the mall and window shopped and ate lunch, waiting for the tire to be fixed. Of course, it couldn't just be patched, it had to be completely shredding inside, so I had to buy a new tire. We have had SO much crap happen lately, and with the boys' birthdays coming up, etc we are so low on cash. I hope we can catch a break soon, because this really stinks.

On the way back to Tires Plus, we saw our Spina Bifida clinic nurse, Deb, and she stopped to visit a little with us. We go back to Spina Bifida clinic on Monday.

We saw the nephrologist after a long wait. He is trying to figure out the cause for his kidney stones so that we can better treat and prevent new ones. He was such a riot. I was telling him all the stuff that has gone on in the last month or so and he said nothing like throwing 15 things at him at once to try to sort out! Unfortunately it was his last day today, so another dr will be taking over. We are going to start with a 24 hour urine collection and from that, they will hopefully get a better idea of what his urine is made up of. Hopefully they will see what is too high in his urine, too low, or whatever and adjust things accordingly somehow. We will figure out those details once the urine is analyzed.

Hope this finds everyone well and that you have a blessed Easter weekend!

Love, Karla

Thursday, April 8, 2004 8:51 PM CDT

Happy 20 months Jakey! He's getting closer to 2 :)
We had a really nice day. Crystal and her boys and Amy and her boys came over today to color easter eggs. They had a lot of fun, minus a little fighting! Trevor was so cute pushing Jacob around in his wheelchair. Please check out the pictures. He pushed him into the boys' room and shut the door! It was so cute. Then he pushed him into the living room and later pushed him over to the window so he could see outside too. He would give Jacob toys to chew on and would push the buttons to turn on his Sesame Street radio. It was so darn sweet. I have often thought about how the kids will react to Jacob as they grow up. Trevor is 1 1/2 months younger than Jacob and Levi is 7 months younger. Will they play with him? Protect him? Reject him? It really warmed my heart to see Trevor being so sweet to Jacob and playing with him. It was just one of those things that can't even be put into words....to see him included and important. Pretty cool stuff.

We are off to Mayo in the morning for a CT scan of his abdomen and a visit to the nephrologist, the kidney doctor. I am hoping for good news, or at least okay news. Please keep us in your thoughts and prayers tomorrow.

Here's an update for the month!!! What a month of exciting gains! Better head control, pulling his head and upper torso forward while laying in his carseat and on his back, attempts to roll, stronger trunk and legs, and a little bit sassier attitude!!!

Jacob has such a cute personality. He loves to grab my face and kiss me passionately. It gets rather pathetic after a while! He only does this to me. He looks up toward me with a look of love and when he hears Daddy, he smiles right away. He loves Michael and Devin's antics, especially all the spitting noises boys make when they play super heroes. He finds burps, sucking air in, blowing your nose, and crying to be extremely hysterical. He will turn his head toward your voice more frequently and if you dare think about walking past him when he wants to be picked up, you've got another thing coming. I think his vision is becoming just a little better. I think he sees me walk past, not just hears me. He has become very intuned to the voices of people he knows and gets excited when they talk to him.

Jacob is wearing size 18-24 month clothes. Some 12 month still fit, but overall they are too short for him. He wears size 2 shoes and size 3 diapers. He weighed 17 lb 15 oz the other day at clinic, down 5 oz from last time. He is about 31 inches long. He has 15 teeth and he grinds them like crazy sometimes. You scold him and he thinks he's hilarious and does it even more.

Jacob loves his Sesame Street radio, his Farmer See and Say, his musini, and other toys he can easily activate. It takes him sometimes up to 5-10 minutes to process everything before he'll even touch his toys, but once he does, he loves to play. He is liking his little room much more than before and will get all the items in there moving like crazy. He still loves music and loves to lay on his changing table since the window is right behind him.

He is vocalizing like crazy. I think this has been the biggest joy for me this month. To not make any noises except a fuss or a cry and now to be making many vowel and consonant sounds while he babbles... WOW. It is so fun to listen to his pretty voice. He sounds like he is singing sometimes. He also makes his funny monkey mouth sometimes. I love it. I'll have to try to get a picture of it! He also chews on his fingers all the time and tries to poke out his eye, silly boy. As always, he continues to bring us so much joy and we are reminded of how everything he does takes a lot of strength and determination and that we are truly blessed.

Hope everyone is having a great week and that as Good Friday approaches, you put into perspective the amazing gift our Lord gave to us.

Love Karla

Tuesday, April 6, 2004 9:36 PM CDT

Hello everyone! Jacob just couldn't stand the lack of excitement, so he decided it would be fun to have a fever this morning. He wanted to make sure I was still on my toes, afterall there cannot be any slacking going on around here! So we made a little visit to the pediatrician and Jacob most likely has sinus infection. His regular ped. has Tuesdays off, so we saw another really nice dr. Since Jacob is otherwise acting his normal sassy self, she thought it was safe to put him on antibiotics. If it looks like he is getting worse or not any better within 48 hours, we should bring him back in.

I think Jacob is going to roll over soon. He was laying on the floor for a long time tonight and he does ab crunches. He'd get almost halfway over and then he'd roll back again. I am so excited to see his progress! It is amazing the things I took for granted with the other two. Now I can see just how hard some skills are to learn. It just makes victory ever so sweet :)

We spent more time outside today, even went on a walk. Jacob's expression is absolutely priceless. He so enjoys being outside. He jabbers and coos as we walk and just takes it all in. We also got another tooth last night, so that makes 15 total! Just one more eye tooth and his 2 year molars to go!

Please check out the new pictures from yesterday. They are pretty darn cute! And the boys playing operation...they sure crack me up. I would be so insane by now if it wasn't for their comic relief!

Hope everyone is having a great week! Please remember to stop in and say hi!

Love Karla

Sunday, April 4, 2004 4:54 PM CDT

New Pictures added!!!!

Hello this beautiful Palm Sunday! What a gorgeous day! We went to church this morning for the festivities. When we got home, the boys watched a movie, Dave went to the store, and Michael ended up falling asleep on the floor. Jacob and I didn't want him to be lonely, so we fell asleep too. SHHH Dave doesn't know that yet! LOL I slept for 2 hours!!!! It felt so good to take a nap. I NEVER do that! Jacob is still sleeping. I sent the boys outside, I did a few chores around here, and as soon as Jacob wakes up, we will go for a walk.

Jacob got his left top eye tooth on Friday. Now all we need is his bottom eye teeth and his 2 year molars. We are doing pretty good at catching up to where he should be for his age! YEAH! He looks so darn cute with all his teeth too. We stopped to see my friend Crystal today at work after church, and Jacob was smiling so big, with all his teeth showing. It was truly pathetic. LOL He knows how darn cute he is, so now all he does is show off.

Tomorrow, Devin has school and I have NOTHING! Tuesday Devin's teacher comes over and I have NOTHING! Wednesday, the boys are off school and I have a massage! Thursday, the boys are off and I have NOTHING! Are you liking the sound of this as much as I am????? Friday, we are off for Mayo, as well as Monday and Tuesday, but hey, at least part of the week is free!

I am looking forward to Easter weekend with all the festivities of church and the excitement Easter brings for the kids. I really feel like Easter will have so much more meaning this year after watching The Passion of the Christ.

Holly sent me a poem today that I just have to share because it truly beautiful and oh so true.....

THOUGHTS OF A MOM By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day.
I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you.
You are well worn.
You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with your very heart and soul.
You are compassionate beyond the expectations of this world.
You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority.
We are special.
Just like any other sorority, we were chosen to be members.
Some of us were invited to join immediately, some not for months or even years.
Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices,
in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations,
evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine.
We were pregnant, or we had just given birth, or we were
nursing our newborn, or we were playing with our toddler.
Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does, or
over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right.
Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs.
Some of our children undergo chemotherapy.
Some need respirators and ventilators.
Some are unable to talk, some are unable to walk.
Some eat through feeding tubes.
Some live in a different world.
We do not discriminate against those mothers whose children's needs
are not as "special" as our child's.
We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable.
We have educated ourselves with whatever materials we could find.
We know "the" specialists in the field.
We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know "the" degenerative
and progressive diseases and we hold our breath while our children are tested for them.
Without formal education, we could become board certified in
neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity
of gait trainers and other adaptive equipment for our children with spinal cord defects.
We have sued municipalities to have our children properly classified
so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line.
We have tolerated inane suggestions and home remedies from well-meaning strangers.
We have tolerated mothers of children without special needs
complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand
what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's
"A Trip To Holland" and Erma Bombeck's "The Special Mother."
We keep them by our bedside and read and reread them during our
toughest hours. We have coped with holidays.
We have found ways to get our physically handicapped children to the
neighbors' front doors on Halloween, and we have found ways to help
our deaf children form the words, "trick or treat."
We have accepted that our children with sensory dysfunction will
never wear velvet or lace on Christmas.
We have painted a canvas of lights and a blazing Yule log with our
words for our blind children.
We have pureed turkey on Thanksgiving.
We have bought white chocolate bunnies for Easter.
And all the while, we have tried to create a festive atmosphere for
the rest of our family.
We've gotten up every morning since our journey began wondering how
we'd make it through another day, and gone to bed every evening not
sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy.
We've mourned the fact that our trip to Holland has required
much more baggage than we ever imagined when we first visited the
travel agent.
And we've mourned because we left for the airport without most of the
things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life
knows no bounds.
We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons.
We dream of them planting vegetable seeds, riding horses and chopping down trees.
We hear their angelic voices singing Christmas carols.
We see their palettes smeared with watercolors, and their fingers
flying over ivory keys in a concert hall.
We are amazed at the grace of their pirouettes.
We never, never stop believing in all they will accomplish as they
pass through this world.
But in the meantime, my sisters, the most important thing we do, is
hold tight to their little hands as together, we special mothers and
our special children, reach for the stars.

Love, Karla

Wednesday, March 31, 2004 9:10 PM CST

Hi everyone. Jacob will have a CT scan of his abdomen and will see the nephrologist, a kidney doctor, on Friday, April 9th. He will go back on Monday the 12th to see the physical medicine doctor, the urologist, and social worker. On the 13th, we will see the PT and OT. Holly and Maya have appts then as well. Then we go back the 26th and 27th for more appts. It will be a crazy month. The 28th is Devin's birthday, the 29th Michael has a field trip which I want to go with him, and the 1st is his first communion. It will be a wild week!

I am taking the next two weeks off from having therapy come to our house. With Easter and spring break coming next week, I feel it is a good time to have a vacation from everything, and then with us being at Mayo and having therapy there, I thought it would be a good choice. I am going to try to have our life uncomplicated for two weeks...I don't know if it is going to happen or not. We'll have to see! LOL

I had another massage today. Boy, those are great! Highly, highly recommended. She massaged my neck, head and face as well as my back and arms. You'd be surprised at how tight your face and neck gets, as well as the arms. It was so awesome. A true droolfest. AAHHHH

I hope everyone is having a great week. Don't forget to sign the guestbook or drop me an email. I enjoy hearing from all of you as well. Especially when I have lots on my mind concerning Jacob's medical situations. It helps to know people are thinking of us.

Love, Karla

Monday, March 29, 2004 9:36 PM CST

Good evening. We went to Mayo today. Jacob had a renal ultrasound, a KUB x-ray (kidneys, ureters, and bladder) and a urinalysis run. We then saw Deb the Spina Bifida Clinic nurse and discussed some issues I have been dealing with. After lunch, we came back and saw the urologist. Jacob has numerous kidney stones as well as a whole bunch of "gravel" in his bladder. He is going to have a CT scan of his kidneys and bladder and then see a nephrologist, which is a kidney dr. S/he will determine what is going to be done with the stones, if anything. The urologist didn't think they will need to do surgery, but the CT scan will show more. Jacob will however be sedated on the 27th of April so that they can scope his bladder and remove all the gravel, since the urologist doesn't seem to think he'll be able to empty all of it on his own. There is a lot of crud in there. We will have appts on the 12th and 13th, and again on the 26th and 27th. Once again, we are faced with obstacles. They believe it is related to the ACTH or Topamax he is on. It just seems like if you treat one thing, it just leads to other problems. Please keep us in your thoughts.

Love, Karla

Sunday, March 28, 2004 7:49 AM CST

Good morning! I hope everyone is having a good weekend.

Friday, Devin had school so Jacob and I did some errands while he was there. We went to the grocery store and while we were there, I fed him a bottle. I was so excited he had finished it until he decided to throw it up all over everything. Of course we were at the back of the store. He has been having such a hard time keeping anything down. Like his stomach isn't emptying. I know that it is very common for them to not have an appetite after coming of the steroids, so hopefully it is nothing else going on.

Michael's Boy Scout troop had a bake sale at Walmart yesterday, so Devin and I dropped him off there and went shopping. Of course when we went to Target, Devin had to have his popcorn! Jacob stayed home with Daddy. Last night, we had a couple friends over and played cards and ate pizza. It's always fun doing stuff like that with friends.

We are heading to church in about an hour and then just spending the day lounging since tomorrow we have to be at Mayo by 8:00. Hope everyone has a great day and remember to sign the guestbook to let me know you were here!

Love, Karla

Thursday, March 25, 2004 11:20 PM CST

Hello everyone. I am still here...hanging in there. I still feel a little overwhelmed and hopefully soon I will have had enough sleep and time to sort everything out. There has been lots of info given to me lately, people in and out of the house and just the overall chaos of raising two other boys and a husband (yeah sometimes I feel like I am raising him too! LOL)

While I was changing Jacob's diaper yesterday, I noticed 4 stones, presumably kidney stones. They were very small, but still there. I collected them in a bag to bring with to Dr Brumm's office today. Of course, Devin decided to go into the back seat, proceeding to somehow step on the bag and crushed them but they were still there enough to test them. Jacob weighed 18 lb 4 oz and his blood pressure was fine. He isn't drinking hardly anything now that his appetite has crashed after coming off the steroids. I am forcing him to drink, but he is eating food okay. Deb called from Mayo, and we are seeing the urologist on Monday concerning the stones. Jacob will have a renal ultrasound, an x-ray, and a urine test. I am hoping it isn't a big problem. Dr Brumm said it could be from taking the diuretic or from the Topamax. We will see. Please keep Jacob in your thoughts and prayers on Monday.

We met Amy and her boys for lunch today after our appt. It's always fun visiting with friends. The boys had a blast playing of course.

Tonight, I started going through the huge pile of pictures I have to put together into albums. Some are from when Devin was only 18 months...talk about a slacker! LOL

Hope everyone is having a great week and please remember to sign the guestbook. It always cheers me up to see who has been here!

Love, Karla

Monday, March 22, 2004 6:20 PM CST

Good evening everyone. We had a nice weekend. Saturday, we basically did nothing after we got home. Sunday, we went to church, then to the Pinewood Derby. Michael didn't place, but Devin got 3rd in the siblings/parents competition. Right away he tells Michael that he won the trophy for both of them. He is so sweet. This was Michael's last year for racing, so he was a little upset he didn't win. It was fun seeing all the cool cars and how everyone has a different idea on how to make theirs.

Today, I brought Devin to school and when I got back to the van it wouldn't start. The cylinoid or however the heck you spell it went out on it, so I walked back home. Of course, I didn't have the wheelchair. 1/2 a mile didn't seem far at first, but boy was I tired when I got home. 18 lb of dead weight is not easy to carry! Part of me was cold, part of me was hot and part of me felt like rubber! LOL

I had a rough night last night. There are just so many feelings and emotions that go with this whole situation. I often feel this way after appts when I have time to really let all the info soak in. It just seems like I am being pulled in so many different directions sometimes. Like I have the whole disability/dr appt world, then I have the world I had before Jacob came along. Sometimes I am so overwhelmed with all that Jacob entails, yet at the same time, I wouldn't trade him for the world, which is two conflicting emotions, which is also hard to understand. Then there is the whole worry of money and trying to make it financially. Now with the van needing to be repaired, there is yet one more bill that has to be paid. I just wish there were some easy answers, but I know there is not. Please continue to pray for all of us. And if anyone wants to help, it would be helpful to have someone watch the kids so Dave and I can go out, calling cards, Walmart, Shopko, or Target giftcards would be nice, or even gas cards from Kwik Trip would help. Thanks everyone for always checking on us!

Love, Karla

Saturday, March 20, 2004 3:19 PM CST

Hello everyone! We are home from a busy visit! Holly, Maya, Devin, Jacob and I left Thursday afternoon and got into the Ronald McDonald House. We unpacked and then went down to start visiting with other families. It always feels like home when I am there. We ordered pizza for supper and spent the rest of the night letting the kids play and visiting.

Friday, we had our first visit at 7:30 AM. Of course, the night before I barely slept at all, which seems to be my new habit when we have appts early in the morning. It didn't help any either that kids were running around in the halls until 12:45. Jacob had his EEG first which went fine until he coughed and threw up the contents of a 6 ounce bottle all over me. Luckily I had a sweater on and a shirt underneath. Jacob was decorated a little too, so we changed him as well. I spent the rest of the day smelling like puke though. YUM.

We then went to radiology for his neck x-ray. The people in there were less then friendly. One thing I hate is when people don't treat Jacob like a person, like just because he is disabled or whatever, that they don't have to talk to him. Poor kid was being pulled apart, head held down and all the while, no one even talked to him, except they did tell me to pull his arms harder so that his shoulders weren't in the way. Well, I felt like telling her to bite me, because if anyone knows anything about cerebral palsy and spasticity, they'd know it isn't that easily done. So once it was all done, the one tech started talking to me and being nice, but by that time I didn't want to hear it. I just don't like that feeling.

Jacob then went to see Dr Kuntz. His EEG did not show any hypsarrhythmia, which is the irregular pattern infantile spasms produces. Obviously the steroids worked! They did not see any seizure activity during the test, but that doesn't mean he won't or doesn't have them. They also noticed some decreased brain activity in areas, which obviously are the areas of the encephalomalacia. It is now a wait and see game. Children with infantile spasms often go on to have hard to control seizures so it is something we will deal with as it comes but always have to expect it will happen. I am just happy we were able to get them under control currently and we will leave the rest in Dr Kuntz's hands, but most importantly in God's hands.

We had a quick lunch, then had Jacob's helmet trimmed up a little since it was too low on his forehead. It looks like he had a haircut or something though...you know how when you have your bangs trimmed? It was really weird looking at him at first! LOL We also got his splints repaired and then saw Dr Driscoll. The neck x-ray looked fine, there is no issues with his shunt tubing or any irregularities in his bone structure. We will just have to concentrate on working his neck muscles more and to also encourage him to turn his head the other way as well.

We got on the shuttle and went over to St Mary's to get his wheelchair adjusted. He fits much better once again. We then went to the PICU to say hi to everyone. Elisa, Devin's girlfriend, was there so he had to give her lots of hugs. It was nice seeing everyone again!

After such a busy day, we decided to get the kids some happy meals and head back to Ronald McDonald House for another night. I was too exhausted to drive, so we spent another night talking and visiting, then got up this morning and came home.

We had a very special incident happen to us. When we checked in on Thursday, we were shown to our room. They had renumbered the rooms so I hadn't thought anything of it at first and as we got there, we realized it was the same room we spent 2 months in when Jacob was so sick. Of all the rooms available, that is the room we got. I remember many times being sad because so many of the others staying at RMH had their kids with them, yet here I was with my baby in the hospital the whole time. I remember wishing Jacob could be with us. As I unpacked and opened the closet door, smelling that familiar smell, I got tears in my eyes and everything we went through, came back to me. I sat in the room, feeling those feelings again, yet this time, I could look next to me and see Jacob's sweet face, not on one of the many of pictures of him I had decorating my room, but the real thing. God is good....

Love, Karla

Wednesday, March 17, 2004 11:09 PM CST

Tooth #12 and #13 came in tonight. This is just crazy! He got his top right molar, which is very swollen and blistered, and his top right eye tooth.

I am asking that you keep my friend Tracey in your prayers tonight. She is roughly 21 weeks pregnant with twin boys and is having complications. We met in the NICU when Jacob and Angelina were in there together. Please say a prayer for a safe, healthy continuing pregnancy.

We are off tomorrow, so I will update when I get back home. We are hoping to be at the Ronald McDonald House since as of today they had lots of rooms open. Please keep good thoughts coming our way!!!

Love Karla

Tuesday, March 16, 2004 9:32 PM CST

Good Evening! Jacob went to the pediatrician yesterday and weighed 18 lb 3 oz. His blood pressure was around what it has been, so we weren't too alarmed. His glucose levels came back fine as well. I gave him a shot this morning and now we only have Thurs left! YEAH!

On Friday we go to Mayo. It will be a long day. Jacob will have his EEG at 7:30, then go to a neck x-ray, neurologist, physical medicine, and to get his helmet, splints, and wheelchair adjusted. Holly is coming with since Maya has an appt as well and for company too. It is nice having someone to go with so we can talk about the appts and mull over it together! We will go on Thursday afternoon so we can get to Rochester and enjoy ourselves a little before having to go to bed.

I think I see two more teeth trying to come in. This is unreal. In the past 4 weeks he has gotten 6 teeth and will be poking through a few more within the next couple days I think! It is so crazy!!!

We had Early Childhood this AM, watched Colleen's two boys, and then had the nurse's aide and the nurse come this PM, plus a lady from our church came over to visit. I think I am experiencing some vertigo today and I am VERY dizzy. I just about fell over when I was changing Jacob's diaper. Not very fun. I am hoping to go to bed here and maybe when I wake up it will be better.

It has been great reading guestbook entries from everyone! Thanks a lot! It really brightens my day. I have been feeling a little overwhelmed lately and it helps to know others are out there thinking of us.

Love, Karla

Monday, March 15, 2004 10:14 AM CST

Hello everyone! I hope everyone is having a great day! Jacob popped through another tooth on Saturday! It is his top left molar. That makes tooth #11. It is crazy how many have popped through this month!

We saw the Passion yesterday. It is one of those things that is hard to even put into words, but to think Jesus went through that torture for each of us. If you haven't seen it yet, you definitely have to.

We have PT, the nurse, and a doctor visit today. I am also trying to get clothes done this morning with Devin at school. It is always busy around here. I feel like we have a revolving door half the time. The weekends are nice though, so that helps! Once these shots are done, I think it will slow down some, or at least I hope so!

My niece Kelly who is Jacob's godmother, presented a speech on spina bifida and hydrocephalus. I can't wait to hear how it went! I want details girl!

Have a great day and please sign my guestbook to let me know you were here!

Love, Karla

Saturday, March 13, 2004 6:02 PM CST

Happy Saturday everyone! Everything continues to go well here. Jacob has 3 more shots left. One tomorrow, one Tuesday, and one Thursday, then we see the neurologist on Friday. We have an early EEG on Friday morning as well, so we are going to stay overnight on Thursday. Holly and Maya are coming with us for company and maybe some potential appts for Maya as well. Jacob will also see physical medicine after having a neck x-ray. He appears to have torticolis, with his right side of his neck being very tight. We are going to make sure nothing else is going on. He will also have his helmet adjusted, hopefully his splints fixed and his wheelchair adjusted. Sounds like fun huh????

Last night, Holly and I watched a movie together. She had Jacob laughing SO hard. It was hilarious! Today, we went to my friend Crystal's boys' birthday party. Blake is going to be 5 and Levi turned 1. Levi loved his cake! Tomorrow, we are going to church and to the Passion of the Christ movie. We have a nurse from church watching the boys and Maya, so it should be nice to get out for a while!

Take care everyone! Let me know if you can see the graphics on this page.

Love, Karla

Thursday, March 11, 2004 8:00 PM CST

Hello everyone! Another busy week. We had Moms and More yesterday and then had to pick Devin up, have lunch and then turn around and leave again for my massage. The nurse came yesterday and got Jacob to take a nap. That is the 2nd time this week that he slept for the nurse but not me.

Today, Jacob had OT. We worked on feeding and getting him to bring his lips together more and take the food off the spoon himself, not me putting it in his mouth for him as much. He did really well. We then went to the dr for his 3 day follow-up. He is doing really well, weight was 18 lb 1 oz and blood pressure was still a little high, but stable for what it has been lately. We will continue on the diuretic. We have only 4 shots left.

I haven't seen any more seizures. The nurse said she saw one when I was gone yesterday, but I am not sure if it was or not. Deb tried calling me yesterday when I was gone and I wasn't able to get in touch with her today, so I am not sure what Dr Kuntz thought about it. We will see Dr Kuntz next Friday and see what she says for sure then.

Not much else going on. Just the normal busy stuff. Tomorrow is a quiet day. I might go grocery shopping when the nurse comes.

Take care and thanks for all the well wishes.

Love, Karla

Monday, March 8, 2004 10:32 PM CST

Tuesday Update: Jacob had some seizure activity tonight. He was sitting at the table with us and started taking a gaspy breath, and then his right arm would raise up. He did this 41 times in a row, then did about another 10 times, but not as fast. He was talking and smiling the whole time, acting completely normal, except for these seizures. He then fell asleep and had a few more jerks as he was sleeping. They were not like the infantile spasms he was having, but I do believe they were seizures. He is trying to break through his top molars, plus the other 3 he just broke through are coming in more. I think this has something to do with it, plus lack of sleep. Please keep him in your prayers. Seizures really suck.

HAPPY 19 MONTHS JAKEY! He just keeps getting older and older, and now that he is on the steroids, bigger and bigger! Can you say CHUBBY?!?!?!? You'll have to check out his pics. He has the chubbiest cheeks, big old belly. He looks like a Thanksgiving turkey...you know where the little button pops out when it is done? Check out his belly button! He also has acne on his face and his eyebrows are getting all bushy. LOL Awww... the joys of steroids.

Here's a recap of Jacob this month. He weighed in at 18lb 4 oz today. Big old chunk. Most of which is caused from the steroids I am sure, but then again his appetite has been crazy too. He is between 30 and 31 inches depending on how well you can stretch his legs.He is wearing 12-18 month clothes. Most of his 12 month bibs are too small and I have had to put away a lot of 12 month stuff. He is even wearing some 24 month clothes very comfortably. He is in a size 2 shoe finally! He wears size 3 diapers.

Jacob is eating three to four 8oz bottles of pediasure. He decided to wean during all the craziness with his teeth coming in, being in the hospital, and steroids. I am very sad it happened like it did. We still try occasionally to nurse, but he just doesn't nurse like he used to at all. He is eating breakfast which consists of cereal, fruit, or yogurt. He also eats supper which is either a fruit, vegetable, or a combo of both. He will also have pudding in the afternoon sometimes as a snack.

Jacob is holding his head up much better. He is even trying to lift his head up if he is being cradled or sitting in his Kid Kart. He wants to be up! He is beginning to sit more upright with support. He is bringing his hands midline more often to grab at toys on his tummy. If you are by his face, he will often grab it and kiss you. He grabs my hands or arms a lot when I am holding him. When the doctor listens to his heart and lungs, he always grabs the stethoscope. He can roll over if you put him on his side and hold his back. He talks like crazy saying UHH UHH over and over and over. He loves his brothers and will belly laugh at any funny noise they make. He loves burps, Hulk noises, blowing your nose, sucking in air, and when you cry. All those things are hilarious to Jacob. He loves when his daddy comes home and says hi to him. He will cry if I come into the room and he hears my voice. He loves when people talk to him because then he can flirt, especially with all the pretty girls.

We are very pleased with the gains he has made since starting the ACTH. We ask that all of you pray he remains seizure free. We only have 7 shots left, so start praying!!!

I found this poem on another website and thought it was so fitting for Jacob. I changed a couple words to better fit him, but I think it is beautiful!

Love, Karla

An Angel Is Born
author unknown

On the night that you were sick
The angels came to pray
When something started going wrong
One of them did say

"We must go get the Father
And tell Him about this.
Things are not going well.
Something is amiss."

When the Lord came and saw
All the angels crying,
He looked down from the sky above
And saw a child was dying.

An angel said, "Let's bring him Home."
The Lord said, "He will stay,
Because he has much to do
Before he comes our way."

"Besides," the Lord said and sighed,
"The parents want a son."
The angel whispered to the Lord,
"But this is not the one."

"He's not the one they longed for,
This much I know is true.
But this child will teach them much.
In time they'll see it too."

"But Father," said the angel now,
"I don't see how he can.
"This child will never walk or talk.
I do not understand."

"Watch and you shall see,"
To the angel he did say
"Though this child will speak no words
He will have much to say."

"Their parent hearts will hear his voice
And the wisdom he will share
Will teach them things about themselves
That even they were not aware."

"Though there are many peaks and valleys
On their journey just ahead
They will not despair
They'll draw their strength from him instead.

"Because of all they'll learn from him
They'll help to bridge the distance
Between the world of special needs
And try to make a difference."

The angel thought on this awhile
Then said, "This child means much.
Like the pebble in the pond,
Many lives this child will touch."

"The world needs special children,
These parents needs this son."
The angel smiled and said,
"You are right, he is the one."

The angel held him upwards,
as that night arrived,
The Father reached down and touched the child,
And the son survived.

Sunday, March 7, 2004 7:36 PM CST

Good evening! We had a relatively quiet, relaxing day. We had church this morning, I went to lunch with some ladies from church, while Dave and the boys went with his mom to a pancake breakfast. This afternoon, we basically sat around and did nothing. Dave and Michael worked on his Pinewood Derby car, while Jacob and I snuggled watching tv.
We noticed today that Jacob is moving his lips a little when he "talks" not just letting the noise come from his throat. Many people at church said how great he is looking and how much he has changed since taking the steroids.

Tonight at supper, I decided to let Jakey eat a bisquit while we were eating. Check out the pictures and see how darn cute he is! Michael was right there coaching him along. He'd drop it and Michael would tell him to grab it. Jakey, you can do it! You need to try! It was cute.

Tomorrow Jacob will be 19 months old. YEAH! :)

Karla

Saturday, March 6, 2004 10:22 PM CST

Hey everyone! Jacob had a very good day. He ate 4-8 oz bottles, a 6 oz container of yogurt, chicken and broccoli baby food for supper, and 2 containers of pudding, which explains why he puked all over me after finishing his last bottle for the night. You know the kind where it soaks through to your underwear? Yep, that kind. You missed the excitement Holly...you left too soon! LOL

Otherwise, things are going great with his shots. He had 3 days of the first taper, now tomorrow we will taper again for 3 days, then taper again for the next 3 days, then do the same dose for every other day before finishing the shots on the 18th. On the 19th, we have a visit with Dr Kuntz to see what she thinks about everything and where to go from here. Jacob is such a trooper with his shots. He doesn't even cry anymore. He hasn't cried for at least a week. Pretty awesome. It is really easy to do and it becomes just one of those things you do as a mama.

Hope everyone is having a great weekend. We had Holly and Maya over for supper and a movie tonight. Tomorrow, we have church, and I am meeting with a friend for lunch. Dave and the boys are going to a pancake breakfast with his mom. Otherwise, we are going to have a quiet day. Take care everyone!

Love Karla

Friday, March 5, 2004 9:17 PM CST

Happy Friday everyone! We were supposed to go to Rochester today with Holly and Maya, but the roads were too bad. We were pretty sad because some of our Ronald McDonald friends were there and we missed the chance to visit. Devin had school this morning, and afterwards, we went to Holly's and spent the rest of the day with her. I am really enjoying having her and Maya in the area!

Well, we have 3, yes I said 3, new teeth since yesterday. This child has had the weirdest pattern for getting his teeth too. He got his bottom two first, then a bottom molar, then the top two, then another bottom front tooth, another molar on the bottom, then he got the other two front teeth on the top, and finally tonight, he got his other bottom front tooth. How weird is that? But then again, Jacob hasn't followed any kind of pattern for anything! He truly writes his own book. LOL

Jacob is becoming a steroid baby. Chubby cheeks, rolls on his legs, and tummy. It is pretty cute. Not as chubby as some steroid babies I have seen, but he's getting there! His weight was 17 lb 14 oz on Wed when we saw the dr. I gave him some diuril that night and he had lost 2 oz by morning. His blood pressure was a little high, but has since gone down somewhat again. We will have a nurse come over Sat and Sun to check his weight and BP.

Hope everyone has a wonderful weekend!

Love, Karla

Wednesday, March 3, 2004 6:40 PM CST

Hello everyone! It is so nice to sign on and see so many people saying how good Jacob looks and how his smile makes you smile. Thanks Judy, we really DO feel lucky to have him. He is definitely a blessing and has brought us so much joy.

We saw Dr Brumm again today. Jacob's blood pressure has increased again as well as his weight. He gained 7 oz in 2 days. We will give him one dose of diuretic and see if that helps. Otherwise everything looked good. She received an email from Dr Kuntz who said she was pleased with how Dr Brumm has handled the blood pressure issues and that he is not seizing anymore. I ask that everyone lift Jacob up in prayer for the infantile spasms to be gone and for his seizures in general to stay under control. It is to be expected that he will always have seizures, but we want them to remain under control which will in turn allow him to develop to the best of his potential. It makes me sick to think just how much the seizures were taking from him. To see him now is incredible. Dr Brumm even said today that she can't believe the difference. He is definitely a different baby!!! He started "talking" on Monday too. He says "Uhhhh! Uhhhh!" ALL the time. It is so funny. Devin told Jacob yesterday "I love you Jacob, but you are really annoying me." LOL

The nurse came again today so I went for another massage. It was awesome :) I spent the morning at Moms and More and with Holly. Nothing like a day with friends, a little massage, and just a few phone calls to make a person feel better! I am so tired today after the massage. I think I will sleep good tonight!

I hope everyone is having a great day. Keep the guestbook entries coming. I love to hear from all of you!

Love, Karla

Monday, March 1, 2004 9:57 PM CST

Good evening everyone! I first want to thank everyone who has signed the guestbook. Your entries really do warm my heart and make this journey much more bearable. I am excited to see some new faces here and some people I haven't heard from for a while! Glad to see some of my old April AOL buddies have been signing, as well as those of you who have read Jacob's journal for quite sometime. Carolyn, your entries are always uplifting. Denyse, I am glad to hear you are adjusting to Florida...boy do we miss you! The little stinkpot smiled SO big for his 18 month pics that you could hardly see his eyes, then he'd turn his head the other way, it was a LONG effort, but we got a couple that looked good. I miss you taking his pics though! Anyway, I just wanted to thank you all again!

Jacob had an appt today with Dr Brumm. His blood pressure has gone WAY down from this weekend after having two doses of a diuretic. He weighed 17 lb 7 oz today, so he held steady from last week. His electrolytes were good, glucose was good, and no bacteria in the urine. We have another appt on Wed for a recheck. The county nurses will be coming in between times. Friday, we are going to Mayo with Holly, so I will probably see if Deb can check his blood pressure then. If his BP rises again, then we will give another dose of the diuretic. The concensus is that his high BP was coming from water retention since his feet were swelling, abdomen was enlarged, and his weight increased overnight. So we shall keep plugging away and hopefully we can continue with the steroids for a while.

I will keep you all updated on his progress. Take care!

Love, Karla

Friday, February 27, 2004 9:35 PM CST

Good Evening! We saw Dr Brumm again this AM and Jacob's blood pressure is elevated. She called Mayo and the dr suggested to start the taper now. We will give shots once a day. If the blood pressure continues to climb, we will have to taper even more. The original plan was to keep him on the twice a day for 2 weeks. We made it 9 days. We have not seen any seizures for 3 days. Even before that, it was only a few separate jerks. Jacob is also retaining some fluid since he gained 6 ounces from yesterday PM, not even 24 hours. Part of me is elated that it has worked, yet part of me is scared that either these side effects will force us to taper too soon or that once he is off, they will come back. Either way, we need to remember God is in charge and we ask that you pray for Jacob's well being. I just can't even tell you just how much this has changed him! People are shocked. I wish all of you could see the difference. It is amazing. Just check out the photos. He has NEVER EVER held his head up like that. Maybe once he got close, but it was never for any period of time or with a smile nonetheless! And sitting....wow he requires very little support. I am so happy, yet I don't want to get myself too happy in case things return. Yet, for the meanwhile I am going to celebrate!

We went out for dinner tonight together, just Dave, Jacob and I. Michael's dad took Michael and Devin to Chuck E. Cheese. I thought that was very generous of him to do that. They had a lot of fun. Michael is staying overnight with him and Devin came home with us of course. We went to Target for some things and then came home. I am hoping to jump in the tub tonight too :)

I had my first massage therapy appt today. I had talked to my dr about it and I was able to get 8 sessions covered. It was absolutely wonderful!!! There was drool on the pillow I am sure! I had sore spots I never even knew about. I am looking forward to next week! I planned them during the time I have a nurse here for Jacob. Devin came with and sat so quietly.

I have some cute Devin stories. We were at Mayo on Monday and Devin was told he could pick out a toy from the toy drawer. He found a frog and asked if it was made from "latax" since Jacob is latex-sensitive. The OT laughed so hard at him and said "That's right! He's the latex police!" Then we were sitting out in the waiting room next to a baby who looked a lot like Jacob, with a flat head the other way. Anyway, Devin asked his mom if he was allergic to "latax." When she said no, he brought the frog over to him to play with! He's a riot! He then went on to talk to her about how his brother Jacob has "pwobwems" and how he has to go to the dr all the time. It was so funny! My mom and I were hysterical!

Yesterday, Devin started singing a song to Jacob:
You are such a cute baby!
You are so-o-o-o-o-o CUTE!
You have wots of "pwobwems" but we wove you anyway!
Because you are so-o-o-o-o-o cute!
We wove you so-o-o-o-o-o-o much! Jacob, you are a cute baby!

Jacob thinks he is so funny too. He can barely talk to him without Jacob cracking up.

Michael had a big project today. He made a volcano and had to give a demonstration on it. I can't believe how grown up he is becoming.

Hope everyone has a great weekend. We will be helping Holly move in to her apartment. I am so thrilled she is moving here! I know this has been a hard decision for her, so keep her in your prayers for an easy adjustment.

Love, Karla

Thursday, February 26, 2004 9:35 PM CST

Hello everyone! Jacob continues to do awesome on the shots! His muscle tone has increased dramatically. His OT and PT can't believe it is the same child at all. His PT has never seen him this happy and good natured either, so that is a definite added bonus! Anything Devin says is incredibly funny to Jacob. He laughs and laughs. Devin told him, "Jacob, I'm not THAT funny!" The nurses and Dr Brumm were getting a kick out of it today too. It is so nice to see him happy, and to have other people see him happy.

Jacob's blood pressure was increased today, so we have to go back tomorrow morning for another reading. He may have to go on meds for it if it is still elevated. I ask that you pray for his side effects to the steroids to be minimal. They are working way too good to be side-swiped by nasty side effects. I am so enjoying seeing the baby I know coming back in full force.

Yesterday, I was waiting for the men with a straight jacket to come flying through my door. I had a total meltdown on the phone with the county nurse because of some issues I needed handled, yet it wasn't in their realm of Jacob's care. Needless to say, it was completely stupid because it was a simple request. I lost it. I was hysterically crying. I told her I couldn't do this anymore, I was tired of it all. That all I had been doing was running here and there, and that I was not about to make another trip into La Crosse. She asked if I was okay, and I said, I have no choice but to be okay now do I? Boy, was I mad. I just get so tired of having to do everything when the agencies who are supposed to be helping me, don't. It would be different if it was a huge request, but it wasn't. They were coming out to my house anyway. I have never ever lost it like that to anyone. It was quite the experience let me tell you! LOL Like I told the nurse I am only ONE person. I can't do everything.

Anyway, onto a happier note! Jacob weighed 17 lb 1 oz today! YEAH! He was 14 1/2 lb approximately in Nov, so to put that into perspective, he has really grown!

Take care everyone and I will hopefully post more after I see how his blood pressure looks tomorrow!

Love, Karla

Tuesday, February 24, 2004 6:45 PM CST

Good evening everyone! Yes, we are still alive. It has been crazy as ever. Sometimes I just want to lock my door, turn off the phone and escape from it all. We have a revolving door with so many people involved lately, as well as tons of people calling, organizing all the details of his treatment, so if any of you feel neglected right now, it's not on purpose, so you'll have to get over it! LOL

I started giving shots on Saturday. It is relatively simple, but kinda hard knowing it causes pain. It is one of those things where I have to keep the emotional side out of it and do it because I know it is the best thing for him right now. Jacob is incredibly happy, smiling all the time, and shaking his sassy little head. He doesn't have any effects from the shots yet, except maybe a little more burpy and some reflux.

Sunday, my mom came down and we left for Rochester. We went to the Ronald McDonald House to see if they had a room, but they were full. We would have been able to get in on Monday. We were disappointed, but they had a house dinner, plus we got a chance to check out the new addition and the updates to the place. It is absolutely beautiful. We then went to the hotel and talk about getting NO sleep. Both of us were restless. Don't even know why. Jacob and I left early Monday morning for labs and his EEG. We then went up to get his helmet refitted and finally went to see Deb. There was a big discussion regarding the possible UTI etc etc. Finally, last night after talking to Dr Brumm we brought another culture in and it was negative. The bacteria that grew the other day was resilient to the amoxicillin so we needed to know if he had a UTI so we could switch antibiotics. Thankfully we got off the ABX because Jacob has had horrible diarrhea. YUCKY.

Last night, we went to Michael's school for a program the news channel was doing and Jacob spent the whole time screaming. I felt so bad for Michael because I really wanted to take part in it with him. Dave came over after work and so he stayed with the other two while I took Jacob home. I think he has just been messed with way too much. He was screaming at everyone at Mayo yesterday if they came too close to him. He even screamed at my mom. If I was holding him, he was fine. Poor guy :( At the same time though, it makes me excited that he can tell people he's mad, that he has an opinion, and that some stranger anxiety is okay!

We are so excited that Holly is moving here in just a few short days! It will be great to have her nearby not only for my selfish reasons, but because Maya will get much better coordinated medical care. YEAH!

Hope everyone is having a great week. I am going to try to get those other pictures scanned tonight, I promise!

Love, Karla

Friday, February 20, 2004 9:33 PM CST

Hello everyone! This is Jakey. I am so glad to be home! I am smiling and laughing a lot today, but I am also very tired and sleeping a lot, plus a little crabby, but who wouldn't be....dang those shots hurt!!! Not to mention my big old molar coming in. Talk about torturing a little baby here. My mommy has to give me lots of medicine too and I am getting very mad at her. It tastes horrible. I don't like Mommy to put anything in my mouth anymore, well except to nurse. That's still my favorite pastime! I went to the clinic this morning for my shot and also for my urine glucose test and blood pressure. The nurse thinks I may have a UTI brewing. We will find out tomorrow for sure. I sure hope not. Those are not fun. Last time, I got very sick. Mommy definitely doesn't want to go through that again and neither do I. My nurse also came over today to give me a bath and play with me. She is pretty cool. Another nurse came tonight to give me my shot. My mommy is getting more comfortable with the idea. I think she will do just fine. But that doesn't mean she's going to like it, and neither will I! Oh well, it is helping my seizures though. I have only had a few jerks today and nothing like they were at all. They are very very mild! YEAH! We are surprised it worked so fast.

Please continue to pray for me that I get better and that I don't get sick again. I was very sad to see only 2 people wished me a "yeah, you're home!" Come on people! Sign my guestbook! This is a happy day!!! Check out my new pics! Mommy will add some more tomorrow when she gets some scanned!

Love, Jacob

Friday, February 20, 2004 9:33 PM CST

Hello everyone! This is Jakey. I am so glad to be home! I am smiling and laughing a lot today, but I am also very tired and sleeping a lot, plus a little crabby, but who wouldn't be....dang those shots hurt!!! Not to mention my big old molar coming in. Talk about torturing a little baby here. My mommy has to give me lots of medicine too and I am getting very mad at her. It tastes horrible. I don't like Mommy to put anything in my mouth anymore, well except to nurse. That's still my favorite pastime! I went to the clinic this morning for my shot and also for my urine glucose test and blood pressure. The nurse thinks I may have a UTI brewing. We will find out tomorrow for sure. I sure hope not. Those are not fun. Last time, I got very sick. Mommy definitely doesn't want to go through that again and neither do I. My nurse also came over today to give me a bath and play with me. She is pretty cool. Another nurse came tonight to give me my shot. My mommy is getting more comfortable with the idea. I think she will do just fine. But that doesn't mean she's going to like it, and neither will I! Oh well, it is helping my seizures though. I have only had a few jerks today and nothing like they were at all. They are very very mild! YEAH! We are surprised it worked so fast.

Please continue to pray for me that I get better and that I don't get sick again. I was very sad to see only 2 people wished me a "yeah, you're home!" Come on people! Sign my guestbook! This is a happy day!!! Can't you tell how happy I am????

Love, Jacob

P.S. Check out some new pics of me too! Mommy will add some more tomorrow when she gets some scanned!

Thursday, February 19, 2004 9:42 PM CST

We are home :) It has been an incredible week. Jacob started his ACTH shots yesterday and got two more today. We are going back to the clinic in La Crosse in the morning for another shot. We are hoping home health care will be able to cover us after that. Otherwise, I will give the shots. Not that it is a bad thing, I could do it, it just would be nice to have someone helping us out and monitoring him. He doesn't like them very much but it is much better than seizing all day. Since receiving the shots, his seizures have become less frequent and less intense. He is still having them, but not as bad as he was. I ask that everyone specifically prays that the ACTH shots work. We desperately need for them to do their job. Jacob deserves so much more than what he has experienced the last few months. He deserves to be able to smile and laugh without causing a seizure. He deserves to be able to play without being interrupted and tired from seizing. He deserves to excel to the best of his abilities. Children with Infantile Spasms tend to be severely mentally retarded, but we already know that...we know that Jacob will never be "normal," but we will enjoy who he is. It is one of those diagnosis that you don't want, but yet I guess I feel at peace with it as well, mostly because at least I know what it is and that we can hopefully treat it more effectively than we have.

Dr Kuntz came in yesterday to talk with me. She has a way about her that is so calming and understanding. She explains what I need to know and I always feel better once I talk with her. We feel very blessed that we have a caring doctor willing to help Jacob to have the best possible quality of life he can have.

It was amazing going back to the hospital. We have been there to visit, but Jacob hasn't been hospitalized for 15 months. The smells brought back so many memories. As weird as that sounds....it's true. The smells of the hallways as you come off the elevator, the smell of the soap, the room as you walk in. It was weird...I was surprised at how I felt. We also saw so many of the nurses, doctors, and other staff who have become to mean so much to us. It is funny how they are like family. The chaplain gave me a big hug and once again we had an awesome talk. I remember feeling so much better after each of Warren's visits. It was no different this time. We discussed the process of lamenting over the situation...it doesn't end just because Jacob survived the meningitis. It continues as we experience each new thing or faced with the reality of our situation. Everyone has been so good to us. The nurses loved on Jakey. We heard so many comments on how big he was and how great he looked. I wish they could see him again though when he is happier. He was pretty sluggish and crabby overall.

That all changed though once he got home. You should have seen the look on his face when he heard Devin and Michael's voice. He laughed. When Dave came home he got so excited. All he had to do is say hi or what you doin'? and he'd laugh and smile. He missed everyone so much. He has been happy all night. Back to his smiley self :) It makes me realize that truly there is no place like home.

Love Karla

Wednesday, February 18, 2004 7:36 PM CST

Hi, It's Holly again. I just talked to Karla and they are going to keep Jacob inpatient again tonight. She was able to talk to the neurologist today and they decided they will try to have home health care come out to do his injections as they need to monitor his blood pressure and weight also. He had his first injection today and will have another in the morning before he is discharged. After he's discharged they are suppose to go to the clinic to have his new helmet made and fitted then they'll be coming home. Tomorrow afternoon and the following morning he'll go to the doctor's office to have his injections and hopefully by then they'll have the home care worked out. Last night was a long night for them as Jacob didn't want to sleep so Karla didn't get much sleep either, so hopefully tonight they can both get some rest. Please continue to pray that this medication works for Jacob, the doctor is hoping this will really help him get some relief.

Don't forget to take a minute to sign the guestbook!

Tuesday, February 17, 2004 3:16 PM CST

UPDATE 2/17: This is Holly, I just spoke with Karla and she asked me to update Jacobs page for her. I'll add the phone number below if anyone needs it. Jacob had an EEG this morning and the doctor's came in this evening and told them he had infantile spasms, which is a type of seizure. They are going to start him on ACTH which is a steroid injection to help control these. He'll have to stay in the hospital a while longer to see how he reacts to the medication and so the doctor can teach Karla to give this injection to him at home. She said that his neurologist was suppose to come in this evening to discuss this further with her. Take a minute to sign her guestbook as I'm sure she'd be happy to see messages waiting for her in the morning, speaking from experience it can be an amazing pick me up after a night in the hospital to sign on to notes of support.

Hey guys. I am up in the library as Jacob takes a nap. I emailed the nurse yesterday about his seizures. They were so bad, he even bit my finger deep on Sunday. I told her I was getting scared because he looked like hell. She said to give him the tranxene which is valium and bring him in once we saw how he reacted to it. If the reaction was bad, they wanted him transported. He was fine. Spent 3 hours in the ER waiting for a room. He had about half the intensity of that he normally does, so the Tranxene worked somewhat. I have been writing down how many seizures he has, how long, etc. The doctors came in this AM and saw one. They didn't think they were too bad. I said, if that isn't bad, I don't want to see a bad one!!! I basically said I need to know for myself how much is TOO much. What is "normal" and what isn't. So we have spent the day just hanging out, he's had lots of them today. We will probably adjust some more meds or begin having tranxene everyday at least until things get under control. His molar is 3/4 of the way in, plus guess what broke through last night??? Another bottom tooth. Too much of a "coincidence" not to see the correlation there. He had an EEG this morning and of course he had a seizure as the leads were being placed, then didn't have one for a long time. We are waiting for the doctors to come back with the results and let us know what the plan is. Jacob has an appt tomorrow for another helmet, so either way we will be staying in Rochester tonight. It is silly to go home just to turn around again.

It has been fun seeing a lot of familiar faces and everyone is so excited to see how much Jacob has grown. Of course, Holly and Maya left yesterday before we got here and Carl checked out yesterday as well, so we missed our two buddies :) Shame on you guys for going home! LOL

Take care everyone and I will update tomorrow night.

Love, Karla

Wednesday, February 11, 2004 9:12 PM CST

Good evening everyone! It has been a wild week. Monday, we met with all the nursing assistants that are coming to work with Jacob. I had a doctor's appts as well that day and then I ran some errands afterwards since Dave was home with the boys.

Tuesday, we left for Rochester after Michael got on the bus. We stopped at Old Navy to shop a little, then met Holly, Maya, and Holly's mom for lunch. We visited for a couple hours, then both of us had appts at 1:00. We met with the OT about his helmet. He is getting a new one made next week. There appears to be some growth front to back, as well as one area that appears a little rounder and fuller. His head, especially on his forehead, is still very narrow, but at least we can say we tried. The OT said Jacob is writing his own book, so we will go according to what he says.

After the appt, we took the shuttle to St. Mary's to get Jacob's Kid Kart. It is very awesome :) You'll have to check out the pictures. He didn't like it at first, but I think because the lateral supports were making his arms go up too far (check out the first picture! LOL) but once they adjusted them, he loved it. He has sat in it numerous times and loves the tray for playing with toys.

We had to go show Holly how cool our chair was, so we went back to Mayo. Kelly and Carl were there too. I was afraid we were going to miss them since I was calling all morning, but Carl finally answered and boy was he cute! All of us visited in the lobby of the clinic, the kids ran around and played hide n seek together, and then I broke the law and took pictures of them in the Mayo Clinic. You'll have to check out the federal offense in the photo section. LOL Actually, we were approached by an employee telling us that we are not allowed to take pictures because of confidentiality. Well, the ONE person in the background is such a blur, I don't think anyone could identify him or her. LOL It was so wonderful to visit with everyone again. People I have met while on this journey have become like family and we can so easily relate to what each other are going through, even though our children's diagnoses are so different. It was great to reconnect and it was awesome to see the kids play together.

We left for home and picked Michael up at his aunt Crystal's house, and then dropped the boys off at home, only for Jacob and I to turn back around to go to the hospital for his sleep study. He got into his jammies, got all the leads placed on his head, face, chest and legs, and then he fell asleep around 10:20. Earliest he has gone to sleep in a long time! He slept all night long. We had to wake him this morning! Check out his pics! He didn't have any apnea spells, but they did see something on the EEG that the neurologist will address. Obviously seizures I am sure.

Anyway, things looked good. We went straight to Moms & More, then picked Devin up at school. The nurse was waiting for us when we got home. Jacob decided to spice it up a little and poop all over in the tub. He was just making sure she was on her toes I think! She had him in his chair playing for a very long time too which was really nice.

Tomorrow, we have 2 therapists, Devin's teacher visits, the nurse comes, we bring Devin to school for his valentine's party, all by 10:30. Then Dave is going to Michael's school for lunch, I have an eye appt, a meeting at church, and then a potluck for Dave's Stephen Ministry group. If I am still standing by the end of the day, it will be all good. LOL

Hope everyone is having a great week. Continue to keep Maya and Holly in your prayers as they complete their appts this week and Carl and Kelly in your prayers as Carl has chemo this week.

Love, Karla

Sunday, February 8, 2004 11:13 PM CST

Good evening! We had a very nice time today in Rochester. We went to the KidsFest, which is a fundraiser for the Ronald McDonald House where we lived last August-November. Words cannot even express how dear RMH is to my heart and the hearts of our entire family.

After the KidsFest, we went back to Holly and Maya's hotel to go swimming. The kids had a blast. Jacob even went in the pool for his first time without total screaming. Well, he screamed for a while, but at one point I think he actually enjoyed it. After swimming we went on an adventure to find someplace to eat. By the time we were done eating, it was getting late, so we left for home. All I can say is you better know how much I love you Holly, because the roads weren't very good tonight and the wind was horrible! Once we hit the Wisconsin border though, everything was fine.

Anyway, onto the real important stuff!!! HAPPY 18 MONTH BIRTHDAY JACOB! Our baby is growing into a toddler! His haircut makes him look very grownup. And cute too of course :)

Here is a review of his month. Jacob is wearing 12, 18 and 24 month clothes depending on the style. He is wearing size 1 shoes, but I can see his feet are getting bigger, maybe even a little fatter. He is in size 3 diapers, which fit him comfortably. We put away lots of sleepers this month. I can't believe he is totally out of the baby stuff now and into the infants. He is even fitting in his coat better now and wears some cute Tigger mittens. Big accomplishment I tell ya! :) He weighs about 15 lb 6 oz, I think, and is 30 inches long.

Jacob continues to nurse well. He is eating close to 2 cans of Pediasure a day, as well as stage 2 baby foods, yogurt, and pudding. He is beginning to eat crackers and chunkier foods, which is very cool!

Jacob's gross motor skills remain the same. We are still working on holding his head up while on his tummy, rolling, and general head and trunk control. I think we have come leaps and bounds from where we were, but we still have lots of work to do!

Cognitively, Jacob seems to be making more connections when given the time to process the information. He continues to love sounds....crinkles, rattles, music, and of course all the bodily function noises...burps, blowing your nose, etc. When he likes a toy or noise, he really likes it and seems to remember how to activate or responds very attentively to it.

Socially, he loves kisses. He will kiss and kiss on me over and over, relentlessly. He knows all of us and has a different response to us. If I am talking to Dave and he hears me, he cries until I pick him up and nurse him. If I have him and Dave comes home without picking him up, he cries. He loves his brothers and they are a great source of entertainment to him. I see a different look in his eyes when they are in the room. It is cool. He still smiles a lot and gets very sassy, especially at night. I notice he is much more social when we are at home than when we are out somewhere. I told some ladies at church they need to come at 11 at night and then they can see his true personality coming out.

We continue to take 3 seizure meds and have lots of issues with breakthrough seizures. He seems to be wetting his diapers fairly well still, but I sense we may need to start cathing him in the near future. His muscle tone still remains very low in his legs, but I have seen some increase in leg movement and some ankle flexion as well. His left leg still is tight and I am hoping we can avoid any surgery for some time by wearing his splints at night. Overall, I think he is remaining stable physically for the time being.

Overall, we haven't seen a lot of huge changes in Jacob this month. Sometimes the reality of this is hard to handle, but the flip side of that is we love him anyway, just the way he is. He is an amazing little boy, who continues to bring us much joy as well.

Love, Karla

Saturday, February 7, 2004 10:47 AM CST

Good Morning! Hope everyone is having a great weekend!

Thursday, Jacob saw the ENT doctor. He did a scope down his nose to check his nasal structure, vocal cords, and adnoids. Everything looked good. He was concerned his vocal cords might be underdeveloped since Jacob doesn't do much vocalizing at all, except a cry, an occasional giggle, which requires much coaxing, and an occasional uh uh sound. They looked fine. There was some redness he saw indicating possible reflux. We will see if the pediatrician wants to look into that further. While he never spits up, I guess he may be refluxing anyway. The ENT let me look into the scope as well. It was pretty cool. Jacob wasn't too fond of it, but there are some
things that just have to be done. That is the hard part of being his mama. He pooped really big while he was laying there as well, so maybe it wasn't as much discomfort from the scope as it was trying to poop. Anyway, Devin made it known that he was very glad it wasn't him. The doctor had to tease him a little offering him a turn. LOL The ENT was very caring and talked to Jacob, which is something that I was happy about. It is always comforting to see doctors who treat Jacob as a person, not as a disability. He said he will be interested in what the sleep study indicates. From what he could tell, part of the noisy breathing we hear comes from his tongue falling backwards in his mouth.

We also had a visit from the county nurse on Thursday. We will be having a nurse's aide come into the house twice a week for 2 hours each visit. She will bathe him, dress and diaper him, massage with lotion, brush his teeth, and do some therapy with him. A group of them will come over on Monday to be trained to work with him. The OT will come as well to show them some positioning and discuss general therapy techniques. There is some concern on the nurse's part regarding protocol for his seizures. Dr Kuntz is faxing over her recommendations. I was trying to explain to her how Jacob's seizures look and the general course they take. She wants specifics regarding how many is too many, when to call me (if I am out of the house during that time) or 911. I said it is one of those things that the aide is going to have to get a feeling for. It is not uncommon for him to have 4 clusters of seizures within a 1/2 hour. Then again he may not have any for an hour or more. The nurse said that there may be some that are uneasy with it. I told her then I suggest they don't work with Jacob because this is who he is and it is something they will have to get used to. While it isn't good he is having seizures, they are what they are. So Monday, I will have to talk in length about it with the nurse's aides and hopefully they will get a better understanding and not freak out! LOL

Dave started his vacation yesterday. He will be off until next Friday. He took Devin to Head Start yesterday and volunteered for the day. He really enjoyed himself. I am so glad that he is involved with the kids so much. We stopped and picked up Michael from school yesterday and then went to get Jacob's haircut. You'll have to check out the pictures! He loved it!

Tomorrow, we are heading up to Rochester for the Ronald McDonald KidsFest. Holly and Maya are on their way to Rochester today, so we will meet up with them tomorrow and go together. It should be fun! We went last year and had a great time.

Please remember to sign our guestbook so I know you stopped by!

Love, Karla

Wednesday, February 4, 2004 10:17 PM CST

Good evening everyone!

Another crazy week and it is only Wednesday! Monday, Devin went sledding with our neighbors Kelly and Jason and their boys. He had a blast! It was a nice quiet afternoon since Jacob slept during the time he was gone. Tuesday, Dave had to take the van in for some work, so I didn't have a vehicle. Devin's Head Start teacher came and worked with him. Dave came home with the van, we had supper quick and then I took Jacob in for his 18 month pictures. He's going to be 18 months on Sunday :) He was such a little stinker. He'd smile SO big, but you couldn't see his eyes. Then when we could see his eyes, he'd turn his head the other way or not smile. It took about an hour to get them done. Then of course he had a seizure right in the middle of it too. Since he isn't holding his head up or sitting up yet, we had to be creative. I brought his tumbleform feeder seat and we draped a cloth over that. We also did some of him laying on a pillow. One of those turned out really sweet, and one of him in the seat made him look so darn big, like he's 18 months old or something! LOL I will post those pictures soon.

Today was crazy. We had to get up early to get Dave to work since we are still running on just one vehicle. Luckily his work has let him borrow a truck a few days and he's gotten rides from some guys from work a couple times as well so I haven't had to get up every morning. Anyway, we brought him to work and I thought it was kind of hard to go at first, but then the van was fine. Came back to the house, got Michael on the bus, and then went inside for breakfast before Devin had to go to school. We came out and the back tire was flat. I think I must have driven with it flat or darn close when I brought Dave to work! UGH. So then I called my neighbor Kelly and she came to get us. Devin had a pajama party at school and I had Moms and More which we didn't want to miss. Kelly came with me and then we picked up her son from preschool, Devin from preschool, and went home. Jacob slept from about 11:30 or so until 4. He was very sleepy this morning too. He has had so many seizures again today. I don't know what to think anymore.

I got a phone call today saying the Kid Kart is in! We will go to Mayo on Tuesday to get fitted for it and take it home! YEAH! We will also visit with Holly and Maya and hopefully Kelly and Carl that day. Jacob sees the ENT tomorrow to see if his adnoids are possibly enlarged, thus the noisy breathing and snoring. His sleep study is Tuesday night after we get back from Mayo.

I also got a call today regarding nursing care in the home for a few hours a week. The nurse would bathe Jacob, feed him, and do some therapy with him. I am excited to be getting some help.

I hope everyone is having a great week! Please keep the prayers coming for seizure control, finding a decent vehicle, and for all the upcoming appts Jacob has.

If you are visiting for the first time, please sign our guestbook so we know you were here! For those of you who haven't read the article about Jacob in the Coulee Parenting Connection, please do!

Love, Karla

Monday, February 2, 2004 2:18 PM CST

Hello everyone! The article is in the Coulee Region Parenting Connection and is very well written. If you are in the La Crosse area, make sure you pick one up! I also encourage anyone who is visiting Jacob's site for the first time, to please sign his guestbook so that I know you were here. Thanks! I also added collages of some of the other photos from our photo shoot. Check them out!

We had a nice weekend. Saturday, we spent the afternoon at Amy's house. Crystal, Amy, and I watched the movie Radio while the boys played. It's always fun getting together with friends. Yesterday, I did some shopping, "had" to stop at the new Krispy Kreme in town, and then went home to drop everything off, only to turn back around to the walk in clinic. I have had a headache and dizziness for the last week, but yesterday it got really back and my ear was hurting too. I have sinus infection and the start of an ear infection. OUCH. I feel a little better today already.

Jacob slept 12 hours last night and was very tired this morning still. I am hoping everything is okay. He just doesn't seem to be acting right at all, yet there is nothing I can put my finger on as the cause. He is still eating good, so maybe he is just tired. Who knows. Please pray that he gets out of this funk.

I had an interesting email conversation with a friend asking how I felt when she shares her child's gains with me because she does not want to hurt my feelings. I think this is something worth sharing on the website to help those of you who may be wondering the same thing. As a parent, you are very excited to share your child's accomplishments with others. You love to brag about how wonderful your child is and you are very proud of everything they do! I want others to feel comfortable talking about their children with me. It is definitely not fair for our relationship to be one sided and only concerned with how Jacob is doing or what he is not doing. That is definitely unfair, because as I said, as a parent you like to brag about your child! At the same time, please understand that I may feel sad hearing these things. It has nothing to do with you, nothing you should feel guilty about, consider not worth sharing with me, etc. What it has to do with is me and my feelings, something I have to work through myself. Seeing others Jacob's age crawling, then walking, now talking, is hard when what I experience is SO different. That by no means implicates that I am not thrilled for you, it just means that I too wish we were there, but know that we may never be. Then comes the fact that those babies who are a year younger than Jacob are now far surpassing him. This too stings, but once again, I am faced with learning how to cope with it. It is just hard at times, yet I know that there is no easy way around any of this then to just deal with it, emotions and all, honestly. What I want from those around me, is understanding that there are a lot of emotions involved in this and not to take any of this personally. There are no answers, no right things to say to make me feel better or to "get over" the fact that I was given a severely disabled child. But what I do want and crave are those around me who can listen, be there for me when I need to vent, love Jacob just the way he is and not question everything about him, or as another person on a caringbridge page once so eloquently wrote, a good friend has a set of ears, a closed mouth, and wears a rubber suit allowing all things said to bounce off, all the while continuing to support and love me. I don't want anyone's pity, just understanding and love. This has been the hardest thing I have truly dealt with, yet at the same time the most rewarding as well.

Please remember to sign our guestbook. Your words of encouragement mean more to me than you will ever know.

Lots of Love,

Karla

Monday, February 2, 2004 2:18 PM CST

Hello everyone! The article is in the Coulee Region Parenting Connection and is very well written. If you are in the La Crosse area, make sure you pick one up! I also encourage anyone who is visiting Jacob's site for the first time, to please sign his guestbook so that I know you were here. Thanks!

We had a nice weekend. Saturday, we spent the afternoon at Amy's house. Crystal, Amy, and I watched the movie Radio while the boys played. It's always fun getting together with friends. Yesterday, I did some shopping, "had" to stop at the new Krispy Kreme in town, and then went home to drop everything off, only to turn back around to the walk in clinic. I have had a headache and dizziness for the last week, but yesterday it got really back and my ear was hurting too. I have sinus infection and the start of an ear infection. OUCH. I feel a little better today already.

Jacob slept 12 hours last night and was very tired this morning still. I am hoping everything is okay. He just doesn't seem to be acting right at all, yet there is nothing I can put my finger on as the cause. He is still eating good, so maybe he is just tired. Who knows. Please pray that he gets out of this funk.

I had an interesting email conversation with a friend asking how I felt when she shares her child's gains with me because she does not want to hurt my feelings. I think this is something worth sharing on the website to help those of you who may be wondering the same thing. As a parent, you are very excited to share your child's accomplishments with others. You love to brag about how wonderful your child is and you are very proud of everything they do! I want others to feel comfortable talking about their children with me. It is definitely not fair for our relationship to be one sided and only concerned with how Jacob is doing or what he is not doing. That is definitely unfair, because as I said, as a parent you like to brag about your child! At the same time, please understand that I may feel sad hearing these things. It has nothing to do with you, nothing you should feel guilty about, consider not worth sharing with me, etc. What it has to do with is me and my feelings, something I have to work through myself. Seeing others Jacob's age crawling, then walking, now talking, is hard when what I experience is SO different. That by no means implicates that I am not thrilled for you, it just means that I too wish we were there, but know that we may never be. Then comes the fact that those babies who are a year younger than Jacob are now far surpassing him. This too stings, but once again, I am faced with learning how to cope with it. It is just hard at times, yet I know that there is no easy way around any of this then to just deal with it, emotions and all, honestly. What I want from those around me, is understanding that there are a lot of emotions involved in this and not to take any of this personally. There are no answers, no right things to say to make me feel better or to "get over" the fact that I was given a severely disabled child. But what I do want and crave are those around me who can listen, be there for me when I need to vent, love Jacob just the way he is and not question everything about him, or as another person on a caringbridge page once so eloquently wrote, a good friend has a set of ears, a closed mouth, and wears a rubber suit allowing all things said to bounce off, all the while continuing to support and love me. I don't want anyone's pity, just understanding and love. This has been the hardest thing I have truly dealt with, yet at the same time the most rewarding as well.

Please remember to sign our guestbook. Your words of encouragement mean more to me than you will ever know.

Lots of Love,

Karla

Friday, January 30, 2004 10:44 PM CST

Good evening everyone! It is beyond cold here. The kids didn't have school today because of the bitter windchills. I was so happy to finally have a morning where I didn't have to get up and get ready. Jacob came in with me to nurse around 8, and we fell back to sleep until close to 10! Michael and Devin were up playing and watching tv. They are very good about keeping themselves entertained. I remember Devin coming in once to have me draw his Harry Potter scar on his forehead (yes, he still thinks he is Harry Potter with his glasses on! LOL) and then I went right back to sleep! I never get to sleep in anymore, so it was a very nice treat.

We got a call from Skemp today that they want to do a sleep study on Feb 10th. We already have one scheduled for March 15th at Mayo, but I think we will do this one instead. Dave will be off that week, so he will be here with the other boys and if I do it at Mayo, I will have to have someone watch the boys for 2 days since they won't allow other siblings with. So the plan is to go to Mayo for his Kid Kart fitting and then go to back to the hospital in
La Crosse that night for the sleep study. They have a cot ordered for me to sleep on. How comfy huh? LOL

Tonight, we went to see the movie Elf. This theater has cheap prices for movies after they left the major theaters, but before they come out on video. We ordered pizza also and ate while we watched. It was really cute. Jacob did good, laughed once at the racoon's screech and then cried when Daddy laughed too loud. He does not like it when Dave laughs. He also had a seizure once and started screaming then too. I took him out so that he didn't bother anyone. He then nursed and fell asleep the second half of the movie.

We had another big first last night. He ate some spaghetti that I chopped up in the food chopper! The pieces were about the size of a grain of rice and he did great with it. He seems to be using his tongue and his teeth. He ate some more graham crackers today and I could already see that he has gotten used to them and knew what to do right away with it.

If you are in the La Crosse area, make sure to pick up a copy of the February edition of the Coulee Parenting Connection. Our interview and pictures are going to be in there! The picture on the top is one of the pictures from our shoot.

Take care everyone and have a great weekend!

Love, Karla

Friday, January 30, 2004 10:44 PM CST

Good evening everyone! It is beyond cold here. The kids didn't have school today because of the bitter windchills. I was so happy to finally have a morning where I didn't have to get up and get ready. Jacob came in with me to nurse around 8, and we fell back to sleep until close to 10! Michael and Devin were up playing and watching tv. They are very good about keeping themselves entertained. I remember Devin coming in once to have me draw his Harry Potter scar on his forehead (yes, he still thinks he is Harry Potter with his glasses on! LOL) and then I went right back to sleep! I never get to sleep in anymore, so it was a very nice treat.

We got a call from Skemp today that they want to do a sleep study on Feb 10th. We already have one scheduled for March 15th at Mayo, but I think we will do this one instead. Dave will be off that week, so he will be here with the other boys and if I do it at Mayo, I will have to have someone watch the boys for 2 days since they won't allow other siblings with. So the plan is to go to Mayo for his Kid Kart fitting and then go to back to the hospital in La Crosse that night for the sleep study. They have a cot ordered for me to sleep on. How comfy huh? LOL

Tonight, we went to see the movie Elf. This theater has cheap prices for movies after they left the major theaters, but before they come out on video. We ordered pizza also and ate while we watched. It was really cute. Jacob did good, laughed once at the racoon's screech and then cried when Daddy laughed too loud. He does not like it when Dave laughs. He also had a seizure once and started screaming then too. I took him out so that he didn't bother anyone. He then nursed and fell asleep the second half of the movie.

We had another big first last night. He ate some spaghetti that I chopped up in the food chopper! The pieces were about the size of a grain of rice and he did great with it. He seems to be using his tongue and his teeth. He ate some more graham crackers today and I could already see that he has gotten used to them and knew what to do right away with it.

Take care everyone and have a great weekend!

Love, Karla

Wednesday, January 28, 2004 7:03 PM CST

I received a call yesterday from the neurologist. She wasn't even in the clinic this week, but came to her office to get something and so she called me. She is increasing Jacob's evening dose of Lamictal. I didn't notice a difference this morning, but hopefully with time it will build up in his system and will help. It is very frustrating watching Jacob have seizure after seizure.

Jacob decided that graham crackers are pretty darn good and didn't even mind the chunks! He gagged a little, but is figuring out how to use his tongue and teeth to eat it. He loves when I rub the cracker back and forth on his teeth. He thinks it sounds funny :) You'll have to check out the new pictures. There is one of him eating his cracker. I had to guide his hand a little since he wants to shove the whole thing into his mouth! LOL

We are waiting to hear that the Kid Kart has arrived and also for the appt for Jacob's fitting. I can't wait to see him sitting in it. I am sure it will make him look super big! We also got a call from Mayo yesterday scheduling him for a sleep study in March. We will see a dr in the morning for the consult and then go over for the sleep study after that...get it done all in one day. We are still on the list for the hospital here in town as well. We will have to see who wins! LOL

Take care everyone and please remember to keep Maya in your prayers this week as she sees doctors in Cleveland. Please also pray that we can find a decent vehicle since Dave's truck in on it's very last leg, well maybe not even a whole leg anymore! LOL

Love, Karla

Monday, January 26, 2004 10:34 PM CST

Good evening everyone! We had another horrible day with seizures. He had 4 major episodes within 1 hour 45 minutes of waking. Talk about fun :( I am SOOOOOOOOOOO sick of these darn things. I emailed Deb at Mayo and hopefully she will contact me tomorrow with the next plan Dr Kuntz wants to do. Like I said, he has 5 teeth, and 11 to go. He is biting his tongue so terribly bad. It bled 4 times yesterday and 3 today. Now everytime he cries, Devin thinks he bit his tongue. Tonight, I was putting then to bed and Jacob started crying because he wanted me and Devin thought he had bit his tongue. He wouldn't take my word for it, jumped out of bed and turned on the light just to check. That just totally broke my heart...what 4 year old needs to be so worried like that????

Yesterday, Jacob had an awesome first :) We had cream corn for lunch and I used his little mini chopper and creamed it even more. There were small chunks, about the size of 1/2 a grain of rice. He actually ate it and didn't gag at all until the end when he'd had too much!!! That was a big deal :) Then he ate a teething bisquit and even handled small chunks of that breaking off in his mouth. He only gagged once. I was very impressed. CP kids don't handle textures well and this is a great start.

PT came today and Early Childhood will be here tomorrow. He worked pretty hard today with PT but had lots of seizures too. Hopefully we will get some answers tomorrow.

Love, Karla

Friday, January 23, 2004 10:15 PM CST

Oh Geez! I just realized that I haven't posted since Tuesday! WOW!

We have had the normal busyness around here. We finally got approval for the Kid Kart! YEAH!!! Jacob will be riding in style :) We are hoping to have a fitting and pick it up when Holly and Maya are at Mayo so we just "have" to go to Rochester and just "happen" to visit with them while we are there! Yesterday, we had a visit with all Jacob's therapists, Birth to 3 coordinator, and the vision specialist to review his IFSP, Individual Family Service Plan. The OT commented on how sometimes when you see Jacob everyday, you don't always realize just how far that he has come. That is very true. We are going to continue working on trunk strength and hopefully he will start holding his head up while on his tummy. I also hope that someday he will attempt to move around more. I can lay him on the floor and he never moves. I find myself thinking sometimes about what is realistic goals to have Jacob accomplish and what things we are going to have to accept as never happening. For instance, the thought of Jacob crawling or sitting up is such a far, far, remote goal, one I probably can't realistically see happening. I know that it is the healthiest for me to remain in the present though and focusing on the little things that need to be done and not worry too much about the what ifs.

I had a very interesting conversation with Devin the other day. We had a song written for Jacob by Songs of Love, and Devin was asking if they could make him one. I explained that the songs were made for kids who were sick or had problems like Jacob. He was a little upset, so I tried to explain that Michael and he are able to get and enjoy many things Jacob will never be able to in the same way....McDonald's Happy Meals, playing at the park, going to movies, etc. That some things need to be special for Jacob. He was then very understanding. I am so proud of how well the boys have adjusted to having Jacob in their lives. They are so proud of him and so tolerant to all they have to endure....endless hours at the clinic, waiting for me when I have to attend to Jacob, and all the craziness of having so many people in our lives and house as a result. They are the first to make him laugh, first to brag about all that he can do, and the first to accept everything just as it is. They comfort Jacob when he has seizures and are prepared what to do if they ever need to call 911. Devin always asks though which way the 9 goes! LOL They do all this with love, joy and acceptance.

I hope everyone has a wonderful weekend! Thank you to everyone for signing our guestbook! I love reading your notes to us. Thanks Matt for having your confirmation class pray for Jacob. Jacob thinks you are a very special cousin too :)

Love, Karla

Tuesday, January 20, 2004 9:40 PM CST

Good evening everyone! Jacob has continued to have seizures, but is much better than he was last week. Please keep the prayers coming for control and to guide the doctor into finding the right combination of medication.

Jacob had some awesome therapy sessions today! Sue, the Early Childhood teacher was here this morning and he worked on shaking some bells and banging a drum. At first, he didn't look interested, but after a few minutes he started to get the itch I call it, where his hand starts moving like he wants to touch it but is too excited. He then did this scrunchy face, where it almost looks like he wants to scream or cry. Sue thought he wanted to be done or was upset, but I told her how that is his way to show he's excited. Sure enough, he wanted to bang! It is just so cool to see those connections! Then PT came this PM and she had a little bunny on his tummy that vibrated. He laid there for quite a few minutes before trying to touch it. Then when he did, he grabbed it with his RIGHT hand!!!! Jacob has weakness on his right side, so this is incredibly HUGE. Then he grabbed it with his left hand too and held it like that for a long time. He put his hands down and once again, reached for it with his right, then his left, about twice as fast that time. Then put his hands down, and did it a 3rd time, this time, with the right hand, followed quickly by the left. I have never seen him do this and it was so awesome! During this time, he was having seizures too, which makes my beliefs even stronger in that whenever he is using his brain, it causes seizures or misfires in those connectors. I think we need to continue pushing him past this, to continue helping those connections and hopefully he won't have so many misfires. It is just amazing to see how much I'm figuring him out. He was also trying so hard to squeal, like he was SO excited, but he couldn't get it out. He was making noises though in kind of a fussy way. It was so cool :) One thing we have really discussed is that Jacob doesn't respond in the typical 5 second response time of a baby. He responds anywhere from 30 seconds to 5 minutes, sometimes longer. Just because he doesn't show automatic responses does not mean he doesn't like it. I have really advocated this with therapy because it is SOOOOO true of Jacob. It has been fun figuring him out :)

Jacob has been laughing every day too lately. Plus he continues his 10 PM antics everynight. He shakes his head, gets all goofy and wide awake on us. It is just a riot. I love it :)

Hope everyone has a great night and please check out the pictures.

Love, Karla

Saturday, January 17, 2004 10:11 PM CST

Hello this Saturday evening! I am asking for all of you to say a prayer for Maya. She is in the hospital with RSV, Influenza A, and also battling tonsillitis. She is getting breathing treatments as well. She needs to get better for all her appts in Cleveland and then Mayo appts in Feb. You can visit her at Maya's Page Please leave a word of encouragement for Holly. She is an absolutely wonderful mama and has been a great friend to me.

Jacob had a much better day. Yesterday he had 20+ clusters of seizure, with about 5 jerks per cluster, so 100+ seizures, and today he has had very few. But guess what? His molar broke through the skin this morning. Coincidence? I think not.

My nieces, Kelly and Emily, came today to visit. The boys had to show them all their toys, had them play with this and that, of course! We then went out to eat and to the mall. The boys are the only ones who bought anything. The rest of us didn't find anything interesting.

Hope everyone is having a great weekend! Don't forget to sign the guestbook and check out the picture of the boys with Kelly and Emily.

Love, Karla

Friday, January 16, 2004 5:22 PM CST

Good evening everyone! We saw the neurologist yesterday who specializes in sleep issues and he didn't think there was a reason to investigate things any further. There were a couple of times that Jacob had desats, but they were considered artifact in his opinion (lead was moved, fell off, some other disturbance, etc) and so he said that at this time we didn't need to do a sleep study. Dr. Brumm just called and said that she got the results and she feels there may be some obstructed apnea, because of a couple instances of desats. She agreed that some were artifacts, but one in particle was 82 and in her opinion, that one wasn't. She left a message for him and will let me know Monday. If he doesn't agree with her decision, she will talk to Dr Kuntz and have one ordered at Mayo. She strongly believes we need to find out if they are related to seizures or if they are from obstructed apnea. So we will find out hopefully Monday.

Jacob has been having horrible, horrible seizures. I am so tired of them and so is Jacob. I just give up. Don't know what to think. I told the dr about them and she didn't offer any other ideas. I guess we just sit back and wait for the meds to build up in his system.

My niece Kelly is coming to visit tomorrow. She is Jacob's Godmother too. It should be fun to see her again before she goes back to college for the next semester.

Take care everyone! Please pray that tomorrow will be better!

Love, Karla

Wednesday, January 14, 2004 10:07 PM CST

Hello everyone! We are all doing fine. We've had a busy week as usual. We brought the SAT monitor in Monday. We will have an appt tomorrow to find out what they think, if a sleep study is necessary. We also had to do some other errands before we picked Devin up from preschool. When we got home, PT and early childhood were there waiting for us. The excitement never ends....Jacob decided to have a big seizure, bite his tongue, and hold his breath, turning a lovely shade of bluish-purple. The PT was saying breathe Jacob! Nothing like getting her all excited! LOL

Yesterday, Sue Hayman from church was over to snuggle Jacob. I got all my dishes done and dusted. It was so nice getting stuff done and having someone to visit with. Sue has been a very good support for me and we have some really good talks.

Moms and More was this morning. I really enjoy spending Wed mornings with these ladies. They are wonderful and so much fun. Two of the ladies provided supper for us tonight which was SOOOO YUMMY! Isn't everything so much better when someone else makes it?

Jacob is overall doing okay. These seizures are wearing him down I think, making him not as smiley in the mornings, a little more spacey I guess. His bottom right molar has once again blessed us with its presence after playing a round of peekaboo, so that totally explains the increase in seizures the last few days. I think we all agree that we want all the teeth in and over with. These seizures SUCK.

I will update tomorrow on what the decision is regarding the sleep study.

Take care everyone!

Love, Karla

Saturday, January 10, 2004 5:36 PM CST

Hello everyone! Here's an update on the Jakester! We saw Dr Brumm, the ped, yesterday and she talked about his noisy breathing and thinks a lot of it is positional, especially since he has low tone. I think the helmet strap doesn't help a lot either. Plus he may have some allergies too. It appears to be all upper respiratory noisy breathing, lungs sound great, tonsils and adnoids are okay. She is so cool too. I love her. She brought me back into her office to show me a funny Christmas picture of her kids. I felt quite priviledged!!!!

I went to pick up the SAT monitor and asked the receptionist if she could hold him while I washed my hands to give him his meds. When I came back, there were 6 ladies surrounding him. LOL They were all talking about his eyelashes. His are about twice the size of mine. You have never seen lashes like them. The one lady wanted to take out a Maybelline eyelash curler. LOL It just warmed my heart seeing everyone oohing and aahing over him. One lady said her son has downs so she knows how hard it can be. Then she gave him a sticker for his helmet. We also saw Amy and the boys at Walmart and had lunch with my friend Angie. It was a good day overall.

We put the SAT monitor on him last night. 90-100s what you are shooting for. There were a few times I noticed when he was snoring loud or needed to cough, that his SATs dropped into the 80's. During a seizure this morning, his SATs were in the 80's as well. It didn't appear he was struggling to breathe, so we shall she what the dr thinks. I turn the monitor in on Mon and they will print out the record and the dr should call me on Wed with her thoughts.

Dave and Michael are at camp. Devin was very sad that he couldn't go since he feels he is part of the group. We have been having fun without the boys though. Devin snuggled with me last night and then today, we went to a movie, spent his allowance money at the store, and we will watch a movie tonight. He keeps telling me how awesome it is to be alone and says I love you mom every 10 minutes. LOL

Hope everyone is having a great day! And no Tracey, I don't let Jacob wear ponytails. Well, not every day anyway! LOL I knew I'd rile someone up when I said that! LOL

Love, Karla

Thursday, January 8, 2004 8:45 PM CST

Happy 17 month birthday Jakey! I can't believe next month he will be 1 1/2!!! WOW. Sometimes it feels like he should be about 5 though! LOL

We went to the neurologist this morning. She is concerned about the increase in seizures. She gave us a prescription for tranxene, which is basically valium, so that if he is having uncontrollable seizures, and we are in a pinch of not being able to get to the hospital, or whatever, that we can call the dr on call and they will say if we should use it or not. Makes me feel a little better that we can have an emergency plan. She decided to increase his lamictal again, and we will get to the dose she wants him on next week hopefully. This med needs to be introduced slowly because of the chance of a life threatening reaction, but since he has been on it for 5 weeks and has done well, it should be safe to increase quickly now. She always asks me how I am doing, and we always have a very nice heart to heart talk. You don't find that very often in doctors and I appreciate that so greatly in her.

We talked about the sleep study. Jacob is scheduled to see a neurologist in La Crosse next week who specializes in sleep issues. I asked her opinion on his breathing and his gasping. She explained that we all need to sigh, and that she really feels that is all he is doing. Because of the seizures being pretty crazy now, she doesn't feel we'd get a real accurate picture of what's going on. We are going to hook him up to a SAT monitor tomorrow night at home and see what happens. Then we'll go from there.

Michael was quoting lines from Finding Nemo tonight. We all agreed that our new motto needs to be what Dori says, "Just keep swimming! Just keep swimming! Just keep swimming, swimming, swimming! What do we do? We swim, swim, swim!" LOL

Onto the birthday boy!
Review of Jacob for the month. Jacob is wearing size 3 diapers and 12 month clothes. He is able to fit into some 18 month clothes too :) He outgrew his 12-18 lb onesies and he is outgrowing his 0-6 month socks! YEAH!!!! His size 1 shoes are getting a little small. He weighs about 15 1/2 lbs. and is between 29 1/2 and 30 inches, depending how good you can stretch him out! His hair is getting so long, I can put it in a little ponytail. The problem is though it grows from the point on the top of his head, so it is wild and floppy! It is extending down his forehead a little. Now all we need to do is encourage the sides to grow a little.

Jacob's motor skills remain the same. We are still working on holding his head while on his tummy, rolling, holding his head upright, etc. He is grabbing his right hand with the left. He swings his left around in excitement all the time, and will hold his right out straight. I know in his mind the right one is banging too! Progress is slow, but at least he isn't regressing. He is so happy and smiley all the time. We notice his personality is really blossoming. He likes to shake his sassy little head when he knows people are watching. He loves to give slobbery kisses and has now started to hold my face with one hand so he can really slobbery me up! It is hilarious. He is so darn relentless too. He loves the boys. He has a different way he reacts to each one of them. He likes to lick Michael's face instead of kissing him. He really likes when Devin roars his Hulk voice and Michael burps. You can tell he fits right in! LOL We have noticed that he hasn't really learned any new skills, but the skills he has are more frequently seen.

Jacob is still nursing great, takes 12-16 oz of pediasure as well, and loves his food! We are not able to progress to chunks yet, he still gags a lot.

Overall, I think Jacob has really grown and matured a lot in his looks this month. He continues to be a joy!

Love to all!

Karla

Wednesday, January 7, 2004 6:39 PM CST

Your thoughts and prayers are very much appreciated! Jacob has been having a lot of seizures still, but hasn't bitten his tongue. I truly believe the seizures are related to teething, mostly because his body is under stress and as a reaction to that stress, he is seizing. Everytime they have gotten worse, it has been in direct correlation to a tooth coming through. It would be nice however, to have better control. I hate having to watch him seizing and knowing there is nothing I can do. He looks so scared and cries so hard. I don't think it is something anyone every gets used to, but somehow we just keep going. Sometimes both of us sit there and cry. It helps to talk to him. I think he knows we are there. I remember how I used to feel when Michael and Devin would have ear infections, or we'd have to bring them in because they were running a fever. I remember thinking and feeling so bad for them, worried about what the doctor would say...or feeling bad when they got their shots. I would give anything to go back to these simple worries. While they were real at the time, they seem so insignificant now to the worries we go through with Jacob, the things we have seen and the things I know we will continue to see. It's hard to even put into words how it feels to have to turn your child over to doctors to treat him, but in order to do that, to make things "better," you must first put him through some pretty horrific things. And to come to peace with that is an experience in itself. I think it is because as a parent your love is so deep, your protective instinct so strong. That's why it hurts so bad to have to sit back and watch. And over time, it gets very old. But during those times, I am also reminded of all the people who are lifting us up in prayer, who continue to bless us with kind words, thoughtful deeds, and listening ears. I know that you are all here for us and I feel it. We are reminded of God's presence as well as all of you who are there for us. Yesterday was much better, and once again, I bounce back.

Today, the vision specialist came over to give some insight into things we can do to stimulate his vision. Jacob was in his charming mode, you know the let's hold up my head and show her how cute I am mode? The let's shake my head and be all sassy mode? The smile so big you can't see my eyes mode? Sheila was quite impressed with his progress since June and always seems to count the blessings where they are, notice the good things he is doing, and focus on the positive. We discussed how he is not tracking objects. How he doesn't make direct eye contact with people or things. How he doesn't really appear to be looking at anything. How if you were to just look at him, you'd probably not guess anything was wrong until you really tried to get him to look at you. I shared how I just "love" when people find it their life's mission to figure out what he is looking at, how much it hurts to realize he can't see very good. We have always known his vision wasn't good, but we had more important issues to consider. Now that we have had a chance to adjust a little, we can really see the deficits and it makes me sad. But once again, I know it is because I love him so much that I don't want him to go through those things that no one should experience. It is finding peace with this fact that still causes me to struggle some days. I am also reminded of the realization that Jacob has never known any different, and that the sadness I may feel is really MY sadness and not his. To look at him, you know he loves his life, his family, and his special connection to those around him. That is what matters.

God's blessings continue to surround us even during the trying times. It is in Him where I continue to find my strength. Last night I was flipping through the channels and found a Christian talk show. A couple had lost their infant son to a genetic disease and they were sharing their faith and the ways God helped them get through it. I found myself agreeing with much of what was said and found one verse they quoted to be very true. "My grace is sufficient for you, for my power is made perfect in weakness."
2 Corinthians 12:9.

Tomorrow, we will have OT in the morning, and then we will see Dr. Kuntz in the afternoon. I also have a meeting at church tomorrow night. Friday, I have to bring Devin to school, run some errands, have Jacob's regular appt with Dr Brumm, and then go to Devin's parent meeting at his school. Friday and Saturday nights, Dave and his Cub Scouts are attending a winter camp. They Will be home on Sunday. I will have to find something to keep myself busy!

I hope everyone has a great night. I will put more pictures on the site hopefully tomorrow. I hope you have enjoyed his pictures. He just continues to get cuter by the minute!

Love, Karla

Monday, January 5, 2004 8:41 PM CST

We had another "fun" day. I called Deb at Mayo regarding the urine and the increase in seizures. Jacob spent most of yesterday either having a seizure or recovering from one. He was pretty quiet and not wanting to smile too much. He woke up yesterday and today at 2 AM with seizures as well biting me once while he was nursing, biting his tongue 3 times yesterday, enough to make it bleed pretty bad, and once again today. He has a very sore spot on the end. I have had it with these stupid seizures and not being able to find the right combo of meds.

Anyway, that started the day, then came phone calls to schedule therapy, a doctor appt for his sleep study, and another call from his pediatrician. She doesn't like the fact that his urine smells and that it is so yellow. So we had to go into clinic today for a urine sample, which ended up taking almost 2 hours since she was running behind. It came back negative, so that is good. Jacob had 4 seizures while we were there and bit his tongue. Dr Brumm got to see him in action. While I was there, Deb also called back and said she was emailing Dr Kuntz about the seizures. After we left, she called again to say that we are to increase his dose of Lamictal and hope it helps. We see her on Thursday. Now I have a headache. My head is swimming with way too much info and not enough brain power to think. Hopefully tomorrow will be better. We have PT and Early Childhood at the same time as Devin's teacher. I said just come because we have appts Wed, Thurs and Friday and I can't think anymore! LOL

Check out the new pictures. Gotta love the teeth huh???
The boys were fighting pretty good tonight, so I made them take a picture together! LOL

I want to thank those of you who signed the guestbook for the first time! It is always nice to know there are people out there praying for us and keeping up to date on Jakey's life!

Prayer request: I am asking you to PLEASE continue to pray for seizure control. I am so sad about this, especially when he is biting his tongue and me. I just wish I could take them away. They look like they hurt so bad.

Take care everyone and here's hoping tomorrow will be better!

Love, Karla

Saturday, January 3, 2004 11:34 AM CST

Good morning everyone! We are doing great here. Jacob seems to be over his cold for the most part. We are still smelling the antibiotic in his urine however, which is always so gross. This happened when he had his bout with meningitis too. For some reason, certain meds really make his urine smell weird. His urine has been very concentrated too, so I put a call into Mayo, but no one was there. Must have been closed or something. The ped was out as well, but I talked to her nurse and she didn't seem worried since he wasn't in pain, no fever, and is eating and drinking normally. I am wondering if this might mean we will have to start cathing again. Who knows. We are supposed to have a renal ultrasound at our next Spina Bifida clinic as well as see the urologist, so maybe we will have some insight then. Otherwise, it could also just be from the meds too, who knows.

I was asked to do an interview for a local parenting publication. There were different questions I answered pertaining to raising Jacob. We also had a relationship photo taken yesterday for this newspaper, kinda like the black and whites we had done for his birthday. I think they will look cool. Hopefully they will give us a copy of one.

Angie: I will believe it when I see it girlfriend! LOL I hope you are all feeling better. Yes, Jacob LOVES the balls. He looks so darn cute in there!

Carolyn: It's very hard not eating him up everyday! He probably gets at least 100 kisses a day or more! No wonder his poor cheeks are chapped! LOL He's gotten very good at kissing too. He grabs my face and kisses relentlessly!

I added some more pics on here too. Make sure you check them out and please sign our guestbook!

Love, Karla

Thursday, January 1, 2004 8:14 PM CST

Happy New Year!!!

Okay all you people, my mommy put all these CUTE pictures of me on my website, and only 2 people tell me I am cute?!?!?!?!?!? What is wrong with this picture???

We had a nice New Years at home. I decided I wanted to see midnight, so I kept Mommy awake. Wasn't that nice of me??? I have really liked playing with all my new toys from Christmas. I really like my sparkling symphony activity gym. Mommy said this is the first time I ever really liked to lay on the floor underneath a gym. I think I am really cool when I can make the music start. I hit it really hard and it plays cool music.

My mommy forgot to tell you that I have a new tooth! I got my other top tooth. Everyone was starting to call me a hillbilly with just one tooth on top, so I had to make sure that other one came in quick. I am going to look so darn cute!!!

Love, Jacob

Tuesday, December 30, 2003 11:12 PM CST

Hello everyone! I got a digital camera with some Christmas and birthday money, so you'll have to check out the photo section. YEAH! Now you can have lots of pictures of Jacob!

We had a nice morning. The early childhood teacher came over and we were showing off all our new toys. I almost overslept though. I woke up 15 minutes before she got here. OOPS!
Tomorrow we have OT and I think we will show her our ballpit!

Michael spent the day with an old friend of his. He had a great time. Devin spent most of the day playing with his new toys. Walmart has Batman figurines for $1 each so we got the yellow Batman he wanted. He was in his glory.

I have a funny Devin story to tell you. We were in the van playing the ABC game, you know where you try to find the letters on the signs. Well, Devin says, Mom! Let's play the tree game! I asked how do you play that? And he said we needed to count all the trees and bushes. Well, we were in an area by our house covered in trees. Michael said, Devin, you'll be dead before you count even half the trees. I thought I was going to pee my pants I was laughing so hard.

Jacob had his recheck appt yesterday and things look good. His lungs sound good and his ears are clear. We are going to have a sleep study done in Feb. Jacob snores a lot when he first goes to sleep and he also gasps a little too at times, so we want to make sure he is not having sleep apnea.

Next week brings another visit with the neurologist and also his normal dr appt for weight check, etc.

Please note the new quote at the top of the page. My sister Sandi and her husband Bill gave us a plaque with that saying on. It is truly beautiful. Take care everyone!

Karla

Sunday, December 28, 2003 8:05 PM CST

HAPPY BIRTHDAY TO ME!
HAPPY BIRTHDAY TO ME!
HAPPY BIRTHDAY DEAR ME!!!
HAPPY BIRTHDAY TO ME!!!

Okay, I am just a little crazy right now! I want to wish a big Happy Birthday to Carl Robinson today too! He's the big 4 today!!!! I'm the big 32 today!

We had a wonderful Christmas! We spent it at home this year and it was nice going to our church, spending time opening up presents and enjoying what we got and just relaxing. We had Papa Murphy pizza, chips, dip, and goodies on Christmas Eve and then I made a ham dinner on Christmas Day. Dave's mom came over too which was nice. The boys all enjoyed their gifts. Jacob really loved all his noisy musical toys. We also got a ballpit for the boys which is really cool! We are waiting on some more balls to be delivered! I thought that would be a really fun thing for Jacob too since it is big enough for me to get into as well.

Friday, Lea and her family came over. It was nice visiting with her again. She was really missing Damian this Christmas. I feel so deeply for her loss. She hugged Jacob and told him to keeping fighting and to never give up and to continue making his mama proud.

Friday afternoon, we took off for the hotel. We stayed at a hotel with a waterpark in it. We got a room with a whirlpool. The boys loved being in the pool. Dave and I took turns going in with the boys since Jacob doesn't like the water. We spent hours just sitting in the whirlpool in our room, watching tv. It was the best. Jacob sat in the whirlpool with me on Friday night and fell asleep in the tub!!!

Saturday, we spent more time in the pool and relaxing. We came home today. Michael went with his dad for their Christmas, and we went to Red Lobster for my birthday. Thanks Sandi and Bill for the gift certificates!!! We came home and are going to watch a movie tonight. I feel so refreshed. I haven't relaxed like that since before Jacob was born.

Jacob seems to be doing much better. He is still coughing some, but doesn't seem sick. He has been very happy as always and so full of love. He just kisses and kisses me! :)

Devin got his glasses on Friday too. He looks so darn cute. He is loving wearing them and is taking very good care of them.

Hope everyone had a great Christmas and a wonderful weekend!

Love, Karla

Wednesday, December 24, 2003 12:16 AM CST

MERRY CHRISTMAS EVERYONE!

I added some new pics :) Jacob is doing better today. He has been coughing a lot, but his fever broke and he is in very good spirits. He isn't eating much, but I am forcing the issue and hopefully we will keep him hydrated. Last night he finished eating a bottle of pediasure and promptly threw it back up at me. Otherwise, he slept good last night and hopefully is on the mend.

I received an email from an online friend who lost her daughter Dec 3rd. Her daughter was born on Jacob's 1st birthday with similar brain damage as Jacob. She shared her thoughts about Mary, and how Mary must have felt being given such an honor to be the mother of such a special child, who also must have known would go through many trials and pain, yet she was his mom, and the love she had for him I am sure is just like any mother experiences. It also reminds me of no matter how many trials we experience along the way, how much pain we must endure, it is all worth it knowing that we were chosen to have Jacob in our lives. It has definitely been an honor. I ask that you remember in your prayers those families who have lost a child this year and for those of us who are dealing with our own challenges raising a special needs child or a child with cancer.

From our family to yours, may you all have a very blessed Christmas, as you celebrate the birth of God's son, who came for all of us.

Love,
Dave and Karla
Michael, Devin, and Jakey too!

Tuesday, December 23, 2003 12:16 AM CST

Jacob woke up this morning with a 103.3 fever so I got ready fast and we went to the clinic. They drew blood, checked his SATs, his ears, listen to his lungs, did a nasal swab, strep test, and chest x-ray. His blood counts all look normal, ears are clear, SATs were 99-100 %, his lungs were clear, nasal swab came back negative for influenza, strep culture was negative, but the chest x-ray showed the beginning of pneumonia so he was put on antibiotics for 10 days, with a recheck after a week. Please send powerful prayers that he will get over it quickly and that we can spend Christmas at home. He is sleeping now.

I have some last minute wrapping to do, otherwise I think I am ready for Christmas. We are staying home this year and enjoying the time with the kids. The boys can hardly wait and they are excited that Jacob can't open presents by himself, so they can "help" him! :)

Merry Christmas everyone!

Love, Karla

Friday, December 19, 2003 9:43 PM CST

Good evening everyone! Yes, we are alive. It has been so busy and so much to do. I sit at the computer, read my email, look at some of the other caringbridge sites, but don't get a chance to reply to any emails or write in our own journal.

We had helpers again this week to come over and sit with Jacob. It has been very nice. Yesterday, just Devin and I went to his school for a Christmas party while Jacob was cuddled, so that was a treat. Devin was thrilled and shocked that Jacob wasn't coming with! LOL

Yesterday afternoon, Devin went to the eye doctor and he needs glasses. All kids start out farsighted ( I believe!) and eventually their eyes correct to normal vision. Devin's right eye has progressed to this point, but his left hasn't. We notice he cocks his head to the side a lot, looking out of his right eye, especially when he is concentrating. So he was thrilled. He wants glasses so bad. He picked out the cutest glasses which make him look like Harry Potter he says. He told me no one is going to call me Devin anymore, they'll call me Harry Potter instead! He is such a piece of work.

Today, we went to Mayo to get nighttime leg extension splints for Jacob. He was chillin' out, laying on the pillow, swinging his arm and shaking his head at Kathy. She thinks he gets cuter everytime he comes there! She also checked the helmet while we were there and didn't feel that there was much of a difference overall, and I don't really feel there is either, but what do you do? You have to try, and that is what we are doing. If nothing else, we tried and just wish we could have tried earlier. He is still as cute as can be, even with a funny head :)

Jacob has started watching Barney. He loves the music. It is hard to tell if he is actually watching it, but at least we try! He swings his arm when he watches it and shakes his sassy little head. We have noticed that he hasn't acquired any new skills, but the skills he does have are happening more often, almost daily or numerous times a day, so that is good. Small steps, itty bitty steps, but in the right direction.

We will be busy this weekend with church activities, finishing up shopping, wrapping, and overall craziness. We are also going to my uncle Gordy's wake on Sunday and funeral on Monday. He died on Wed from complications from lung cancer. Gordy was also my Godfather and a pretty special guy.

Tonight on the way home from Mayo, Devin was noticing the stars and I told him that whenever he sees the stars in the sky, he can think about all the people he loves which are in heaven. We went out for supper tonight and as we were driving, I heard Devin and Michael talking about our cat dying and Devin said, "MICHAEL! Did you know that when you see the stars in the sky, you can make a wish for everyone in heaven?" They went on to say how much they missed Zoe and then Devin said, "When we go to heaven, we will get to see Zoe and our grandpas and you will get to see your grandma! Won't that be so cool?" Yes, Devin, it will be the coolest....in this Christmas season don't forget the Christ child, who was born and died just so we can see how cool it really is. May God bless everyone of you this Christmas season.

Love, Karla

Tuesday, December 16, 2003 6:56 AM CST

Good morning everyone on another snowy morning. Once again I will have to cancel appts for Rochester. Schools are closed and two hours late around here, but not Michael's school though. I am not even going to risk driving up there. Unless something drastically changes between now and then...

Yesterday, our parish nurse came over to visit. Sharon is a hospice nurse, and she deals with all the emotions that come with situations similar to ours. We had a really long talk about how I am doing, the balancing act that must take place between grieving what isn't, accepting what is, and continuing on with my life as a mother to 2 other boys, a wife, and still have time for me. She made some nice points on feelings and emotions that come with raising a special needs child and that it is okay to admit that this whole this sucks sometimes. I find I get very tired of having to explain myself and Jacob all the time to people. I really don't feel I owe this to anyone. It is what it is, and I feel how I feel when I feel it. Anyone in a similar situation can understand that I hope. Meanwhile, I am still at awe over the support we have received from so many people and thank God for putting people in our lives just when we need them most.

Here's a good story for ya...hope you can laugh more than I could. I go to the store yesterday to use some gift certificates we had gotten. Get to the checkout and realize I didn't get the free pie that came with the meat I bought. Send Michael back, he couldn't find it. A worker there went and got one. Continue to check out, cashier tells me that I have $4 left, but they can't give me my money back, so I send Michael back for 2 items I wanted. He brings them back, one is the wrong one, so I run back. Checkout, poor lady behind us wishes she hadn't put her groceries on the counter yet I am sure. Total comes to $.57. I dig in my purse, I have $.42 and a Chuck E. Cheese coin. I ask Michael if he had any of the $1 I gave him left, nope it's in the van and I am not going out there!!!! He was sick of me by now. I stand there, not wanting to write a check out for $.57 and tell the cashier I give up! She starts digging in her pockets, then asks the bagger for money. He pays for it. I am so embarrassed by now. Get outside and realize I forgot the one thing I originally came there for. UGH. Hope today is better! LOL

We have early childhood this morning and a lady from Moms is coming over too. I am hoping to get some housework done and some more presents wrapped.

Take care everyone and remember to sign our guestbook! I notice a lot of hits on the site, but not many people are signing! If you have never signed before, please do so. Your words of encouragement help more than you know.

Love, Karla

Saturday, December 13, 2003 11:51 AM CST

Hi everyone! It is me, Jacob. I just wanted to let you know that I added some new pictures of me. I look pretty handsome don't I?

I have had a couple of busy days! Thursday, the OT and teacher came over. I worked pretty hard, but most of the time I was fussing and having seizures. Those stupid seizures make me so mad. I am taking some new medicine, and hopefully it will work.

Friday, Mommy spent the morning with Devin at Head Start. Lucky me got to cuddle with my neighbor Kelly. She gives some really good snuggles! Thanks for watching me Kelly!

Today, I am just hanging out with Mom. Dad's at work this morning. Michael is going to a birthday party this afternoon. Devin has a cold and that little booger better not give it to me again! He shares WAY too many germs. Darn brother.

Last night, Michael was burping and would ask me, "What did you do?" He has a real cool trick where he can burp on command. I couldn't stop laughing, I thought it was so hysterical. Mommy and Daddy love to hear me laugh, they just wish they didn't have to listen to Michael burp just to hear me though!

On Tuesday, I have to go to Mayo to see the eye doctor and then I will get fitted for nighttime leg extension splints too. I don't like going there. I usually cry as soon as I get off the elevator, but then Mommy tells me it will be okay and I stop crying. My mommy takes pretty good care of me, so I don't need to be scared. I still don't like going though. There is a really nice lady named Deb that we visit when we are there. She always gives me good snuggles and talks to me. At least there are some good parts to my trip!

I hope everyone is getting ready for Christmas! I can't wait to open all my presents!

Love, Jacob

Wednesday, December 10, 2003 9:18 PM CST

Good evening! Not a whole lot to report. We have finally gotten snow. It was really cold and blustery too, so I rescheduled appts at Mayo for next Tuesday instead. I-90 is so windy anyway, I don't even want to think what it was like today.

Our Moms 'n More group had a Christmas party today which was lots of fun. They have offered to help me out by taking turns coming over to snuggle Jacob for a while so I can get stuff done around the house. We also got a meal today, and Joan is planning on arranging meals for every Wednesday. It will definitely help. It's hard getting things done when he requires so much attention. Somedays he is really content, but most times he likes to be held and entertained. I am so lucky to have people who are so caring.

I have been asked to be interviewed for a local parenting newspaper. They are running an article on special needs children. We will also have our pictures taken for it as well. Should be cool! I love talking about Jacob and telling his story!

Hope everyone is doing well and getting ready for Christmas!

Love, Karla

Monday, December 8, 2003 10:39 PM CST

Happy 16 month birthday big boy! Here's a review of his stats:
Jacob is 14 lb 14 oz and 30 inches long. He is wearing 12 month clothes. If it is a one piece outfit, 12 month is getting a little short on him. He wears size 1 shoe and size 2 diapers. The diapers are getting a little small on him and if I put a 3 on him, it fits...kinda! LOL

Jacob has 4 teeth. The top tooth has really come in overnight! He is now chewing on the left side, so I think his molar on that side may be trying to peek through!

I laid Jacob on the floor on his side a few days ago and when I walked by him again, he was laying on his tummy! He is using his hips more to roll over, however he is still not doing it regularly. He is clearing his face while on his tummy. With some support to his shoulders, he can lift his head up more. He is holding up his head fairly well. I can sit him on my lap and he doesn't need much support. He is getting stronger and sassier everyday! I love the sassy look he gives when he is trying so hard to hold his head up!

Saturday, Jacob was holding a ring in his left hand and as he went to bring it to his mouth, he also grabbed it with his right hand!!!! He played for an hour, both hands on the ring. That is the first time he used both hands together intentionally!!!! At PT today, he repeatedly used both hands to bring a toy to his mouth.

Jacob still enjoys nursing and eating lots of food. He is also loving his pediasure. We found banana creme pediasure and he could not drink it fast enough. His eyes were huge, transfixed and he was snorting as he ate. He SCREAMED when I took the bottle away from him. He collapsed the nipple 3 times. He ate 6 oz and then SCREAMED again. I gave him 2 more oz and he was satisfied.

We had a very nice weekend. We decorated our tree on Saturday and then Sunday, some friends came over to make Christmas goodies. We went out to eat afterwards. It is always nice to get away for a while.

Today, Devin had preschool, we had some errands to run, and Jacob had PT. Tomorrow, Devin's teacher comes over. Sue from my Moms group is also coming over to snuggle Jacob so I can get some work done. The Moms group offered to help out since things get a little stressful at times trying to get everything done. We are also having a meal prepared for us on Wed. I thank God everyday for such wonderful, supportive friends. It makes life with Jacob so much easier.

Wednesday, we go to Mayo to get fitted for leg splints. We will also see an opthamologist. We had wanted to see an optometrist to get a better idea on how much and where he can see, but no one would see him this young. I don't think the opthamologist will have a lot to add to the opinion of the other one we saw in May, but it is worth a shot.

Take care everyone and SIGN OUR GUESTBOOK!

Love, Karla

Saturday, December 6, 2003 4:07 PM CST

Hey everyone! The singing worked because now all Jacob needs is one more front tooth before Christmas! One of his front teeth FINALLY broke through the gums today! It is huge too. It should be rather cute when it comes in :) Hey Angelina, we are officially tied, unless you had another one come in!!! LOL

We went to Kelly's house last night to watch Lifeline: Mayo Clinic. Our neurosurgeon was on there!!!! If you didn't get a chance to see it, please watch it tomorrow on Discovery Health Channel, 11 AM CST/12 PM EST. Check your local listings though to make sure. They also show the PICU and we recognized two nurses! Let me know what you all think!!!

The tree is officially up and we are praying it doesn't tip over! LOL We are going to decorate it tonight. Tomorrow I am making some Christmas goodies with friends.

Hope everyone has a great weekend!

Love, Karla

Friday, December 5, 2003 6:28 PM CST

Hi everyone! Everything continues to be busy and crazy around here. Wednesday I talked to Mayo 3 times about Jacob's seizures, back and forth, with Deb and Dr. Kuntz. Luckily Dr. Kuntz was in La Crosse on Thursday, so we saw her and she added another seizure med to the mix. Our plan is to start it very slowly, over a period of 7 weeks, so that it can build up in his system. There is a small chance of having an allergic reaction to it, so they have had the best luck introducing it slowly. We will start it tonight. The pharmacy didn't have it in until today. Please pray that this medication will work. Jacob has had so many seizures again with the teeth coming through. He has been pretty miserable the last two days trying to get his molar through and his top teeth are so swollen and flaming red. Poor guy!

OT came over yesterday. Jacob did pretty well, but then got fussy towards the end. He fell asleep for a little while before the appt, but stayed awake the rest of the day. He fell asleep around 9, but of course it was too good to be true and he kept falling to sleep and waking up, until finally going out for good at 11:45 PM. It sure makes for a long day.

We are hoping to get our tree up this weekend or sometime during next week. Sunday, I am making Christmas goodies with friends, so that should be fun.

Continue to keep Carl and Maya in your prayers as their parents look for the wisdom on what to do next.

Take care!

Love, Karla

Tuesday, December 2, 2003 8:55 AM CST

Good Morning everyone! My mommy said I could write the journal today. I had a really good day yesterday. I had PT in the morning and Lori really made me work. I started crying when I heard my mommy's voice. I was trying to tell her to pick me up, that Lori was making me work too hard, but all my mommy did was say, "Come on Jakey! You can do it!" Doesn't she know how hard it is to lift up my head when I am on my tummy??? I was so tired when Lori left. My mommy finally held me and I nursed for a long time. Then I felt much better and fell asleep.

I took a nap for a couple hours, then Mommy woke me up to go see Dr. Brumm. That naughty nurse always makes me get all naked for the scale. I hate it so bad. I wonder how she'd like it??? I don't know what the big deal is about getting me on that scale all the time. Everyone was excited to see that I weighed 14 lb 14 oz. I gained 6 oz in the last 2 weeks. Must be from all that yummy food I eat. We had to wait a very long time because Dr Brumm had to go see some new babies being born. Devin didn't like to wait so long, but finally Dr. Brumm came in and said my ear looks all better and my lungs sound really clear. I am glad I don't have a cold anymore. My mommy always comes after me with that yucky snot sucker. That always makes me so mad. She is relentless I tell ya! I had to get 2 shots, but I didn't cry for very long. I am all done with my baby shots now! Isn't that cool???? I fell asleep on the way home and I slept for a very long time. I had a very busy day.

I have a new song I have been singing too. It's called All I Want for Christmas is My Two Front Teeth. Ouch do they hurt. My mommy said it looks like one is trying to push through on the top. I sure hope so because they are so swollen. That stupid medicine I take makes my gums thick. I have to get my teeth in quick because my friend Angelina has gotten all sassy on me. Her mommy told my mommy that Angelina has 4 teeth. I just can't let her beat me so look out Angelina, we are in for a showdown, Sassy girl!

My friend Maya is in Cleveland all hooked up to monitors. She had to have that stinky glue put on her head to see if she is having seizures. I am so sorry Maya, I know how much that stinks. I hope you get lots of good news from your doctors and watch lots of Barney and Dora okay? Just make sure you let your mommy watch tv sometimes too or she might get a little cranky. Please visit Maya's site and give her mommy some encouragement. All this stuff is really hard on the mamas because they love us so much. Maya's site.

I am asking all of you to keep my friend Carl in your prayers. He has cancer, and his mommy and daddy found out yesterday that it came back in his legs and bone marrow. Please pray that God encircles them in His love and that Carl is able to beat this once again. You can visit Carl at Carl's Corner.

I want everyone to write me a little note in my guestbook. Sometimes I think it must be broke or something because I don't get any messages. It is with your support that we are able to keep smiling and going forward everyday. My mommy still needs the support from all you to continue, so please sign my guestbook!

Hope you all have a great day! I am sending you lots of hugs and kisses!!!!

Love, Jacob

Sunday, November 30, 2003 11:11 AM CST

Good Morning everyone! We had a very nice Thanksgiving with my mom, sister Sandi, and her family. The boys love to play with Matt, so they were quite busy the whole day.

Friday, we all slept in late. It was weird not getting up to go shopping in the wee hours of the morning. I went out yesterday instead though, and was able to get lots of deals from the 2 day sales.

I am going to have to call my doctor tomorrow and discuss going back to PT. After Monday's appts at Mayo, I began having the pain in my neck and back of my head come back again. I know it is from stress. It is the weirdest and most annoying pain. It affects me all day. The PT helped it disappear last time, so hopefully it will again. The fact remains though, that the stress will never end with Jacob, so I am also faced with finding ways to deal with it. The stress is obviously manifesting in physical forms. Please keep me in your prayers for stress relief. It is so hard sometimes because it just builds up. A friend and I were talking that it is the in-between parts that are just as hard, and often it is those times that you need the support the most. I think people see that I am doing good on the outside, and honestly I am doing good, but it is just the constant stress that wears on a person after a while.

Holly and Maya are heading for Cleveland today to began her tests. Please keep both of them in your prayers.

Take care everyone and have a great rest of your weekend!

Love, Karla

Thursday, November 27, 2003 8:50 PM CST

Happy Thanksgiving!!!!

Last year at this time, Jacob had just come home after a 2 month stay in the hospital, was still on IV antibiotics, and we were unsure if the infection was clearing within his brain. This year, Jacob is healthy, generally speaking, happy, and still very much loved.

We have so much to be thankful for. Dave and I have been blessed with 3 absolutely wonderful boys who are loving, caring, sensitive, and who bring us so much joy just being who they are. We have a strong marriage which has weathered many hardships, a home, and a steady income. I have been blessed to be able to stay home with Jacob and Devin, and to be there when Michael gets home from school.

We are so thankful for the people who surround us. We have amazing support from family and friends. We have met so many new friends, friends who have seen us through some incredibly tough times, friends we would have never met if it hadn't been for Jacob. So many bonds have become even stronger this year, and we are so thankful for the generosity of others, the prayers, the listening ears, the helping hands.

We are so thankful for a wonderful, supportive medical team. What a blessing it is to have doctors and nurses who genuinely care about Jacob's best interests, who understand our devotion to him, and who give our whole family the care it needs in caring for Jacob's special needs.

We are most thankful to God for always being there for us, on good days and bad, for showing us the beauty of His miracles, and strength to continue. We have been so very blessed in so many ways.

Hugs to all,

Love, Karla

Wednesday, November 26, 2003 9:44 AM CST

Good morning! We had a very busy Tuesday. PT and Devin's teacher were here at the same time. PT was working on posturing and getting his back straight. He generally has a very rounded back because he is just not strong enough to hold himself upright. Quite a few times Jacob straightened himself up all by himself. He also rolled over when she put him on his side. It was an awesome session.

I had so many calls to make yesterday. Here's a look into my day:

1. Called the pediatrician to schedule a recheck on his ears.
2. Talked to the nurse about having the dr write a prescription for his pediasure and sending it to WIC.
3. Called the Birth to Three coordinator to discuss Jacob's appts and the recommendation for vision therapy.
4. Called the vision specialist to schedule a visit, first with just Jacob and I, then with the whole B-3 team. She wasn't there, so I am waiting on a call.
5. Called a store to see if our Musini was paid for by the county. This is a really cool toy that plays music with any slight music. It is intended for kids to dance around, but many disabled children love it as well.
6.County called me to say she paid for the toy. Dave has been needing to fix his truck or get a new vehicle, but we can't afford one right now. She said that there is also a loan program available if a member of your household is disabled, so we will check into that. She also said we will be contacted about having nursing care come into the home to take care of Jacob so I can either do work around the house or go out for a few hours.
7. Called about the loan, and they will get back to me next week. They also have a newsletter and other services available to disabled individuals, so I will find out more next week about that as well.
8. County called back to say they'd pay for us to stay at a hotel as part of our funding, just so we can get away. We were already given a gift certificate for a free night stay, so we are planning on going Dec 26-28, the 28th is my birthday, so it will be fun! You can check out the lodge at Cranberry Country Lodge. I am so glad we were able to get into this program. Generally it is a 7 year waiting list, but we were able to get in last fall because of the severity of Jacob's disabilities.
9. Called the hotel and there were only 2 rooms left. We got into the honeybee suite. Very nice!!!!
10. Called the United Cerebral Palsy organization to see what kinds of support groups and information they can give me. I have heard from other parents how great they are.
11. Mayo Clinic called with an appt for splints. I thought the date was fine, but then looked at my appt book and so I had to reschedule for Dec 10th.
12.Called the PT/OT dept at the clinic to see if we can get some latex-free elastic for his little room.
We also went to Michael's dance program at school yesterday. By 9:00 last night, I was ready for bed, so Dave stayed up with Jacob and I was out by the time my head hit the pillow.

Today OT came over and Jacob worked very hard again. He is so good natured and tolerant. It is definitely a blessing. Michael and Devin are off school until Monday, so they are watching movies, playing playstation, and all that other fun stuff you do on days off.

Take care everyone!

Love, Karla

Monday, November 24, 2003 10:23 PM CST

Hello everyone! We had a nice time in Rochester. We left yesterday afternoon and got to the hotel around 4:00. I let Michael miss school today and come with. I felt bad because Devin was saying, "Bye Michael! I'm going swimming at the hotel!" so I asked him if he had any tests or important work today and he said no, so I let him come too. The boys swam for 2 1/2 hours and then we ordered pizza and watched a movie on TV. It was so fun just hanging out with the boys. They told me over and over how much fun they had! Kelly and Carl weren't able to make it because of the snow. We were sad they couldn't make it, but hopefully we will see them again another time!

This morning, we went down for breakfast. The waitress packed it all up for us and we took it with. Boy, was it COLD outside! I am not ready for this weather!

We got to the clinic and saw the dietician first. Since Jacob is over 1 now, she wants us to start pediasure twice daily and also discussed giving him Boost pudding, which will give him more calories. She was very pleased with the amount he was eating, just felt that he needs more calories than he is getting since he isn't eating table foods like other children his age. She was very nice to talk to and I am glad we have a plan for trying to add more weight on his little body!

Next, Deb, the nurse, came in and we discussed how we are doing, his new toys we ordered (which came in the mail today!) and about his seizures. Since his molar came through, he has started having seizures when he wakes up again, so we are trying the 11 and 11 schedule since he doesn't go to sleep until around 11. Michael said, "Next you will do 12 and 12!" and I said no I wouldn't because mom isn't that crazy! LOL

Dr Driscoll from physical medicine saw him next. She had a resident dr with her that has cerebral palsy, so that was really cool talking to her. She was relating very well with Jacob and said her left side is weak, just the opposite of Jacob's. We discussed having switched our PT, the status of getting the Kid Kart (MA is still working on accepting it) and his vision, or lack thereof. I told her I thought his left leg seemed to be tighter at the knee, and she agreed, so we are going to have splints made to stretch them at night. The lady who made his helmet will do that as well. She was happy the helmet was going well, but felt it was a little too loose front to back, so we went up to have Kathy readjust it. She changed the front part of his "laser beam" so it covers a bigger area.

While we were there in the splinting room, Dr. Nickels, the resident dr who was in the NICU the day Jacob was born, came by to say hi and went to lunch with us. It was nice catching up on stuff and visiting. She is such a neat lady and we have been very blessed to have her in our life. She thinks Jacob is quite special :)

When we came back, we talked to the social worker about how we are doing. Dr Voight, the developmental pediatrician, came in next and did some evaluations of Jacob. He is placing him at a 4-5 month level mostly, with a 1 month level on visual skills, and 2 month motor skills, up from 1 month last time. He was very good about noting those areas in which he has improved and the things that he is doing which he is excited about. Michael was right there telling him all the things that Jacob does too. It was so cute so proud he was of him. Dr Voight said I need to continue what I am doing with the boys, they are so well behaved and obviously very excited about Jacob and very loving toward him as well. I thought that was such a nice compliment.

We left the clinic and went over the PICU at St. Mary's to say hi to Elisa the nurse, who is Devin's girlfriend. She was so happy to see us and Devin had to give her a big hug.

We will be going back for a splinting appt. and to see a pediatric eye dr for another opinion on ways to help with his limited vision. In 3 months, we will go back for Spina Bifida Clinic appts again. At that time, he will have a hip x-ray done and see the ortho doctor as well as physical medicine. If his hips are looking good and his head control is better, Jacob will be fitted for a stander. It's a really neat contraption where he is strapped into it, allowing him to stand upright. Most standers also have a tray in front so he can have toys on there to play with while he is standing.

Hope this finds everyone well. Take care.

Love, Karla

Sunday, November 23, 2003 1:52 PM CST

We are leaving for Rochester now. The snow is coming and we want to get ahead of it if we can. Please pray for safe travel. Kelly and Carl aren't going to be making it tonight unfortunately. We will connect with them tomorrow instead. I will let everyone know how our appts went tomorrow night or Tuesday morning!

Love, Karla

Friday, November 21, 2003 10:26 PM CST

Good evening everyone!

We've got a molar! Yes, you are reading that right, Jacob went straight to a molar and skipped the front teeth and the other 4 that usually come in before the molar! Leave it to Jacob to totally go off sequence! LOL Last night, I was rubbing his gums since I saw a blood spot on his gums, just like I did with the bottom teeth. After about 10 minutes, I felt the tooth. His top gums are SO swollen too. Poor guy. I am thinking he is going to get a whole bunch of teeth at once!

OT came yesterday. We have been working on some new exercises with him to get him more properly stretched out and trying to build up the muscles in his back and rib area for better posture control. Tonight Jacob was sitting on my lap, facing me, and his head and upper body went totally over to the side. He was able to bring himself back to midline all by himself, which I was very impressed with.

Today, Devin had Head Start, so we did some shopping and bumming around. I was in a store and this woman came up to us, asking me how old Jacob was....you know that question I just love to answer....well you'd think by now I'd know just to lie about his age, because no one believes me anyway. So this lady continues to say how SMALL he is over and over and over, how her granddaughter is 9 months and 24 lb and 30 inches long BLAH BLAH BLAH. So then she proceeds to take the blanket and move it off of him to see the rest of his body!!!!! I take the blanket out of her hands and walk away. HOW INSENSITIVE and RUDE was that????? By now, you'd also think I'd have some good one-liners to answer to these idiots who somehow think they have the right to act so incredibly stupid, but I don't. I just can't bring myself to be so rude, but I think I need to start. Usually people are overall nice, but then there are those every now and then. So I need help in thinking of some good things to say I guess!

Last night, we went to a Family Literacy event through the school district. Dave only saw us a few minutes before we left and then he went to Stephen Ministry training, so he was home late. Dave took Jacob right away and Jacob was so happy to see him. I asked Dave if he could get Jacob's medicine and I'd hold him, but as soon as Dave gave him to me, Jacob started screaming! I told Dave to come back over and see if he'd stop crying when he held him again. Sure enough. He stopped. He missed his daddy! It was so cute! He has definitely developed an attitude over who, what and how he wants something.

Monday, we have appts all day at Mayo. We have to be there early, so Devin, Jacob and I are going to stay over at a hotel Sunday night. Some friends we met at the Ronald McDonald House, Kelly and her son Carl, are also going to be at Mayo for appts, so we are going to meet them at the hotel and share a room with them. Carl and Devin should have a blast in the waterpark! It will be great visiting with Kelly too and catching up on everything! You can visit Carl at Carl's Corner

I hope some of you caught Lifeline: Mayo Clinic tonight. Let me know what you think about it. I went over to our neighbor Kelly's house to watch it. They were gone for the evening, but they trusted me enough to go into their house! Thanks Kelly! The boys had a blast playing in your playroom! LOL

Take care everyone!

Love, Karla

Wednesday, November 19, 2003 7:45 AM CST

Good morning everyone! I added Halloween pictures last night. Check them out :)

Yesterday, we had Early Childhood come over. Sue is so good with Jacob. She has a CD with Baby Bumblebee on it and he loves listening to it. We played the song over and over and he started crying when the music stopped. You can tell by his eyes that he is really listening and thinking when the music is on.

Monday night, he fell asleep around 8. Dave gave him his meds at 10, and he swallowed them and kept sleeping. He woke up around 7 AM! When I changed him, he wasn't as wet as I thought he should be, so I cathed him with very minimal output, basically not worth cathing over. I was worried that we were going to have problems again, but it was fine. He peed a lot yesterday to make up for it, so I think we are still okay.

He was in the goofiest mood last night. He kept kissing me and kissing me. He was laughing really cute too. I love seeing him like this. He finally fell asleep about 11:50 and is still sleeping really hard. I woke up worried about him, because I couldn't hear him breathing. He's had such a stuffed up nose for about a month now and it looks like his cold is pretty much gone now, as he is breathing very quietly again.

Take care everyone!

Love, Karla

Monday, November 17, 2003 10:32 PM CST

Good evening! Hope everyone had a great weekend! Yesterday, we went to Sunday school and church. Devin had to sing. He was pretty darn cute too! Michael was with his dad and came home in the afternoon. We didn't do much the rest of the day.

This morning, I had Devin's conference. He is doing very well in school. He is very social and animated, and the teachers love the spunk he brings to the classroom. He is very motivated and doesn't become frustrated easily. His skills are very age appropriate. We will be working more on literacy skills the rest of the year. He knows his numbers by sight, he can count to 13 before he starts getting them mixed up, he's writing his name fairly well, but doesn't really know many letters or cares to really yet.
Michael also got his report card last week and he got all A's and B's. He is doing very well also and seems to be very motivated to learn. He's also matured a lot this year so far and seems to have made better friendships.

PT came over and worked with Jacob this morning. She was doing some stretches since his hamstrings seem to be getting tight. This is very common with spina bifida since their leg extensions aren't very good. I have been stretching him since he was born. She did teach me a way to stetch them even more, so I will be working on that. Over time, if they develop contractures, it may require muscle release surgery. Hopefully we can head this off for years to come.

After PT, we had to pick Devin up at school and then run to Rochester. I totally give up on ever getting there on time. It never fails that I have something slow me down. Today it was horrible winds and rain, not to mention making a trip to the 10th floor of the parking ramp, only to turn around and go back down to 8 before I found a parking spot. We saw rehab about his helmet. She put a piece of foam in the back to cushion it a little more from rubbing and so it wasn't so loose. Otherwise, we just keeping PRAYING for Jacob's head and brain to start growing!!!!

Tomorrow we have Early Childhood coming over. Hopefully he will be in a good mood this time. His cold is getting better and his cough is almost gone. Today I noticed a red blood spot on his gums, where the right molar should be. I think it is trying to come in! That is what his bottom teeth looked like before they broke through. He has been chewing A LOT on that side, so I think it won't be long. Leave it to Jacob to have 2 bottom teeth and a molar. LOL

Hope everyone has a great week and SIGN MY GUESTBOOK! Or if you are too shy, email me! LOL

Love, Karla

Saturday, November 15, 2003 7:10 PM CST

Hello everyone! I feel much better today. Our church's service ministry group, which I am a part of, handed out Thanksgiving baskets to those in need this morning. Kids from our church went around the community on Halloween asking for food donations. They came back with 100 bags! This food was used for the baskets. How awesome! We also gave gift certificates for the grocery store, and handed them a long stem carnation.

Jacob is doing pretty good today. I can tell his ear hurts a little, but overall he is himself. His cough and cold seems to be getting better. His lungs are clear, so that is good. He hung out with Dad this morning while I was at church and polished off an 8 oz bottle. Big eater!

This afternoon, we went over and picked out a crib for Jacob. Now I am going to find a carseat as well. He is getting pretty big for his infant carseat. I am hoping the Kid Kart comes through soon, because then I can have him in there when we got into stores, since he can't sit in a cart yet. The infant carseat comes in handy for going into stores. I may just leave it in the van for trips to the store until his chair comes in. We will also be getting a handicap sticker soon so that I can get him into his chair, which will take a while, and not have to walk so far across the parking lot as well.

We were at Target today and we ran into our PT. She started talking to Jacob and he was smiling SOOO big. It was the cutest thing! You could totally tell he recognized her. She got such a kick out of that and so did I. It was so cute!!!

Last night, I went over to my friend Michelle's to watching Lifeline: Mayo Clinic. It was a pretty cool show. Hope some of you caught it. I realized Thurs that we don't have Discovery Health Channel. It is on digital cable and we don't have it, but have the extended basic cable instead. Thanks Michelle for letting me come over! It was nice to visit too!

I realized something today. Yesterday was the 1 year anniversary of Jacob's homecoming. We are so blessed to have had him happy and healthy AT HOME for 1 year! What a big accomplishment!!!!

Love, Karla

Friday, November 14, 2003 6:58 PM CST

Good evening everyone!

This morning, I talked to Devin's class about Jacob. As we were driving to school, I asked Devin if he wanted to introduce his brother and if he could tell them about his shunt. He said he wasn't going to talk to nobody. LOL It was funny. Turns out, he was very talkative and lovin' on Jacob the whole time!

I brought Jacob to the dr today for his 15 month checkup. He lost 3 oz since last month, so he is 14 lb 8 oz now. I just don't even know what to think about that. I cannot possibly feed him any more than I do now. Everytime he has a cold or something going on, he loses weight or maintains, as if all the energy he takes in is going to fight it. Jacob also has an ear infection in his right ear. No signs or symptoms to point to one, but he's got one. UGH The nurse also gave us a developmental form to fill out since we did one at his 1 year appt. I honestly think the dr only wanted it done at a year for his records, but not intending to have one done everytime we come in. I was able to check that he nurses and that he can show anger and affection. That's it. I do not need to be reminded that he is not walking, climbing, using a sippy cup, stacking 3 blocks together, using 3 or more words, blah blah blah. If I am ever given one again it is going in the garbage. I hate those reminders. Call me angry and bitter, but sometimes it sucks, plain and simple.

Afterwards, we went to pick up his meds and then went to look at cribs and carseats. We have funding available to help us with buying things for Jacob, so we are getting him a new crib, carseat, and some special adaptive toys that he can activate easily. I am excited. We are also going to use some of the money for respite and for family outings so we can relax and enjoy some time together away from "stuff." We were going to put up a fence, but since it is getting colder, we are going to wait until spring.

When we got home this afternoon, Jacob slept for quite a long time. When he woke up, I gave him his bottle for the day, which he ate very quickly and promptly threw it up all over me...you know the kind that soaks you right down through you underwear. YUCK. Poor boy was really mucousy too. So since we needed a change of clothing, we decided to just get into our jammies :)

Take care everyone and I hope to read more guestbook entries!

Karla

Thursday, November 13, 2003 8:58 PM CST

Hello everyone! It has been a few days since I updated, so I thought I'd let you all know how we are doing! Jacob's PT and OT came back from a conference with lots of new ideas for Jacob. One of the most exciting pieces of info they gave us was regarding his vision. They suggested to see an optometrist who would be able to better assess how much he sees and what kind of field of vision he may have. He have seen an opthamologist who assessed the condition of his eyes and his optic nerve. I found this interesting and exciting, because I feel if I can get a better idea of how much he sees and where his field of vision may be, we can better serve him by placing objects in that area, holding him a certain way, etc. I called Mayo to address this issue and they will see what they can figure out, as well as I am questioning Birth to Three's role in finding a vision specialist. I found out that B-3 will provide a consultant, one we have had come over before, but not a vision therapist, similar to having OT and PT now. An internet friend of mine has helped me find an optometrist in La Crosse who specializes in vision therapy!!! Thanks Debbie! You are the greatest! So I am making some phone calls tomorrow and see what they will cover, etc. I am on a mission!

Jacob's seizures are better overall, but he has had 2 seizures today upon waking. They weren't as severe as they used to be, but still there nonetheless. We will have to see what Dr Kuntz thinks about this when I call next week.

Tomorrow, Jacob has an appt with Dr Brumm in La Crosse. Monday, Jacob has an appt at Mayo for his helmet and then on the 24th he has Spina Bifida Clinic. Busy next few weeks with dr appts.

Today, Amy and her boys came over to visit. I finally had a day when nothing was going on, so she brought over pizza for lunch and we gabbed. Dakotah and Devin played so nice together (no scratching each other this time! LOL) and Trevor found tons of things to play with, most of which he shouldn't have! LOL You could tell Jacob doesn't get around and into things! He was so funny. It was nice visiting with you Amy!

Tomorrow I am talking to Devin's class about Jacob. They have all asked lots of questions about his head and his helmet, so I thought it would be good for them to learn a little about our special guy!

DON'T FORGET!!!! Mayo Clinic will be featured in a 4 part tv series debuting on the Discovery Health Network November 14, 21, 28, and December 5 at 9:00 CST called "Lifeline: Mayo Clinic." These hour-long episodes will give an inside look from the experience of patients receiving care at Mayo Clinic. I invite all of you to mark your calendars to watch these episodes that will give you an idea of what Mayo is all about, what it looks like, and the superior kind of care received there. We are so grateful to Mayo for saving Jacob's life, for I know if he had been anywhere else, he would not have received the expertise and knowledge, along with the excellent medicine used to heal him. We are ever so grateful to have such an awesome facility so close to home, and doctors who are extremely knowledgeable and trained to care for Jacob. So please tune in starting tomorrow!!!!

Take care everyone! I look forward to seeing more entries in my guestbook....HINT HINT!!!

Love, Karla

Monday, November 10, 2003 9:47 PM CST

COOL NEWS Mayo Clinic will be featured in a 4 part tv series debuting on the Discovery Health Network November 14, 21, 28, and December 5 at 9:00 CST called "Lifeline: Mayo Clinic." These hour-long episodes will give an inside look from the experience of patients receiving care at Mayo Clinic. I invite all of you to mark your calendars to watch these episodes that will give you an idea of what Mayo is all about, what it looks like, and the superior kind of care received there. We are so grateful to Mayo for saving Jacob's life, for I know if he had been anywhere else, he would not have received the expertise and knowledge, along with the excellent medicine used to heal him. We are ever so grateful to have such an awesome facility so close to home, and doctors who are extremely knowledgeable and trained to care for Jacob. So please tune in starting this Friday!!!!

Good evening everyone! I thought I better update his page before some of you start a revolt! LOL We had a very busy weekend! Saturday, Dave went with his mom to look for a new car for her, while I took the boys grocery shopping. My friend Crystal and her family came over to visit and have supper with us. Crystal was standing in the kitchen and looked out the window and said my mom was out there and my aunt was with her! We did not know she was coming! My mom's brother is in the hospital with sepsis, so she and her sister came down to see him, and then decided to stop by our house to stay overnight. I got a call from my friend Lea who's son Damian was in the NICU and PICU with Jacob, and who also stayed at the Ronald McDonald House. She was in town and wanted us to come over on Sunday.

Sunday, we went to Sunday school and church. We came home for lunch and then Mom and Marlys left not long afterwards. We went and saw Lea. The boys were excited to see Dylan, her 7 year old,but he was at the circus most of the time and came back just when we were getting ready to leave, so I let them play for a little while. It was so great seeing her! Damian's twin brother,Patrick, doesn't even look like a baby anymore! He is so big, not to mention absolutely ADORABLE. He loves to throw things. His uncle had a pop on the coffee table, and he threw a little lego guy and hit it off twice. Quite the arm! Since the boys didn't get a chance to play too long, we decided to meet for breakfast at McDonald's this morning so they could play. It was so great seeing them. I have missed them so much. This is the first time they had been back since Damian passed away in July, so they went out to the cemetary, but Damian's headstone is not in place yet. She was hoping it would be. I had gone out there about a month ago and you couldn't hardly see where he had even been buried. So sad....

Jacob had therapy this afternoon since we were gone this morning. PT and Early Childhood came together. He really didn't want to do anything today. His cold has really taken the energy out of him, however he is not extra fussy or totally lethargic, just not as active. He is coughing a lot more and has a runny nose, so that is a good sign that things are loosening up.

Michael had a Pack meeting tonight for Cub Scouts. His den put on a skit which was really cute. Devin just loves being in the middle of it all with the boys. He wants to wear a uniform SO bad. He talks about getting one all the time. LOL He is so darn funny.

Jacob celebrated his big 15 month birthday on Saturday!!!! Here is an update on his progress:
Jacob is 28 1/2 inches long, and approximately 15 1/2 lb. He is wearing size 2 diapers and 12 month clothes.

Jacob is nursing 10+ times a day. He eats stage 2 foods still, with no real progress on eating chunks of food. They still make him gag terribly! He loves pudding, prunes, bananas, yogurt, and ice cream! He cries when his food is gone. He has started being very finicky about taking his bottle with his laxative in...he would rather have mama.

Jacob is holding up his head fairly well, his trunk support is getting much better, but we still have a long way to go towards total control. At times, he can sit up with assistance, then others, you could basically fold him in half. The PT is working on his ribs to help with posture and trunk support. He hasn't made any strides toward rolling over independently since last month. His PT is working hard on this as well. He loves to bang his arm around though and has figured how to use his right hand as a helper arm for certain toys and to stabilize things.

Jacob is still Mr. Smiles. He is laughing about once a week now. He finds it really funny when you burp, cough, sniff, yawn, and cry. He also loves deep voices. Crystal's husband Paul had him giggling the other night just by talking to him.

He is taking one nap a day. Most times, he sleeps 3-5 hours, then other days he doesn't sleep at all. He is crazy that way. When he does go to sleep, he fights it SO bad. He won't close his eyes until he absolutely can't hold them open any longer. At night, he likes to nurse to sleep. If I lay him down awake, he cries until I pick him back up, then he nurses like a pig, as if he has never eaten before. It is absolutely pathetic! LOL

We are reminded often how bad his vision really is. He is not tracking at all, doesn't seem to notice much of anything passed in front of his eyes, and he doesn't turn his head to look at anything. He will make eye contact when I talk to him sometimes and I believe a lot of his vision is peripherally to his right. It is one of those things that are very hard to deal with. You always want your babies to look at you, to interact with your face, your smiles, toys, etc. People come up to him and talk to him, trying to get him to look at them, trying to figure out what he is looking at. That's hard.....I get tired of having to justify everything or explain everything, like why he is small, why he doesn't see, why you tickle his feet and he doesn't feel anything. I find myself more and more aware of those simple things that you just "expect" from a baby and how so many conversations or experiences you have with other people center around those things. I never noticed it before with my other two, but most people come up to a baby and grab their feet and tickle them. They try to make eye contact and when he doesn't, they automatically try to figure out what he is looking at. Or they say, he looks tired. Sometimes I just want to scream, HE'S NOT LOOKING AT ANYTHING! The older he gets and the farther away he is from normal development for his age, the more I am faced with the reality of it all. Those are some really hard pills to swallow at times, but I also know that my idea of normal, my idea of accomplishments and goals for Jacob have also evolved during this time as well, and the things I used to think of as essential in his development have been fined tuned and we are adjusting to a different life than one generally expects when they have a child. Many emotions and thoughts fill my head at different times, but one thing remains firm and that is we definitely made the right decision when we chose to fight for him and to give him the best chance at life, however and wherever that life leads us.

Love, Karla

Monday, November 10, 2003 9:47 PM CST
COOL NEWS Mayo Clinic will be featured in a 4 part tv series debuting on the Discovery Health Network November 14, 21, 28, and December 5 at 9:00 CST called "Lifeline: Mayo Clinic." These hour-long episodes will give an inside look from the experience of patients receiving care at Mayo Clinic. I invite all of you to mark your calendars to watch these episodes that will give you an idea of what Mayo is all about, what it looks like, and the superior kind of care received there. We are so grateful to Mayo for saving Jacob's life, for I know if he had been anywhere else, he would not have received the expertise and knowledge, along with the excellent medicine used to heal him. We are ever so grateful to have such an awesome facility so close to home, and doctors who are extremely knowledgeable and trained to care for Jacob. So please tune in starting this Friday!!!!
ood evening everyone! I thought I better update his page before some of you start a revolt! LOL We had a very busy weekend! Saturday, Dave went with his mom to look for a new car for her, while I took the boys grocery shopping. My friend Crystal and her family came over to visit and have supper with us. Crystal was standing in the kitchen and looked out the window and said my mom was out there and my aunt was with her! We did not know she was coming! My mom's brother is in the hospital with sepsis, so she and her sister came down to see him, and then decided to stop by our house to stay overnight. I got a call from my friend Lea who's son Damian was in the NICU and PICU with Jacob, and who also stayed at the Ronald McDonald House. She was in town and wanted us to come over on Sunday.

Sunday, we went to Sunday school and church. We came home for lunch and then Mom and Marlys left not long afterwards. We went and saw Lea. The boys were excited to see Dylan, her 7 year old,but he was at the circus most of the time and came back just when we were getting ready to leave, so I let them play for a little while. It was so great seeing her! Damian's twin brother,Patrick, doesn't even look like a baby anymore! He is so big, not to mention absolutely ADORABLE. He loves to throw things. His uncle had a pop on the coffee table, and he threw a little lego guy and hit it off twice. Quite the arm! Since the boys didn't get a chance to play too long, we decided to meet for breakfast at McDonald's this morning so they could play. It was so great seeing them. I have missed them so much. This is the first time they had been back since Damian passed away in July, so they went out to the cemetary, but Damian's headstone is not in place yet. She was hoping it would be. I had gone out there about a month ago and you couldn't hardly see where he had even been buried. So sad....

Jacob had therapy this afternoon since we were gone this morning. PT and Early Childhood came together. He really didn't want to do anything today. His cold has really taken the energy out of him, however he is not extra fussy or totally lethargic, just not as active. He is coughing a lot more and has a runny nose, so that is a good sign that things are loosening up.

Michael had a Pack meeting tonight for Cub Scouts. His den put on a skit which was really cute. Devin just loves being in the middle of it all with the boys. He wants to wear a uniform SO bad. He talks about getting one all the time. LOL He is so darn funny.

Jacob celebrated his big 15 month birthday on Saturday!!!! Here is an update on his progress:
Jacob is 28 1/2 inches long, and approximately 15 1/2 lb. He is wearing size 2 diapers and 12 month clothes.

Jacob is nursing 10+ times a day. He eats stage 2 foods still, with no real progress on eating chunks of food. They still make him gag terribly! He loves pudding, prunes, bananas, yogurt, and ice cream! He cries when his food is gone. He has started being very finicky about taking his bottle with his laxative in...he would rather have mama.

Jacob is holding up his head fairly well, his trunk support is getting much better, but we still have a long way to go towards total control. At times, he can sit up with assistance, then others, you could basically fold him in half. The PT is working on his ribs to help with posture and trunk support. He hasn't made any strides toward rolling over independently since last month. His PT is working hard on this as well. He loves to bang his arm around though and has figured how to use his right hand as a helper arm for certain toys and to stabilize things.

Jacob is still Mr. Smiles. He is laughing about once a week now. He finds it really funny when you burp, cough, sniff, yawn, and cry. He also loves deep voices. Crystal's husband Paul had him giggling the other night just by talking to him.

He is taking one nap a day. Most times, he sleeps 3-5 hours, then other days he doesn't sleep at all. He is crazy that way. When he does go to sleep, he fights it SO bad. He won't close his eyes until he absolutely can't hold them open any longer. At night, he likes to nurse to sleep. If I lay him down awake, he cries until I pick him back up, then he nurses like a pig, as if he has never eaten before. It is absolutely pathetic! LOL

We are reminded often how bad his vision really is. He is not tracking at all, doesn't seem to notice much of anything passed in front of his eyes, and he doesn't turn his head to look at anything. He will make eye contact when I talk to him sometimes and I believe a lot of his vision is peripherally to his right. It is one of those things that are very hard to deal with. You always want your babies to look at you, to interact with your face, your smiles, toys, etc. People come up to him and talk to him, trying to get him to look at them, trying to figure out what he is looking at. That's hard.....I get tired of having to justify everything or explain everything, like why he is small, why he doesn't see, why you tickle his feet and he doesn't feel anything. I find myself more and more aware of those simple things that you just "expect" from a baby and how so many conversations or experiences you have with other people center around those things. I never noticed it before with my other two, but most people come up to a baby and grab their feet and tickle them. They try to make eye contact and when he doesn't, they automatically try to figure out what he is looking at. Or they say, he looks tired. Sometimes I just want to scream, HE'S NOT LOOKING AT ANYTHING! The older he gets and the farther away he is from normal development for his age, the more I am faced with the reality of it all. Those are some really hard pills to swallow at times, but I also know that my idea of normal, my idea of accomplishments and goals for Jacob have also evolved during this time as well, and the things I used to think of as essential in his development have been fined tuned and we are adjusting to a different life than one generally expects when they have a child. Many emotions and thoughts fill my head at different times, but one thing remains firm and that is we definitely made the right decision when we chose to fight for him and to give him the best chance at life, however and wherever that life leads us.

Love, Karla

Friday, November 7, 2003 8:01 PM CST
Hello everyone! Hope everyone had a good day. Things are looking pretty good seizure-wise. Jacob had only a couple of jerks this morning, and then after his PM nap, he had a major seizure, but it was only about 6 jerks total, no longer than a minute long. So far, changing the timing of the meds have seemed to have a positive effect!!! If this doesn't work, then the next step is another med which has to be suspended and can only be suspended for a given number of time, so if we go to that med, I will have to be taught how to do it. PLEASE keep the prayers coming for seizure control!!!!

Devin had Head Start this morning, so we dropped him off and then ran some errands, visited with our Birth to Three coordinator, and then went to a La Leche League meeting. Afterwards, I went to pick Devin up and then went out to lunch with my friend Angie. It was nice visiting and catching up on things. Devin is in love with her too. It is rather cute! LOL

Jacob's cold is finally loosing up so he can actually cough a little more forcefully. He hasn't been fussing at all with the coughing, so that is good. The red mark from his helmet went away thankfully. So far we have been pretty lucky. He will have a recheck on the helmet on the 17th.

COOL NEWS Mayo Clinic will be featured in a 4 part tv series debuting on the Discovery Health Network November 14, 21, 28, and December 5 at 9:00 CST called "Lifeline: Mayo Clinic." These hour-long episodes will give an inside look from the experience of patients receiving care at Mayo Clinic. I invite all of you to mark your calendars to watch these episodes that will give you an idea of what Mayo is all about, what it looks like, and the superior kind of care received there. We are so grateful to Mayo for saving Jacob's life, for I know if he had been anywhere else, he would not have received the expertise and knowledge, along with the excellent medicine used to heal him. We are ever so grateful to have such an awesome facility so close to home, and doctors who are extremely knowledgeable and trained to care for Jacob. So please tune in starting next Friday!!!!

Take care everyone and have an awesome weekend!!!

Love, Karla

Friday, November 7, 2003 8:01 PM CST
Hello everyone! Hope everyone had a good day. Things are looking pretty good seizure-wise. Jacob had only a couple of jerks this morning, and then after his PM nap, he had a major seizure, but it was only about 6 jerks total, no longer than a minute long. So far, changing the timing of the meds have seemed to have a positive effect!!! If this doesn't work, then the next step is another med which has to be suspended and can only be suspended for a given number of time, so if we go to that med, I will have to be taught how to do it. PLEASE keep the prayers coming for seizure control!!!!

Devin had Head Start this morning, so we dropped him off and then ran some errands, visited with our Birth to Three coordinator, and then went to a La Leche League meeting. Afterwards, I went to pick Devin up and then went out to lunch with my friend Angie. It was nice visiting and catching up on things. Devin is in love with her too. It is rather cute! LOL

Jacob's cold is finally loosing up so he can actually cough a little more forcefully. He hasn't been fussing at all with the coughing, so that is good. The red mark from his helmet went away thankfully. So far we have been pretty lucky. He will have a recheck on the helmet on the 17th.

COOL NEWS Mayo Clinic will be featured in a 4 part tv series debuting on the Discovery Health Network November 14, 21, 28, and December 5 at 9:00 CST called "Lifeline: Mayo Clinic." These hour-long episodes will give an inside look from the experience of patients receiving care at Mayo Clinic. I invite all of you to mark your calendars to watch these episodes that will give you an idea of what Mayo is all about, what it looks like, and the superior kind of care received there. We are so grateful to Mayo for saving Jacob's life, for I know if he had been anywhere else, he would not have received the expertise and knowledge, along with the excellent medicine used to heal him. We are ever so grateful to have such an awesome facility so close to home, and doctors who are extremely knowledgeable and trained to care for Jacob. So please tune in starting next Friday!!!!

Take care everyone and have an awesome weekend!!!

Love, Karla

Thursday, November 6, 2003 8:29 PM CST
Good evening everyone!

It has been a nice, quiet, no problems kind of day. I laid in bed until 7:30, got showered around 9:00, and just did whatever today. It was nice. We don't have many days like that. Everyday, we are up and doing something by 8:00.

I started Jacob on the 10 AM/10 PM schedule, and he only had 1 major seizure today. He had a couple jerks as well, but nothing that developed into anything more. I am not saying I am excited or that things are good, because if you know how it works, as soon as you say it, then you curse yourself. So without me saying it too loud, it was a good day seizure wise.

Jacob has a small pressure spot on the back of his head tonight, and I think it is from laying on the back of his head without that donut pillow. I didn't think of it when I laid him down in the big crib today, and now I wished I had. Oh well, we will have to see what comes of it. I could drive myself crazy with all the logistics that are involved with him. I am learning where my limits are and how much I want to get excited about stuff. It has been hard....there are so many things that could go or do go wrong, things that you need to do in a days time just to keep his muscles stretched out, bones and hips strong, blah blah blah. I have found that if I don't do everything I am "supposed" to in a days time, that it will be okay and I can do it tomorrow. I just can't do that to myself or my family. Those of you with special needs kids will definitely understand that. If you did everything the doctors and therapists say you should do or work on in a day, you'd do nothing else!!!

Anyway, Jacob has been in a really good mood today, playing a little and actually letting me lay him down. It has been nice.

Hope everyone has a great evening!

love, Karla

Thursday, November 6, 2003 8:29 PM CST
Good evening everyone!

It has been a nice, quiet, no problems kind of day. I laid in bed until 7:30, got showered around 9:00, and just did whatever today. It was nice. We don't have many days like that. Everyday, we are up and doing something by 8:00.

I started Jacob on the 10 AM/10 PM schedule, and he only had 1 major seizure today. He had a couple jerks as well, but nothing that developed into anything more. I am not saying I am excited or that things are good, because if you know how it works, as soon as you say it, then you curse yourself. So without me saying it too loud, it was a good day seizure wise.

Jacob has a small pressure spot on the back of his head tonight, and I think it is from laying on the back of his head without that donut pillow. I didn't think of it when I laid him down in the big crib today, and now I wished I had. Oh well, we will have to see what comes of it. I could drive myself crazy with all the legistics that are involved with him. I am learning where my limits are and how much I want to get excited about stuff. It has been hard....there are so many things that could go or do go wrong, things that you need to do in a days time just to keep his muscles stretched out, bones and hips strong, blah blah blah. I have found that if I don't do everything I am "supposed" to in a days time, that it will be okay and I can do it tomorrow. I just can't do that to myself or my family. Those of you with special needs kids will definitely understand that. If you did everything the doctors and therapists say you should do or work on in a day, you'd do nothing else!!!

Anyway, Jacob has been in a really good mood today, playing a little and actually letting me lay him down. It has been nice.

Hope everyone has a great evening!

love, Karla

Wednesday, November 5, 2003 8:51 PM CST
Hello everyone! Another day has gone by. Time sure seems to fly. I never did call the ped yesterday. Jacob seemed to be doing good and overall acting himself, so I figured I'd just let it run its course and if at anytime it seems worse, I will call. We see Dr Brumm next Friday anyway. This is the first time I haven't called the doctor right away. I must be getting used to it! LOL Jacob only woke up at 5:00 coughing this morning. Today, he has been congested, but not coughing or acting like he isn't feeling well, so we will see what happens.

Last night's parenting seminar was phenomenal. Lots of good ideas. Now just to implement them more often! Here is the link to the website. Love and Logic
Something funny happened last night...there was a couple behind us who were oohing and aahing over Jacob and afterwards the lady said how cute he was and what a beautiful smile he had. Then she said that it was so cool that they made helmets for babies and how she could have really used one for her son about a month ago because he kept rolling off the bed. I just agreed with her and went on my way. I thought that was so hilarious that she thought the helmet was to protect him from hitting his head. She had no clue. LOL Just one of those things that crack me up. I know, weird sense of humor. Kinda like the time this lady at the hospital said, "Oh he has such a beautifully shaped head!" and here I am saying, "well actually he doesn't!" LOL I finally get a compliment on his head and I couldn't even accept it! I still chuckle about that. The lady was so clueless!

We had Moms and More today and Devin had preschool. This afternoon we ran to get diapers and some other household stuff, but nothing too exciting! Tomorrow the OT will not be coming since she is at a conference. Kinda nice to have a break!!! I gave her a list of things to question or find out for me about Jacob.

I talked to Deb at Mayo today and Dr Kuntz wants me to adjust the time when I give Jacob his meds. We kept on the 8 AM/8 PM schedule he was on in the hospital, but she is thinking that if we give it to him later, like 10 PM, then when he wakes in the morning, he will still have more of the med in his system still, hopefully controlling the seizure. So we are going to try the 10 AM/ 10 PM schedule and see how that goes. Now just to get used to that!

I called about the wheelchair/Kid Kart that we requested. The request has been mailed to Medical assistance and now we wait to see if they will approve it. I guess they had to tell MA why each part of the chair was necessary and MA will either accept or reject each piece. We shall see what happens! It would be nice to have it so that Jacob can be more supported and comfortable, plus have a place to play easier.

Question to those of you living near me: Do anyone of you know someone who can put up a chainlink fence? We have 2 Lions Clubs who would be willing to put up a fence for us, but we need someone who can guide them to do it right...you know so that it is still standing when they leave. LOL We have some county funding which we can use for equipment, fencing, wheelchair ramps, remodeling, etc and we have been wanting to get a fence done, but it is really expensive and over our county budget. If we can cut out the cost of labor, then we could afford to buy the supplies. Let me know!

Take care everyone!

Love, Karla

Tuesday, November 4, 2003 11:26 AM CST
Good morning everyone!

Jacob has been congested sounding the last couple weeks. Dr. Brumm said it was upper respiratory, but not in the lungs 2 weeks ago. He is snoring a lot. It sounds like it is between the nose and the throat, you know that yucky stuff that just hangs there. Early Monday morning, I heard Jacob not being able to breathe and flew out of bed, patting him on the back. He was fine pretty afterwards, just gunky sounding still. Early this morning, he started coughing like crazy, couldn't catch his breath again and so I flew out of bed and once again had to pat him on the back. I think part of it is me freaking out. I swear he scares me so much more than my others did, but then I have seen something "normal" turn into something BAD in seconds. So he spent the rest of the night sleeping on my arm. He coughed a few more times, and it sounds like it is one of those coughs that line your throat. When he is up, he is fine acting overall, still congested sounding, but not coughing. I think with anyone, the night is when the coughing is the worst since you are more relaxed. I am going to call the ped nurse today, since Dr Brumm doesn't work on Tuesdays and see what she suggests and then make an appt to see her tomorrow if possible. I am going to dig out the vaporizer too I think. Devin has the same cold and cough, but I don't worry as much about him. I think those two need to stop sharing germs! Michael never gets anything, but maybe his immune system has developed more being in a germy school for 6 years! LOL I told Dave this morning that Jacob is aging me really fast. I feel 10 years older in the last year's time.

PT came over yesterday and she is working on getting him to roll. She lays him on his side and has a toy she wants him to reach for, giving him that feeling of rolling. Repetition is what is going to be the key for him. Any movement he makes that looks like an attempt to reach for it, she says, "Good Job!" and then has him reach for it again. She brought this little piano that plays music and has balls that pop out of the top. Very loud and obnoxious, but he LOVES it. He gets this look of terror at first, kinda jumps, but wants more! LOL He is so funny. She brought another toy out for him to activate, but he didn't want that. He started to cry until she brought the piano back. Then when she packed up, he started crying again, so she left the piano for him to play with. I think it is awesome that he can tell us he wants more.

Early Childhood came today and played, but he wasn't in the mood for playing too much. Devin's teacher came as well, and then we had to run over to his preschool for pictures. The rest of the day we will just bum around here. Tonight, Dave and I are going to a discipline seminar by Jim Fay. I guess he is a well known guest speaker. It will be nice to get some ideas on discipline as the kids get older. I know the young kids stuff pretty well since I taught of course, but as they get older, things get a little different with talking back, breaking rules, sibling rivalry, etc. It will be nice to get some new ideas.

Hope everyone has a great day! Please remember to sign the guestbook too as that is great encouragement to us as well.

Love, Karla

Sunday, November 2, 2003 8:45 PM CST

Good evening everyone! Hope you all had a great weekend!
Dave took the Boy Scouts to the Haunted Forest last night in La Crosse. They had a blast. Just scary enough for their age, but not too bad! They all thought it was cool!

Today, we went to Sunday School and church. We invited Dave's mom and best friend Todd over for lunch. I made beef stroganoff which was very yummy! We had a nice afternoon visiting. Jacob decided that sleep was too boring, so he only slept about 15 minutes total today. He is still awake now. I wonder what the night will bring! GEEZ. The seizure meds are supposed to make him tired, not stay awake!!!

I put the boys to bed tonight and said The Lord's Prayer with them. Michael learned it when he was 4, so I have been teaching it to Devin as well. Afterwards, we each say another little prayer. Devin's was so funny. He said, "Come Lord Jesus, be our guest. Oh no, that's not the right one....okay. Hmmmm Hmmm Dear God, on Saturday....no....that's not it!" by this time Michael is laughing, so Devin says, with the hand gestures as well, "Michael, ZIP IT! Okay, Dear God, please make Zoe not dead anymore. Please make Jacob have a round head too. Thanks. Amen." What a riot!

We have another normal, busy week. Monday is PT, Tues is Early Childhood, but no OT this week since she is going to a conference. Throw in school, Moms and More, La Leche League, and we will be busy!

Take care!

Love, Karla

Saturday, November 1, 2003 11:53 AM CST

Hello Everyone!

Hope everyone had a great Halloween. We went around our neighborhood last night, then went over to our old neighborhood, but hardly anyone was handing out candy, so we went to the next subdivision where Devin's teacher lives, and everyone had their lights on there. It was so funny when Devin saw his teacher. He was so shy. She didn't even look up at us, but Michael said hi to her and then she realized who we were! Devin looked very scary in his Hulk mask. Michael was a ninja, and of course, Jacob made the perfect baby Batman. We were calling him a Sumo wrestler Batman since he was so fat from the snowsuit we put under it! LOL We then went over to Michael's grandma and grandpa's and they went trick or treating with his cousins there for a few minutes. The kids got way too much candy and overall had a great time. When they came home, they decided to bob for apples, or as Devin says, "beg for apples." LOL Then they played musical chairs while I sang, scary thought I know, with Michael pleading with me not to sing in my funny voice. After that, they wanted to play candy hunt. Dave hid candy around the room and they found it. We were teasing them that we'd play candy hunt...they'd find it in our tummies! Or we'd eat the candy, and they had to guess which one we ate! It is fun messing with them!

Dave leads Michael's Cub Scout den and is taking them to Hixon Forest for a haunted forest tonight. They walk through and afterwards sit by the campfire and tell ghost stories. They are all 10 and 11 years old, and I think are at the age where it should be fun and scare the crap out of them at the same time!

Jacob is having a great morning. He is taking a nap now at his normal time finally. He has had some minor seizures this morning, which seems to be his trend, so I am going to mention that to the neurologist this week. They only seem to be happening mostly in the morning now.

Prayer requests: Maya has finished her appts in Cleveland for now and will be going back in Dec for more extensive tests and appts. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and enjoy the new pictures I have put on the website! Here is a picture of Jacob last Halloween!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Michael and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I "NEVER let them do anything," and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning, meanwhile, here is a picture of Jacob last Halloween!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Michael and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I "NEVER let them do anything," and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning, meanwhile, here is a picture of Jacob last Halloween!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Michael and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I "NEVER let them do anything," and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning, meanwhile, here is a picture of Jacob last Halloween!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Michael and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I "NEVER let them do anything," and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning, meanwhile, here is a picture of Jacob last Halloween!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Michael and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I NEVER let them do anything, and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning, meanwhile, here is a picture of Jacob last Halloween!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Michael and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I NEVER let them do anything, and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Michael and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I NEVER let them do anything, and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at Maya's site

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Mihcale and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I NEVER let them do anything, and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at www.caringbridge.org/mi/mayam.

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Mihcale and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I NEVER let them do anything, and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at <"a href="http://www.caringbridge.org/mi/mayam">Maya's site<"/a">

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Mihcale and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I NEVER let them do anything, and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at www.caringbridge.org/mi/mayam. Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning!

Love, Karla

Friday, October 31, 2003 11:51 AM CST
HAPPY HALLOWEEN!

The boys are psyched and ready to go! We are planning on going around our neighborhood a little first, then head off to our old neighborhood since the houses are closer together and not such a huge walk between houses. We may even head up to Michael's grandparents to see them too like we usually do.

Yesterday, Devin started the day by being grumpy, which if you know Devin is oh so much fun. He holds a grudge for a long time. He is generally an awesome kid though! OT came over as well and was witness to the lovely behavior Mihcale and Devin were exhibiting. OH so much fun. It is times like that I am ever so glad Jacob doesn't do much! LOL

The boys made peanut butter cookies, since I NEVER let them do anything, and then carved their pumpkins. They turned out really cute. Michael's is big and fat, Devin's is tall and skinny, and Jacob's is a tiny little pumpkin! The afternoon was much better and they played very well together.

Jacob was in a hold me kind of mood yesterday. He slept for 1 1/2 hours and that's it. He was wide awake. Generally, the seizure meds are SUPPOSED to make them tired, not him. He has had the opposite effect since upping his dose. The helmet is looking good! No red marks yesterday either. Now just to wait for his head to grow and hopefully reshape a little. If not, at least we tried!

Prayer requests: Maya continues to see doctors in Cleveland. Keep her in your prayers that they can best serve her needs and hold the progression of her disease at bay. You can visit her at <"a href ="http://www.caringbridge.org/mi/mayam">Maya's site <"/a">

Pray that Jacob's brain will start growing and pushing those bones outwards. I want to show that pompus doctor that this helmet can work!!!

Pray that our family can find extra resources to make it through the next few months. Our funds are becoming more limited as I am needing to stay home and take care of Jacob. And of course with the holidays and 2 other kids who eat A LOT, money will be tight!

Take care everyone and I will post some pictures later this afternoon or tomorrow morning!

Love, Karla

Wednesday, October 29, 2003 3:33 PM CST
Good afternoon! It has been so cloudy, cold and gloomy outside. It makes me want to curl up in a blanket and watch a good movie!

Jacob has been doing great. He has a little cold somewhere I think...he is breathing heavy, basically snoring, yet I can't suction anything out and he isn't coughing much at all. Hopefully it will clear up soon. Seizures are minimal (YEAH!!!!) and the helmet isn't causing any concerning pressure spots.

Yesterday, PT and Devin's Head Start teacher came over. We then had to go to the store to buy The HULK. Devin was excited because it was his 1/2 birthday yesterday too. We also found a Hulk costume in his size finally, so he is going as the Hulk. Michael is going to be a ninja, and Jacob will be Batman. LOL

Devin was watching his movie yesterday and started roaring like the Hulk. Jacob just cracked up over that. He was laughing SOOOOO hard. He was hysterical. I have never ever heard him laugh like that. I ran to get the camcorder quick and got it on tape. He laughed for about 5 minutes, then started squealing. I have never heard his voice like that. It was so cool :) I called my mom to let her hear it and of course he stopped laughing so hard, but did do a couple giggles for her. I love it!

The boys are done with school for the week. I think we will carve pumpkins tonight. Friday of course will be a blast. Last year, we were at the hospital. It was the best Halloween the kids have ever had. They each got a hospital bag full of candy, toys, and more toys. We then went back to the Ronald McDonald House for a party. It was a great time for everyone! I tried Jacob's pumpkin costume on from last year and the pants only go up to his hips! Last year, we had to roll the tops of the pants over! LOL He has really grown :)

Take care everyone and please remember to sign the guestbook!

Love, Karla

Monday, October 27, 2003 9:23 PM CST
Hello everyone! Hope everyone had a great weekend! Yesterday, we went to church and then had some shopping to do at Walmart. Nothing too exciting. We spent the day lounging around and also getting some outside work done before winter.

Today, Devin had school and Jacob was supposed to have PT, but her daughters are sick. It was probably a good idea no one came over because Jacob was not himself at all today. He is not very animated at all, and just laying there. He is still nursing great, not crying or upset, just quiet. His seizures have calmed down somewhat. He had 3 today, 1 major and 2 small ones. He had some single jerks as well, which never developed into anything more serious. I think they are getting under control. I shouldn't say that outloud though because as soon as I do, they'll get worse again! LOL I have noticed one thing for sure, I can't ever say that Jacob likes or does something all the time, because he will like something a few times, then never like it again, or he'll do something for a while, then stop doing it. Oh well...such is life with brain damage.

The helmet is going good. There is one red pressure spot from Jacob laying on the side of his head at night. I called the OT at Mayo today and told her about it, but I stressed that it only happened because he slept on that side all night. It is not pressing on his head during the day at all. I think the key is trying to relieve that pressure at night. I am trying a donut under his head tonight to see if that helps. The problem is, his head is too long, so that it is uncomfortable or impossible for him to lay on it all night. As soon as he is tired, he always lays on one side of his head or the other. The OT was concerned that if he was on his back and could turn his head, it may cause respiratory problems if he spit up or something. He never spits up, so I am not too concerned. Plus he sleeps in the bassinet in our room still, so I can hear him at night. Hopefully we will figure something out because I really want to try the helmet for a while. I tell ya, nothing can ever be easy though.

Take care everyone and remember to keep Holly and Maya in your prayers as they go to Cleveland tomorrow. Holly hasn't been feeling the best either, which makes the whole trip thing even harder.

Love, Karla

Saturday, October 25, 2003 11:31 PM CDT
Good evening, very late that is! Jacob just won't give in. His eyes get heavy and then POP. He's awake again! LOL

Thursday, we had OT in the morning. Afterwards, we went out for a walk and to rake some leaves. I took some cute pictures of Jacob and Devin in the leaves. We went in for lunch and Devin kept saying he was cold and wondering if the air was on. I looked at him and he was white. He had a fever and so spent the rest of the day lounging around. My friend Angie came over Thursday afternoon to visit. Friday, Devin was still feverish, so he didn't go to school. It was nice doing NOTHING. Michael had a friend sleep over last night. This morning, a friend, who wishes to remain nameless, (You are so funny no-name!) took me out for breakfast. She has a cute little girl the same age as Jacob and is definitely a miracle baby as well! It was so great to visit and catch up on things. Thanks so much No-name!

When I got home, I got pictures of Michael, Devin and Jacob in the leaves, plus a whole bunch of Michael and Devin playing. It was sweet. I will post them as soon as they are developed! Michael went with his dad for a visit, and Dave, Devin, Jacob and I went grocery shopping and to get our hair cut. We spent the rest of the evening watching a movie and relaxing.

Jacob has worn his helmet for half of the day. So far so good. We'll have to see what his head looks like in the morning. Hopefully, he doesn't have any red marks or we'll have to take it off again and have it readjusted, which of course means another trip to Rochester. I really think I could drive it in my sleep by now. LOL

Prayer Requests: Jacob's seizures are getting a little better, but not remarkably better. Keep praying that his meds reach their maximum potential and do their job!!!!

Please pray that we can keep this helmet thing working! Even if it widens his head just a little I will be happy!

Our little friend Maya, www.caringbridge.org/mi/mayam, is going to Cleveland next week for some important dr appts. Please keep Maya and her mom, Holly, in your prayers for a safe trip and wonderful appts. It is always hard seeing someone new and just the stress of the whole situation. We love you guys!

Have a wonderful weekend!

Love, Karla

Wednesday, October 22, 2003 10:12 PM CDT
Good evening! Another busy day. Jacob had 3 seizures by 7:30 this morning, and 6 by 8:30. He broke his record! UGH. He had a few single jerk throughout the day, and then had one seizure tonight when he woke up from a nap. He wanted to be held almost all day today and didn't even go down for a nap until 3:00 PM. When he woke up, he ate, took his meds, and now he is on the couch playing his Sesame Street radio and laughing with Daddy. Daddy can make him laugh so cute!

Dave finished making his Little Room. Right now, we have 4 things hanging in there, a bath sponge, a bag of marbles, some crinkly paper cut in strips, and a rattle. He played in it yesterday for a long time. I was so excited thinking I found something he really liked. No such luck today. He has been in it 4 times and screamed each time. I swear, there is no rhyme or reason to him sometimes. It is very hard to find things he likes and can entertain him for any length of time. Sometimes there will be things he likes and then before long, he doesn't care or it doesn't interest him anymore.

I was looking back in the journal history and realized I started this journal a year ago Oct 20th! It will be a year ago tomorrow since Jacob had his shunt placed! YEAH! He had a shunt placed at 4 days old, another at about 15 days old, and then this shunt was placed after 31 days of having an EVD placed. The EVD is an external ventricular device which is used in place of a shunt when their is a shunt infection. Since the shunt is made from plastic and obviously doesn't have a blood supply, it needs to be taken out so the infection can clear. Anyway, I remember being worried since this was his 3rd shunt in just a short period of time. Well, it looks like the 3rd was the charm ::::Knocking furiously on wood:::::

Take care everyone and have a great night!

Love, Karla

Tuesday, October 21, 2003 1:43 PM CDT
Hello everyone! It has been a crazy past few days. Sunday, Jacob had a number of seizures as well. Monday, he had 3 by 8:00 AM and had one in the PM. We went to Mayo to have his helmet refitted since there were a couple of spots that were rubbing. We need to leave the helmet off until the red spots go away. Since we were there, we stopped to talk to Deb and let Dr. Kuntz know about his seizures. She is in lab working with some other patients, but emailed Deb and said to give the increase more time. I am supposed to call on Thurs with an update. This morning, he had 3 seizures right away, and then 1 since.

Since we were at Mayo yesterday, we had to reschedule his PT visit for today, so Jacob had early childhood first and PT next. At the same time, Devin's teacher was here as well. Talk about trying to juggle everything at once! LOL

Tonight we have Devin's open house/family fun night at his preschool. It should be fun.

Please remember to sign our guestbook!

Love, Karla

Sunday, October 19, 2003 3:57 PM CDT
Jacob was having many more seizures than normal today, so I called the hospital and Dr Brumm, our pediatrician, just happened to be on call. I explained what was going on, and she suggested we go in. Dr. Brumm personally came to the ER and checked him over, ordered a CBC, chest x-ray, and a urine culture just to be safe since Mr. Cuteness doesn't always play by the rules. Everything was fine. He has some elevation in his count, but she thought it was more because of the congestion he is fighting, but nothing remotely alarming. He also had elevation in the allergy portion, which we are trying to figure out. I gave him some whole milk, so maybe? Don't know about that. They misunderstood and ran a metabolic screen and everything looked good there. I am so glad we have a dr who truly cares. She came and sat with us most of the time, even did the cathing herself. Of course Jacob decided to pee as the cath was being placed and peed it out! LOL Dr. Brumm also said there is a baby in the hospital right now with hydrocephalus, and she asked if I minded if she gave the mom my number in case she wanted to talk.

Anyway, the only conclusion we really came to is that the helmet is new, and he just happened to have more seizures with it on. Don't know what to make of that. She wants it off until Wed. morning. That way we can see if it really has anything to do with it. Tomorrow, I am going to Mayo to have it readjusted and see if Dr. Kuntz is available to give her ideas on whether the helmet could be causing it. There are two areas that are red, obviously putting pressure on his head, so that may be what is causing the problem. Today, he has had 3 major seizures already, so maybe it isn't the helmet....what a puzzle.

Prayer Request: Please keep Jacob in your prayers that his seizures get under control. While they aren't horrible, they are worse then they were and obviously the meds aren't helping. I also ask that you pray the helmet works. Even if it only widens the back of his head and forehead a little and controls the pointed areas. Thanks for your support as always!

Lots of Love,
Karla

Friday, October 17, 2003 9:13 PM CDT
Hello everyone!

Jacob is a new man tonight! Just call him Superbaby!!! We went to Mayo today, and he was fitted for a helmet. It is bright blue and has a strap that fits under his chin and crisscrosses over his ears. They made a paper mache mold of his head, then pored plaster paris in it. They build it up in areas they want the head to grow. They take this plastic sheet and mold it around then. After that, they took foam for the inside and then pushed the plastic out around where his shunt is. Next, they took a round piece for his forehead, and added a strip on it to connect it to the rest of the helmet. Devin was SO funny! He looked at Jacob and said, "MOM! Jacob looks like a super hero!!!" He was so excited and his eyes just sparkled. Then when they added the forehead piece on, he said, "Now Jacob has a laser beam!!!!" It was SO cute! So Jacob is Superbaby I guess! It looks cute on him, kinda like a bike helmet. He will have to wear it about 23 hours a day. My friend Ann went with to keep me company. We went shopping afterwards at a 2nd Hand Children's store. I found Jacob a few cute pairs of bibs and shirts, and Devin a pair of jeans.

We have to go back to Mayo on Monday to keep a close on on how this is fitting. Then it looks like weekly or bi-weekly visits for a while after that. Kinda stinks, but yet I have really wanted this for a long time too. The OT at Mayo said that it may not work, but if we don't try, we will never know. That is how I feel about it too. She also said that she knows we have wanted a helmet for a long time, but that Dr. Raffel was against it. She said that I am doing a great job advocating for what he needs and to keep on being pushy! LOL It is sad when it gets to that point though...I told her I honestly think part of Dr. Raffel's feelings on not wanting one, besides saying his head won't grow, is that he never felt he'd live this long. She totally agreed.

Tonight, Jacob took a bath to wash all the crud off his head. He LOVED splashing! It is funny because one other time he started to splash, but scared himself a little when he did it. This time, he had his arm and BOTH legs going. In fact his legs were going more than his arm! He'd straighten his legs all the way out too. It was so cute! He started laughing and then choked on his spit when he did! It was really funny!

Love to all,

Karla

Wednesday, October 15, 2003 12:39 AM CDT
Random Musings from my Heart

I have thought a lot about a few conversations I have had this week (I know it is scary that I have been thinking pretty hard! Hee hee...) Anyway, I was talking to an old neighbor of mine who was asking how Jacob was doing. I told her he was doing very well, he was having some seizure activity, but overall he was doing good. We went on to talk about development etc and once again it struck me that I wonder if when I say he's doing good, do people interpret that things are going to be okay? Do they think that it means he will someday be "normal?" In my mind, when I say he is doing good it means he is not in the hospital, hooked up to the ventilator, with infection in every inch of his body, with tubes and wires coming from his head, arms, chest, legs. But yet at the same time, I don't feel like I want or need to justify or discuss his development everytime I talk about him. However, as most of you moms and dads know, when anyone asks you about your baby, the normal conversation seems to go as such, "How much does he weigh? Is he rolling, crawling, pulling himself up, walking? Does he have teeth? Does he eat pretty good for you? How is he sleeping?" You know...the baby stuff that inevitably gets asked. For me, it is hard to be asked those questions sometimes, because most of Jacob's skill level is that of a 1 month-4 month old. He just started kicking his legs more and has slight movement in his feet and toes, with no sensation from the knee down. He isn't rolling independently, however he will with some coaxing. To hold his head up while on his tummy is extremely hard work, he may never crawl and more certainly will never walk. He is working very hard at getting teeth number 3 and 4 in, but because of the darn seizure meds and not having the same skills to play and chew on things like other babies (even though we have come very far!) they are taking longer to poke through. Jacob eats excellently, but if there is one speck of chunkiness to his food, he gags. He may and may not ever progress to table food. Jacob sleeps wonderfully, but I wonder how much is truly because the seizure meds cause drowsiness, not to mention the fact that the only time I have a break to do the normal housework or be with the other kids one on one is when he is sleeping. As hard as it is sometimes to realize Jacob will never develop like the other kids, I still know the realization of where we were and where other parents are now mourning their children wishing they could have more time with them even if it means countless hours taking care of them in spite of their disabilities and extreme needs. So when I say Jacob is doing good, you will all know what that means...he's alive, he's thriving, and yeah, there might be lots of delays, but he's here and loved.

Another conversation happened between me and another friend who has a disabled child. She was talking about another person we know who seemingly has it all on the outside. I shared that while this person may appear to have it all, I feel just as rich because I have an insight into a deeper place that many may not have...a place where death is waiting, and yet GOD is there. A place where the worldly things mean absolutely nothing, yet God, family, and friends mean everything. So while we may not have much money in the bank or our wallets, while I may not have the nicest car or fanciest clothes, I am very rich and feel very blessed.

Today, at Moms and More, we discussed negative emotions such as envy, anger, covetousness, anxiety, bitterness, and depression and how through God, we can learn to live without these feelings. I have been surprised at how many feelings are involved at different times, different situations and circumstances since having a special needs child. I can be fine, and then something happens to make me sad, angry, bitter, or anxious. It was a nice reminder that through all the trials any of us face, God is there to help, heal, and guide you. As it says in Phillippians 4:6-7 "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be known to God; and the peace of God, which surpasses all understanding, will guard your hears and minds through Christ Jesus." I have been reminded many times throughout this year that God is right in the middle of everything, even in the darkest of days. It is a wonderful feeling to know He will never forsake us. When Jacob was in the hospital, we were told that things were not looking good, that it would probably be in the "best" interests of all involved to stop treatment. Dave and I left the room crying and decided to go downstairs to the cashier to exchange a voucher for cash. As the cashier handed me the money, she said there was a message written on one of the bills. On a $5 bill was written, To whomever receives this money, may God grant mercy on your lives and He will begin to do big things through you. signed, Dominique. The name Dominique means belonging to God. I still get chills everytime I look at it, for I KNOW that God makes his presence known, especially when we are at our lowest.

God blessings to all of you!

Love, Karla

Monday, October 13, 2003 9:05 PM CDT
Hello everyone! I spoke too soon I think. The seizures were intense again today. I think the meds are working a little, but the seizures are still there. So keep praying and hoping that we can find the right dose and combo of meds to get these under control.

We had the new PT come today and she is great. She gave me some new ideas to try to get Jacob rolling and holding his head up while on his tummy. He works so hard!

We are going to Mayo on Friday to see about getting Jacob a helmet. I have mixed feelings on it since we asked for one months and months ago, but the neurosurgeon was against it, saying his head wouldn't grow. 2 other doctors wanted it, but with one objecting, you can't get insurance to pay for it. The neurologist was getting upset about it, and now they are going to try it. I fear it will be too late, but we will never know if we don't try. Please pray that we are going down the right path with this. Not that a helmet is invasive, but well, it is just another thing to deal with right now.

I want to thank those of you who have signed the guestbook. I spend time updating the site and sharing what is going on in our lives, and it is nice to hear from you all too! The messages are encouraging because they let us know that others are thinking of us. So please remember to sign if you haven't for a while! Thanks!

Love, Karla

Monday, October 13, 2003 9:05 PM CDT
Hello everyone! I spoke too soon I think. The seizures were intense again today. I think the meds are working a little, but the seizures are still there. So keep praying and hoping that we can find the right dose and combo of meds to get these under control.

We had the new PT come today and she is great. She gave me some new ideas to try to get Jacob rolling and holding his head up while on his tummy. He works so hard!

We are going to Mayo on Friday to see about getting Jacob a helmet. I have mixed feelings on it since we asked for one months and months ago, but neurosurgeon was against it, saying his head wouldn't grow. 2 other doctors wanted it, but with one objecting, you can't get insurance to pay for it. The neurologist was getting upset about it, and now they are going to try it. I fear it will be too late, but we will never know if we don't try. Please pray that we are going down the right path with this. Not that a helmet is invasive, but well, it is just another thing to deal with right now.

I want to thank those of you who have signed the guestbook. I spend time updating the site and sharing what is going on in our lives, and it is nice to hear from you all too! The messages are encouraging because they let us know that others are thinking of us. So please remember to sign if you haven't for a while! Thanks!

Love, Karla

Sunday, October 12, 2003 9:36 PM CDT
Hello everyone! I hope you all enjoyed this beautiful weekend! Yesterday was spent getting the van fixed, grocery shopping, and driving home in the pouring rain! I swear, the last 3 times I have gone grocery shopping, it has been raining when I got out! Last night, I went to my friend Amy's surprise birthday party on the Island Girl Cruiseliner. It was a great time. Dave stayed home with the boys and Jacob was sleeping by 8:30 PM. Usually he is up until 11 PM! He didn't wake up until 7:00 this morning, so he must have been very tired!

Today we went to church and then had to go buy Devin a Flash figurine...you know the superhero Flash, from Justice League. He has loved him now ever since he saw the boy dressed up like Flash on Daddy Daycare. Devin has slept in his bed for the last week, so we thought he deserved it. Usually he sneaks into our room in the middle of the night. We have a king sized bed, so he slides in...very smooth huh?

I went with Michael around our neighborhood today selling Boy Scout popcorn. If any of you who live close to us are interested, let me know and I will tell you what's for sale!

Dave has been building Jacob's little room. I am hoping to go tomorrow and find some neat things to put in it. Things that make noise and have cool textures I think will work the best. Jacob wanted to be held almost all day. As long as he was with me, he was fine. I had him in the snugli for a while tonight and he was so happy being with mama. He also loved the stroller ride when we were out selling popcorn.

I gave Jacob broccoli with chicken today for lunch. He usually hates vegetables, but he really enjoyed it. In fact, he ate a whole jar which really surprised me. He also had bananas and pudding today, so he ate 3 times. PLUS he nursed like crazy and had a bottle of whole milk with his miralax. With all that eating, I am hoping he starts gaining even more.

The meds are working I think. I have not seen any shaking with the jerks today. In fact, he has only had 1 seizure today and a couple startle jerks. I am praying that we can get a handle on them. Thank you so much Carolyn for the absolutely beautiful prayer. You made ME cry!!!

Twice today Jacob let out a loud giggle. Once when the boys were playing around him and another time when I was laughing. It was so cute!

Michael has a 2 hour late start tomorrow morning, which also means Devin won't have school. The PT comes tomorrow for her first official visit. I am looking forward to working with her.

Take care everyone and have a great week! Please remember to sign the guestbook, especially if you are new or haven't signed it for a while!

Love, Karla

Friday, October 10, 2003 10:36 PM CDT
Hello everyone! Caringbridge is changing their server tomorrow, so it may take up to 72 hours to post updates. Just so you know and I don't get emails or phone calls wondering WHY I haven't posted! LOL

We had another busy week with our Mayo visit, school, and therapy. Yesterday, OT came in the morning. Jacob worked with the light box, and he seemed to be attracted to the light. He sat in his chair for about 45 minutes playing with toys on the light box. In the afternoon, the new PT came over with the Early Childhood teacher. She seems very nice and will be coming back on Monday mornings. Devin and I also went on a field trip to the pumpkin patch yesterday, while my friend Amy watched Jacob.

Today, Devin had Head Start. We are getting the van fixed Saturday and didn't want to drive it "just in case" so Lorraine, my mother-in-law, came over take us into La Crosse. We dropped Devin off and then went out for breakfast. We also picked up the black and white pictures we had taken. They were framed and matted and are simply BEAUTIFUL. Then we had to run over and get some new medicine for Jacob, which hopefully will help with his seizures. He shakes so bad with each jerk now. I talked to Deb yesterday at Mayo and she said that Dr. Kuntz was out of town. She asked if I minded if the neurologist on call was contacted, and I said as long as it wasn't Dr. Mack! Deb laughed and then found out it was another dr instead, so I was satisfied! We will try this med every night for a week, then start on it twice a day. I am hoping and praying we can get them under control. We went to KMart today to find Jacob a winter coat and he had a seizure in there. I just hate it so bad sometimes...it looks like he is scared and hurting.

Tonight Jacob was sitting with Dave playing with his Sesame Street radio. He loves that thing. It plays about 5 different kids songs, in a jazzy kind of way. Jacob has figured out how to bang his hands just right to start it. Anyway, he was sitting with Dave and everytime he'd start it, Dave would say something to him. Jacob was laughing so hard. If Michael or I talked to him, he didn't care, but if DADDY did then it was funny! I find moments like this so incredible.

Have a great weekend everyone!

Love, Karla

Wednesday, October 8, 2003 10:18 PM CDT
Happy 14 months to Jacob! It seems impossible that it has been 2 months since his birthday already!

Here is a review of Jacob:

Jacob is wearing all 12 month clothes now. He is even keeping his pants up better! He wears size 2 diapers and size 1 shoes. I noticed that some of his socks are getting small for him. His feet don't seem to be growing much, which is pretty typical of spina bifida.

I think he is roughly 14 1/2 lbs and 28 1/4 inches. He is actually pretty long when he stretches out. He also seems to have a much more mature face now...more of a big boy face!

Jacob enjoys holding rings and chewing on them. He loves the black and white Sassy brand rings, the kind with the rubber on it. He gets his head going back and forth, trying to chew SOOO hard, but it is never hard even for his liking. We will rub it hard on his gums and then he is happy! He also loves his Sesame Street radio. It has 3 small buttons on it, and he will feel for them with his hand and then hit it. He loves that toy the best I think. He cries when the music stops!

He is still working on lifting his head while on his tummy. It seems to be very hard for him fighting gravity like that. He will roll over if you give him a cue, but hasn't really independently rolled except for on the bed a few times. I think it will come eventually, just takes time.

Jacob is still loving fruits, pudding, and yogurt. He cries when you first start feeding him and gets very defensive orally by holding his mouth open and refusing to swallow, but once he realizes it is good, then he eats fast. He cries if you don't feed him fast enough. Any foods with textures is still hard, but that is very common with children with cerebral palsy, which is another diagnosis that he has received. It just basically means he has brain damage and it is not going to change.

We are seeing more of his personality coming out. He has definite likes and dislikes: how he wants to be held, what he likes to eat, what songs you sing to him, and who he wants to hold him and when. I love seeing these things emerge.

I noticed yesterday when I was massaging his feet that his toes are moving, ever so slightly. I have not seen movement like this since right after he was born. It is exciting to see his ankles flexing upwards, some toe movement, and also more knee flexion, not just hip flexion. His sensation below the knee is still not present, but there is some movement. Even if it may not be voluntary movement all the time, it is still movement, and we will take whatever we can get!

Hope everyone has a great night!

Love, Karla

Tuesday, October 7, 2003 7:49 PM CDT
Good evening everyone! What a beautiful day today...highs in the 80's. Nice change from last week! Of course last week we were freezing, waiting for our furnace to be replaced, and yesterday they came to replace it and now it is nice. Isn't that how it works?

We went to Mayo yesterday to get fitted for a seat. We found one that seems to be perfect for him. It is called a Kid Kart Xpress. The headrest seems to have been made for him. It fits the back of his head perfectly. It has lateral supports that will give him trunk support, along with a harness. We are also asking for a tray and an inside base. Hopefully medical assistance will cover it, but often they decide what is necessary and what is not, and opinions differ greatly between the parents and MA. I think if one of them had a child with disabilities it would be a different story! Anyway, we will see what happens. I am excited about it. The system looks a lot like a stroller, but has all the support of a wheelchair. When Jacob sat in it yesterday, he looked like such a big boy!!!

I also stopped and talked to Deb about his seizures. She is contacting Dr. Kuntz and will call me back. He is still having them when he wakes up, but now the jerks have gotten very intense and his muscles shake when he jerks. It is really scary for him and for us. It looks like it is hurting him and he cries so hard.

Otherwise, things are going great. Jacob is chewing so hard, but not hard enough for his liking, and he gets so mad. I love seeing that he has an opinion :)

Right now he is eating his chocolate pudding with meds mixed in. He loves pudding! He smacks his lips so cute too :)

Hope everyone is having a great evening and take care!

Love, Karla

Sunday, October 5, 2003 5:20 PM CDT
Hello everyone! I added new pictures! I especially like the ones on the bottom. Jacob is just too cute :)

We have had a nice weekend. Yesterday, Dave had to work again and then helped his mom and her neighbor with a few things before winter hits. I spent time outside organizing some things as well and washing the outside of the house and windows a little.

Today, we went to church and then went to pick up a few things at Walmart. It is such a beautiful day outside too! The boys have been playing outside with friends and we have been enjoying the weather as well.

After a conversation with my friend Tracey today, I really sat and thought about how lucky I have been to have such wonderful people in my life. I have always had good friends who have always been there, but after having Jacob and going through the various crisises we have had to deal with, I have been able to see who those special people are in my life. Some relationships have grown stronger, others have surprisingly not been as good as I hoped or thought they would, and other relationships I have had to let go because I just don't have the emotional energy to deal with them right now.

I have also met so many people because of Jacob who I am sure God has put in my path, people I know I would never have met if circumstances had been different...people I am so blessed to know, people who have touched my heart very dearly. I just want you all to know just how special you are to us and how much your support really means.

Love, Karla

Thursday, October 2, 2003 9:53 PM CDT
Good evening everyone!

Our friend Maya is in the hospital tonight. Please keep her in your prayers for a fast recovery!

The poptabs that I was referring to before are a project that the Ronald McDonald House does. The house in Rochester, MN where we stayed raises $10,000-12,000 a year in poptabs! There is more aluminum in the poptab than in the entire can. I believe it is once a year they turn all the collected tabs in for money. Schools and organizations from all over participate. I feel it is just one way everyone can help such a wonderful place. The Ronald McDonald House is an absolutely amazing place. Words just can't even describe what a place it has in the hearts of those who stay there.

We received a special gift today from the legion auxiliary club, which my mother-in-law belongs to. It is called a Spinoza bear. You can see it at www.spinozabear.com. It is basically a therapy type bear. It came with 10 tapes of different themes, sleep, anxiety, self esteem, grief and loss, etc. The voice on the tapes is the most soothing thing I have ever heard. Jacob seems to like it. I brought it in the boys room tonight so they could listen to it before bed and Devin told me to get that stupid bear out of his room! He is a piece of work let me tell you!!!

Jacob had OT today. He loves this one sensory brush she uses. He played with it for at least a half an hour. Why he likes those textures, I don't know. He loves her plastic potscrubber too. Crazy boy!!!

Hope everyone has a great night and a great Friday. Once again, keep Maya in your prayers. She is a sweet little girl who has become very dear to our hearts (and her mom Holly too!)

Love, Karla

Wednesday, October 1, 2003 8:52 PM CDT
Hello everyone! Sassybritches is sitting on my lap, so big and tall and STRONG! WOW. This week, Jacob has decided to show off. His trunk is strong from the waist up! His teacher came over on Tues and asked if she had missed something because he looks so big sitting up! It is awesome! He is banging his left arm, and his right arm goes straight his version, of swinging the right arm :)

Here's Jacob saying hi!
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Tonight for supper, I made Jacob some mashed potatoes. Utter disgust at first....then he got used to them and ate about 1/4 cup! They were full of butter and calories too, which is good! Then he ate a jar of prunes at 8 with his meds. He is getting heavier, I can tell. His legs are getting thick and his chest is broadening out as well. I was looking at pics of him where his tummy looked so bloated in comparison to his body. Now that the muscles have developed more in his chest and he is gaining weight, he looks so much better.

We are switching to a new physical therapist. Our old one was very good with Jacob. I know he liked her and he worked very well with her. There was just some personality quirks that I was having problems with and felt that some of our needs for equipment were not being addressed appropriately. I think it will be for the best in the long run, but it is very hard to make these decisions when people's feelings are involved.

Take care everyone! We are having OT in the morning, and then I am babysitting my friend Amy's boys tomorrow.

Love, Karla

Monday, September 29, 2003 7:08 AM CDT
Good Morning!

We had a nice weekend. Friday night, we got a Papa Murphy pizza and watched Daddy Daycare. That is such a cute movie. There is a boy with a Flash costume in it, and of course Devin was obsessing about that. Now he wants a Flash costume. He was memorizing all the parts of what Flash does and says too of course. He is a riot. Flash takes off his costume in one part and Devin just could not handle that....why did he take it off? Why doesn't he want to be Flash anymore? On and on and on.....

Dave had to work on Saturday. After he got off work, we went to a picnic. Michael's grandpa pitches horseshoes on a league and they saved pop and beer tabs all season and presented us with a 5 gallon pail full to the top!!! We shared Jacob's story and told everyone what a wonderful place the Ronald McDonald House is.

Yesterday, we went to church, did some shopping, and cleaned the house. Dave went to order the supplies to make a Little Room for Jacob. It is constructed with PVC pipe, plexiglass, and a balsam wood resonance base. The purpose of the Little Room is to give visually impaired children an enclosed space to explore. The resonance base will echo, giving extra input. We will hang things down from the celing of it. The Little Room we saw had tons of neat things in it, like a bag of marbles, metal measuring spoons, textured sponges, a brush, etc., just things that aren't necessarily toys, but have cool sounds and textures for them to explore. I think he will really enjoy it once he gets used to it.

We don't have any appts this week, just our normal therapies and school for the boys.

Take care and please remember to sign our guestbook if you haven't for a while!

Love, Karla

Friday, September 26, 2003 9:02 PM CDT
Good evening everyone! We had a busy Friday. Jacob saw Dr. Kuntz this afternoon. She is adjusting his morning dose of Topamax another 10 mg. She was encouraged that the seizures have decreased some, and thinks we are on the right track by increasing his morning dose. We discussed the issue of his head shape once again and said she really thought she had Dr. Raffel convinced to go ahead with some sort of banding, but now she is going to talk to him again. His head is growing, just slow, but it is growth. The concern I have is we have wasted this period of growth when things could have been shaped. What if his head stops growing now and just gets thicker instead? I also discussed the issue of when he was born and his head caved in so bad, wondering if his head was overdrained. The problem with assigning just one area as the blame is that too many things went on at once....the meningitis, the abscesses, the excess fluid...all these things contributed. With the infection last fall, Jacob lost brain tissue. It's called atrophy of brain tissue....we saw it coming out in his EVD. Not a pretty sight :( With the abscess came loss of tissue. BUT I am reminded that he made it!!! He survived, and even if he has a small head, he sure is CUTE!!!!

Jacob has been Mr Funnypants lately. He shakes his head so darn cute, knowing he is funny. He has since figured out how to shake it while holding his head with no support. Now that takes talent! Keeping his balance and shaking it isn't an easy thing! Tonight he was sitting on my lap, hitting his Sesame Street radio over and over and over. The song would barely start, and he'd hit it again to chose a different song. Devin was very impressed with that. I love how the boys gets so excited with everything he does! Tonight, Jacob was also laying on my chest, pushing himself upright, so I barely was holding onto his waist. He thought he was pretty hot stuff! I am absolutely loving seeing his personality coming out, his skills emerge, and the absolute joy that he is. He has some muscle mass above the knee, but below it is very floppy. I have been sitting him on his knees more often lately and he can really sit up tall, as if he is standing. So many new things happening again!

Jacob was back up to 14 lb today, so he is on his way to gaining it all back!

Take care everyone and have a great weekend!

Love, Karla

Thursday, September 25, 2003 6:35 PM CDT
Hello everyone! I hope everyone is having a good week! We had PT on Tuesday and a visit from Devin's Head Start teacher. Wednesday, Devin had school in the morning, and I went to Moms & More. Today, OT came over, as well as the Birth to Three coordinator to add some things to his plan. Tomorrow, I have a dr appt in the morning, so the boys will go to Penny's. She is the sitter we had for Michael and Devin. Devin will love playing there again! Then tomorrow afternoon we have to go back to La Crosse (yeah, I know....really organized weren't they when they scheduled appts????) to see the neurologist. Dr. Kuntz got her Wisconsin license, so she can do outreach in La Crosse now! I am so excited! It will be nice to see her here sometimes so that we can save a trip to Rochester.

I tried the Duocal to add calories to his food. All I can say is GROSS. Poor boy starts wretching in his gut. He didn't throw up, but came pretty close! I tasted it, and it tasted like lard. It is a combo of fats and carbs. I called the dietician, and she said that it could have been exposed to heat or cold or the fats part of it went bad, even though the expiration date was fine still. Needless to say, it went into the garbage. YUCK. I tried the Polycose today mixed into yogurt, and he seemed to like that just fine. I tasted it, and there was no taste at all.
The dietician also talked about adding butter to foods and buying the highest calorie baby food, yogurt, and pudding.

It has been brought to my attention that I never talk about my husband! We are still married, and he hasn't been kicked out of the house or anything!!! LOL So anyway....Dave is taking Stephen Ministry training tonight at church. This is his 3rd training. The program involves training people to be ministers to others who have a need, whether it is for someone going through a divorce, death, illness, trouble at work, etc. He will be assigned a person when the need arises and he will meet with the person and be a listener for that person. I think it is a great idea. I also think that because Dave has been through a lot with Jacob, that will be a nice foundation for him to draw on.

I am noticing LOTS of people visiting his site, but hardly any notes in our guestbook! I don't expect you to sign everyday, but every once and a while, it is nice to hear from everyone too! :)
Take care everyone and I will let you all know how Jacob's appt goes tomorrow.

Love, Karla

Thursday, September 25, 2003 6:35 PM CDT
Hello everyone! I hope everyone is having a good week! We had PT on Tuesday and a visit from Devin's Head Start teacher. Wednesday, Devin had school in the morning, and I went to Moms & More. Today, OT came over, as well as the Birth to Three coordinator to add some things to his plan. Tomorrow, I have a dr appt in the morning, so the boys will go to Penny's. She is the sitter we had for Michael and Devin. Devin will love playing there again! Then tomorrow afternoon we have to go back to La Crosse (yeah, I know....really organized weren't they when they scheduled appts????) to see the neurologist. Dr. Kuntz got her Wisconsin license, so she can do outreach in La Crosse now! I am so excited! It will be nice to see her here sometimes so that we can save a trip to Rochester.

I tried the Duocal to add calories to his food. All I can say is GROSS. Poor boy starts wretching in his gut. He didn't throw up, but came pretty close! I tasted it, and it tasted like lard. It is a combo of fats and carbs. I called the dietician, and she said that it could have been exposed to heat or cold or the fats part of it went bad, even though the expiration date was fine still. Needless to say, it went into the garbage. YUCK. I tried the Polycose today mixed into yogurt, and he seemed to like that just fine. I tasted it, and there was no taste at all.
The dietician also talked about adding butter to foods and buying the highest calorie baby food, yogurt, and pudding.

It has been brought to my attention that I never talk about my husband! We are still married, and he hasn't been kicked out of the house or anything!!! LOL So anyway....Dave is taking Stephen Ministry training tonight at church. This is his 3rd training. The program involves training people to be ministers to others who have a need, whether it is for someone going through a divorce, death, illness, trouble at work, etc. He will be assigned a person when the need arises and he will meet with the person and be a listener for that person. I think it is a great idea. I also think that because Dave has been through a lot with Jacob, that will be a nice foundation for him to draw on.

Take care everyone and I will let you all know how Jacob's appt goes tomorrow.

Love, Karla

Monday, September 22, 2003 10:01 PM CDT
Good evening! We had a very busy day! First, we met with Deb, the nurse coordinator who took all of Jacob's vitals, then we went to lunch. After lunch, we met with Dr. Driscoll in Physical Medicine and Rehabilitation (PMR) and reviewed how Jacob has been doing. We discussed seating systems, and we will be seeing a specialist soon to get 2 systems ordered....one stroller/wheelchair type and one with a tray for sitting on the floor to play with toys, etc. The dietician came in and we discussed adding some calories to his food. She gave us some samples to try. We need to get Jacob plumped up a little :) She was very pleased he nurses so well. We discussed him not wanting to eat after having thrown up last week and she said not to force the issue too much, but hopes that it is just a phase. There has been a lot going on with him in regards to his cold, which is basically gone now, and the diarrhea, teething, etc. Now tonight he ate a whole pudding cup, so who knows! LOL Crazy boy :)

The social worker came in last. We talked for a long time about how I have been feeling lately and how we are all adjusting. She shared with me that my name had come up in conversation regarding Jacob's case. I guess the staff was saying that they truly believe Jacob is a situation where the love he received from his family is what truly healed him, that clinically things were not in his favor, yet he made it. It was also noted that those who were not as optimistic where thinking twice about what happened.

We went over to St Mary's to visit with Michael's grandma. She is going home tomorrow if things look good. As we were getting off the elevator to go home, we ran into one of our favorite resident doctors, Maryam. It was great seeing her again. She said some very kind words to me and gave me a hug. It is so amazing how the caregivers become like family.

Hope everyone had a great Monday!

Take care!

Love, Karla

Monday, September 22, 2003 10:01 PM CDT
Good evening! We had a very busy day! First, we met with Deb, the nurse coordinator who took all of Jacob's vitals, then we went to lunch. After lunch, we met with Dr. Driscoll in Physical Medicine and Rehabilitation (PMR) and reviewed how Jacob has been doing. We discussed seating systems, and we will be seeing a specialist soon to get 2 systems ordered....one stroller/wheelchair type and one with a tray for sitting on the floor to play with toys, etc. The dietician came in and we discussed adding some calories to his food. She gave us some samples to try. We need to get Jacob plumped up a little :) She was very pleased he nurses so well. We discussed him not wanting to eat after having thrown up last week and she said not to force the issue too much, but hopes that it is just a phase. There has been a lot going on with him in regards to his cold, which is basically gone now, and the diarrhea, teething, etc. Now tonight he ate a whole pudding cup, so who knows! LOL Crazy boy :)

The social worker came in last. We talked for a long time about how I have been feeling lately and how we are all adjusting. She shared with me that my name had come up in conversation regarding Jacob's case. I guess the staff was saying that they truly believe Jacob is a situation where the love he received from his family is what truly healed him, that clinically things were not in his favor, yet he made it. It was also noted that those who were not as optimistic where thinking twice about what happened.

We went over to St Mary's to visit with Michael's grandma. She is going home tomorrow if things look good. As we were getting off the elevator to go home, we ran into one of favorite resident doctors, Maryam. It was great seeing her again. She said some very kind words to me and gave me a hug. It is so amazing how the caregivers become like family.

Hope everyone had a great Monday!

Take care!

Love, Karla

Sunday, September 21, 2003 7:03 PM CDT
It has been a year since we almost lost our baby boy. It is hard for me to think about that time in our lives, which feels so long ago, yet still very fresh in my mind. Jacob was not acting like himself that early Saturday morning....crying like he had gas. Took his temp, he was fine, catheterized him, that was fine, but a little cloudy, and so we thought he had gas, so we tried to burp him a little. Within that hour I decided things weren't right and so I took him into La Crosse. 3 hours we were in the ER and the results came back that he had a UTI. The dr was a complete moron, didn't check his blood or spinal fluid, even though he was crying a high pitched cry and obviously had many neurological issues presenting. He basically said that Jacob is not what he is used to taking care of and that if it wasn't a UTI, he didn't know what it could be. So, he sent us home with meds. Part of me was relieved that was all that was wrong, but after going home and sleeping 4 hours, I knew it was something else. We took him to Rochester and there we spent 6 hours in the ER. He was admitted for UTI, dehydration and possible shunt infection. Tests came back positive for meningitis and sepsis, which means he had infection all over his body, in his brain and blood. That night, as Dave lay snoring on the cot, Jacob quit breathing many times. His heartrate was very low, he turned bluish gray and at one point, it took over a minute to recuscitate him. They drew spinal fluid off his brain. In the early morning hours of Sunday, Sept 22nd, he was rushed to CT scan to check for brain bleeds and transported into the PICU. He was put on a ventilator and sedated. Blood pressure was high, heartrate irratic, not doing well at all. He was in kidney failure. He remained on the ventilator that whole week. They have a rating scale for critical patients, and Jacob was 6, which is the highest rating. Some family and friends came on Sunday to be with us. It was a horrifying experience, one that I will never truly get over. To see your child stop breathing in front of your eyes, to see them turn blue, is something no one could get over.

Yet, here we are a year later....against the odds. Against what medical professionals told us would happen. Against what we believed in our hearts would happen....But not against God's will. I truly believe that if it had been God's will, Jacob would have died a year ago, yet instead he used that opportunity to show us all about His miracles, and to show our family just how much we need Him always. Today I put on Jacob's Mayo onesie, which is getting too small, but needed to be worn just once more. I took a picture of him with a plaque I have that says "Miracles Happen to Those Who Believe." And I truly know he is a miracle.

Love Karla

Friday, September 19, 2003 9:34 PM CDT
Good evening! Jacob is still having diarrhea and severe gas pains with it. I called the dr tonight and they said to give him a larger dose of gas drops which helped a lot. If he is continuing to have pain though tomorrow, I am taking him in. I am worried that it may be bacterial since it has lasted almost 2 weeks now. I was able to convince him to eat some pudding and yogurt, which may not be the best thing since they are milk based, yet he won't take his meds and he needs extra calories, so I guess whatever works. He took some cranberry apple tonight too, which took a lot of coaxing but finally went down.

Devin had Head Start today, so Jacob and I spent the morning running around and doing errands. It is nice to get stuff done without having all 3 boys with. I feel like we have settled into a nice routine during the week with school and therapies.

Monday we will go to Mayo to see the nurse, Deb, Dr Driscoll in Physical Medicine, the dietician, and the social worker. It will be nice to talk to the dietician and get some ideas on what may be going on with him refusing to eat and ways to add extra calories. I am thinking about taking Michael with us on Monday so he can see his grandma in the hospital too. I talked to his teacher to make sure there wasn't much going on and it should be fine.

Take care everyone and have a great weekend!

Karla

Wednesday, September 17, 2003 8:32 AM CDT
Hello everyone!

I talked to Deb at Mayo yesterday, and she relayed a message to Dr. Kuntz. We are going to stick with the meds as is for now, because it is really hard to know if the Topamax is working, considering the fact that Jacob has a cold and diarrhea now, and that sickness lowers their seizure threshold. Deb is having appts scheduled for next Monday, a month earlier than our norm, because she is a little worried about his weight loss. She wants us to see a dietician to work on increasing calories, etc which is fine. I am concerned that our baby who used to eat a jar+ of food is now gagging with every bite.

Update on Michael's grandma: Her surgery went well and she is recovering in St. Mary's hospital in Rochester. She is very sore, but came out of ICU yesterday. Please keep the prayers coming for her recovery.

Have a great day everyone!!!

Karla

Monday, September 15, 2003 9:41 AM CDT
Update: Jacob went to the dr. this PM and she thinks it is some sort of virus working its way through his system. He is still hydrated, no ear infection or congestion in his lungs, just in his nose. He has lost 7 oz though in 3 days, which isn't good. We need to closely watch hydration and how many wet diapers he has.

I forgot to mention that yesterday was our 7th anniversary! Dave and I went out to eat and to a movie. A friend from church watched the boys for us. It was nice to get out together!

Good Morning!

Jacob started having stinky poop last Sunday, which now has turned into diarrhea. He has a very stuffy nose too. Yesterday, I noticed some of his Topamax sprinkles in his poop, and so I called the dr in La Crosse who was on call and the neurologist on call at Mayo to see what they thought. Both were not our regular doctors. I guess the Topamax can cause "ghosts" like that, where there is the shell, but the meds inside are absorbed. Thankfully I called Mayo, because the dr in La Crosse thought I should give him another dose. I have learned to cross reference! LOL Then, last night, Dave gave Jacob some yogurt and his meds, and sure enough, within a few minutes, he puked them all over Dave. YUM huh??? So once again, Mayo got a call saying now what? Do we give them again? We did, since it had only been a few minutes and you could see the meds in the puke. Just what you want to hear this morning huh? Puke stories....LOL Anyway, this morning, we had a repeat performance of last night. But I am a better catch than Dave and seemed to be able to control the puke so it stayed mostly on the bib. I called the pediatrician in La Crosse, Dr. Brumm, and she said to repeat the meds since it was only a few minutes again and to bring him in at 1:20 today for an appt. Our concern is what kind of bug he has in his tummy....last year it was the citrobacter that caused his meningitis, and that came from his poop too, so hopefully we won't be repeating last year's excitement. It will be a year on the 21st, so this is a little too close for my comfort. The scary thing is the end of his shunt is in his tummy, so if there is some kind of bacteria reeking havoc in there, we want to get it under control. And we all know how Jacob doesn't like to follow the rules on typical behavior. But the funniest thing is this kid pukes his guts out and then gets all animated and excited, swinging his arms around, smiling, having a great old time. He is revelling in the fact that he can make Mommy and Daddy jump really fast! LOL So today we get to go to the doctor again and make a poop run so she can test to see what kind of bacteria is in there. I know how much everyone, especially Tracey, loves to hear my poop run stories, so I will post how our appt goes.

Please remember to keep Michael's grandma in your prayers today. She went into surgery at 6:00 AM this morning.

Tomorrow is the Day of Prayer and Celebration for our buddy Noah as he celebrates his 1st birthday!!! Please take time tomorrow, in fact take lots of time, to pray for this sweet miracle of God! You can visit him at www.caringbridge.org/hi/noah.

Love to all!

Karla

Friday, September 12, 2003 8:34 PM CDT
Good evening!

We have had another busy week. Devin had Head Start this morning. After I dropped him off, I took Jacob to his doctor appt in La Crosse. He weighed 14 lb 2 oz!!! He gained 10 oz this month. He got 2 shots as well. He will get his flu shot next month, as well as the rest of us too, and he will have his next visit in 2 months!!! I am excited that we are finally making it longer between visits....first it was every week, then every 2, then a month. Our goal is to make it that long now! I told Dr. Brumm about his visit to Mayo on Tues. She was surprised that he was having so many seizures. She thought though that the fact he has a little cold and is teething could have lowered his seizure threshold, and the fact that he is making some developmental gains. Since his brain needs to make new connections and kinda re-route itself around the damaged area, she was thinking that it is possible that some of these connections are misfiring. I thought of that too, of course after I talked to Dr. Kuntz on Tues, so it was nice to get some feedback on this. Jacob had 5 seizures yesterday, and 3 today. They aren't lasting as long, so who knows....the ones today weren't until later this PM too.

As I was waiting for the shuttle to take me to the parking lot in the POURING rain, a lady began to talk to us. She asked how old Jacob was and I said 13 months. She said she would have probably guessed 3 months...I said I know! He's little! Then she said that he had the most beautiful shaped head...I had to laugh. I swear I was speechless at first, and then said, "Well actually he doesn't!" It was hilarious!!! You know, I really should have just said thank you!!! It was really funny....I have never been told that before :)

Michael's grandma, my ex mother-in-law, had a heart attack last night. She has blockage in all her arteries and in her heart, as well as shrinkage of her veins because of her diabetes. Jacob and I visited her today. She was transferred tonight to St. Mary's in Rochester, the same hospital Jacob stayed in, and will have surgery on Monday. It is a very scary time for the family. Please keep Mary in your prayers for a safe surgery and easy recovery.

I have a special request. There is a special miracle boy named Noah who is turning 1 on September 16th. He has Krabbes disease and is recovering from a cord blood transplant at Duke University in North Carolina. His family is asking for everyone to pray for healing on Noah's birthday. Please join this family in prayer. They have been through so much this year. Their faith in God and love for their son is remarkable and very evident in their journal posts. You can visit Noah at www.caringbridge.org/hi/noah.

Take care everyone and have a great weekend!!!

Karla

Wednesday, September 10, 2003 12:30 PM CDT
Hello everyone! We came back last night, and I was so tired, I didn't get a chance to write. We got into Rochester about 6:20. My mom arrived a few minutes later and we went into our room just long enough to go to the bathroom and feed Jacob before we went out to eat Chinese. Rochester has this most awesome Mongolian restaurant called Bon's Buffet. (Rubbing it in a little for Tracey!!!) As we walked in, I saw one of our friends, Matt Fennell, walk by! He went to sit down with his wife Tanya and I came up to them and asked what they were doing here! We were SO excited to see each other!!! God definitely puts people together I tell ya....a bunch of "coincidences" later, Matt and Tanya were there to eat, and so were we! Their son Ethan has cystic fibrosis and was in the NICU with Jacob. It was so great talking to them and did I mention they have awesome food???? (Trying to make Tracey jealous here!!! Love ya Tracey!)

We went back to the hotel and Devin and I went swimming while Grandma spoiled Jacob. Jacob needed to be sleep deprived and hungry, but what ended up happening is Mom and Grandma were more sleep deprived then he was!!! UGH We saw every hour, even every half hour on the clock! I woke Jacob up at 5:00, fed him and then we got ready and went to breakfast. We got there at 7:30 and he had a seizure as they were hooking him up. It is the most barbaric looking test, with leads glued onto his head. It looks like he was being hooked up to the electric chair, I swear. He just kept making eyes at the one nurse. He'd raise his eyebrows and everything! LOL After getting him hooked up, we sat in a recliner, turned the lights off and he fell asleep. Recorded that for a long time and then turned the lights on and woke him up. He had one small seizure that was recorded. They even had taped a video of it too. It is neat because everything was right on the computer screen together and then they were added to his medical records, so the doctor could pull up the info herself. Very cool. The whole test took 2 hours.

We walked around after that. I found a neat little mall area attached to the clinic. Dumb me has only been at Mayo for 1 /12 years, and never knew that there was another mall attached to the Kahler hotel there. I just thought it was the hotel entrance, so I never went through there. Holly told me about it....thanks Holly for helping dumb old me! LOL I knew about the other one attached to the subway there, but not that one. Anyway, we looked around for a while and then ate some soup from Salad Brothers...very yummy! We decided to make our way back upstairs and just check in, sit and do a puzzle or whatever, and so we were surprised when the nurse called us back 2 hours early. The EEG was available and Dr. Kuntz had read it already, so we went back and saw her. She thinks his seizures are focal or localized seizures coming from the brain damaged area. She was worried they could be infantile spasms, which would be very hard to treat, but at this time, they don't appear to be. She increased his Topamax, left his Phenobaritol as is, and I need to call back weekly to let her know how it is going. If they don't get better we will try another med.
Please pray that we can get these under control. She doesn't feel we need to worry TOO much yet seizures aren't good and there is a chance to snowball into prolonged seizures, and we don't want that. He did have one in front of her, so that was good she could see what they look like. She was impressed with his growth and that he was as cute as ever of course!

Devin had preschool today and Jacob and I went to Moms & More. Tonight, I am going out to eat with other moms with special needs kids, so that will be fun.

Take care!

Love, Karla

Monday, September 8, 2003 6:59 AM CDT
Good Morning!

We had some excitement over the weekend. Our cat Zoe died Saturday night/Sunday morning. A few weeks back, she started acting funny one night, but was better the next day. She had one other spell where she didn't look like she felt good, but then was better by morning. Friday, all she did was sleep on the bed. That night, she was laying by the front door when I went to bed and was still there in the morning. She had vomited and pooped down there, so I called the vet and brought her in. He couldn't tell what was wrong with her physically but suspected neurological problems and that she could have been having strokes. Testing to find out what was wrong cost way too much, so I just decided to see what happened and took her home. She just laid in a box the rest of the time and was dead when we woke up yesterday. The boys are SOOO sad. I feel pretty sad myself. It is amazing how attached you get.

On a happy note: Jacob is 13 months today!!! WOW I can't believe it has been a whole month since his birthday!!! He is still sleeping now, and has been snoring all night. Hope he's not getting a cold. Either that or he is like his dad. SNORES like crazy!!!

Here's a review of Jacob's progress:
He is wearing 6-9 and 12 month clothes in one piece outfits. If they are 2 piece, he can fit 3-6 month still. I put away all his small sleepers and he is in all 6-9 month medium sleepers. I also put away all of his newborn onesies, so we will be in mediums this fall and winter.
He finally grew out of his crib/size 0 shoes and is wearing size 1. It is hard to find shoes though that are soft enough for him or not to heavy to hurt his ankles. His feet get cold easily, so soon I will start putting shoes and slippers back on him regularly.

He wears size 2 diapers, but I don't think he will be in them too much longer, maybe another month or 2.

His head control is improving slowly. He can sit in my lap and totally support himself very well, but once he gets tired, his head control is the first thing that goes. I love holding him with his back against my chest. He loves to sit like that too. He looks like such a big boy!

He is lifting his head better while on his tummy. I am hoping by 18 months, he will have this skill mastered. I also need to be a little better about putting him on the floor too.

When he is excited, he gets his left arm going and kicks his legs a little too. He does this a lot when he is eating, especially when he is eating something he really likes :) He loves getting his diaper changed or just laying on his changing table too and moving around.

He is playing so much better with toys. If you put something in his hand, he automatically puts it in his mouth. He loves the rings with the rubber on them. He makes them squeak! LOL But he gets mad because he can't chew on it hard enough! He sat under the gym the other day and batted at his toys. He never has really done this so purposeful before. I cried of course! He is shaking his head so cute too, being funny. He was doing it last night and then would just smile at me. It was so funny.

He eats like crazy still. I really don't know how or where he puts it. He eats breakfast, usually fruit or yogurt, at 8:00 with his meds. and then nurses all day, with supper being around 8:00 with meds again. He loves yogurt, pudding, ice cream, bananas, and prunes. Good thing he likes prunes, because they are a big part of his diet!!!

We have enjoyed Jacob so much and it just gets better every day!

Saturday, he didn't have any seizures, but yesterday he had a few to make up for it. I can't wait to find out what we are going to do. Please keep us in your thoughts tomorrow when Jacob has his EEG. I will update his page when I get home.

Love, Karla

Friday, September 5, 2003 8:51 PM CDT
Another week has flown by!

Devin had a great first day at Head Start or as he said, "I had real fun Mom!" He had to tell me everything they did, what they ate, and sang a new song. I sang it with him, but of course it wasn't the way HIS teacher sings it, so mom is wrong. What do I know HUH? Not that I taught for the last 7 years or anything???? LOL

Sue, the Early Childhood teacher, came over yesterday, but Jacob didn't want to play. He had 2 seizures while she was here. He still is having them a few times a day. Tues is the EEG, so we will see what it shows. Mayo didn't send me an appt schedule, the lady said it was sitting on her desk...like that is going to help me??? They sent me one for the cancelled appt instead. Anyway, he needs to sleep for part of it and if he doesn't sleep, then they need to sedate him, which means no feeding him either. Lovely. I hope it all works out that he is tired and is still sleeping when I bring him there. But it will be fun with my mom coming with and staying over in the hotel with Devin, Jacob and I. Have a little sleepover :)

I have been feeding Jacob pudding and regular yogurt this week. He has had baby yogurt before, but I had been given lots of Yoplait yogurt, so I thought I'd try it. He loves it! You can't feed him fast enough! I thought that was great since it is a thicker quality and yet he doesn't gag. I even fed him 1/2 a jar of mixed veggies yesterday and he hates veggies.

Jacob has been doing this cute head shake. You can tell he is playing when he does it. It must feel funny :) You ask him "What are you doing?" and he'll do it even more! LOL

Take care everyone and have a great weekend!

Love, Karla

Wednesday, September 3, 2003 11:43 AM CDT
Hello everyone! It has been a long time since I updated! We had a great weekend camping. It was so quiet and relaxing, minus the bees that were bothering us. I hate this time of year with the bees. The kids had a fun time riding bikes, playing at the park, and of course making smores. It was nice just to relax and not worry about much.

Jacob has continued having seizures at least 2-4 a day. They aren't as bad as they were on the Keppra, but they are still very much there. We have an appt scheduled next Tues for an EEG and then the neurologist in the PM. Since we have to be there so early, we will stay over on Monday night. My mom is going to come too and have a sleep over with us at the hotel! :) I like to have people come with for my sanity. It helps a lot!

Michael started school yesterday. It was so nice and quiet around here without all the fighting between Michael and Devin...AWWWWW. He had a super day I guess and is very excited about being in 5th grade. Where did the time go???? I just can't believe he is so old already! He does still have a lot of innocence about him though, which I am happy about. So many kids his age seem to be so much rougher if you know what I mean.

Devin's Head Start teacher came over yesterday and Friday will be his first day in school. He is very excited! His teacher from the preschool down the road from us called today too and so we went over there to get paperwork and to see the classroom. I think he will have a blast. He will go Mon and Wed mornings there.

I have been thinking a lot about starting a support group in our area. There are 3 other moms I know that have special needs children and so I have asked them to come out to eat next Wed. I contacted the Birth to 3 program coordinators also and they will let other parents know about it as well. It should be fun. I just really need to make connections with others who understand. I have had a rough last few days again. It amazes me how I can be doing so well, and then one little thing triggers me to feel sad again. I have talked to others and they all say this cycle never truly ends, you just learn to accept that it will happen. It is so hard sometimes though....

Take care everyone and have a great day!!!

Friday, August 29, 2003 9:57 PM CDT
Good evening! We had a pretty good week overall. Wednesday we had Sue, the Early Childhood teacher come, and Thursday she came back again with the OT. Jacob has been working really hard for everyone lately and making some really nice gains. For example, he is recognizing their toys and what needs to be done to activate them. He laughed at a toy Sue brought too. It was hilarious. He seems as if he has matured again and is making many new connections in his brain. He sat in his chair for therapy on Thursday and was very content the entire time!

Jacob had long whispy Grandpa hair over his ears, so I cut them tonight! I have thought about doing it for a long time, but just couldn't do it, but I do have to say it looks better. Now we just need the top and sides to grow in more. I think that once he has some hair, his head will look better. He is really blond compared to birth. I taped his lock of hair into his baby book and saw the baggie of hair that was shaved when he had his first shunt surgery. WOW What a difference!! He basically had black hair! Just like Devin did :)

Jacob was taken off the Keppra and has had a few seizures, but they are mild again compared to what they were like on the Keppra. We were supposed to go back on Tues, but there wasn't any available EEG appts, so we will go back on the 9th instead. We have to be there at 7:30 AM, so I may just stay over the night before. We will have to see.

Jacob is starting to be more content laying on the floor, sitting in chair, laying on his boppy pillow, etc by himself. It is really nice. I just noticed it yesterday when he didn't start screaming right away and I was washing dishes. I got all panicky all of a sudden and thought, where did I lay him down? Then remembered he was on the floor. LOL I am not used to him being happy by himself!

Tonight I gave him his yogurt which is his absolute favorite. He had his arms swinging, especially his left, which is his strong side, and even had his legs kicking!!! He rarely kicks his legs, but he really was excited!!! Then he'd look right in my eyes, which doesn't happen much either because of his vision. His eyes even crossed a little like he was really trying to focus. I thought it was really cool!

School starts for Michael on Tues. Devin's Head Start teacher will come over that day too, and then he'll go to cluster, which is where all the kids in homebase come to school together for 3 1/2 hours. He is really excited! I used to teach Head Start, so I am thrilled he got in. Then starting the 8th, he will also go to preschool 1/2 mile down the road on Mondays and Wednesdays. I am so excited for him (and me! LOL) It will be so good for him to be with other kids.

Hope everyone has a great weekend! We are going camping this weekend with Kevin, Amy, and their boys. It should be lots of fun!

Love, Karla

Wednesday, August 27, 2003 1:34 PM CDT
Hello everyone!

I was thinking last night that there was something special that happened on August 26th, then I remembered that it was a year ago that we brought Jacob home for the first time! I told Michael about it and he said, "How do you remember all those dates???" I told him I was just a walking rolodex of information! LOL

The last few days, I have been thinking a lot about the 1 year anniversary of Jacob getting sick. It feels like such a long time ago, yet still so vivid in my mind. I can still remember all the sounds, smells, sights, etc of the hospital and all the intense feelings I had at different times over different situations. I look back at that time with lots of mixed feelings because it was such a horrible time, yet so much good came out of it as well, sometimes in the most unexpected ways. I was talking to some friends about it via email, and my friend Lori said "I would want to face this Karla, Jacob has proved the doctors wrong over and over again. This might be the anniversary when he was so so sick, but look where he is today and how far that little guy has come. Don't look at the anniversary date of his hospital stay as all bad. He is still here with us and that was just a minor set back but he made it through and he is a fighter and he will keep on fighting. Remember he is your son and he has to have the same stubborness that you have. LOL" Thanks Lori!

I want to thank Denyse for signing our guestbook. I want to tell everyone about how special this lady is to our family. She is the manager at Sears Portrait Studio and took our maternity pictures, as well as all of Jacob's pictures except for his first shoot. When you have a child with disabilities, you began to realize those things that you once thought as a normal part of your child's babyhood are so much different. With Jacob's head shape, it has made taking his picture a little more challenging. He isn't able to sit up yet, or even hold his head up while on his tummy for more than a few seconds. I hate when children with disabilities LOOK like they are disabled for pictures...you know, not capturing their TRUE spirit. However, Denyse has taken into account all those things and made us feel so special. We are reminded enough in our daily lives that he is different, yet whenever we have had pictures taken, we have been made to feel just how special he is and have been able to capture his true "Jakeyness."

I just got off the phone with the neurologist. I think it so nice that she actually calls me instead of relaying messages through a nurse. Anyway, she said we will stop the Keppra because in rare instances, they can actually induce seizures in kids....once again my boy is in that category! I just have to laugh. He is quite the kids I tell ya...LOL He will also have an EEG done next Tuesday before we see the dr.

As I sit here, Jacob is licking my arm. I find him to be so incredibly cute. We see his personality blooming in the smallest ways and enjoy him just the way God made him, goofy head and all :)

Love, Karla

Monday, August 25, 2003 9:57 PM CDT
Good Evening everyone!

Just a quick update on us here. Friday night and Sunday night Jacob had some bad seizures and then today he had 1 as well, so I called the doctor to see what to do. No one called me back right away as Mondays are Spina Bifida Clinic day which are horribly busy. I called again and talked to Deb finally, and she took the info to talk to Dr Kuntz and then scheduled an appt for next Tuesday for Jacob to see her. I really think that adding the other med is what has caused them to get worse instead of better.

Jacob had a great day. We are trying some stage 3 fruits to get him used to thicker food. He gags a lot, but if you give him really small bites, he does really well. I take the chunks out, but he seems to like it.

Our Birth to 3 coordinator brought over a Kimba seating system today which looks like a cross between a wheelchair and a stroller for Jacob to try out. A couple had donated it to lend to other families. It has a really nice over the shoulder harness that fits across his chest nicely, holding him upright. If it works out good for us, we are going to try to get a tray for it and also head supports, in hopes that he will be able to sit and play in it. I have really been pushing for something like this. Even though he is small, he still needs to experience the world sitting up.

PT is tomorrow, Early Childhood is Wed, OT is Thurs. Another busy week!

Love, Karla

Friday, August 22, 2003 8:58 PM CDT
Hello everyone! Once again, we had a very busy week full of PT, OT, and doctor appts. This time it was Michael and my turn to see the dr though! Michael had a wart that needed to be burned off. Poor kid, keeps getting this wart over and over on his forearm. The doctor froze it last week and got about half of it. Now we have to wait and see if the rest of it will disappear. I went to the doctor because my shoulder has been bugging me. It gets so sore and even radiates pain down to my elbow. I am going to see PT for a couple visits to see if that helps. That is, if I can fit it into my week! UGH My friend Amy watched Michael and Devin, and I took Jacob to show him off a little. All the nurses were coming up and asking how he was doing and oohing and aahing over him. It was really neat. I know people tend to do that to babies in general, but it is really nice when they do that to Jacob. Makes me feel good that they can see beyond the differences and think he is beautiful anyway.

Jacob is still having seizures despite the increase in his meds. I don't know what to think....they seem to be getting worse in some ways, better in others. I just hate this so bad. Now he is crying in between jerks and that scares me. Poor baby!!! I have to give the doctor an update next week and see what she thinks.

We are going to take it easy this weekend, getting stuff done around the house, and relaxing. Nothing too exciting!
Have a great weekend everyone and please sign my guestbook! I see many hits a day, yet not many messages!

Take care!

Love, Karla

Tuesday, August 19, 2003 11:09 AM CDT
Good Morning! Hope everyone is having a great week!

We are very excited about some nice gains Jacob is making again. This morning he held his head up while on his tummy for at least a minute. He is grabbing at toys when you stroke his hand with them. This morning, he was sitting up with the PT and dropped his ring, then felt around for it and picked it up again! Pretty impressive huh?

Jacob is wanting to roll over by himself, but can't quite completely figure it out. He gets his head going and tries so hard. If you put your hand on his back, he will go over right away. He has been doing that for a long time now, but the desire to roll on his own is getting greater, so I am guessing that should be happening within the next month or 2.

He is wearing mostly all 6-9 month clothes now, but has a few 12 month one piece outfits that fit him really well. I took out Devin's 12 month outfits and I can tell Jacob will fit into them really good. I like to stick with the one piece or a shirt that snaps with pants over it, mostly because I hate his back showing so much and hate having to pull his shirt down over and over. He doesn't have enough fluff to fill out his outfits yet either. He finally outgrew his crib shoes, and is now in between a size 0 and a size 1. He is in size 2 diapers very comfortably now.

We are working on thickening Jacob's food so he gets used to more texture. He loves his baby food fruits, but you'd think he was dying when we've tried mashed potatoes!!!! Oh well, it will take time! I gave him some water in a sippy cup the other night and he was so funny...he'd say HAAAAA HAAAA after every drink and then attack the cup for more!

We are not seeing much verbalizing yet. He used to say OOOHH a lot, but isn't doing that anymore. You can tell he does want to talk though, it just gets stuck in his throat, like he doesn't know how to let it go. Then all of a sudden, he lets out a big screech. It's funny! He is laughing more and more which is very cute. Holly could really get him to laugh when she was here!

I can't believe it has already been 11 days since his birthday! It feels really good to be 1!

Love, Karla

Sunday, August 17, 2003 4:24 PM CDT
Hello this Sunday! Not much going on around here. It is HOT HOT HOT outside! YUCK!!! Thank God for central air. I just do not do very good in the heat.

Yesterday, Michael and I went shopping for some school clothes. He didn't need much because he really hasn't outgrown many of his clothes and I don't see a point in continuously buying new stuff when he has lots of clothes still in good condition. He did need jeans though so we got more of them and a few t-shirts. While we were at Walmart, we were interviewed by a news channel about the child tax credit and what we were using it in or if we were saving it. I watched the 10 o'clock news, but it wasn't on there, so I am not sure if it was on at 6 and we missed it.

I sent Dave down to the Cornfest for chicken and corn last night since it was so hot and I didn't want to take Jacob out in that (nice excuse for me not wanting to be out in it either! LOL) The chicken and corn were AWESOME.

Today, Devin and I went out to get him some school clothes. He is starting preschool and Head Start. He finally admitted he was going, so that is good!

My sister Lista and her husband Dean gave Jacob a lilac bush for his birthday, so we planted that today as well. I thought that was such a neat idea!

Jacob has been really holding his toys in his hand finally. As soon as you touch his hand with it, he grabs it and puts it straight to his mouth! It is really cute!

Jacob is still sleeping, but will probably be up in a few minutes, so I should probably go and get some more work done around here.

Take care!

Karla

Friday, August 15, 2003 10:02 AM CDT
Good Morning! Thanks for all the kind words about our pictures! I absolutely LOVE them! They totally catch all his classic looks. I was hoping to capture who he really is and I think those pictures do that so very well! Theresa Smirud from Mainly Kids in La Crosse took those pictures. She has won many contests for her work.

Jacob started on Keppra last night for his seizures. He has been having breakthrough seizures for a couple weeks now and since we really want him weaned off the phenobarb, the dr. decided to add the Keppra. The bad part is it can cause severe mood swings, so I am hoping our happy, easy going baby stays happy and easy going, and does not turn into a screaming, unconsolable baby. I hate these parts so bad sometimes.

Jacob had PT on Tues and OT today. We are considering a seating system for Jacob so that he can sit more upright. We will go back to Mayo soon to see a seating consultant and I am hoping we can possibly get something worked out. My thinking is that he needs to be more upright, yet the typical baby equipment doesn't quite cut it....he loves his bouncy seat, but it reclines too much for upright seating, yet he doesn't have enough strength for the exersaucer. When he can sit in the feeder seat with the harnesses on, he has enough support that he can focus on head control and playing, whereas without the harnesses, he has to concentrate on both head and trunk control at the same time. I also think that just because he is small, it isn't a valid excuse not to get something because he is 1 now and needs to be working more muscles. We shall see what happens!!!

I received an email today about one of the balloons!

My name is Starla and I live in West Virginia. I found one of your balloons yesterday honoring your beautiful son's birthday. It was red and had a very lovely poem on it. I have briefly read your story of your son and I have been touched to tears. God Bless you and your wonderful son.

Starla

Here is what the card read.

Side 1:
One year ago today
God sent a special Angel
To grace this world everyday
his smiles are unending
his miracles evident in every way
His passion we see, his drive all consuming
The Dr's they said, he would never play
But Jacob the sweetest of miracles
has soared over what they all say
He grows stronger and stronger
and has turned one year old TODAY!
HAPPY BIRTHDAY JACOB DAVID!!

Side 2:
This balloon was released by The Mick Family of Yorktown, VA
on August 8th to celebrate proof of God's love and miracles. Please log onto www.caringbridge.org\wi/jacobdavid
and wish The sweetest little miracle and proof of God's love a
very happy 1st birthday!

Take care everyone!

love, Karla

Tuesday, August 12, 2003 4:20 PM CDT
Hello everyone! I have been slow on entering a new journal I know! My friend Holly and her daughter Maya (www.caringbridge.org/mi/mayam) came last Thursday and left today, so we have been busy! She was going to leave on Sunday, but I convinced her to stay, and then she was going to leave yesterday! LOL But she ran out of one med for Maya, so she had to leave today....I miss her already! It is so cool being able to talk to someone who totally understands what you are going through. We met in the Ronald Mc Donald House last fall and have emailed and talked over the phone numerous times. We got to know each other so much better since I left in Nov and it was so cool to have her stay so long with us. Maya loved the playroom downstairs. She latched onto a big Barney we had and so I let her take it home with her :) She is a sweetheart!

Saturday we had the big party. Holly and I got stuff ready and we were sitting down almost 2 hours before it started!!! I told her I need to hire her to help out around here! She was very good about getting Jacob to sleep too. We had a pinata for the kids and played another game with lots of prizes. Jacob fell asleep on my sister Sandi's lap, so the kids all got a turn to open his presents. They thought that was pretty cool! We had tacos for dinner, which everyone enjoyed, and then had cake and ice cream. Jacob banged in his cake for a little while which was very cute! He was getting too overstimulated though I think, so we sat down and nursed and he was better. We got lots of pics which I will post later.

Sunday, my brother Gary took us all out for breakfast. It was very YUMMY! I always like to go out for breakfast :) We sat around and visited afterwards and then my mom and Gary and his family left. Holly and I watched How to Lose a Guy in 10 Days (funniest movie I tell ya!)

Yesterday, Jacob had a doctor appt for his 1 year checkup. He weighed in at 13 lb 8 oz and 27 1/4 inches! He gained 1 1/2 lb in 1 1/2 months and grew an inch! We go back in a month. We went over to look at the pictures I had taken with Jacob and they turned out so beautiful! They are black and white and totally capture his spirit. The photographer is looking to enter one or more in a contest. I will post them too when I get them! After that, we went shopping a little and then last night Dave watched the kids so we could go to Sam's Club.

We had PT this morning. I also talked to the neurologist about Jacob having some break through seizures. We were hoping to get him off the phenobarbitol, but the day we were going to lower his dose, he started having some seizures. We are keeping a close eye on it, and if he has any at all, I am to call Mayo. UGH...it is things like this that keep you on your toes :(

Take care everyone!

Karla

Friday, August 8, 2003 11:37 PM CDT
Happy Birthday Jacob!

People have asked me if it seems like it has been a year. To be honest it feels like 5 years!

A year ago today, our little Jacob was born. Not that he was that little though, because at 4 weeks early, he was 8 lb 8.2 oz!!!
(Cool side note: he was 8 lb 8.2 oz on 8-8-02!)

Two weeks prior to his delivery, the doctors had done amnios to see if his lungs were developed enough to be born. They weren't, and so the third time, we just decided to deliver him. We spent the night before he was born in a hotel, along with Dave's mom, my mom, and sister Sandi, her husband Bill, and their son Matt.

We walked over to Methodist Hospital in the morning as they wanted us there by 7:30. Our pastor met us there as well as my two best friends Crystal and Amy. The normal prep was done, and Jacob was born at 9:14 AM. He was immediately brought into a special care room next door and we could hear him crying. He is the only one of my boys who cried loud after they were born! I knew then he was a fighter! Dave was able to go in with him. I also was given pictures of him right away and they taped them up on the drape in front of me.

After all the post surgery stuff, we were brought to the recovery room where Jacob was brought into us in the transport unit. I was able to touch him, but couldn't see him the great because of all the tubes. He was intubated because he was having a little problem breathing, but was extubated by that night. Our pastor baptized him.

Jacob then was taken over to St. Mary's to the NICU and I was put into a room. Dave later visited Jacob again that evening, and I went again the next day. It was hard being separated from him, but they had a tv monitor in my room which I could watch at all times.

Today, we had Jacob's birthday pictures taken and they are so cute! I will add them soon! We had our balloon release tonight after Dave got home from work. Some of the boys balloons went into the neighbor's tree! LOL We also had Jacob let go a balloon for Damien.

Tomorrow is his big birthday party!!! I will post all the details!!!

Love, Karla

Wednesday, August 6, 2003 11:40 PM CDT
Only 2 more days!!! Friday will be here before we know it! Here is a poem that I wrote for Jacob's birthday.

A sweet and wonderous surprise it was from the start
A new life in our family, an amazing love in my heart.

Plans and dreams were made as most parents do,
Plans for the future, exciting and new.

Then in a single moment things started to change,
The plans for our family were soon rearranged.

For something was wrong the doctor told us one night
Your son will be different, things will never be right.

And as I heard these words I felt a tremendous grief,
How could this be happening? Complete disbelief.

And so began our journey to places unknown,
Of worries, and fears and a love which had grown,

A love so fierce and devoted, and determined to see,
A child, a miracle, be the best he could be.

And so it was on a beautiful August morn,
That an angel sent from Heaven into my heart and soul was born.

An angel indeed, I instantly knew.
For on his back was proof of where angel wings once grew.

And love him I did, with all of my heart.
My Jacob, my son, meant to be from the start.

But we soon found out that our journey would change,
And life as we knew it, would soon rearrange.

For Jacob was sick and soon we heard too,
Something was wrong with his brain, not much we could do.

Except follow our hearts, our faith, and our God,
Who sent us dear Jacob from where angels do trod.

And soon we saw that amidst all the mess,
That God was in charge, He'd take care of the rest.

For God is our anchor, amidst all the strife,
For it was God who decided to give Jacob his life.

And so our dear Jacob continues to be,
A miracle, a fighter, a true destiny.

And while things won't be easy,
We choose to believe, that God will be with us and each skill he'll achieve

Will be part of a miracle, a plan from above,
For dear Jacob was sent to teach us all about love.

Happy Birthday Jacob!

UPDATE: We are close to 450 balloons being released! How awesome!!!

Here is a list of where the balloons will be coming from:

Wisconsin (of course!)
Minnesota
Illinois
Iowa
South Dakota
Illinois
Michigan
Ohio
Tennessee
North Carolina
South Carolina
Pennsylvania
Virginia
New Jersey
Rhode Island
Massachusetts
California
Oklahoma
Utah
Washington
Alabama
Canada
Australia
England

Take care everyone! I was thinking you could even cover the tags for the balloons with packaging tape. Then they'd stay dry!

Love, Karla

Tuesday, August 5, 2003 11:01 PM CDT
Thanks everyone for the wonderful response to the balloon release!!! How exciting! I am thinking if you used index cards with permanent marker to write his website address on and attach it to the balloon, even if it gets a little wet, it should be okay hopefully! Here is a list of where the balloons are coming from:

Wisconsin (of course!)
Minnesota
Illinois
Iowa
South Dakota
Illinois
Michigan
Ohio
Tennessee
North Carolina
South Carolina
Pennsylvania
Virginia
New Jersey
Rhode Island
Massachusetts
California
Oklahoma
Utah
Washington
Alabama
Canada
Australia
England

So how cool is that????? If I missed your state let me know! If you can, please take a picture of your balloon release and email or snail mail it to me. I think that would be so cool to add to Jacob's book! While you are doing the release, I think it would be a great time to talk to your children or think about yourself just how wonderful God has been in Jacob's life and how it has taught us all about love, caring, and compassion. God truly deserves all the glory in this.

Today is Dave's birthday! He took the day off and spent it fishing for the most part! The boys went with, but soon Devin was whining to go home, so I went out and picked him up at the boat landing and Michael and Dave went back out. We had pizza and watched a movie tonight. Jacob of course decided to show off tonight. He held a ring in his hand, putting it into his mouth over and over. He has held one before, but not without lots of help and guidance to his mouth. He also ate half a teething biscuit and actually had the chewing, eating, and swallowing motion!!! I just could not believe it. He got mad if I tried to take it away! He is so wired tonight. He has been banging his arm over and over, looking around and actually focusing more on my face. Pretty cool. He also has found that he has another arm which he thinks is really fun to play with. He will play pat-a-cake too if you do it for him. He bangs one arm on the other, but keeps his hand open, so it makes a clapping sound. Sometimes he will bang it himself a couple times, then gets a shy smile on his face. Crazy boy! It seems like things are finally starting to click a little more.

Take care everyone and will post again soon!

Love, Karla

Monday, August 4, 2003 9:15 PM CDT
UPDATE!!!!!

We met our goal of 365 balloons!!! Thanks everyone for helping make this happen!!! This is going to be so incredible!

We had a wonderful visit at Mayo! We had the NICU reunion yesterday. I only recognized a couple nurses. I told Dave either I was really out of it when we were there or we weren't there afterall and it was only a dream! LOL We saw Angelina, Ethan, and Gabe who were all Jacob's former cellmates, I mean roommates! LOL After the reunion, we headed upstairs to see Tom and Scott in the PICU. Tom is the Blue Power Ranger nurse. When Jacob was first admitted, Tom would always do Power Ranger moves on Devin. Devin said, "You aren't a Power Ranger! Where's your helmet???" And the next thing you know, here comes Tom in his Blue Flight Nurse uniform, carrying his flight helmet under his arm. I thought we were going to die laughing...we were all crying we were laughing so hard, Devin was laughing but no noise was coming out...it was great!!! Both Tom and Scott thought Jacob looked so great and were impressed with his smiles. Scott was the nurse who comforted me many times when the doctors were coming in telling me to make a decision if we wanted to continue treatment and that Jacob was not going to make it, that if he did he'd be a vegetable, or he'd die from pneumonia for sure. He was the one who'd warn me when a certain doctor was on the floor and making rounds, and would pass me the Kleenex or rub my back as I stood crying over Jacob's crib.

We then went across the street for supper with Dave, Tracey, and Angelina. It was then 7:30 and shift change had completed, so we went back to the PICU and saw Elisa, Devin's girlfriend. She made us promise we'd come back to see her! We brought birthday treats and shared a copy of the Happy Birthday photo collage. We then went back to the hotel and the boys went swimming. Jacob hates the pool, so we just hung out together!

Today, we had a geneticist appt. Dr. McGrann said we don't have to come back for 2 years!!! WOW!!! She is always SOOOO encouraging. She said that in her years of experience, she has learned that you never give up hope for children like Jacob, that they will definitely surprise you! And even though development may never be that of a "normal" child, everything they do accomplish becomes so much more special! Everything I shared with her, she was excited about. I like when doctors get it.....we know that Jacob's development is not typical, yet they know that we love him for who he is, for how ever long we are blessed to have him with us. It is nice not to be told over and over what is wrong with him...we are already fully aware of it, we live it every second of every day. Instead, we chose to celebrate him for who God made him to be.

We also saw a carseat specialist and she gave us some tips on choosing his next carseat. It was nice to have some professional opinions.

We then made some more birthday treat deliveries....Dr Kuntz the neurologist, Dr. Driscoll in physical medicine, Dr Nichols, a resident doctor who was in the NICU the day Jacob was born and has been an amazing support for us, and Carma the social worker. We saw some child life staff, and some doctors from infectious disease. We also saw another dr who was in the NICU last year and said, I remember you! Everyone we saw said that the PICU staff was showing off Jacob's pictures and talking about how great he looks! Our little boy was the talk of the hospital today!!!

On the way home, I was reflecting on how much the doctors and nurses and other hospital staff and all the families we met at the hospital and the Ronald McDonald House have become part of our lives, how I felt the need to bring birthday treats and pictures, spend some time visiting and saying thank you. These people have been there for us at some of the lowest times of our lives, have taken care of not just Jacob, but our entire family as well, and as a result, they have become part of our family as well, part of who Jacob is. They rejoice with us in happy times, and feel sad along with us in not such good times. It was a nice visit and one I will never forget.

Love, Karla

Saturday, August 2, 2003 7:55 PM CDT
Update: We are now at 196 balloons!!! If you want to release balloons in celebration of Jacob's birthday next Friday, August 8th, let me know! Please attach a tag with Jacob's website address on it, written in permanent marker. It will be neat to see how many people sign the guestbook saying they found his balloons!

Please check out the photo section. I added some new pictures of Jacob as a tribute to my special little guy!!!

We had a lazy day today, not doing too much. I ordered Jacob's cake and also went shopping for some party supplies.
We are headed for Rochester tomorrow for the NICU reunion and appts on Monday, so I washed and packed clothes as well.
I am looking forward to seeing some friends tomorrow and to bring birthday treats to all our favorite doctors and nurses.

Please continue to keep Lea and her family in your prayers as they go back home tomorrow. I am sure it is going to be very tough walking back into the house.

Love, Karla

Friday, August 1, 2003 12:42 PM CDT
UPDATE: We are up to 146 balloons being released right now. PLEASE let me know if you are going to release some as well....Jakey's birthday is in 1 week from today!!!! We are asking you to attach a tag on your balloon with Jacob's website address on it, written in permanent marker. It will be interesting to see if anyone finds them and signs our guestbook! Thanks!!

Damian's funeral was yesterday. It was a very hard day for everyone. I feel so sad for Lea. She did a wonderful job caring for Damian and never once complained to me with how hard it was. When Jacob was sick and we were told we had to decide if we wanted to continue treatment or start hospice, I remember the nauseating feeling just thinking about living without Jacob. Now Lea is experiencing it and it is heartbreaking.

We were also able to visit with Brittany and Tracey that we met from the Ronald McDonald House. You can visit Brittany at www.caringbridge.org/mn/brittanyross. They are also close to Lea, so they came down for the funeral. The boys and I went over to their hotel room and visited for a few hours and went out to eat with them as well. It was great seeing you guys!!! This was the first time they met Jacob since Jacob was in the hospital the whole time and never was able to stay at the Ronald McDonald House with us.

On Sunday, we are heading up to Rochester for a NICU reunion. It should be neat seeing everyone up there. We will stay over since Jacob has a genetics appt on Monday. I think she will be pleased with his growth. We are also hoping to have a carseat consult since Jacob is getting too long for his carseat, but doesn't have an adequate amount of trunk support I don't think, so we will see what she suggests.

Take care everyone!

Love, Karla

Monday, July 28, 2003 9:29 PM CDT
We received some very sad news tonight. Our friend Lea lost her son Damien on Saturday from pneumonia. Damien was in the NICU with Jacob, then was transferred to the PICU where he stayed until April. He then was transferred to a hospital in Green Bay where he stayed for about 2 months. He turned 1 the end of June. We spent so much time together in the PICU and the Ronald Mc Donald House. We had a wonderful visit with them July 5th and Damien looked so incredibly good. He was all smiles and flashing those cute little teeth. He'd sit up and scoot his butt around in a circle to get all the toys within his reach. We went for a walk and the boys all fell asleep before I could take a picture of them together....I am so sad for Lea. Please send your prayers to Lea and her family as they go through this horrible time.

Jacob got his 2nd tooth today! He has been a very crabby baby, but tonight he decided to give us some belly laughs like I have never heard from him. Of course it was while I was crying so incredibly hard. I think our angel Damien was helping us out a little. God bless his little soul....

Love, Karla

Saturday, July 26, 2003 9:12 PM CDT
Hello everyone! It has been a long time since I updated. We had another busy week. Monday, Michael had a game. Tuesday, PT came over and we went to La Leche League that night. It is always fun getting together with other moms, but hard sometimes as well. There are quite a few babies the same age as Jacob, and their moms were talking about them pulling themselves up and walking. While I understand that everyone has the right to talk and brag about their kids, it is hard to listen to it sometimes, because I really don't feel like I fit into that conversation. Wednesday, the OT came over and Jacob was in no mood to play at all. I hope it goes smoother next week! My old co-teacher came over on Wed as well to visit. It was nice catching up on "stuff." Wednesday night was another game. Thursday, my aunt Kathy and her girl Deanna and Janelle came for a visit. Friday, we spent the morning in the WIC office and finally got out of there so we could go home and pack. We are spending the weekend at my sister Sandi's house for Matt's birthday party. We went to the Mall of America today and brought the boys to Camp Snoopy. They both had a blast. Michael even went on the roller coaster twice and the Log Chute twice. It's hard to know if he is really ready to go on it or if he just thinks he is. He didn't puke, so that's good! He had lots of fun! Devin loves the frog jumper. Jacob did very well, but was ready to go at the end.
Jacob has had a few spells which I am trying to decide if they are seizure related. I have seen 3 today and a few in the last couple of days. I will call Mayo on Monday for sure and see what they think. He looks to the right really quick, and it has a rhythm to it. He seems to be aware though as it is going on so I am not sure what it is.

Please let me know if you are going to release balloons for Jacob's birthday. Thanks everyone!

Love, Karla

Tuesday, July 22, 2003 9:18 AM CDT
Hello everyone!!!

WE HAVE A TOOTH!!!! It broke through last night :) I noticed a white spot on Saturday, then yesterday, I could see the skin was starting to break open a little. I rubbed his gums and it started bleeding a little. Last night, at Michael's baseball game, Jacob was fussing, so I rubbed his gums for a long time and it popped through as I was rubbing it! I can't wait to see what it looks like when it comes all the way in :)

We had a really nice weekend. A man and his son from Dave's work, and another friend of Dave's from work, came over Saturday and built a climber for the boys. It has a tower, monkey bars, "rock" climbing wall, swings, slide, and hanging bars on it. It also has a little spy glass and steering wheel too. They love it.

Please remember to sign Jacob's guestbook if you are want to participate in the balloon release for his birthday. Just let me know how many you want to release!

Love, Karla and Jacob, aka Mr Tooth

Thursday, July 17, 2003 9:24 PM CDT
Today I went out and started buying stuff for Jacob's party. I found some really cute 1st birthday stuff, along with orange and yellow streamers. So since Jacob can see orange, red, and yellow best, that is what I am decorating with. I am excited!

I have been trying to figure out something special to do for his birthday and so far I have 2 things that are pretty neat. A person I email with is going to make a DVD of pictures of Jacob's first year set to music. I will wait until after his first birthday, so I can get those images in too.

The other idea came from my friend Deanna. She suggested having a balloon release....365 balloons celebrating each day of his life. I think that is a phenomenal idea. BUT I need your help! I was thinking that it would be extremely neat to be able to celebrate with each of you that read his site as well. So many of you are from all over the US, even some in other countries,and obviously won't be able to make it to his party, but will be here in spirit. I was thinking if you want to participate, please sign Jacob's guestbook with the number of balloons you are going to release. Our goal is to have 365. Because of possible latex allergy, Jacob will not ever be able to play with latex balloons, so I also thought this would be kinda neat to still give him his balloons in a special way.

Let me know what you think!

Karla

Wednesday, July 16, 2003 4:17 PM CDT
Good afternoon!

We had a very nice visit to Mayo. My niece Kelly met us in the lobby. We started our appts at 10:30. We saw the nurse coordinator, Deb, first. She thought Jacob looked awesome. She said he looks so much bigger. Next, we saw Dr. Driscoll in PMR. She was very excited with the progress Jacob is making. He showed her all his tricks which I was excited about. Sometimes I tell them something and Jacob absolutely refuses to do it, so I was glad he put on a good show!

We went for lunch and then went over to St Mary's to see everyone in the PICU. Devin's favorite nurse, Tom, the Blue Power Ranger, was there, so he was excited! Everyone thought Jacob looked so good!

We had our visit with Dr. Kuntz, the neurologist next. She was very pleased with everything he is doing, that at least we are seeing some progress. She measured his head and said it has grown a little over a cm, which is very slow, thus indicating what we already know. Jacob had a tremendous trauma to his brain, not only the brain damage caused inutero, but also the meningitis and ventriculitis.

She asked me how I was doing, and I said I am doing very well overall. I said that as Jacob gets older, it is hard sometimes seeing other babies his age, knowing that he isn't developing like them. I said when I am with him at home, I don't notice or think of it as much as when I am around other babies. I also talked about the fact that so much of what has always been said indicated Jacob was not going to make it, that if he did, he'd never amount to anything, but chances are, he would die. She said honestly she herself thought Jacob would die. She said there is just something about our son that is incredible. He is such a little fighter!!! She also said that from what she sees now, infection being under control or gone (they will never be able to say with absolute certainty it is gone, as weird as that sounds) airway seems to be fine, the breathe, suck, swallow is present and obviously working well for him since he is a little piggy, and his seizures are under control, that it is very safe to say, Jacob is not in imminent danger of sudden death. Of course, with the shunt we have the possibility of infection. She said that it is still important to remember that Jacob's development is going to be very delayed, that reality is still reality, but Jacob is doing the best she could have ever possibly hoped for given the amount of damage to his brain. I looked at his CT scans again, and it appears that the lower part of his brain is relatively "okay" but as you look higher up to the top of the brain, that is where there is large cysts right in the middle of the brain. There is brain tissue around the outside, but the middle is basically all fluid filled. We also noted that the left side of his brain is more damaged in one area, thus explaining why his right arm isn't as functioning.

She shared some very encouraging and sympathetic words with me. I knew I liked her before, but I really know I like her now. It was an amazing conversation. She praised me for doing such a wonderful job with Jacob and credited me for the reason Jacob is doing so good. She told me that first I had to get used to the fact that the baby I was carrying had a severe birth defect, then had to deal with not only finding out he had severe brain damage, but a serious infection on top of it. She said that most people have a hard time coping with one thing, nonetheless 3 major, major issues. She told me that I am coping instead of crumbling and now that Jacob is relatively stable, it is time for me to sit back and heal. It has been one hell of a year. And she also said that it is good for me to feel the way I feel when I feel it. None of this is easy, but everyone is there for us whenever we need to talk. I am so impressed with her, I can't even begin to tell you. She is amazing.

We talked so long that we weren't able to see Social Services. Next we saw the Developmental specialist. Our favorite resident dr, Dr. Nichols, was with him, so she came in to assess Jacob, since he's her favorite patient! She was in the NICU the day Jacob was born and throughout all this has been there for us. Jacob refused to do anything for them, but did it for me. LOL Dr. Voight said, "He sure likes his mama!!!" Jacob is developmentally at a 1-2 month level for motor skills and 4 months for social skills. We finally got out well after 5:00.

We found a really cool hotel with a waterpark. It was a suite, with a full kitchen. living room, and separate bedroom. The boys had a blast swimming.

Tuesday, we spent the morning shopping, went out to eat, then stopped at the Ronald Mc Donald House to drop off a huge grocery sack full of poptabs and 2 other ziploc bags full. Michael's class had collected them. They had a small carnival going on there that a youth group sponsored, so the boys got lots of candy and toys.

We waited 1 1/2 hours to see Dr. Raffel yesterday afternoon. He was very pleasant and friendly, said we didn't need to mess with the shunt since it was working so good right now. He apologized for everything that has happened with his head, and I totally understand that the situation wasn't good any way you look at it. Excess fluid doesn't belong in there, yet you need brain growth to make the head grow. So what happened, happened. He finally realized that Jacob needed to be able to lay on the back of his head better, and said we should go back to OT to re-evaluate possible ways to encourage him to lay on it better. I have only mentioned this...hmmmmm.....maybe 20 times now! LOL I think though that he finally is realizing that no, this isn't an ideal situation, but yet we are dealing with it, and going to love Jacob and do the best for him no matter what. He shook my hand again and I didn't have any reason to trip him on the way out! LOL

Overall, we had great visits, had lots of fun staying at the hotel and swimming. Nice to be back home though! We are going back on August 3rd for the NICU reunion and the 4th we see Genetics, talk to the OT, and possibly see someone about carseat issues since Jacob is getting bigger and doesn't have the best head and trunk control.

Take care!

Love, Karla

Wednesday, July 16, 2003 4:17 PM CDT
Good afternoon!

We had a very nice visit to Mayo. Monday, we started our appts at 10:30. We saw the nurse coordinator, Deb, first. She thought Jacob looked awesome. She said he looks so much bigger. Next, we saw Dr. Driscoll in PMR. She was very excited with the progress Jacob is making. He showed her all his tricks which I was excited about. Sometimes I tell them something and Jacob absolutely refuses to do it, so I was glad he put on a good show!

We went for lunch and went over to St Mary's to see everyone in the PICU. Devin's favorite nurse, Tom, the Blue Power Ranger, was there, so he was excited! Everyone thought Jacob looked so good!

We had our visit with Dr. Kuntz, the neurologist next. She was very pleased with everything he is doing, that at least we are seeing some progress. She measured his head and said it has grown a little over a cm, which is very slow, thus indicating what we already know. Jacob had a tremendous trauma to his brain, not only the brain damage caused inutero, but also the meningitis and ventriculitis.

She asked me how I was doing, and I said I am doing very well overall. I said that as Jacob gets older, it is hard sometimes seeing other babies his age, knowing that he isn't developing like them. I said when I am with him at home, I don't notice or think of it as much as when I am around other babies. I also talked about the fact that so much of what has always been said indicated Jacob was not going to make it, that if he did, he'd never amount to anything, but chances are, he would die. She said honestly she herself thought Jacob would die. She said there is just something about our son that is incredible. He is such a little fighter!!! She also said that from what she sees now, infection being under control or gone (they will never be able to say with absolute certainty it is gone, as weird as that sounds) airway seems to be fine, the breathe, suck, swallow is present and obviously working well for him since he is a little piggy, and his seizures are under control, that it is very safe to say, Jacob is not in imminent danger of sudden death. Of course, with the shunt we have the possibility of infection. She said that it is still important to remember that Jacob's development is going to be very delayed, that reality is still reality, but Jacob is doing the best she could have ever possibly hoped for given the amount of damage to his brain. I looked at his CT scans again, and it appears that the lower part of his brain is relatively "okay" but as you look higher up to the top of the brain, that is where there is large cysts right in the middle of the brain. There is brain tissue around the outside, but the middle is basically all fluid filled. We also noted that the left side of his brain is more damaged in one area, thus explaining why his right arm isn't as functioning.

She shared some very encouraging and sympathetic words with me. I knew I liked her before, but I really know I like her now. It was an amazing conversation. She praised me for doing such a wonderful job with Jacob and credited me for the reason Jacob is doing so good. She told me that first I had to get used to the fact that the baby I was carrying had a severe birth defect, then had to deal with not only finding out he had severe brain damage, but a serious infection on top of it. She said that most people have a hard time coping with one thing, nonetheless 3 major, major issues. She told me that I am coping instead of crumbling and now that Jacob is relatively stable, it is time for me to sit back and heal. It has been one hell of a year. And she also said that it is good for me to feel the way I feel when I feel it. None of this is easy, but everyone is there for us whenever we need to talk. I am so impressed with her, I can't even begin to tell you. She is amazing.

We talked so long that we weren't able to see Social Services. Next we saw the Developmental specialist. Our favorite resident dr, Dr. Nichols, was with him, so she came in to assess Jacob, since he's her favorite patient! She was in the NICU the day Jacob was born and throughout all this has been there for us. Jacob refused to do anything for them, but did it for me. LOL Dr. Voight said, "He sure likes his mama!!!" Jacob is developmentally at a 1-2 month level for motor skills and 4 months for social skills.

We saw Dr. Raffel yesterday afternoon. He was very pleasant and friendly, said we didn't need to mess with the shunt since it was working so good right now.

Overall, we had great visits, had lots of fun staying at the hotel and swimming. Nice to be back home though! We are going back on August 3rd for the NICU reunion and the 4th we see Genetics, talk to the OT, and possibly see someone about carseat issues since Jacob is getting bigger and doesn't have the best head and trunk control.

Take care!

Love, Karla

Sunday, July 13, 2003 1:46 PM CDT
Good afternoon everyone! It has been too long since I last wrote! This week has been busy...mostly busy with 2 boys fighting! UGH I get so sick of it after awhile. I took them to the library 2 days in a row just so they had to be quiet! LOL Michael does stuff to get Devin going, Devin does stuff to make Michael mad....round and round and round. Then there are those moments where they play so well with each other and truly love each other, thank GOD! LOL

Jacob had OT on Friday. He seemed to only be able to really concentrate on one skill at a time. I found it interesting at first, then realized that Nancy was introducing some new toys, so I wonder if that was the reason. For example, he was having a hard time holding up his head and playing with the toy, but if I laid him down or held him with more support, he was very excited about the toy. It was interesting. Or he'd get really excited about the toy and then draw his muscles up really tight in his hands and arms.

Yesterday, I went out for a few hours shopping and got my hair cut and highlighted. It's nice getting out for a while without kids. Nice little break!

We went to church this morning. Jacob loves the music. We had lots of people tell us how good he is looking!

We go to Mayo tomorrow for Spina Bifida clinic. We see the nurse coordinator, Deb, PMR (Physical Medicine and Rehabilitation,) Neurology, Social Services, and the Developmental Specialist. Tuesday, we see the neurosurgeon and plastic surgeon together for a consult. Please pray for my sanity!!! I think I will need it on Tuesday!!!! LOL I am looking forward to going. It is nice to see everyone, especially to show off some of his new skills. We will stay over at a hotel, unless Ronald McDonald would miraculously have a room open! Definitely not counting on that happening. It will be fun to let the kids swim. My niece Kelly, who is also Jacob's Godmother, is going to come with to help with the kids and to see what it's like at Mayo. I think it will be lots of fun for all of us. This is Jacob's first overnight in Rochester not staying in the hospital! :) Please say prayers that everything is still going great with Jacob, and I will update everyone on our appts when I get back. Until then, go check out the pictures of our cutie patootie!

Love, Karla

Tuesday, July 8, 2003 11:17 AM CDT
HAPPY 11 MONTH BIRTHDAY JACOB!!!!!! One more month to the big day!!!

Jacob has made some nice progress this month. He is now wearing a lot of 6-9 month clothes, even a few 12 month onesie outfits. He has basically grown out of all his 0-3 month clothes, and a lot of his 3-6 month clothes. He is FINALLY wearing sleepers that have been hanging in his closet since he was born. He can finally fit that sleeper that you brought for him in the hospital Patty and Penny! LOL He still wears size 1 diapers, but I have been considering size 2 because he is wetting through some mornings.

Jacob can now bang his hand and play with his crinkle book. He likes to wear a wrist rattle and shake that too. He can bang on a drum that the Early Childhood teacher has too. He is starting to hold rings in his hands and put them to his mouth.

Jacob likes to grab at my mouth and have me bite his fingers. He uses primarily his left arm and hand, but his right hand and arm are getting stronger too. When I hold him, he'll look up at me occasionally, as if to say, "GIVE ME A BIG KISS!!" He will give open mouth kisses back to you...nice and slobbery!!!

Jacob is extending his legs outward, not just drawing them upwards. He is getting more bulk to his thigh muscles. He even has a couple of fat creases!!! He is able to extend his legs outward when I stand him up. He is not putting weight on his legs yet, but they are stretched out anyway! We have seen more movement of his feet and toes recently, at least 5 times a day. His feet aren't as purple anymore, so I think he is getting more circulation to that area as well. His head and trunk control has increased incredibly! I can sit him on my lap with little support. He will often pull his head up if I cradle him too much.

Jacob is getting a lot of hair on the pointy part of his head! It now extends over his fontanel. He has wild wispy hair over his ears that I am contemplating cutting. It curls up somewhat, so I think I may let it grow a little more :)

Jacob watched Barney for an hour today! I think he loved the music, but I did notice that the movement and colors would catch his eye every now and then and he'd stare at the tv. I think he saw it! I am thinking about getting some Wiggles videos since they wear bright colored shirts.

Jacob is moving into one solid nap in the middle of the day. He sleeps from 2-5 hours at a time!!! He also continues sleeping through the night, going down around 10:30-11:00 and sleeping until 6:30 or 7:00, nursing and going back to sleep until 8:30. He has let me put him down with his Nuk and music the last week now and he has fallen asleep on his own! All of a sudden, he likes his Nuk again. He liked it for a while, then started gagging on it, now he loves it again.

Jacob nurses 7-10 times a day and also loves his food! We were giving him supplements of breastmilk with fortifier, but he has started gaining more weight and eats well, so I don't do it very often anymore. He loves bananas the best, followed by his baby yogurt. He gets very mad if he doesn't get fed fast enough and especially mad when it is all gone. He loves his food! He doesn't care much for vegetables, just sweet potatoes. I am going to try some other veggies again.

Jacob continues to be a very good natured, happy boy. He smiles all the time, never cries unless there's a reason, and is getting more personality about him every day. He definitely has preferences on how he likes things and who is holding him. I like to see his little temper tantrums. It means he is in there, and is developing likes and dislikes.

Please wish Jacob a Happy Birthday! We are so happy to make it this far!

Love, Karla

Saturday, July 5, 2003 2:26 PM CDT
Hope everyone had a great 4th of July! Michael went with his dad, but the rest of us spent the evening down at Riverfest in La Crosse. We first put our chairs out so we could get a place where we could actually see the fireworks without trees in the way, and then got some supper. They had various events going on. We watched a hypnotist for a while and a tiger show. Devin went in a bounce house and rode on the train. Jacob loved all the action and noise. I would think he'd be too overwhelmed, but he loves the excitement. All I can say is I was glad when the sun went down....can you say SWEAT???? There was a great fireworks display as always. Jacob was quite fascinated overall I think!

Today, we went and saw some friends of our from the Ronald McDonald House, Lea, Dylan, and her twins, Patrick and Damien. They were staying at their grandparents here in Onalaska for the weekend. Damien and Jacob were in the NICU together and then in the PICU together too! Dylan, Devin, and Michael were best buddies when we were in the hospital. Lea would take my boys back with her to RMH to play, took them to the movie, or just when she'd go down the hall for something. We'd do the same for Dylan. He went out to eat with us, we'd give them a ride since they didn't have a car, and the boys would have sleepovers. Lea and I really connected with both of us having babies in the hospital and doing a majority of the care on our own. I was lucky to have Dave come on the weekends. Her husband is in the Navy, so she was on her own. It was so great to see them again. It is amazing how close we have become with so many of our RMH family! Damien looks absolutely wonderful! And I can't believe how big they have all gotten!

Jacob is fast approaching his 11 month birthday. I can't believe it! I still am looking for some good ideas for his party. I am sure there are some of you out there reading his journal that must have SOME good ideas! We are thinking of having friends and family over for a meal, cake, ice cream, etc. but I want to incorporate something neat for this extra special occasion!!! Let me know what you all think!!!

Love, Karla

Wednesday, July 2, 2003 1:50 PM CDT
Good afternoon everyone! We've had a nice past couple of days. Jacob decided yesterday to give mama some really cute belly laughs. It is so funny because he does the whole facial expression of a laugh, but he usually can't let it out. Yesterday, he was laughing really cute. I think he knew I needed that :) He was grabbing at my mouth a lot too. He was really playing with me. Such a sweetheart!

PT came over yesterday. Jacob did really well, but after she left he crashed. It might not look like he's doing a lot, but it is really hard work for him, because he usually sleeps really hard afterwards. I was talking to Julie about trying to find some activities that Jacob likes. He doesn't care about toys yet, will only swing for 5-10 minutes, doesn't like to lay on the floor by himself, but will sit in his bouncy seat fairly well. Otherwise, he wants to be held all the time that he is awake. It is hard to get anything done when he is awake. And not that I don't like holding him, but I can't hold him all the time either. I just wish I could find something he really likes. Maybe with time....

Tonight, Michael has another baseball game. We are planning on going to Riverfest in La Crosse in the next few days as well.

Take care! Thanks for all the encouraging messages in the guestbook!

Love, Karla

Monday, June 30, 2003 7:22 PM CDT
Hello everyone! We are all doing great. OT and Early Childhood came out on Friday with the lightbox. It came from the School for the Blind and Visually Impaired. Basically, it is a lap-sized screen that lights up. With it came many toys to illuminate basically, to allow him to see them better and begin interacting with them. There are various shapes, stringing beads, cups, a face, and larger shapes, all made out of an acrylic type material and all different colors. When placed on the light, they are brighter and somewhat transparent. We also got some black stencil type cutouts to do black on white. Overall, it is cool. Jacob though could have cared less about the whole thing. It is frustrating at times because we try to provide activities or things that will help him grow and learn, but then when we actually do them, he isn't interested or it seems as if he isn't even developmentally close to doing them. I was a little disheartened on Friday as the 3 of us tried different things to try to get him to look at the lightbox and all he wanted to do was chew on that hand and arm of his. When you look at him, it appears as if he is looking around. There isn't any obvious assumption that he is blind, yet in reality it is like he is, because of his ability to process what he sees. When I really have paid more attention to what he is able to do, I notice that most of his smiles and reactions aren't because he sees you smile at him, it is because he hears you talk to him. However, I do notice him looking at us in the face and even searching for us at times, so I think there is some processing and vision there. It can be so hard at times though because reality is staring us square in the face again. There is so much involved with Jacob's disabilities, kind of like one thing leads to another kind of thing. Sometimes I wish I knew what the future holds, then other times I am glad that I don't know. It is like I need to be realistic enough to know that some skills or things are not going to happen, yet hopeful enough to expect him to succeed. I just need to focus on one day at a time, but sometimes it can be so hard. Like for example, the other day I was in Walmart, and the clerk starts asking if Jacob was sleeping. I said no. She said, well he looks like he is because he's not moving too much in there! How old is he? And while I know she wasn't trying to be rude or anything, it just really struck me. I get so sick of people making comments about how little he is, or that he isn't doing things, like what right does anyone have to make those comments? And why should I feel like I should explain to people that things are wrong with him??? That gets very old very fast.

Yesterday, we had a visit from my sister Lista, her husband, and two of her kids. They had bought a boat in the area, so they stopped by. It was nice to see them!

Last night, Devin was holding Jacob and doing all the silly Devin talk to him. Jacob loves when Devin does this. Devin told me his arm was getting sore, so I took Jacob. He started crying and crying. I told Devin to start talking to him again and he stopped crying!!! It was so funny. He didn't want mama, he wanted to play with Devin! It is things like this that remind me that Jacob is really "in there." That even though physically he may not be able to do much, and mentally he is limited, he still is very aware of people and things around him and that he has likes and dislikes. It reminds me of the whole quality of life talks we had with many of the doctors. Some felt that unless Jacob was "normal" it wasn't worth it in their eyes to continue treatment. That things would be too tough for him and that I needed to think of what it would do to us and our boys. As hard as it is knowing things aren't going to ever be "normal," I guess I choose to think about quality of life differently than that. Love, affection, and devotion speak volumes to me. And who am I to say Jacob's quality of life is poor? One look at him, and that SMILE, will tell you Jacob thinks his quality of life is pretty darn good!

Michael had a baseball game tonight. Amy and her boys came to watch him. They did okay, still haven't won a game, but they are improving and having fun. That is what matters. I think the boys need to take a bath tonight and I need to veg out on the couch! :)

Take care everyone and please remember to sign my guestbook. It is encouraging knowing that people are out there reading what I write everyday.

Love, Karla

Thursday, June 26, 2003 6:40 PM CDT
Hello everyone! Thought I'd let you know how my procedure went. I registered this morning and then was brought up to the floor. They started an IV and brought me into the procedure room. They gave me my IV anesthesia and it started working right away. I remember the nurse spraying the numbing anesthesia in my mouth and feeling like I was coughing, them saying it's okay, and that is all I remember. I was out. I then remember asking them if they'd done anything yet and they said they were done! Next thing I know Dave was in there. I kept falling back to sleep, waking up for a minute, and going right back out. Around 10, they brought me into a room where I stayed until 3:00. I got lunch once I was ready to swallow and then got a bag of IV fluids. I also had a CT scan with contrast dye and a chest x-ray. I am not sore at all, just a little scratchy throat, but no pain when I swallow at all. The dr said everything looked good. There was a small white spot he saw, but he wasn't concerned. I am glad the dr. is being thorough. I will go back next week for a follow-up appt.

Jacob was charming all the nurses today. He was laying in bed with me looking adorable and smiley as always! I think he is starting to make some connections. He has a book with the crinkly sound in it which he LOVES. Today, Dave was holding him with his book. Everytime Jacob would swing his arm, he'd crinkle the book. He was getting SO excited, knowing he was doing it! He was doing it all day long. He loves when you sing to him too. If he is crying or fussy, all you have to do is sing "Baby Bumblebee" and he stops instantly. Last night, I was singing Jesus Loves Me to him and he'd swing his left arm around as if he was dancing. He was smiling so big. If I'd sing another song, he'd smile, but not swing his arm. I'd sing Jesus Loves Me again and he'd start swinging his arm again! It was so funny!

Tomorrow OT comes and she is bringing his light box with her! I can't wait to see how it works!

Take care!

Love, Karla

Wednesday, June 25, 2003 10:00 PM CDT
Just a quick note to let you know that I am going to be having a bronchoscopy tomorrow morning at 8:15. They will put a tube down into my airway to see what the possible cause of my bleeding was when I was coughing up blood a month ago. I am less than thrilled about this....darn right scared to death. I will be sedated and have some anesthesia in my throat as well. I will probably be pretty sore for a few days. I will spend a few hours in the hospital and come home. I'll let you know how it goes when I get a chance!

Love, Karla

Sunday, June 22, 2003 4:24 PM CDT
Hello everyone!

I totally forgot to tell you all about the Loggers baseball game the other night. Thrivent, which gave us $5000 in matching funds for the benefit, was sponsoring the game on Tues. They had a picnic before the game. We then walked over to the ballpark and Dave threw out the first pitch. He didn't do too bad! :) He got to keep the ball too, so that was cool, and he got a couple signatures on it as well. The game was fun, pretty entertaining with little shows and goofy stuff between innings. We were presented with a fake check during the game too and the announcer explained about Jacob's conditions. Everyone was cheering and it was really cool. Jacob was so fascinated with the whole game. He loves noise and excitement, which really surprises me because a lot of special needs kids are super sensitive and overstimulated by too much noise. The only thing he doesn't like is Walmart. I swear he screams everytime we are in there lately!

Friday morning OT came over. Nancy had him trying to hold some links in his hands. He was sitting in his booster seat with the tray on it and she was holding his hand, having him bang the link on the tray. He would go, "OOOH! OOOH!!!" over and over. He thought it was so cool! Then she'd said, "You try!" and sometimes he'd bang it too and we'd cheer. It was so cool to watch him think, you could just see the wheels turning.

La Leche League had a rummage sale fundraiser on Friday at my friend Michelle's house, so we went over and checked it out. Before I knew it, Michael was in her pool with my friend Angie's kids and Matthew, Michelle's son. Devin joined them for a little while too. I was going grocery shopping next, so Angie and Michelle said they'd watch the kids while I went, even Jacob. It was so nice shopping without kids bugging the heck out of me and a baby screaming. I was in and out within an hour, record time. Thanks so much guys for watching them for me!

Friday night, I took the boys to the Hulk movie. They thought it was cool, I thought it was way too far out for my liking, but good at the same time too. The boys loved it of course.

Saturday and Sunday, Michael had a baseball tournament. He had a couple runs and pitched again. Saturday night, Dave and I went to a birthday party for Jacob's Godfather, Kevin. Amy planned a surprise for him. We rode a limo bus up to a casino and ate supper there, then gambled for a little while, and came back home. It was lots of fun! Michael went with his dad, Grandma Lorraine came over to watch Devin, and a pedriatric nurse from our church watched Jacob. Nancy loved watching him and he was a very happy guy too. It was nice having him with someone I could trust with me being gone for 9 hours.

Dave and his friend Todd took the boys to the Airfest today. The Blue Angels were there. They are on their way home now and we're going to grill out and watch a movie tonight. It was heavenly having the boys gone and Jacob sleeping so I could clean carpets and mop the floor today without having kids who just "NEED" to go across the wet floor, plus have a little me time.

I hope everyone has a great rest of the weekend and I will update again soon!

Love, Karla

Thursday, June 19, 2003 7:45 PM CDT
Jacob had a great appt. today! He weighed in at 12 lb even and measured 26 1/4 inches! He is up 8 oz and 3/4 of an inch in a month! Dr. Brumm said we hit a huge milestone today and asked if I was giving him growth hormone or something! :) I am so glad she's satisfied too!

OT comes tomorrow morning. Nancy is very nice and easy to work with. We are hoping to get Jacob holding and mouthing toys. His right hand is finally opening more and his left hand he wiggles the fingers a lot, plus all the constant chewing on his hands. Today he has been chewing on his thumb. He's so darn CUTE!

Take care everyone and make sure you check out his new pictures!

Love, Karla

Wednesday, June 18, 2003 10:04 PM CDT
Good Evening!

I added new pictures to the website! You can really tell how much bigger Jacob has gotten!

Jacob had PT and Early Childhood yesterday. He sat in his booster seat for a long time and seemed so happy playing. He really liked a toy Sue had. He'd talk after the music played as if he really liked it.

Michael had a game tonight. They didn't do too good. Michael got a chance to pitch tonight though and he did awesome! He struck them out really fast! The coach called me tonight and said he'd pick Michael up for batting practice tomorrow morning, which is nice so I don't have to sit out there with the other two. He also said he was so excited about the way Michael pitched. I knew Michael had it in him!

Michael and Devin went and played with the neighbor boys today. As Devin said, " I had real fun!" Thanks for inviting them over Kelly! It was nice and quiet in my house for a while! LOL

Tomorrow is Jacob's dr appt. It has been a WHOLE month since he's been to the dr. CAN YOU BELIEVE IT?!?!? I know I can't!!!! I'll update tomorrow with his stats.

Take care!

Love, Karla

Sunday, June 15, 2003 10:13 PM CDT
Happy Father's Day! We had a nice day today. Dave's mom came over today, and we all went out to eat at Famous Dave's, which has BBQ style food. YUMMY! When we got home, Dave went fishing on the boat for about 4 hours. He caught 6 fish, which he was excited about.

This week will be busy again. Monday and Wednesday, Michael has baseball games. His team is really pulling it together and improving greatly, in just one week! Last week's game they lost by one point! MUCH improvement! Tuesday, we have PT, Friday OT. Tuesday night, we are going to be the star family during the La Crosse Loggers baseball game against the Madison team. Thrivent, which gave us matching funds for the benefit, is sponsoring the game that night and asked us to be there. Dave is throwing out the first pitch! It should be cool. They are having a picnic before the game also. Should be fun!

Love, Karla

Dear Daddy,

I want to thank you so much for loving me just the way I am. When I was born, you were there for me when Mommy couldn't be, and it made me feel so good to hear your voice. When I was sick, you stayed by me and never gave up on me. You knew that I was your little fighter and that with God's help, I'd be just fine. I want to thank you for always being there for Mommy, especially when she is sad and scared. I love when you hold me and snuggle me, making all those funny faces and noises. I get so excited everytime I hear your voice and even though my eyes don't work very good, I sure like to look at you Daddy!!! You make me feel so good when you say I am getting so big, even when Mommy doesn't think so! You have such big dreams for me, and never set the limits on what I am going to be able to do. I love that about you. You treat me just like any other baby and you are so proud of everything I do. I remember one time you said, "Jacob, do you know how lucky you are to have such a wonderful Mommy?" And if I could have talked, I would have said, "God gave me a pretty wonderful Daddy too." I love you Daddy!!!

Love, Jacob

Thursday, June 12, 2003 8:35 PM CDT
Good Evening!

I had a person once tell me that since Jacob's been born, I don't talk much about my other boys. Since this is Jacob's journal, I tend to keep it more about what he is doing, how he is doing, and also add in things that our family is doing. To say that I don't talk about Michael and Devin though is simply not true, as if having Jacob would ever stop the love I feel for them. Even though Jacob has been a huge focus in our lives this past year, I still take time to give my other boys all the love and support they need.

It isn't easy being a brother to a special needs child. Suddenly things are different, the focus is on keeping the baby healthy, people coming in and out of your home, going to numerous doctor visits that don't just take a few minutes, but hours and hours, not to mention having to leave at a moment's notice to go to the hospital, sometimes to have your world turned upside down and your mom gone from your daily life. But through all of this excitement and change, Michael and Devin have survived and become two boys who Jacob is so lucky to have as brothers. They have become stronger, more accepting of others, more outgoing, and definitely more tenderhearted.

I love to watch the two of them snuggle next to Jacob, fighting over who can make him smile first, saying many oooh's and aaah's, who's the happy baby, and hi!!! Their voices change, and they become these sweet little beings, always protective and always loving. I love how they know by his cry when he needs to nurse, how they get upset when he cries because they feel so deeply for him, how they hold him tight, kiss him on the head and don't mind all the slobber they get back in return. I love how Michael will defend his brother to a child in his classroom who dared to say anything about the shape of his head, and ends up having the rest of his class defending Jacob as well. I love how Michael can say to a stranger in the store, "My brother has myelomeningoceles. And we're pretty lucky he didn't die when he was born!" I love the look on the lady's face and how Michael then had to explain what myelomeningoceles was (it's spina bifida by the way!)
I love how he will talk about Jacob as if he is the best baby God could have ever made. Michael once said, "Mom, I know why God gave us Jacob. It is because he knew that a baby as special as Jacob needed us to love him and I think we are pretty lucky too." I love how Michael could give of himself to let me be with Jacob all those months although I knew it was killing him inside to be away from me.

I love how Devin will ask over and over to hold his baby brother, even though he wouldn't admit I was even pregnant until just before Jacob was born. Admitting he was a big brother took even longer! I love how he will say, "Jacob's got an egghead," very lovingly of course, and how he will swear as he puts his head next to Jacob's that "Jacob is as big as me mom!" I love how he offers to buy Jacob a Spiderman, how he worries about him when he's crying, how he goes along to all the doctor visits without once complaining. I love how he has learned to make friends simply because he has spent more time in the hospital and clinic waiting rooms than any one child should, and how he has learned his numbers by riding in the elevator at Mayo Clinic. I love how he asked for a shot, just so that he wouldn't get Jacob sick, and how when he has a cold, he kisses Jacob on the back of his head.

I love how my boys can show utter joy at the simplest smile, the littlest coo, and the slightest movement of his legs, and make sure everyone in the world knows just what Jacob did. I love that they can cry along with us when we are sad and laugh along with us when Jacob makes us so incredibly happy. When I told Michael during Jacob's illness that he might die, Michael response was "And maybe he won't." I love that he can see through the fear and have hope.

I know I have said numerous times that I feel so lucky God blessed us with Jacob, but honestly, my luck began long before that. Mommy loves you so much Michael and Devin, and so does Jacob.

Love, Karla

Thursday, June 12, 2003 8:35 PM CDT
Good Evening!

I had a person once tell me that since Jacob's been born, I don't talk much about my other boys. Since this is Jacob's journal, I tend to keep it more about what he is doing, how he is doing, and also add in things that our family is doing. To say that I don't talk about Michael and Devin though is simply not true, as if having Jacob would ever stop the love I feel for them. Even though Jacob has been a huge focus in our lives this past year, I still take time to give my other boys all the love and support they need.

It isn't easy being a brother to a special needs child. Suddenly things are different, the focus is on keeping the baby healthy, people coming in and out of your home, going to numerous doctor visits that don't just take a few minutes, but hours and hours, not to mention having to leave at a moment's notice to go to the hospital, sometimes to have your world turned upside down and your mom gone from your daily life. But through all of this excitement and change, Michael and Devin have survived and become two boys who Jacob is so lucky to have as brothers. They have become stronger, more accepting of others, more outgoing, and definitely more tenderhearted.

I love to watch the two of them snuggle next to Jacob, fighting over who can make him smile first, saying many oooh's and aaah's, who's the happy baby, and hi!!! Their voices change, and they become these sweet little beings, always protective and always loving. I love how they know by his cry when he needs to nurse, how they get upset when he cries because they feel so deeply for him, how they hold him tight, kiss him on the head and don't mind all the slobber they get back in return. I love how Michael will defend his brother to a child in his clasroom who dared to say anything about the shape of his head, and ends up having the rest of his class defending Jacob as well. I love how Michael can say to a stranger in the store, "My brother has myelomeningeceles. And we're pretty lucky he didn't die when he was born!" I love the look on the lady's face and how Michael then had to explain what myelomeningeceles was (it's spina bifida by the way!)
I love how he will talk about Jacob as if he is the best baby God could have ever made. Michael once said, "Mom, I know why God gave us Jacob. It is because he knew that a baby as special as Jacob needed us to love him and I think we are pretty lucky too." I love how Michael could give of himself to let me be with Jacob all those months although I knew it was killing him inside to be away from me.

I love how Devin will ask over and over to hold his baby brother, even though he wouldn't admit I was even pregnant until just before Jacob was born. Admitting he was a big brother took even longer! I love how he will say, "Jacob's got an egghead," very lovingly of course, and how he will swear as he puts his head next to Jacob's that "Jacob is as big as me mom!" I love how he offers to buy Jacob a Spiderman, how he worries about him when he's crying, how he goes along to all the doctor visits without once complaining. I love how he has learned to make friends simply because he has spent more time in the hospital and clinic waiting rooms than any one child should, and how he has learned his numbers by riding in the elevator at Mayo Clinic. I love how he asked for a shot, just so that he wouldn't get Jacob sick, and how when he has a cold, he kisses Jacob on the back of his head.

I love how my boys can show utter joy at the simplest smile, the littlest coo, and the slightest movement of his legs, and make sure everyone in the world knows just what Jacob did. I love that they can cry along with us when we are sad and laugh along with us when Jacob makes us so incredibly happy. When I told Michael during Jacob's illness that he might die, Michael response was "And maybe he won't." I love that he can see through the fear and have hope.

I know I have said numerous times that I feel so lucky God blessed us with Jacob, but honestly, my luck long before that. Mommy loves you so much Michael and Devin, and so does Jacob.

Love, Karla

Monday, June 9, 2003 11:09 PM CDT
I received this card from a friend whose son is also going through a rough time with a disorder called HUS. I think it is an absolutely beautiful verse.

Blessings in Disguise
by Emily Matthews

The world is full of miracles to those who recognize them,
But we have to look the right way since God sometimes will disguise them.

He shines His light in places where we'd least expect Him to,
And often does the opposite of when we think He'll do...

He has a way of bringing out the best within the worst
The moment we stop worrying and choose to put Him first,

And if we do, He'll pull us through and help us find the door
That opens to the very thing that we'd been looking for.

Love, Karla

Sunday, June 8, 2003 10:56 PM CDT
Happy 10 month birthday Jakey!

I can't believe we have made it this far, and almost 7 months of not being in the hospital. That is a HUGE step!
Only 2 more months to the big 1st birthday. I am so excited. I want to do something really neat for his birthday, so if anyone is very creative and has some neat ideas, let me know!

As a tribute to his 10 month birthday, I'll review some of the "stuff" Jacob is doing.

Jacob wears size 3-6 month clothes, some 0-3 month still, but definitely 3-6 months for length. He is in size 1 diapers still. My boy has the littlest butt ever :)

Jacob loves to be held, all day if you could! He likes his bouncy seat too though, and will sit in there. He especially likes to sit in it when I am in the shower. He likes the sound of the water. If he is lucky, I'll bring him into the shower with me. He loves the water on his head and will try to lick the water off of himself too!

Jacob nurses about 7-10 times a day. When he takes a bottle, he eats 6 oz. He loves baby food too. He will eat up to 2 stage 2 jars at a time! Jacob mostly likes the fruit, but will eat sweet potatoes too.

Jacob can hold his head up about 90f the time. His trunk control is better, reaching about chest level now. He still is pretty floppy at times also though.

Jacob will roll over when you give him the cue by putting your hand on his back. He will hold his head up while looking to the side. This is tough work, but Jacob has a lot of willpower!!! He loves laying on his tummy!

Jacob loves his brothers, especially when they say, "WHO'S THE HAPPY BOY?" He will talk and coo to them and loves lots of kisses too.

Right now, Jacob is taking 12.5 mg of Topamax in the morning for seizures and 25 mg of Topamax and 30 mg of Phenobarbitol at night. I noticed some trembling as he was drifting off to sleep, so we upped his dose of Topamax. I have not seen any other kind of seizures since Oct when he got his new shunt.

Jacob is the happiest, most content baby. He never cries unless there is a reason. As long as he is being loved, that is what matters to him. I had a lady at church today comment that Jacob was the best baby she had ever seen. That really touched my heart :)

I have had so many people out in public ask me how old he is and look at me like I am crazy when I say he is 10 months old. Obviously,Jacob doesn't look like the average 10 month old baby. I also think about all the things "normal" babies are doing at this age, and it makes me sad sometimes. I get tired of the constant remarks and reminders of how different he is. But then I also realize that God has chosen me to be part of a miracle. And I also know that God will be with me every step of the way, just as all of you reading this journal will be also.

Please sign in to our guestbook and leave a message for the birthday boy!

Lots of love,
Karla

Sunday, June 8, 2003 10:56 PM CDT
Happy 10 month birthday Jakey!

I can't believe we have made it this far, and almost 7 months of not being in the hospital. That is a HUGE step!
Only 2 more months to the big 1st birthday. I am so excited. I want to do something really neat for his birthday, so if anyone is very creative and has some neat ideas, let me know!

As a tribute to his 10 month birthday, I'll review some of the "stuff" Jacob is doing.
Jacob wears size 3-6 month clothes, some 0-3 month still, but definitely 3-6 months for length.
He is in size 1 diapers still. My boy has the littlest butt ever :)
Jacob loves to be held, all day if you could! He likes his bouncy seat too though, and will sit in there. He especially likes to sit in it when I am in the shower. He likes the sound of the water. If he is lucky, I'll bring him into the shower with me. He loves the water on his head and will try to lick the water off of himself too!

Jacob nurses about 7-10 times a day. When he takes a bottle, he eats 6 oz. He loves baby food too. He will eat up to 2 stage 2 jars at a time! Jacob mostly likes the fruit, but will eat sweet potatoes too.

Jacob can hold his head up about 90% of the time. His trunk control is better, reaching about chest level now. He still is pretty floppy at times also though.

Jacob will roll over when you give him the cue by putting your hand on his back. He will hold his head up while looking to the side. This is tough work, but Jacob has a lot of willpower!!! He loves laying on his tummy!

Jacob loves his brothers, especially when they say, "WHO'S THE HAPPY BOY?" He will talk and coo to them and loves lots of kisses too.

Right now, Jacob is taking 12.5 mg of Topamax in the morning for seizures and 25 mg of Topamax and 30 mg of Phenobarbitol at night. I noticed some trembling as he was drifting off to sleep, so we upped his dose of Topamax. I have not seen any other kind of seizures since Oct when he got his new shunt.

Jacob is the happiest, most content baby. He never cries unless there is a reason. As long as he is being loved, that is that matters to him. I had a lady at church today comment that Jacob was the best baby she had ever seen. That really touched my heart :)

I have had so many people out in public ask me how old he is and look at me like I am crazy when I say he is 10 months old. Obviously,Jacob doesn't look like the average 10 month old baby. I also think about all the things "normal" babies are doing at this age, and it makes me sad sometimes. I get tired of the constant remarks and reminders of how different he is. But then I also realize that God has chosen me to be part of a miracle. And I also know that God will be with me every step of the way, just as all of you reading this journal will be also.

Please sign in to our guestbook and leave a message for the birthday boy!

Lots of love,
Karla

Saturday, June 7, 2003 5:18 PM CDT
Hello this Saturday!

I know some of you are wondering where I am, so as not to scare you anymore, Jacob is doing wonderfully! I just realized today that I hadn't updated the site since Tues, so if this is any indication of how airheaded I have been this week, well...you get the picture! Tues we had our Birth to Three meeting. Wednesday, we went over to Stephanie's with some other Moms&More ladies. Michael had his last day of school that day as well, plus a ballgame. They lost even worse that night I think! Thursday, we had 3 people come over...Julie the PT, Sue the Early Childhood teacher, and Laurie from Family Support. Julie called to see if she could come over earlier, so I said sure and then Laurie calls to say she is running late. I forgot she was coming over! Then Julie and I remembered that Sue was supposed to meet with her today, and we couldn't get in touch with her to tell her Julie had switched times. UGH. It was crazy. I brought the boys to Finding Nemo that afternoon. Friday morning, as I was coming out of the shower, I heard someone talking to the boys. I thought it was my best friend, but then realized it was the OT!!! I forgot she was coming. OOPS! So anyway, I had quite the week in the forgetfulness department. Hopefully, next week will be better!

Jacob has started cooing so much more. He has a different way he talks to Dave, the boys, and I. It is funny how his voice changes between us. Today, he was sitting in the bouncy seat talking to himself. It was hilarious! I am going to have to videotape that. It was the first time I have ever heard him talk like that!

Hope everyone has a great weekend. We got a patio set and a new grill, so we had to try them out tonight! Yummy steaks :)

Love, Karla

Tuesday, June 3, 2003 6:38 PM CDT
Hello everyone!

We had Birth to Three come out today. A vision specialist came out to give us some ideas on stimulating Jacob's vision and the OT came to meet us for the first time and to add her services. He will be getting OT and PT once a week each, and Early Childhood will continue twice a month, with one of those visits being with the PT or OT (alternating months.)

The vision specialist was awesome! She talked all about Jacob's vision and that he is making some nice gains by looking at our faces. The next stage will be to engage him with toys and objects. Right now if you held something up to him, he could care less. He doesn't process what he is seeing. Because he is visually impaired, he qualifies for services by the state school for the blind and visually impaired and so he can use their lending library. We will be getting a light box. Basically what it is is kinda like an x-ray box that you see in a dr's office. We will place various objects on the light box to stimulate him to look at and grab at it. He does light gaze, so that is a start. We will also be making a little room for him which is basically a box he will lay under. The top is plexiglass and things will be hanging down from it. We will start with 2 things and work on up. It brings the environment close to him. I thought that sounds cool. He loves orange, so we will start with orange things.

This is a whole new world, but I am so glad there are people out there that are trying to make it a little easier on all of us and trying to make the best possible outcomes for Jacob.

Michael's game last night was HMMMM....interesting. They lost 3-35. These kids need to hustle just a little bit more, shall I say! Michael normally gets very upset about stuff like this but didn't last night. He said there was a boy on his team who was fake crying because they were losing. Michael told him, "It doesn't matter. If we get 1 run it is good and if we get 2, it is great!" So obviously, 3 runs was outstanding! LOL He has another game tomorrow night. Tomorrow is his last day of school too. Now I can at least sleep in a couple days during the week! LOL

Take care!

Love, Karla

Sunday, June 1, 2003 9:35 PM CDT
Hello everyone!

I am doing much better. My lungs are still sore and I am a little hoarse feeling, but overall okay. I had one coughing spell yesterday with some blood, but nothing today.

We went up to my niece Kelly's graduation party yesterday. I have a hard time believing she is that old already! It was nice visiting with family and meeting some of Kelly's friends I've heard about. Jacob did really well with the trip. He stayed awake from about 12:15 yesterday until 11 last night! He slept for about 10 minutes with Uncle Bill, but that was it! He loved being held and passed around yesterday. He spent most of the day smiling! It was nice to see my brother Kevin, his wife Bobbi Jo, and their kids, Richard and Olivia too. We stayed at my mom's last night.

Jacob had a slight fever tonight when we came home, but I stripped him down to a onesie and he was fine after awhile. He used to get a slight fever in the NICU if he was too warm. I gave him some Tylenol after I knew his temp wasn't climbing. Hopefully it isn't anything. He seems to be acting his normal smiley self.

Tonight, Dave was holding him and Jacob was talking and talking. Then he heard my voice and he started a pathetic cry with the whole facial expression to go with it. I took him and he was fine. Then I gave him back to Dave, but he starting crying again! I thought that was so funny!

Have a great night! Michael's first baseball game is tomorrow night, so wish him luck!

Karla

Friday, May 30, 2003 10:18 PM CDT
Well, I scared the heck out of myself and my whole family. We went out to eat tonight. When I was done, Jacob started crying because he was hungry. I was in a denim jumper dress, so I couldn't quite unbutton in public, so I went to the van with Devin so I could feed Jacob. Thank GOD I did. I started coughing really hard. I couldn't stop coughing. I coughed up what I thought was mucus and grabbed a napkin to spit in. It was BLOOD. I was coughing up huge amounts of blood. Michael came out to the van thankfully and I told him to get Dave NOW. Devin was hysterical because he saw the whole thing. He wouldn't come near me at all tonight. I called the ER and asked what I should do, call an ambulance or have my husband drive me. They said I needed to decide since I was the one it was happening to. Dave finally came out (he had to pay the bill!) and he took me in. They figured it was either my sinuses since I have sinusitis, they can bleed really bad, or some kind of rupture from coughing so hard. It was the scariest thing because I was gurgling blood. I had chest x-rays which were all normal, sinus x-ray which showed the sinusitis, and bloodwork. My blood counts looked normal, so no signs of infection. I could start coughing more blood still the next few days. If it gets too bad, I need to go in again I guess. We are going to my niece's graduation party out of town tomorrow, so I hope I will be okay. I will have to go back to my dr on Monday. Talk about never ending excitement. BLAH

Jacob had a wonderful day, despite all our excitement!
Love, Karla

Wednesday, May 28, 2003 10:03 PM CDT
Good Evening! A short update on things around here. Sunday, we spent the day with friends out on the river. It was so much fun going on the boat. The boys loved every part of the day, except when Michael burned his fingers while roasting marshmallows. Monday, we sat around here with Dave's best friend and visited. Tuesday, PT came. She brought a booster chair with a tray to have Jacob start sitting more upright. He loves it. The back is contoured enough to allow his head to rest on it a little better.
Today, Moms 'n More had their end of the year breakfast. We will get together once a month during the summer and then begin again in the fall.

My supervisor called and asked if I would be returning to work next year. I have a decision to make. We are working on getting Dave and I medically coverage, and then I will stay home I believe. If not, I will have to work and Dave stay home so we have insurance. I don't want to quit yet until I know if it can work for me to stay home. I told my supervisor that we don't know how long Jacob will be with us, this diagnosis could mean his life expectancy could be a year, 5, 10, 15, maybe even longer, but I don't ever want to say I missed out on his life. Plus, I am still young and can always go back to work. However it happens, I know God will show us the way to make it work. He has already brought us this far.

Take care everyone and good night!

Karla

Sunday, May 25, 2003 11:57 PM CDT
When Jacob was in the hospital, I received a message on my answering machine, caller unknown. Playing on the message was this song by Celine Dion. I could never remember what it was until I heard it again today and said, "That's it!!!" It is absolutely beautiful, especially when I put it into context.

Because You Loved Me

By Celine Dion

For all those times you stood by me

For all the truth that you made me see

For all the joy you brought to my life

For all the wrong that you made right

For every dream you made come true

For all the love I found in you

I’ll be forever thankful baby

You’re the one who held me up

Never let me fall

You’re the one who saw me through

Through it all

Chorus

You were my strength when I was weak

You were my voice when I couldn’t speak

You were my eyes when I couldn’t see

You saw the best there was in me

Lifted me up when I couldn’t reach

You gave me faith cause you believe

I’m everything I am because you loved me

You gave me wings that made me fly

You touched my hand I could touch the sky

I lost my faith you gave it back to me

You said no star was out of reach

You stood by me and I stood tall

I had your love I had it all

I’m grateful for each day you gave me

Maybe I don’t know that much

But I know this much is true

I was blessed because I was loved by you

Repeat chorus

You were always there for me

The tender wind that carried me

A light in the dark shining your love into my life

You’ve been my inspiration

Through the lies you were the truth

My world is a better place because of you

Repeat chorus

Love, Karla

Sunday, May 25, 2003 9:23 AM CDT
Good Sunday morning!

We all are doing great here! Jacob woke up this morning, happy as can be and SOAKED. I love to see wet diapers! The more he can pee on his own, the better the chance we won't need to start catheterizing him anytime soon! It is amazing how the little things like peeing and pooping can be so exciting! LOL

We had a nice week. Thursday, we had PT and Jacob did wonderful. Friday, we went grocery shopping and this time I was smart and put Jacob in the Snugli sack, fed him RIGHT before we left, and prayed that Devin and he could make it through the store this time! Last time I went, we barely got in the door and he started screaming, so here I am carrying a baby with one arm and trying to steer a full cart with the other. He had been sleeping, so I thought it was safe to go shopping...nope! Middle of the store, Jacob had a poopy diaper and Devin had to poop. I swear that trip took twice as long as necessary! So this time I got smart :)

We went to a birthday party for Michael's cousins yesterday. There were 3 other babies there. As much as I know my friends understand about Jacob and his condition, it still is hard seeing other babies doing things Jacob may never do. Even their little round heads....I don't think these feelings will ever go away, but I also know that I can deal with them as they arise and not become a total mess. So that is good! I also know that everyone loves Jacob just the way he is and love to hold him, make him smile, and love him up too. I just think as moms, we hurt for our child so deeply at times. I know many other moms of special needs kids can relate! Last night, I talked to my friend Holly for a long time. Thanks for the good conversation! You always make me feel better! You can visit her daughter's website at www.caringbridge.org/mi/mayam

Today, we are going out to a cottage along the Mississippi River to visit with some friends we met in the NICU, Dave, Tracey, and Angelina. It should be a wonderful day!

Take care everyone and continue to keep Jacob in your prayers, specifically for good health, weight gain, and brain growth.

Love, Karla

Wednesday, May 21, 2003 10:36 PM CDT
Hello everyone! Jacob has had another wonderful day! He continues to bring so much joy to us and we thank God for every minute we have with him.

I got a call from Mayo saying our next appts will be on July 14th. We will see the developmental specialist, neurology, physical medicine, physical therapy, and social services. We are waiting to hear back from neurosurgery and plastic surgery on the appt date. It will also be in July instead of June, so I am hoping they can schedule it for July 15th, then I will stay overnight in Rochester instead of making 2 separate trips. And maybe then I can make my rounds visiting everyone and get some shopping in there too! LOL

I had a smile quilt made for Jacob. You can click on the link at the bottom of the screen to see it!

Good night!

Love, Karla

Tuesday, May 20, 2003 10:43 PM CDT
Good evening! I am sitting here with Jacob on my lap. You know the baby who should be going to sleep? He is just way too smiley to think about sleeping right now!

Jacob weighed in at 11 lb 6 oz yesterday which is a 9 oz gain in 2 weeks! YEAH! The doctor said he has gained more weight in the last month than in the 3 months prior. All his absorption tests were normal, so now hopefully with some worries out of the way, maybe he can gain some weight!

Last night, Dave and I were lifting Jacob by the hands to a sitting position. At first he hung his head back, but then once he realized what he should be doing, he started pulling his head forward and really working his muscles in his trunk. The funniest part was his face had the funniest expression on it like he was really workin' it! Once he is sitting up, he only needs support at his elbows or even holding his hands and he was able to sit up. He is a far ways from sitting unsupported, but it is definitely a start. He is really pushing himself away from our chests too when we hold him instead of laying his head on us. All these little steps are such HUGE steps!!!

Early Childhood was here yesterday. PT came today and we had to show off how good he was doing going into a sitting position. Tomorrow we have Moms 'n More. I am going to a movie with my friend Brenda tomorrow night. We moms need a break every now and then, right Brenda?

Hope everyone is doing well and remember to sign my guestbook if you haven't done so before!

Love, Karla

Saturday, May 17, 2003 9:51 AM CDT
Good Morning! It promises to be a beautiful day outside!

Michael had a wonderful birthday! We brought treats to his school and then stayed to watch a Rainforest assembly with various animals. That night Michael invited 5 boys to Chuck E. Cheese. All the boys were very respectful and had fun. Last year, I was ready to kill all of them, so it is a big improvement! They ate 2 large pizzas and a 9x13 cake! WOW!

Jacob had PT on Thursday and worked really hard again. We found a neat feeding seat that he can sit more upright in. He loves it. We had tried the same kind in the hospital before and he hated it then, so big improvement. Jacob has been working hard on sitting upright while on my lap too. Yesterday he pulled himself upright and held his head for a minute or so, then slumped forward, and sat like that for a while! It is so neat to see progress, no matter how small it is!

I got a call from the pediatrician yesterday and all of Jacob's absorption tests came back normal. She looked at Jacob's pattern of weight gain and feels that some of it may be also because of having a cold or ear infection, and that maybe those things take so much more energy than we think. She also said that maybe now that he is feeling better we can start seeing gains and that his increased appetite can be his way of making up for lost time. Jacob is definitely a puzzle though! We go on Monday, so I am excited to see if he's gained more.

Jacob's darn teeth still aren't through! You can see them right there though and he is chewing all the time on his hands, drooling on my arm, etc. I think he will be so cute with little teeth! LOL

Have a wonderful weekend and enjoy all the sun!

Love, Karla

Wednesday, May 14, 2003 10:17 PM CDT
Good Evening! Seems like the only time I ever get a chance to update the page is at night!

Jacob has been doing really well the last few days. He has really increased his appetite for baby food lately. He eats a whole jar of Stage 2 foods and cries when it is all gone! Today I decided to see just how much he'd eat if I continued feeding him. He ate 1 1/2 jars before he was full! Plus he had cereal mixed into the jar of fruit, which to me is a whole lot of food for such a little guy! Plus, he had another jar tonight, so I am really amazed he can eat so much. It is almost as if his appetite is very age appropriate, yet his weight just isn't showing it!

Jacob is really teething too. I wish those darn teeth would just pop through. He chews on his hands ALL the time. I added new pictures, so you will see a definitely trend with the hand in the mouth! LOL

Today we went to Moms group, then ran into La Crosse for medicine and to pick up the pictures. What a yucky rainy day. Tomorrow is Michael's birthday, so we will be taking him and 5 of his friends to Chuck E. Cheese for supper. Hopefully they behave! I can't believe he is going to be 10. It is amazing how fast they grow up. I made cupcakes for his class and the darn paper liners burnt, but thankfully the cupcakes looked okay. Set off the stupid smoke alarms and everything! The dumb part is I did the exact same thing a year ago tonight! LOL I also made him a dirt cake for his party. It is chocolate cake with chocolate frosting and gummy worms buried in the cake, along with oreos crushed on the top to look like dirt. His grandma made one last year and he was so tickled by it, he wanted one this year too!

Take care everyone! Hope you like the new pictures!

Love, Karla

Monday, May 12, 2003 10:32 PM CDT
Good Evening! We had a nice Mother's Day yesterday. Dave's mom came over and brought pizza with her from Papa Murphy's. YUM! We basically relaxed and visited for the rest of the day. Michael and I went to the store last night by ourselves. I take time alone with each of the boys occasionally so they can have mom all to themselves. Michael really enjoyed that. He is going to be 10 on Thursday. I can't believe he is going to be that old already!

We had a nice boring day today. No appts, no poop runs, no visitors, nothing. How nice is that? I washed clothes, cleaned the house a little, and decided today I was going to actually sit down and watch TV. I really don't have much time to do that anymore, so it was nice to just relax a little.

Jacob usually lies pretty still, will move his arms and legs occasionally, but mostly pretty inactive. Today however, he was all excited when I was talking to him and he hit himself on the head and then got a really stunned look on his face. It was hilarious! We have been noticing some movement in his feet and toes again the last few weeks. We noticed it shortly after birth, but not since the meningitis. It appears to be reflexes only, but hey, I will take anything I can get! As far as we can tell, Jacob has no sensation however below the knees.

Tomorrow, is PT in the morning and then after his bowel movement, we get to make a poop run to the clinic. I am hoping we can get to the bottom of the slow weight gain, however, I am also hoping that he doesn't have absorption issues either. I am not sure how long the tests take, but I will let everyone know as soon as we find out!

Love, Karla

Sunday, May 11, 2003 11:08 AM CDT
This Mother's Day is bittersweet for me, as last year we had just found out about the seriousness of Jacob's hydrocephalus and Spina Bifida. At that time, I really wondered how I could handle what God obviously thought I could, and finally came to the conclusion that I could handle the physical disability, but a mental disability would be too much. Well, obviously God had other plans, and as I think back on those thoughts of mine, I realize that love has no limits and boundaries, and the things I once thought would be too overwhelming truly aren't criteria for the love I feel for Jacob, or Michael and Devin. I was once sent this beautiful poem, and I would like to share it with you. Happy Mother's Day to all you mothers whether it be your first or 50th, whether you are celebrating it with your children or alone, whether your children are here on earth with you or one of God's angels. Being a mom is truly one of God's best gifts.

The Special Mother
By Erma Bombeck
From her book, "Motherhood: The Second Oldest Profession" (1983)

Most women become mothers by accident, some by choice, a few by social pressures
and a couple by habit.
This year, nearly 100,000 women will become mothers of disabled children. Did you ever
wonder how mothers of disabled children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation
with great care and deliberation. As he observes, he instructs his angels to make notes in
a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia."

"Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter?
That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.

I watched her today. She has that feeling of self and independence that is so rare and
so necessary in a mother. You see, the child I'm going to give her has his own world.
She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive.
Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize
it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will
never consider a 'step' ordinary.

When her child says 'Momma' for the first time, she will be present at a miracle and know it!
When she describes a tree or a sunset to her blind child, she will see it as few people ever
see my creations.

I will permit her to see clearly the things I see...ignorance, cruelty, prejudice... and allow her
to rise above them. She will never be alone. I will be at her side every minute of every day
of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles. "A mirror will suffice."

Love, Karla

Sunday, May 11, 2003 11:08 AM CDT
This Mother's Day is bittersweet for me, as last year we had just found out about the seriousness of Jacob's hydrocephalus and Spina Bifida. At that time I really wondered how I could handle what God obviously thought I could, and finally came to the conclusion that I could handle the physical disability, but a mental disability would be too much. Well, obviously God had other plans, and as I think back on those thoughts of mine, I realize that love has no limits and boundaries, and the things I once thought would be too overwhelming truly aren't criteria for the love I feel for Jacob. I was once sent this beautiful poem, and I would like to share it with you. Happy Mother's Day to all you mothers whether it be your first or 50th, whether you are celebrating it with your children or alone, whether your children are here on earth with you or one of God's angels. Being a mom is truly one of God's best gifts.

The Special Mother
By Erma Bombeck
From her book, "Motherhood: The Second Oldest Profession" (1983)

Most women become mothers by accident, some by choice, a few by social pressures
and a couple by habit.
This year, nearly 100,000 women will become mothers of disabled children. Did you ever
wonder how mothers of disabled children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation
with great care and deliberation. As he observes, he instructs his angels to make notes in
a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia."

"Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter?
That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.

I watched her today. She has that feeling of self and independence that is so rare and
so necessary in a mother. You see, the child I'm going to give her has his own world.
She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive.
Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize
it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will
never consider a 'step' ordinary.

When her child says 'Momma' for the first time, she will be present at a miracle and know it!
When she describes a tree or a sunset to her blind child, she will see it as few people ever
see my creations.

I will permit her to see clearly the things I see...ignorance, cruelty, prejudice... and allow her
to rise above them. She will never be alone. I will be at her side every minute of every day
of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles. "A mirror will suffice."

Friday, May 9, 2003 10:39 PM CDT
Good evening everyone! We had a wonderful week overall, busy like usual though! Yesterday was Jacob's 9 month birthday! I am so happy he has made it so far, stayed healthy since November overall, and is showing slow but steady gains. Mr. Happy Boy sure has brought us all so much joy. My friend Sue said that when she thinks about Jacob, she thinks about unconditional love. That really struck me..he definitely has taught us all about unconditional love, something I thought I knew about before, but WOW, I really know about it now. It is an awesome feeling to be his mama :)

Yesterday, we had lots of excitement around here! We went on our first official poop run! Jacob pooped A LOT at 6:30 or 7:00, but since the clinic didn't open until 8:00, we didn't want to take that sample since it needs to be fresh. So I waited to see if he had more to offer. 9:00 he pooped again, so we were off and running! Got home after 10:00, PT was here, got a call that it wasn't enough, that the sample needs to be separated between 2 people to test it. So we waited for the poop fairy to come again and sure enough, he pooped after 11:00 when PT left! So we were on Poop Run II as we called it and this time it was enough. OH the excitement!!!! Now the next poop test will be a 72 hour one, so I will collect poop Sat, Sun, and Mon and as the last one is collected, we need to run it into the clinic. I can see it now, all of you are incredibly jealous of my exciting life running poop to the clinic! LOL

Today my friend Amy and I went to rummage sales all day. It was fun! I talked to my friend Tracey tonight too. Thanks for the call Tracey!

Michael had baseball practice again tonight, so we sat down at the park and watched him play. I am so happy it is spring! I am loving taking the boys outside and soaking in the sun!

Have a great weekend!

Love, Karla

Wednesday, May 7, 2003 4:44 PM CDT
Good Evening! Jacob saw the opthamologist, Dr. Hohberger, yesterday. He has good vision, but the dr suspects possible cortical visual impairment, which basically means he can see, but doesn't always process what he is seeing. It makes a lot of sense, because sometimes you can't figure out what he is looking at or you may have something you'd think he'd be interested in looking at, but doesn't seem to process it. He has made incredible progress though since he was born where it appeared that he seemed to look right through you. Now he focuses on faces, smiles at you, etc. which is all excellent! We are having a visual specialist come out and help us with ways to stimulate him.

We saw the plastic surgeon Dr. Clay as well. He feels that Jacob's head is either already fused or on the way there because he has insufficient brain growth to push out the bones in his head like a normal developing brain does. This is already what we felt and knew to be true so it didn't come as a surprise. He also said that surgery would basically be cosmetic and we both didn't feel the need to put Jacob through major surgery just to make his head round. We have grown accustomed to his goofy head anyway :) So no surprises there either. I tried to discuss the whys and hows, but he basically skirted around the issue. He doesn't want to point fingers I am sure at Dr. Raffel, the neurosurgeon. We discussed head growth in general and he said that the head stops growing at 20 months when the bones fuse. This to me is crazy. Obviously some growth continues after the bones fuse because a child's head is a different size than an adults. The BRAIN may be done growing, but not the actual head I don't think. He said he will continue to grow from the eyebrows down. SO...we go back in June to see him and Dr Raffel together. YEAH....NOT. I have some questions about what it means if Jacob's head never grows...does it mean his life expectancy will be short? Does it mean that without growth, Jacob will die sooner, not develop, etc. I struggle with the thought of what all this means. These questions need answering, yet I know ideally it is in God's hands. I feel like while we were in the hospital, the prognosis was he was going to die, just basically pick the when and where. Now that he surpassed those expectations, can we have hope? Can we breathe yet? That is the hard part I struggle with. I also know though that I need to trust in God and He will let His path be known unto me...I know that and believe that, at least most of the time. It just is hard sometimes to get beyond the worries in my mind.

We visited the PICU yesterday and saw some of our favorite nurses and a resident dr we LOVED. She was there staying with Jacob ALL night when he was so sick and as Jacob was discharged. She was so encouraging and caring and said she always had faith Jacob would be okay. All of them couldn't get over how big he had gotten and how darn CUTE he is! He smiled like crazy at all of them! We had a wonderful visit. It felt like I was at home again :)

We had Moms 'n More today which is always uplifting. PT comes tomorrow, and I am on official poop patrol. First sample goes straight to the clinic! LOL Then I have to collect a 72 hour sample, so when that last poop comes out at 72 hours, we are off and running again! Knowing that they aren't open on the weekend, means I will have to start this adventure Monday. YEAH!!!! LOL SO much excitement in the life of Jacob I tell ya!!!

Please remember to sign our guestbook!

Love, Karla

Sunday, May 4, 2003 8:51 AM CDT
Good Morning! I tried to update yesterday, but the Caring Bridge was doing some maintenance. We had another busy week. Thursday we had both the PT and Early Childhood teacher come out together. Yesterday, Dave mowed the lawn or as Devin said, Dad's doing the laundry!" (get it?) LOL Michael went with his dad yesterday, and I sat around and watched TV! I never get a chance just to sit, so it was nice that Jacob needed some extra cuddles!

I talked to the geneticist at Mayo Thursday night, and both of us feel Jacob may be having some sort of absorption issues, that is why he is not gaining weight quickly. We are going to La Crosse to see the pediatrician tomorrow, so we will have them start looking at his stool samples to see if there is a large amount of fats and carbs or whatever else in his stool, thus they aren't being absorbed. To think you can learn so much from poop! LOL I talked to the ped. nurse on Friday and she said she'd let Dr. Brumm know about it, and so it would give her something to think about ALL weekend! LOL Hey, got to keep them on their toes and get your money's worth, huh?

I got a call from the social worker at Mayo. She had seen a mother whose daughter has numerous medical issues. She was wondering if I'd be willing to contact her and talk. I called her on Friday and started telling her about Jacob and said he had a rare brain disorder, SB, etc. Then she told me about her daughter and how she has encephalomalacia! I just about fell over! That is the same brain disorder Jacob has! So we talked for a long time! Her daughter is doing very well. She is 6 months old and is sitting, starting to put toys to her mouth, weighs almost 20 lb! She said she felt bad because Jacob obviously has more going, but I told her that she gave me so much hope that things can be okay. We just got the more severe end of the spectrum, but that is okay. I am just happy Jacob is alive and healthy right now! Just the meningitis alone can totally disable a child, so I know we have much more going on. It was neat to talk to her and I want to definitely keep in contact with her!

Tues we go to Mayo to see the opthamologist. We are having a vision specialist from Birth to 3 come and screen Jacob and they need an updated vision screen. He had one in the hospital in Oct. We will also see the plastic surgeon to see what he thinks about Jacob's head. The best I can understand it right now, is that his head was so stretched inutero from all the fluid that it got very large. Once the shunt drained it, it shrunk back in, causing the bones which were stretched, to now overlap. Normal brain growth will push the bones back outward to where it needs to be, however Jacob doesn't have much healthy brain tissue, so his brain growth is slow. Plus add the effects of trauma of the brain with his meningitis and there are lots of problems. As of the last scan his bones weren't fused yet, but that could be a potential problem. The longer the bones sit on each other, the better the chance of fusing. Once fused, they won't be able to expand if his brain does grow. Then they'd have to cut apart his skull and add expander plates. Another scenerio is if his skull has fused but no pressure is being placed on the bones from his brain trying to push outward, they wouldn't do surgery either, because then it would be more cosmetic than anything. So we shall see what he says! I am worried about it, because it just doesn't seem to be changing at all so far. I can't imagine though that his head would never grow....I can't even imagine this size head on Devin's sized body. I ask that everyone specifically prays for Jacob's brain to grow. Tell everyone you know, prayer chains, etc that we need prayers for brain growth. I have see a difference in his personality the last few days, so I am thinking some more connections have been made. Please keep Jacob in your prayers!

Love, Karla

Wednesday, April 30, 2003 11:00 PM CDT
Today marks the one year anniversary of the start of our journey. I will never forget how it all began.....
I had an ultrasound at 16 weeks which showed the baby was developing normally, but we weren't able to see the sex. I wanted to know this time around, so it became a joke that I had to think of some reason to get another ultrasound. I began having what I thought were gallbladder attacks, and so I called my dr who put it off at first, but then said it would be a good idea to have an ultrasound to figure out what was going on. At first they were only going to check my gallbladder, kidneys, liver, etc. but I told them I really wanted to see the baby too. So after approving it through the dr., I got to see Jacob too. The first view of our baby was definitely all boy. No doubt about that! I was a little disappointed at first, but then I watched him moving and kicking and the thought of having another boy wasn't so bad.

It was then that the tech started looking at his head. She spent a lot of time looking at it and I could tell it didn't seem right at all. Instead of round it looked more lemon shaped, with the corners kinda dented in. She then left and came back with another higher power wand and looked some more. She left again and came back with a huge medical book and another tech. I asked what was wrong with his head. Of course they couldn't say anything and said it could just be the angle they were looking at it. I knew that wasn't true. Meanwhile, Dave is clueless to the world and didn't realize things weren't right. They told us to wait for the radiologist to come talk to us, but they couldn't find him, so they sent us home.

I went back to work and told everyone something didn't feel right at all. That night, I came home and started looking on the internet for ideas on what could wrong. The weird thing is I KNEW it was hydrocephalus, I just didn't know how to spell it! I don't know how I knew, I just did. At 8:45 PM, I got the call from my dr that I was dreading. She said, "Hi Karla, this is Cheri Olson. I am calling about the results of your ultrasound." Right then, I knew it wasn't good. Drs DON'T call at 8:45 at night. She said that my gallbladder, liver, kidneys, etc were all fine and they saw no source for my pain. However, they noticed fluid on the baby's head and it didn't look good. She said they didn't see an opening in his back (spina bifida) however which was good. She said that he would probably be born early, he'd need a shunt, told me what it would do, that he could either be mentally retarded or have super intelligence. That she was doing research on it before she called me so that she could tell me more about it. She said that I would either need to go to Gundersen Lutheran in La Crosse to see a fetal maternal specialist or to Mayo Clinic, that she would not be able to deliver him. Right then, I knew it was REALLY serious. She asked if we knew what we were having and if he had a name yet. She wished us the best and said she'd be praying for us and that she'd contact me tomorrow with updates on where she thought we should go for the best care.

I hung up the phone and was completely numb and in shock. I sobbed from the depths of my soul. I have never cried so hard up to that point. Dave and Michael became hysterical and they didn't even know what was going on. It was horrible. I remember shaking so hard and throwing up just sick to my stomach even thinking there was something wrong with our baby. We didn't sleep much that night. I think I spent most of the night sobbing. The next day, I had to go to work because I didn't have many personal leave days left. It was a horrible day, but I made it through. The dr. called me at work numerous times to arrange appts for May 8th at Mayo. We wanted the best doctors available for our special guy.

It was the longest wait EVER. May 8th finally came. We were to receive some answers. We met with a genetic counselor, had an extremely long ultrasound, and met with the doctor to review the results. The genetic counselor knew just by looking at the scans from La Crosse that Jacob would have spina bifida. I really had thought this myself, even though they were unable to see an opening in La Crosse. It was a relief to know what we were dealing with. Jacob proved to be a stinker during the ultrasound. He moved around so much they had a hard time getting a good view of his back. They knew it was low and that he had good movement at least for the time being. He also did not have clubbed feet which is pretty common with SB kids. His hydrocephalus was severe however. The rest of his organs looked healthy. At least we had some positives to hang onto. When we met with the dr, he asked about an abortion, but said he felt from talking with us, we wouldn't want one and he said it was getting too late in the pregnancy anyway. I said ABSOLUTELY NOT. He might not be perfect or this may not be what we had planned, but he is our SON. The day was extremely emotional and hard, but a relief at knowing WHAT was going on.

The next day, we went back to Mayo to meet with the neurosurgeon and get his opinion on things. I left this appt crying and cried all the way home. I should have known then just how delightful this man would be to work with! Actually, he is a wonderful dr, knows his stuff, but he is extremely blunt and his bedside manner could use some touching up.

So that is the story of how it all began. Little did I know then that our emotional rollercoaster was just beginning and would get SO much worse down the road. It has been a long, emotional year. I can honestly say, I NEVER thought it would happen to us. I can also say I wish it didn't happen to us, but at the same time, I can't either....I am so glad it has happened as well. It has brought us insight into a WHOLE new world, a world where love, family, friends, and GOD means so much more to us than all the other "stuff." Jacob has brought a whole new meaning to what is important, what is REALLY important. The neat twist to this story is I have never had those pains again. I know it was a sign from God to get it checked out, so that we'd know what was wrong ahead of time. I thank God so much for blessing us one year ago today with the knowledge of what was to come. Jacob truly is a blessing sent from above.

Love, Karla

Monday, April 28, 2003 11:37 PM CDT
Happy Birthday Devin! Devin is officially 4 years old! We had a nice party for Devin and Michael on Sat. We bought the boys a trampoline, so they are in their glory. They told us thank you about a million times! We also had a pinata, which Devin thought was only for him. He cried when the other kids got a turn! But in the end, he was the one who got to break it open, so he was happy. His whole day was all about Spiderman (actually I should say his whole life is about Spiderman!) Today we went to Walmart to spend his birthday money. When I asked him what he wanted for lunch he said Shake 'em up fries (from BurgerKing) and chocolate milk. His two favorite things! LOL We went to the park this afternoon and then to Chuck E. Cheese after supper. He was in his glory today!!!

Jacob had Early Childhood this morning. Sue did a neat activity with him. She laid him an a laundry basket full of that fiberfill cotton batting. He absolutely loved it! We added Easter eggs too as a neat sound experience, kinda like being in a ball pit. It was neat!

He is doing very well, so smiley and wants to laugh so bad, just can't let it out!

Take care everyone, and I hope you like Bunny Boy!

Love, Karla

Friday, April 25, 2003 9:34 AM CDT
Good Morning! I have been so tired and run down lately...I wonder why? LOL We are so busy all the time! I also found out that my thyroid is a little out of whack, so the dr raised my dose of synthroid, so hopefully that will help!

Wed we had Moms 'n More group. Yesterday, we watched Trevor so Amy could bring Dakotah to the eye dr. He was so cute giving Jacob hugs. I gave Jacob a teether that you put in the fridge and Trevor wanted it SO bad. He'd cry and put his head down into the blanket. I'd offer him another toy, but he didn't want anything to do with it. It was really funny! Dakotah and Devin got into a fist fight over who was going down the slide first. BOYS BOYS BOYS UGH! PT came yesterday, and then Michael went to baseball practice last night too. We always have something going on. Good thing I am staying home. If I had to add work to this right now, I'd go insane!
We had a social worker from the respite program come out yesterday for an interview. We would like to have some options available to us if we want to go out alone (what's that?!?!?) for me to have some time to myself, etc. There is money in a fund for us, so we figured this would be a nice option. They will compile a list of possible providers and let us know.
I have to go shopping today and get somethings for the boys party tomorrow. We are going to have some family over for Devin and Michael's birthdays. Devin will be 4 on Monday! Michael will turn 10 on May 15th! Closer to Michael's birthday, we will have a friend's birthday party too.
Jacob has been taking his meds really well and hopefully his ear infection will clear this time!
Have a great weekend!
Love, Karla

Tuesday, April 22, 2003 9:47 PM CDT
Good Evening! I suppose I should take a few minutes to update everyone! We have been very busy. Saturday, we went to the Easter Egg Hunt and the boys had a blast. We went up to Hastings and had lunch with my mom, then onto my sister's house for the weekend. It was a lot of fun visiting, letting the boys play, etc. It was Jacob's first sleepover and my nephew Matt was so excited that Jacob was sleeping at his house! :)

Sunday, Jacob seemed to be a little sensitive to the noise and then Sunday night he had a hard time going to sleep. Monday morning, I had a WIC appt and so I asked if the county nurse could take a look at his ears, just in case, since it had been 10 days since his shot. Sure enough, his ear was still infected. So I called the clinic, they got us in right away. My best friend Crystal had an appt too that day and we made her wait because Jacob was seen first! Talk about power huh? LOL So Jacob is once again on antibiotics. I had to laugh because the pharmacist said the medicine tasted horrible and that I could give him some chocolate syrup or Cool Whip to make it go down a little easier. I said, "HE'S 8 MONTHS OLD! Besides, if he can handle taking Phenobarbitol, I THINK he can handle taking this too!" Like, thank you very much, goodbye! I remember a time when I would have struggled with the thought of giving my kids medicine that didn't taste good, but now, it is like whatever...needs to be done, he'll deal with it! LOL

PT was cancelled today because Julie has a cold. It was kinda nice to have a break from it all, besides I had a dentist appt later this morning too to adjust my bite on a filling that was done a while back. Then we got groceries, worked on Michael's science fair project, took Michael to baseball, went to La Leche League, then home! Tomorrow is Moms 'n More, and the rest of the week promises to be crazy as well!

Take care everyone!

Love, Karla

Saturday, April 19, 2003 8:33 AM CDT
Good Morning! We are getting ready to leave soon for the big Easter egg hunt down in La Crosse. The kids went last year and had a blast! After that, we are off for Hastings to take my mom out for lunch and then up to the cities to my sister's house for the weekend.
I know there are a lot of people looking at our site, but not many guestbook entries. Please everyone sign and wish Jacob a Happy 1st Easter!!!

Love, Karla

Friday, April 18, 2003 10:12 AM CDT
Good Morning! Happy Birthday to my mom today!!! We are heading for Hastings tomorrow to take her out for lunch and then all of us will spend Easter at my sister Sandi's house! It should be a good time.

PT came yesterday. We went to the Children's Museum in the afternoon with my friends Brenda and Sarah. Brenda has a disabled son as well, so it is nice to visit with her! The kids had a blast.

I have been thinking a lot about Jacob's shape of his head and all the things we have been told at Mayo. I decided to look up causes for the shape of his head on the internet and from what I read, it said that a child with a shunt, can have the CSF (cerebral spinal fluid) drained too quickly, thus caving in their head. If they don't have healthy brain tissue to push the bones back out, the bones override each other and fuse. The only way to solve this problem is surgery, and some other non-conventional methods as well, but I am not sure I like the sounds of any of it! I am so incredibly angry that this was allowed to happen! I mentioned it over and over when he was first born that it looked like his head was draining too quickly. So now we are stuck with something that shouldn't have happened in the first place! We will a plastic surgeon May 6th to get his opinion.

I hope everyone has a wonderful Easter and remembers the true reason we are celebrating this blessed holiday!

Love, Karla

Wednesday, April 16, 2003 10:07 PM CDT
Good Evening! Yesterday, PT came in the morning and worked with Jacob. He does very well with Julie and seems to be content working the whole hour without too much fussing. He has a lot of desire to do skills, just hasn't quite figured out how to do them on his own yet! His head control continues to improve. Next will be trunk control. We are considering adding in the OT services now that he is getting older. He has no idea that his hands can function to hold a toy for example or to bat at an object. He is perfectly content to just suck on them as you can see on many of the pictures! :)

Jacob has been so smiley and happy the last few days. He's been content with me laying him down, in his swing, and his bouncy seat. Normally he screams for a couple minutes, like he is very insulted that I would even think about laying him down!

Tomorrow, a friend and I are going to bring our kids to the Children's Museum. It should be fun! Michael has gone a few times, but Devin has never gone since he's been old enough to actually play.

Michael started his 6 day vacation today. I have been reminded many times that it is 6 days! He has a science fair project that we need to finish as well this week. He is doing it on fingerprints. So if any of you know any interesting facts on fingerprints, let me know!

Love, Karla

Monday, April 14, 2003 10:43 PM CDT
Hello everyone! We had a busy day! The neighbor put Michael on the bus today for us, which was very helpful since we had to be at Mayo at 8:40. Devin decided to shake things up a little and start throwing up on the way to Mayo! We were half way there, so we couldn't turn around and so Dave just kept hiim in the van for the first appt. He had diarrhea a little too, but was totally acting like himself and was fine the rest of the day.
Jacob had a renal ultrasound of his bladder and kidneys. Everything looked awesome, so we were told to come back in a year! Yes, I said a YEAR! YEAH!!!! Big step. As he gets older, we will discuss the need to catheterize him or if he starts getting frequent urinary tract,kidney, or bladder infections.
We also saw Physical Medicine and Rehabilitation (PMR) today and everything is going well from their standpoint. Dr Driscoll said that as long as he is making progress right now she is happy, no matter how slow that progress is. She called in another doctor, Dr. Nash, to consult on his head. He also feels that helmeting really isn't the answer since he needs rapid head growth to make it work properly and the chance of that happening is slim. He doesn't feel his head is growing and yet the neurologist does, he thought his sutures on his forehead and at the back of his head are possibly fused, thus giving him the protruding bones, yet the neurologist doesn't. Therefore, we are going to see a plastic surgeon and see what he thinks. It is best to get ideas from everyone and then go from there. Deb, the nurse coordinator, said it isn't time to get too worried yet, however sometimes it is hard when everyone is throwing different ideas, views, etc on you, yet no one is able to tell you what to expect or an outcomes at the same time.
Orthopedics came in and noticed improvement in his muscle tone in his legs. They are able to straighten much better now. He is very kind and explains so much to us. I really like that.
Jacob's ear looked better today, so the dr just said to follow up with Dr. Brumm in La Crosse.
Overall we had a great day, minus the puking and the ride home.....our van broke down just as we were going to turn down Huff Street in Winona. Thankfully we went that route home and we weren't on I-90!!! We tried calling a couple towing companies, then a police officer pulled up behind us and called for us instead. Get this....the towing company let us all pile into the truck and took us home! Isn't that a riot! He had a nice extended cab truck and so Dave and him were thinking of all the reasons Dave needs a truck just like that one! LOL We were supposed to pick up Michael at his aunt Colleen's house, but instead had her meet us at the house. I think Michael enjoys being with Colleen and Grandma too, so he was none the worse for wear, being that it was 7:00 by the time we got home!

I need to get to bed, Jacob is paging me for his final feeding for the night! I will write more tomorrow!

Love, Karla

Saturday, April 12, 2003 7:54 AM CDT
Update: Added new photos!

Good Morning! The weather here has been beautiful! Yesterday afternoon, the boys and I went over to the neighbors and visited for about 2 hours. Michael and Devin love our neighbors. They are in their 50s I think and both of their children are grown, so they spoil our boys a little!

Michael started getting sick Wed night and stayed home Thursday and Friday from school. Jacob woke up twice Thursday night which is unlike him and just couldn't get comfortable, so I knew something was going on with him. I called the dr and being it was Friday, she wanted him to come in. Good thing I did, because he still has an ear infection in his right ear. He was in for a recheck on Monday and it looked fine, but now it flared up again. He got a shot of antibiotic and when we go to Mayo on Monday, they will recheck him then and decide if he needs another shot or oral antibiotics. He gets such bad diarrhea and yeasty rash from antibiotics and Dr. Brumm doesn't want that to happen again because then he loses weight. Jacob did gain weight this week though! He was 10 lb 1 oz on Monday and was 10 lb 4 oz yesterday! YEAH!

We are planning on doing some family activities this weekend since it is so nice outside! I think I am going to take the boys to an Easter egg hunt this morning. It should be fun!

Love, Karla

Wednesday, April 9, 2003 3:27 PM CDT
Hello Everyone!

New picture of Jacob have been added! He is so smiley :)

We are still recovering from this weekend! I can't believe how tired I am. I still feel like I am dragging. I think all the excitement building up to the day and not sleeping much this weekend, plus being on my feet all day didn't help any!

Jacob went to the dr. on Monday. He lost some weight. He is down to 10 lb 1 oz. We are thinking it is from the diarrhea he had while on the antibiotics, plus not being in a good routine last week and not having his supplements with all the excitement. He goes back in two weeks for a weight check and Devin will also have his 4 year check up at that time.

Yesterday was Jacob's big 8 month birthday! I can't believe how quickly time has past. It seemed to drag when we were in the hospital, and now he is already 8 months old! I am thoroughly enjoying every day I am able to have with him. It has been so nice being able to stay home! Jacob decided to show off yesterday at PT and lifted his head about 3/4 of the way erect, looking sideways! When he had his head straight up and down, he lifted it about 1/4 of the way, which is harder because his head is heavy that way!!! We are impressed. We are able to hold him on our lap facing outwards now as well as carry him outwards. He holds his head up so good compared to even a month ago. I love to see progress. It is the little things which seem so huge and it is fun to savor those a little :)

Monday is our big Mayo day. He has Spina Bifida Clinic and will see Physical Medicine and Rehabilitation (PMR) and urology. He will have a bladder ultrasound to see how his bladder is emptying. Hopefully we can continue not needing to catheterize him. The longer we go without needing to cath, the happier I will be!

I am still so completely overwhelmed by this past weekend. We were talking about it today at Moms and More and how it really doesn't have to do with the money, but with the whole idea that people came together to celebrate our little guy, that people care so much to do for others in their community. It is completely amazing!!! I can't begin to thank the Moms 'n More group enough.....especially you Stephanie! You are all amazing people!

Love, Karla

Monday, April 7, 2003 1:10 PM CDT
Here's an update just for you Tracey! Smarty pants! LOL

Friday was a busy day getting things ready for the benefit. Two of my online buddies came into town that night. Lori lives by Chicago and Deanna flew into Minneapolis from Washington state. They both had to drive through ice and snow just to see baby Jacob. I thank both of you from the bottom of my heart for being here. I love ya!

On Friday, the Holmen Courier ran a story about Jacob and I. Please go to http://www.holmencourier.com/articles/2003/04/04/features/00jacob.txt to check it out!

Sat. morning, Jacob and I went to eat breakfast with Dave, Tracey and Angelina, friends we met in the NICU. It was so nice to visit and relax with friends before the busy day!
Dave and the other boys helped deliver the stuff over to Banquets on the Square.

After breakfast, I went back to the hotel where my online friends were staying. We went to Target and then out to eat at the Olive Garden. YUM! Sandi, Bill, and Matt were at our house when we got there and the boys played for a while.

We got to Banquets on the Square around 2:30. It was very nicely decorated and there were TONS of silent auction donations! WOW The last count was 209, plus many came in afterwards! People started coming in, games were set up for the kids, and the kids DJ, Dr. Rock started playing. At 5:00 the kids from the schools sang and then a group of kids called the Viking Express sang as well. They were awesome! I was so impressed at the turnout! Around 6:30, I told Jacob's story, said my thank yous to everyone and had a slideshow of pictures of our family with Jacob. I don't think there was dry eye in the whole place! My best friend Crystal presented us with a check for $500 from Kwik Trip where she works. The Sunday school and ACTS band sang at 7:00. The Sunday school presented us with a check for $725 collected from Jan, Feb, and March's offering. Amazing! Then at 8, the silent auction was over and the DJ started. There were lots of bidding wars going on! It was an awesome night!

The memories I will savor forever...the well wishes, the words of encouragement, the smiles, the kind words. I think a mother has so much pride in her children that she feels they are beautiful no matter what, and when a child is less than "perfect" a mother wants others to see that beauty that she sees. I think people have really seen the beauty in Jacob. It warmed my heart to hear over and over from people just how beautiful Jacob was.

The whole experience was heartwarming. We had at least 500 people there, many who we didn't even know. Two women came up to me, one has a son with spina bifida, and the other has a daughter with hydrocephalus. Both gave me words of encouragement and said that they wanted to let me know things will be okay, and if I needed to talk to someone, they were here for me. I thought that was amazing. Kids that I talked to from the schools came just for Jacob's party. Dave, Tracey, and Jacob's NICU buddy Angelina, came. A nurse from Mayo and the social worker from Mayo came. My online friends came. Friends, family, and strangers came.....ALL for Jacob. That is so amazing to me, how much people CARE, how a special little boy like Jacob warms people's hearts. The emotion, the love, the caring, was so evident. I can't even begin to tell you how wonderful this was, just how incredible it was for us. We have been through so much, yet we will be okay because we have an amazing support system. I love all of you so much.

Love, Karla

Thursday, April 3, 2003 11:40 AM CST
Hello everyone! Sorry it has taken me so long to update again. It has been a busy week! On Tuesday, Stephanie, Jacob and I were on the news. It went really well, except it went fast, and I didn't get a chance to say all I wanted to say, but then again, I could talk about Jacob forever! Of course Jacob cried during the whole thing and I was rubbing his gums to get him to calm down a little. Kinda looked dumb on TV, but hey, it kept him from screaming too loud! He was fine before and after, but wanted to show off during the segment I guess! LOL It was neat to see what it is like behind the scenes. Jennifer Livingston who interviewed us, is so sweet and sincere. She had to hold him before we left and talked to us quite a bit during commercials and afterwards.

Yesterday, we had Moms and More. We discussed some of the final touches for the benefit. We are so incredibly shocked at how generously businesses and individuals have been in donating items for the silent auction. We are unable to have a raffle for a couple of reasons. You have to get a license in order to have a raffle and also, we are getting matching funds (hopefully!) through Thrivent, which used to be Lutheran Brotherhood and AAL, and so because they are a religious organization, they do not allow raffles since it is a form of gambling.

I talked to Michael's 4th grade yesterday and it went so well. All the kids were so quiet and really listened to what we had to say. I encouraged them to help support Michael as well.

Today we saw an OT at Skemp in La Crosse. We were able to get some more foam so Stephanie can make another head supporter (thanks Steph! I am offering your services! LOL) and also a piece of foam to form in the shape of a doughnut so he can lay on it, cradling his head, yet putting pressure on the back. Everyone there fell in love with him of course! We had 5 people in the room at one time loving him up!

Please click on the journal history for Monday's entry to see the schedule for Sat and directions on how to get there!

Hope to see you all on Sat!

Love, Karla

Monday, March 31, 2003 7:35 AM CST
Good Morning! I love waking up to sunshine. What a nice change! This weekend, I gave the children's sermon at our church. It went very well. The photographer, Steve Miller from Cherished Memories, put on a slide show of the pictures to the song Landslide by the Dixie Chicks. They are beautiful!!! I felt bad afterwards because Michael was at school that day and I got some pictures of Devin with Jacob and I. I wanted some pictures of Devin with Jacob since he refused to cooperate when we had pictures taken in the hospital. We got some neat ones of Michael and Jacob then, but Devin was being so lovely that day wasn't he Sandi? If we do the slideshow at the benefit, I am hoping we can somehow add those pictures of Michael with Jacob to it too. Steve is offering a deal for the benefit. For $20, you can have your pictures taken and an 8x10. The $20 goes to us.

Here's info about the benefit for those who are coming.

3-6:00 kids games and face painting, entertainment by Rick "Dr. Rock" Pervisky (kids DJ)

5-5:15 Kids from the Holmen Schools will sing Love Grows
The Viking Express, which is a singing group from the school, will also sing at this time I believe

7-7:30 ACTS band (from our church) will sing, along with the Sunday School kids

8-11:00 Music Mix of La Crosse will DJ the dance

All day long will be the silent auction and food. As far as I know, right now there will be hotdogs, ham sandwiches, nachos, popcorn, cookies and bars, and beer and pop sold throughout the day.

Directions to the benefit for those of you coming:
Take I-90 to the Hwy 53 North exit. Follow Hwy 53 North to the Holmen Drive exit. Take a right off the exit, which will lead you into Holmen. Banquets on the Square is in the Holmen Square Mall, next to Hardware Hank, YMCA, and Little Al's. If you get to Skogen's IGA, you went too far!

This weekend is going to be so awesome for all of us. I can't even begin to thank everyone enough!

Love, Karla

Saturday, March 29, 2003 6:55 PM CST
Good evening! One more week until the benefit! I can hardly wait! It will be so nice to celebrate Jacob's life and totally enjoy the day. We really need a day like this to be with friends, family, and our community and celebrate just how far Jacob has come. The committee is asking for cookies and/or bars to be donated for the festivities, so if you are able to bring some, please let me or Stephanie know! The silent auction items are phenomenal. I can't believe how wonderful everyone has been! On Tuesday, Stephanie and I will be going on News Channel 8 for the Contact segment at Noon. I have also been telling Jacob's story to the schools and will be sharing it at church services this weekend. Randy Erickson, from the Holmen Courier, listened to my presentation on Friday at Viking Elementary and will have a story in this Friday's edition. I will post it for all of you to read.

Jacob continues to do well. He hasn't had any issues at all with his ears since last Friday. Hopefully, things are cleared up and we won't be back in the hospital next weekend! He will have a recheck on his ears April 7th and then April 14th, he will have a full day at the Spina Bifida Clinic.

We received a report from the geneticist. There will be more bloodwork done because one of his newborn screens didn't register correctly since he'd had a blood transfusion. Otherwise, her feelings on his development were very encouraging. To quote her: "I think that he is quite alert and chipper today, and I am pleased with the progress that he has made given how sick he was and the findings on the CT scan of the head. At this point, I don't think we can prognosticate as to exactly what his development will be. However, he has made developmental progress and he clearly is an engaging little guy. I think we need to keep an open mind and watch over time."
I love it :)

Please keep praying for Jacob, especially pray that he stays healthy this week. Also remember to sign our guestbook. Your words of encouragement help all of us as well!

Love, Karla

Thursday, March 27, 2003 6:51 PM CST
Good Evening everyone! We continue to be extremely busy around here, yet taking the time to enjoy things as well. We had Moms group yesterday and I so enjoy all the new friends I have made. We also had a wonderful visit with Amy and her boys yesterday. It is so nice to be able to enjoy friends and conversation. The simple things in life mean so much more to me now then before. I find that I am taking the time to tell those around me how much they mean to me, making plans to visit friends, helping others when I can, making those connections and memories that go far beyond "STUFF" and "MONEY." Dave and I have talked a lot about making memories for the boys, things they can look back on and say WOW, Mom and Dad really love us. It is not about what THINGS they gave us, but what values and love they instilled and shared with us. One of our favorite memories of Jacob's stay in the hospital was when we came back to the house for a night, leaving Jacob with one of our favorite nurses. All the leaves had fallen off the trees and I was sad because I had missed it. Except there was one tree in the front yard that seemed to have been waiting for me. All 4 of us had a leaf fight, shoving leaves in each others' coats, throwing leaves in each others' faces, and LAUGHING. It is a wonderful memory, a stress reliever at the time, but something the boys will probably take with them forever.
My friend Holly sent me an email today that I would like to share. We often talk about our journey. A journey we really didn't want to take, but along the way, we have met some awesome people, made lasting friendships, and memories such as the one I shared with you. To leave this journey behind would mean I would have to leave those things that have become SO dear to me. Even though this road is tough, I wouldn't change it for the WORLD. Especially with my friends, family, and God by my side.

The Road of Life

At first, I saw God as my observer, my judge, keeping track of the
things I did wrong, so as to know whether I merited heaven or hell when
I die. He was out there sort of like a president. I recognized His
picture when I saw it, but I really didn't know Him. But later on when I
met Christ, it seemed as though life were rather like a bike ride, but
it was a tandem bike, and I noticed that Christ was in the back helping
me pedal. I don't know just when it was that He suggested we change
places, but life has not been the same since.

When I had control, I knew the way. It was rather boring, but
predictable it was the shortest distance between two points. But when He
took the lead, He knew delightful long cuts, up mountains, and through
rocky places at breakneck speeds. It was all I could do to hang on!

Even though it looked like madness, He said, "Pedal!" I worried and was
anxious and asked, "Where are you taking me?" He laughed and didn't
answer, and I started to learn to trust. I forgot my boring life and
entered into the adventure, and when I'd say, "I'm scared," He'd lean
back and touch my hand. I gained love, peace, acceptance and joy; gifts
to take on my journey, My Lord's and mine. And we were off again.

He said, "Give the gifts away. They're extra baggage, too much weight."
So I did, to the people we met, and I found that in giving I received,
and still our burden was light.

I did not trust Him, at first, in control of my life. I thought He'd
wreck it; but he knows bike secrets, knows how to make it bend to take
sharp corners, knows how to jump to clear high rocks, knows how to fly
to shorten, scary passages. And I am learning to shut up and pedal in
the strangest places, and I'm beginning to enjoy the view and the cool
breeze on my face with my delightful constant companion, Jesus Christ.

And when I'm sure I just can't do it anymore, He just smiles and says...

"Pedal."

Tuesday, March 25, 2003 10:31 PM CST
Good Evening!!! We had a wonderful day today. Jacob is enjoying being able to look around more now that he is laying on the back of his head! Stephanie helped me make a cool little insert for his head supporter and now Jacob is laying on the back of his head. The foam insert is stiff enough so he has to stay on the back of his head, but not too much that he can't turn it side to side a little. He had been sitting in his bouncy seat and laid on the floor today for a 1/2 hour!!! Of course, his left index finger was in his mouth the whole time :) He loves to suck on his hand!!!

PT came this morning. Jacob lifted his head off the floor even higher today. He really wants to do it!!! He is such a hard worker when PT comes. I love to see how determined and HAPPY he is. I have been SO blessed with a wonderful baby. He has been such a wonderful gift to us all. He can go through all this pain and challenges and he still is happy. How can one not see God's love shining through that smile? :)

We have a Moms 'n More tomorrow and then on Thursday and Friday, we will be talking with more kids in the Holmen schools about Jacob. It will be a nice message for them and a way to rally support for Jacob as well.

Take care!

Love, Karla

Monday, March 24, 2003 9:31 PM CST
Good Evening! Jacob had Early Childhood come today. She brought a box full of different textured objects. He loved the crinkly paper of course, but he also really loved the silk scarf. It was really neat to see his expressions. Sue also sang to him, played pat-a-cake and read him 2 books. He really looked at the pictures. His eyes were scanning the pages and then he started talking to the book. It was hilarious! You could see the wheels turning in his mind I swear. He absolutely loved it!

I took Jacob back to the pediatrician in La Crosse today for a recheck on his ears. They are already healing. She still saw fluid, but said it will take a few weeks for that to completely drain. We go back on April 7th for shots and a recheck. She asked how Jacob is doing taking the medicine and I told her he gets mad when it is all gone! It is hilarious. He loves the taste and when it's gone, he gets a funny look on his face as if to ask why I am not giving him more and then he cries. Silly boy!

Take care everyone!

Love, Karla

Sunday, March 23, 2003 8:52 PM CST
Good Evening! Jacob seems to be back to his normal self. Eating, sleeping, smiling and pooping! He decided Friday to poop and poop and poop! Since then he has been going very well on his own.

Michael had his Pinewood Derby today for cub scouts. He didn't place, but did get a participation trophy. He was very upset. It is hard to teach them about good sportsmanship when you know it's got to be so hard on them because they want to win so bad.

Dave gave Jacob a bath tonight and afterwards, I gave him a good massage. I was looking closely at his scar on his back from the myelomeningocele opening (his spina bifida) and the red portwine type marking on it is in the shape of a heart. NO KIDDING. I had to take pictures of it. It never looked like that before. It was pretty much red all the way across. It is really neat!

Tomorrow, Jacob's Early Childhood teacher comes over. PT is on Tuesday, Moms 'n More on Wednesday, PT on Thursday, and hopefully QUIET on Friday! LOL

Take care everyone!

Love, Karla

Saturday, March 22, 2003 6:27 PM CST
Hello! Jacob seems to be doing much better today! His fever broke when we were still in the Emergency Room and hasn't returned. The prayers are working so far!!! He is his normal self for the most part. He has been eating wonderfully, taken a couple nice naps and is very happy overall.

I got a call from Deb yesterday and the CT scan came back. There has been no change from the last scan in Dec. which is AWESOME news!!! This means that there aren't any new calcifications, the shunt is draining the fluid appropriately, and there aren't any new areas of fluid building up like they originally thought would happen, thus causing SERIOUS problems. I am so excited to hear good news. Sometime in the near future, I hope they'll do a urinalysis to rule out any other problems, including metabolic disorders. That is the one thing I am still concerned over, but as always, God is with us.

If I sent you benefit buttons, please remember to send payment for them. You can mail it to me or to the address listed below. Thanks!!!

Love, Karla

Friday, March 21, 2003 11:26 PM CST
A quick update and a HUGE prayer request!

Around 6:00 tonight, I noticed Jacob was burning up. Literally right before my eyes, he went from fine to a 103.8 fever. I called the ped. on call, she was supposed to call me back, I couldn't wait, so I left for the emergency room. Dave called again to let them know I was coming in with him. His temp was 101.2 when we got there. They knew who we were and brought us right into a room (talk about service from the last nightmare!) The dr came in and looked in his ears and he has double ear infection. Drew blood, took a chest x-ray, and cathed him for a urine sample. Urine was okay, CBC showed 16,000 white blood count indicating an infection, and x-ray shows a tiny spot of pneumonia. Jacob was given a shot of antibiotics and amoxicillin to take for 10 days. Mayo was called and they talked to neurosurgery, who felt a tapping of his shunt was not necessary since he doesn't have any signs of a shunt infection. Tapping his shunt could run the risk of infecting the shunt and since it may not be infected right now, it isn't worth it yet. We came home and already his fever has broken. Please pray VERY hard for Jacob. It is 6 months ago today that our last nightmare began. Anytime there is infection in his body he runs the risk of a shunt infection. We ask the Lord to protect Jacob, help the antibiotics do their work, and keep the infection at bay, clearing it up as quickly as possible. Amen.

Love, Karla

Wednesday, March 19, 2003 10:52 PM CST
Good evening! Jacob finally went to bed and so I will update you all on our appt today. I hope you are ready for this exciting news!!!! Jacob is in the double digits now!!! He weighed in at 10 lb 6 oz!!!! I made sure we used the same scale that we had used 2 weeks ago!!! YEAH!!!!

We saw the OT to give us ideas on shaping Jacob's head better. Deb, the nurse coordinator from the Spina Bifida Clinic met us there. She is so awesome. Right away she took Jacob and had to oohhh over him for a while. We discussed ways to help Jacob lay more comfortably on his head. The OT used some foam and cut out an area so when he sleeps, he isn't putting too much pressure on one area. Then with some coaxing, she gave us some foam to sew onto one of the head supporters (you know the kind you put in a carseat) so that when Jacob is laying on his back in his swing or bouncy seat he can actually lay on the back of his head and not on the side of it instead. She wasn't willing to make something too stationary because just in case he spit up or whatever and needed to turn his head or also so that a bony ridge doesn't form around where we are trying to shape it. I think this foam contraption should work. Stephanie with her sewing expertice is going to try to help me, right Steph? LOL We then began talking about the whole helmeting issue to shape it and so the OT paged Dr. Raffel, the neurosurgeon, and talked to him. He is such a jerk at times. Basically he said it wouldn't work because Jacob's head will never grow. I am fully aware that Jacob does not have much brain tissue and of course in order for his head to grow outward the brain needs to grow from the inside and push outward, but how can he say with absolute certainty that his head will not grow somewhat???? I know that Jacob will be considered microcephalic, basically meaning a small head unproportioned to his age and size, but to totally dismiss it as if Jacob isn't worth the time or energy just totally pissed me off. Jacob's head HAS grown. No it is not growing rapidly, and it is not the size of a 7 month old, but it is right now pretty accurate to his size, and it has grown 1.3 cm since discharge and his Dec 3rd appt. I am really considering looking into a second opinion. Not that I necessarily want a helmet, but at least it would be nice to have some kind of device to help flatten his head in the back somewhat. So anyway, it was a pretty good appt all around except for Mr. Personality, and I will continue being his mommy and doing what's best for him, no matter what the Boss says.

Love, Karla

Tuesday, March 18, 2003 1:59 PM CST
Good afternoon! I am SOOO excited today! I talked to the geneticist's office, and Jacob's chromosome study came back normal!!!! YEAH!!! Praise the Lord! This is such a huge weight lifted off my shoulders. Next step is to do a urinalysis and meet with the geneticist again.

Because of the 2 hour late start yesterday, Michael's school is going to reschedule my visit. I did go to Viking today though and it went so good. I think the kids are really listening and I hope that they will take my lesson to heart and carry it with them. If I planted the seed in just one child, then I know I did my job.

Tomorrow is Mayo Day. I will let everyone know how the appt goes.

Take care!

Karla

Monday, March 17, 2003 8:25 AM CST
Good Morning on this foggy day! Michael has a two hour late start because of the fog. I sent him out to the bus stop and he came back in. The neighbor told him about the late start. I suppose I should have listened to the TV or radio this morning! OOPS

We had a very nice weekend. Yesterday, I told Jacob's story to the Sunday School children. The kids listened so well and it was really a nice healing experience for me. It is nice to be able to share my faith and feelings about Jacob. Today I will go to Michael's school and tomorrow I will go to Viking, his old school. I will be stressing accepting those who are different than you and that the whole family is affected when you tease someone. I think it will go over well. The schools are also kicking off a kindness challenge, so we will tie everything in. I am also going to mention the Ronald McDonald House and saving poptabs. The children have all been asked to sing and buttons are being sold too, so I think it is neat that they can meet Jacob. Makes them a little bit more excited to do something for him.

We have an extremely busy week. I hope I am still standing at the end of it all! We have the visits to the school, PT, visit from our Birth to 3 coordinator, Michael's conference, Moms and More, La Leche League,and somehow throw in a photo shoot of Jacob. A man from our church is a photographer and he has offered to take some really touching/emotional pictures of Jacob for free. He will also run a promotion where he gives us the money for sitting fees for anyone who comes in and has a children's portrait package done. He said that too often we take life for granted and Jacob is a wonderful example to us all to be reminded of what really matters.

The highlight of the week will be our visit to Mayo on Wednesday to the OT to make his head shaper foam. My friend Stephanie is coming with. All I had to do is offer her a trip to Old Navy, and she was sucked right in! HEE HEE!!!! It will be nice to have someone to visit with. The drive gets lonely sometimes! Devin usually falls asleep within the first 15 minutes!

Take care everyone! Please remember to sign my guestbook!

Love,
Karla

Saturday, March 15, 2003 5:46 PM CST
Hello everyone! I have added the article from the paper and finally got it to a size you can actually see to read it!!! There are also new pictures of Jacob. I love the tub one. It is like he is saying, "So what you lookin' at?!?!?"
Jacob is having problems pooping here. I know that bowel problems come with Spina Bifida, I was just hoping we wouldn't have to experience it so soon :( We tried a suppository and are moving onto an enema. Poor baby. He can go a little, but his tummy is really hard and distended a little too. UGH

The basement is all done! It looks really nice! It is fun being down there now. The kids went downstairs right away this morning! :)

Tomorrow, we will be sharing Jacob's story in Sunday School. Monday, we go to Michael's school and talk to the 4th graders, and Tuesday we go to Viking, his old school, and talk to the 4th and 5th graders. All the Sunday School kids and grade school kids have been invited to sing at the benefit, so it will be neat for them to hear Jacob's story.

Take care everyone and have a wonderful weekend!

Love, Karla

Wednesday, March 12, 2003 1:10 PM CST
Hello this Wednesday! All continues to go well here, although I am a little concerned over Jacob's cold. He was better for about a week and now his nose is all stuffy again. This morning he had a temp of 100*, but then he was all snuggled close to me, wrapped in a blanket nursing. I checked his temp about 5 more times, neurotic me, and it was fine within 30 minutes. He was known to spike to 100* when he was in the hospital if he was bundled up too much. I pray that is all it was. He was smiley and cooing this morning, eating like normal, so none of those signs pointed to anything wrong. Devin has a cold STILL. He goes between feeling good for a couple days to having a cough and runny nose again. We really aren't around many other people or go to many places, so I don't know what to make of it. I may ask Dr. Brumm to run a CBC (complete blood count) on him next time I bring Jacob in if he still has a cold.

The basement is going to be finished today. I am AMAZED at how different it looks already! Having the carpet in there will make it even better :)

I talked to Deb from the Spina Bifida clinic and next Wed. we will go back to Mayo to meet with an OT (occupational therapist) to create a foam shape for Jacob to lay on. His head is so long from his ears back and narrow side to side, so because a molding helmet is out of the question due to his shunt, we are going to try molding the shape of his head using pressure on the back of his head. Right now he can lay on the back of it when he is awake and alert, basically when he is working at it, but as soon as he is tired, his head flops to the side. I have talked about molding it since he was born, and basically all I was told was to prop blankets on either side so he has to lay on the back. Well, that works for 2 whole seconds until he is mad!!! When I took him to Mayo last week, I demanded to do something about it. The longer we wait the worse it will be because the bones will fuse eventually and we won't be able to do anything then. I was proud of myself for really pushing the issue. It is one thing I am learning quickly....I have to stand up for him or otherwise no one else will.

Take care everyone and please pray that this cold is gone soon!

Love, Karla

Monday, March 10, 2003 10:22 PM CST
Good Evening! I am going to try to post here before my little prince decides to wake up for his last evening feeding in about 10 minutes! He is just like clockwork, so it isn't even worth it to try to go to bed before then! At least he sleeps through the night though!

I can't believe I forgot to post on Saturday! Saturday was Jacob's big 7 month birthday! It seems like such a long time ago since we started this whole journey. A journey with lots of bumps along the way, but with those bumps I have learned a lot about myself and my family, my friends, and mostly importantly God's grace. I have learned to take each day as a blessing because we never know if we will have a tomorrow. I have learned to revel in all the little things. Love, family, friendship, kindness, the things God has given us, the things that matter. Not whether Jacob is rolling over at 3 months, sitting up at 6 months, not how much he weighs, or if he'll ever walk or talk. The important things such as seeing his smile, hearing him coo, knowing who his mommy, daddy, and brothers are, waking up in the morning, falling asleep in my arms, crying when I lay him down because he wants to be held ALL DAY, and knowing that if all I got done today was to hold my baby, then I have had the most WONDERFUL day. But most of all, I am so glad that he is ALIVE and that I have been given this chance to be his mama.

I know I have said this many times, but I am so amazed at how a seemingly horrible circumstance such as having a child with less than perfect health and abilities, can create so many amazingly WONDERFUL blessings at the same time! I think of the people I have met, the experiences I have had, the deepening of relationships between family and friends, and I think WOW. This really isn't so bad afterall. It is just a different journey, but definitely not a bad one.

So as I hold my little prince in my arms now (yes he woke up right on cue!)I want to thank all of you for joining me on this journey. You have all been so incredibly supportive. I thank you for all the love and prayers that have really uplifted us. I know how powerful prayer is. I see it every time I look at my little guy!

Love, Karla

Sunday, March 9, 2003 9:57 AM CST
Good Morning! We have just about finished the basement! YEAH We spent all day yesterday getting it painted. Now all we have left is the window sills and half of the stairwell. It looks really nice. Mike will be here tomorrow to start on the ceilings.

Jacob tried applesauce on Friday and he absolutely LOVES it. It seems as if he is more than ready for food. He uses his tongue correctly and gets very excited for another bite. I gave him cereal and applesauce twice yesterday and then he had it again for breakfast this morning. We will try another food tonight I think. I have been nursing him first, feed him his food and he still nurses the same amount of times a day, so I think he is definitely ready. Maybe this will be the key to some weight gain!

Today we are going to a Christian contemporary music concert at church. The ladies from Moms 'n More will be selling buttons and bars for Jacob during intermission. It will be cool.

I talked to my friend Holly today. Her daughter Maya had surgery to insert a new feeding tube. She had some complications, but seems to be doing pretty good. You can visit her site at www.caringbridge.org/mi/mayam. Holly is such an awesome mom to Maya! She adopted Maya from India. We met in the kitchen at Ronald Mc Donald House when both of us were looking for a midnight snack! The neat thing is Maya also has encephalomalacia, Jacob's is cystic however. I know God was definitely involved in having the two of us meet. I really needed someone to talk to that day, and there she was :)

A story about Jacob was published in the Holmen Courier this week. I will scan it and have the copy on here soon.

Take care everyone!

Love, Karla

Friday, March 7, 2003 8:07 AM CST
Good Morning! Another busy week has gone by. Wednesday was Moms 'n More. They planned some more for the benefit. It is coming together nicely. I went and saw Crystal and Levi Wed. night. He is a cutie and so little! Jacob is actually bigger than another baby! LOL He looked so huge compared to Levi! I said even if I can only revel in this for a week or two, I am going to take full advantage of it!

Thursday we had PT again. Jacob worked hard at sitting and holding up his head. He are trying to get him to use his hands more, but right now he has no interest in holding toys at all or reaching for objects. He will reach for our faces occasionally though. He loves sucking on his hand and has figured a way to get one or two fingers in his mouth. He will suck on them all day long! :) It is really cute. He is so determined!

Button sales are awesome! I brought buttons with when Jacob had his appt yesterday and the dr and nurses bought some as well as the doctors and nurses over at the clinic I go to. I was so amazed standing there watching these people so generously hand me money. When I went to get my hair done last night, the salon also gave a certificate for a full body massage for the silent auction. It is amazing the generosity of people and businesses!!!

Jacob's appt went well. I really like our pediatrician. She still is concerned about the weight, but agrees with the conclusions of the geneticist and dietician. We will keep doing what we are doing. The fact that he is not throwing up and having diarrhea means it is staying in, he's just not gaining rapidly. She said we could come back in a MONTH. DO YOU KNOW HOW EXCITING THAT IS?!?!? LOL We usually go in every two weeks :) It is things like this that make me smile :) YEAH!!!

Today we are going grocery shopping. This weekend we have to finish the second coat in the basement so that the ceilings can be put in starting MONDAY!!! The carpet guy will come after Mike is finished, so we are going to hopefully have it all done by the benefit when we have company here to see it!

Take care and have a wonderful day! Please keep our friends Carl, Angelina, and Maya in your prayers. They are all in the hospital right now for surgeries and procedures. We love you guys :)

Please remember to sign our guestbook! I notice there are lots of visitors, but not many messages to us! We LOVE when you write to us too!

Love, Karla

Tuesday, March 4, 2003 8:26 PM CST
Crystal had a baby boy early this morning! She didn't quite meet my midnight deadline, but I'll forgive her! They named him Levi Henry, Henry after her grandpa. He was 7 lb 2oz. and 19 1/2 inches long. I had Blake overnight and Paul picked him up this morning to go see his baby brother. I was going to go the hospital and visit and then take Blake back with me, but Crystal is not feeling the greatest, so Paul's sister brought Blake back here instead. I will go visit tomorrow.

Jacob had PT and Early Childhood this morning. He worked really hard like usual. They are working on head control and reaching. The PT has been bringing in some kidney beans in a big bucket for him to feel. It is really neat.

Tomorrow I have Moms in the morning. They are going to be planning the benefit some more tomorrow. It is getting close now! One more month!

Love, Karla

Monday, March 3, 2003 11:24 PM CST
Hello everyone! We had wonderful visits today! First we went to the geneticist, and she was impressed with Jacob's progress overall, considering all that he has been through. She called him a "social flirty boy" because he was smiling and cooing the whole time we were in there! She basically said that it is a wait and see game with him, but that she won't give up on him, that he has a lot of potential, especially as bright eyed and bushy tailed as he is! LOL She also ordered a chromosome study done to see if we are looking at other disorders. She doesn't feel like we are, but mostly to rule things out. Overall, she wasn't too concerned with Jacob's weight. He has grown tremendously in length overall, and feels his energy is going there instead of for gaining weight. She said it was SO HUGE that Jacob breastfeeds so well, that babies with brain damage usually aren't able to feed at all, so I was very pleased to hear that.

We then went to CT scan, then back to Mayo to visit with the dietician. She didn't have much to add to the weight riddle because while we were there, Jacob nursed 3 times! LOL She just looked at Jacob and asked him why he wasn't gaining. It was really funny.

I got a chance to visit with the social worker and also with Deb, the nurse coordinator, both of which have been so awesome to me. They both plan on coming to the benefit and of course bought buttons!

The neurologist was very excited about how good Jacob looked and all the smiles and coos he gave her (my boy knows the right people to smile for!) She upped the dose of Topamax and kept the phenobarbitol the same, so that eventually, the phenobarb can be diluted out of his system as he grows and we can just use the Topamax. Nice progress in that area! As she left, she gave me the thumbs up and said, "I'm VERY impressed!"

It is so nice to have people on our team that GET IT. I know what normal development is, and Jacob isn't there, but yet Jacob is Jacob and so worth the celebration of every milestone.

We had some excitement tonight! My best friend Crystal called and asked if I could take Blake her son because her water broke! She was scheduled for a c-section next Mon. I guess the baby thought today was a better day! LOL Hopefully he will be born before midnight. I told her I was thinking today how someone I know has to have a baby today...03/03/03!!!

Thanks for all the prayers and support today! You are all the best!!!

Love, Karla

Sunday, March 2, 2003 9:09 PM CST
Good Evening! Last night we finished priming all the walls and put on the first coat! We are definitely getting somewhere!

We went to a pancake breakfast today with Dave's mom. It was awesome! Afterwards, we went to YES Holmen. It is where a bunch of businesses in our community gather at the high school, have a booth sharing what they do, and give out info and door prizes. Our church advertised Jacob's benefit, and some of the committee sold buttons there as well. Stephanie took Jacob and showed him off to everyone and of course, Jacob was cute as ever :)
I have added the P.O Box for Jacob's benefit under Hospital Information. He's not in the hospital, but hey, I don't know where else to put the info! LOL

Tomorrow is our big day! It is such a big step to make it to scheduled appts. Each little thing, each milestone is such an accomplishment! Our next big step is to make it to the benefit scheduled for April 5th!

We will start our Monday seeing the geneticist at 7:45 and 8:15 at Mayo Clinic. At 11:30 Jacob will have a CT scan at St. Mary's. When the nurse called Friday, she asked if he'd ever had a CT before...I was like, YEAH, LOTS OF THEM! LOL I suppose she assumed with his age that he shouldn't have had one yet! We see a dietician at 1:00 back at Mayo, and then the neurologist at 2:45.

Please keep us in your prayers tomorrow and hope for great news all around.

Love, Karla

Saturday, March 1, 2003 8:27 AM CST
Good Morning! Things are going great here! Dave and I decided to make it a goal to finish the basement this weekend. We will see how much Jacob cooperates! Yesterday, I wanted to prime some of the walls down there and got maybe 3/4 of one done because he kept waking up from his naps. Finally at 2:30 he went down and I had to wake him up at 6!!! He had to make up for all the lost naptime he had during the day I guess! The contractor came over last night with carpet samples. He told us he has time in the next 2 weeks to work on the drop ceilings and the carpet takes about 2 weeks, which will be perfect timing...we can finish painting, he can put the ceilings in, and the carpet guy can do the carpet.

Jacob continues to eat like a pig, so hopefully the scale will show some growth. The neurologist I am sure will be interested in how much his head has grown. I have been measuring it here too and it has stayed the same size for a while now. However, I am wondering if the bones aren't shifting some more, because I notice a difference in two bones on his forehead. They run horizontal and I have never noticed them before. Of course the one that runs vertical is still very noticeable. I am anxious to see what everyone says on Mon.

The buttons are in! I haven't seen them yet, but they are done. The same company is going to make the posters too, so the benefit plans are really coming along nicely. A husband to a lady that I work with at Head Start offered to donate the food for the meal! It is so amazing how people are so generous!

Remember to keep us in your prayers on Monday!

Love, Karla

Thursday, February 27, 2003 12:13 AM CST
Update on the pastor's visit:

Pastor Glenn brought over a prayer shawl. It is a new ministry our church is starting. The person that knit it prayed for our family and Jacob in particular as she knit the shawl. It is made from the softest yarn I have ever felt. I wrapped Jacob up in in for his nap today and cried as I thought just how much it meant to me knowing God's love was in every stitch. Here is the prayer that came with it:

Dear Heavenly Father,
Be with the person who will wear this shawl, each day.
Comfort and console them as you hold them in your healing presence.
May this shawl be a sign of your love and grace.
May this shawl bring warmth when they are weary.
May it surround the person and cover with love to ease the pain and suffering.
O Christ, be with the doctors, nurses and all who care for the sick.
May your strong touch reach out to heal the broken and hurting people and places in our world.
We ask your blessing on the prayer shawl and the person who will wear it.

In Jesus' Name. AMEN

Hello! Things continue to go great here! I decided to take the plunge and give Jacob some cereal this morning! He absolutely LOVED it. His arms and legs were going and he was saying HMMMMMM the whole time! He ate it right down with now problems and acted like we've been holding out on him! Now I will have to see how his body handles it. The dr hasn't said I could start it mainly because of his weight, but I really think he's ready, so we did it! He's still nursed just as much today.

PT came this morning. Early Childhood cancelled again. Jacob did such an awesome job holding his head and would turn it side to side watching Devin dancing around him. I am so excited that we are starting to see some progress. The progress is slow, but it is so incredibly rewarding at the same time. The things I used to just take for granted....

The pastor called this morning and wants to come over around 1:00 for a visit.

Monday is our big Mayo day! We will see genetics, have a CT scan done, see a dietician, and then the neurologist.
Please keep Jacob in your prayers that day. I am praying that there is nothing seriously wrong with his metabolism or absorption, thus causing the lack of weight gain. I am hoping for some answers Mon.

Take care!

Love, Karla

Tuesday, February 25, 2003 8:45 PM CST
Hello everyone! Sorry it has been a few days since I updated. I had a wonderful time on Sunday going to the movie and out to eat with Crystal and Amy. We saw How to Lose a Guy in 10 Days. It is the funniest movie I think I have ever seen. It is SOOO good! I have thought about that movie over and over since Sunday! LOL Definitely one you want to go see!

Yesterday, the Early Childhood teacher was supposed to come, but her boys were sick, so she will come on Thursday with the PT instead. I spent the day cleaning and washing clothes AGAIN (never ends around here!) and then went and got some groceries so I would have something to eat after today. I got my wisdom teeth out...all 4 of them at once. It went really well. The last one hurt a little as it was pulled, but overall it was easy. I am feeling surprisingly good and have taken Tylenol twice now and haven't had any pain, just some aching and pressure. Glad to have it done with now! My mom came last night to stay here with the boys and me today in case I needed it.

Hopefully the buttons will be available tomorrow! We shall see what happens. We are so excited about the benefit. It will be so much fun to see everyone. I have some internet friends who are planning on coming! They have babies Jacob's age, so it will be neat to meet them!

Take care!

Love, Karla

Sunday, February 23, 2003 9:13 AM CST
Good Morning! Yesterday was a much better day! We went shopping which always makes me feel better! LOL I got Jacob some new outfits and also some plain pants in navy blue, black, and gray. Do you know how hard it is to find plain pants???? He has a few shirts that I can't find anything to match with or the pants I do have for them fall off his little behind! LOL We also got more paint and primer, so look out! I am determined to get the basement done! We should hear from the contractor soon about putting the drop ceilings in.

Jacob is getting teeth. His left side is SO swollen, I wish it would just pop in. He has been such a happy boy lately, as long as mom is holding him. For a baby who wasn't supposed to recognize his own mama, he sure has his mama wrapped about 50 times around his little finger!!! He continues to work at holding up his head. Twice now he has lifted his head upright while being held in the cradle position! WOW!!!

My 2 best friends, Crystal and Amy, and I are going out for a movie and supper tonight. It should be a blast to do the girl thing! We always get together for each other's birthdays, but since Jacob was in the hospital during Amy's birthday in Oct, we never got around to hers, then mine was in Dec, so we are really behind! We are playing catch up all in one day! Plus, Crystal is scheduled for a c-section March 10th. I ask that you keep Crystal and the baby in your prayers. Crystal has MS and very often after the birth of a baby, the MS flairs again. She needs to keep very inactive and rest afterwards in order to hopefully not stir things up.

Hope everyone has a great day! It sure is bright and sunny here!

Love Karla

Friday, February 21, 2003 6:44 PM CST
Okay Stephanie, this journal entry is just for you! LOL

Yesterday, we were supposed to have PT, but her daughter was sick, so she cancelled. We went to a La Leche League meeting in the afternoon and then went to Shopko to buy Devin a Power Ranger. He was rich with the dollar that he had, so he HAD to buy a Power Ranger. I went to give him another dollar and he said, "Now can I buy TWO!?!?!" Such a concept of money huh? LOL

Today I had to bring Michael to the dentist, so Amy watched Devin and Jacob for me. It was so nice not to have to lug around 3 kids, go into the school, etc. Thanks Amy!

Jacob had a doctor's appt this afternoon. He weighed in at 9 lb 12 oz (pretty close to my guess of 9-13 huh Amy?) and got 2 shots. The doctor is very concerned with his weight and I am so sick of worrying about it. I am in a bad mood tonight because I am so sick of worrying about what is wrong with him all the time....not that this will ever end, but I am sick of it. I just wish that people could see him from my point of view. I also feel like sometimes people look at him and me with pity, and that is really the last thing I want. I just want people's support and understanding. I don't want everything to be about how he looks, what he can't do, etc. Sorry for complaining...it is just really bugging me today.

I hope everyone has a great weekend. We finished the bedroom downstairs yesterday, and will continue working on the family room next! :)

Love, Karla

Wednesday, February 19, 2003 5:55 PM CST
Hello everyone!

We have been having a great week! I have gotten the playroom painted, will finish the guestroom tonight, and then start in on the family room hopefully next! The playroom looks so awesome if I do say so myself!

Jacob had PT yesterday and worked really hard holding up his head. I am so pleased with his progress. He seems to really be stretched out more overall and not so tight. You can reach his arms over his head now and his legs lay out straight now. It takes time, but the rewards are so sweet :)

The benefit buttons are being printed this week. I put a picture on the website so you can see what they look like. They are being sold for $2 each. Please let me know if you would like to buy any! We are also asking for donations for the silent auction and raffle, so if you are crafty at all, have something you'd like to donate, or know anyone or a business willing to donate money or an item, please let me know and I will forward the info to our committee! This benefit is so exciting for us. We have had such a trying year and knowing that people care enough about us to have such a wonderful celebration of Jacob's LIFE warms our hearts beyond belief. We are as excited about it as we were for our wedding and the birth of our children. It will be a blast!

Take care everyone! Continue to pray for Jacob and also pray that his cold and cough goes away soon.

Love, Karla

Monday, February 17, 2003 7:51 PM CST
Good Evening! Jacob has made incredible gains in neck and head control over the last few days. I am so proud of him! He gets a very determined look on his face, opens his mouth and tries over and over. He wants to do it so bad! I just love to see the determination in his eyes! Before he had about 15-25% head control overall. Now it is about 50% or better. :)

We had a wonderful visit with my brother Gary and his family. My nephew Adam helped me paint the playroom and Gary helped draw/paint a tree. Today, I had the boys make handprint flowers on the wall, painted clouds, a sun, butterflies, ladybugs, ants, flies, etc. It looks so awesome! I will take pictures to share.

Jacob has PT tomorrow morning and then a quiet rest of the day. Wednesday is Moms 'n More, Thursday PT again, and Friday, Michael has a dentist appt and Jacob has a doctor's appt. Never a dull moment around here.

Remember to sign the guestbook or email me a message occasionally. I was shocked to see how many people have visited today! :) I love hearing from you as well!

Love, Karla

Saturday, February 15, 2003 9:41 PM CST
Happy Saturday!

I added the proofs of our family pictures! Remember, they are proofs...my roots really aren't that dark! LOL

My brother Gary, his wife JoAnn, and two of their boys, Karl and Adam, are here visiting. We did some running around today and then went to a benefit for a little boy here who has HUS. The benefit was at Banquets on the Sqaure where Jacob's will be. It was nice to see what they had there so I could have an idea on what ours will be like. I was surprised at how many donations the had recieved!!! I also met a woman whose son has Spina Bifida also. We talked for a long time. She too was told it would be amazing if her son made it to a year, then 6 years, then he wouldn't make it to graduation....now he is 28 years old! It was encouraging to talk to her. She gave me her phone number and said to keep in touch and not to hesitate to call.

I plan on continuing my painting downstairs tomorrow. My brother is going to draw a tree on the wall (he's very artistic.) I am looking forward to getting it all done.

Take care everyone! I hope you are all having a wonderful weekend!

Love, Karla

Friday, February 14, 2003 8:32 AM CST
Hello Everyone! Happy Valentine's Day! We got our family pictures taken last night! It was really neat to get the same poses as the ones I had when I was pregnant. Jacob cooperated at first and by the last picture, he was screaming! LOL When we were in the hospital, I had a photographer come out there and take pictures of us with Jacob. Devin decided that he was going to be a little poop that day and not cooperate. He didn't want his clothes on, he didn't want to get his picture taken, he didn't want to do ANYTHING. My sister Sandi can vouch for Devin's lovely behavior that day! Needless to say, those pictures turned out not so lovely, even though there are a few really good ones. I told Devin yesterday that we were getting pictures taken and he better cooperate OR ELSE! LOL He had the cheesiest smiles you have ever seen! I guess the threats worked! Michael is at the age where getting a natural smile is like pulling teeth, but they turned out good.

Jacob had PT yesterday and held his head up twice by himself and also held it about half way up while laying on his tummy! For being tired, he did an awesome job!

We are cleaning the house and grocery shopping today. My brother and sister-in-law and kids are coming to visit for the weekend. They haven't seen Jacob yet, so it will be nice to visit.

Take Care!

Karla

Wednesday, February 12, 2003 5:29 PM CST
Happy Wednesday! We are all feeling a little better, but now Devin has a bad cold. I swear that child has the biggest sinuses known to man! He blows and blows and still has snot! LOL Jacob is coughing somewhat and has some congestion still, but it has gotten better thank God instead of worse.

Yesterday, we had PT over. Jacob worked hard as usual. He really likes to be on his tummy and wants so badly to be able to lift his head on his own. I haven't seen any huge gains lately, but they will come with time I am sure. I think that this cold has really used a lot of his energy too which is understandable.

We have decided to start fixing up our basement. We had Michael's old sitter's husband come over the other day to do an estimate on drop ceilings and carpet. I have started painting the playroom. I am painting the walls a sky blue, and will paint an outdoor scene on it as well....you know a tree, grass, butterflies, that kind of thing. See how creative I can get! I am very excited to get it done. When you sit staring at the walls all day, you notice just how badly they need paint! LOL I figure I'd rather paint now and then if I drip paint on the floor OH WELL instead of dripping paint on new carpeting!

Tomorrow we have PT again and I have a dentist appt to see about getting my wisdom teeth out...FUN FUN.

Take care!

Karla

Monday, February 10, 2003 6:42 PM CST
Good Evening! Jacob had his Early Childhood teacher here right away this morning. It was nice for her to see him at his best. She usually sees him later in the morning and he is tired by then. Sue brought him a mylar heart shaped balloon today. He was smiling at it. It was funny. It was the first time he smiled at something other than faces.

We had a wonderful time yesterday at KidsFest. My friend Amy and her son Dakotah went too. They had games and prizes for the kids, facepainting, tattoos, and food for sale. They also had a magician and some other entertainment, including "that guy" as Dakotah calls him (Ronald McDonald!) We were able to see some of our friends from the RMH, so that was great.

I went to the dentist today to get a filling fixed. Needless to say, I am in pain. I am hoping it starts feeling better soon, because it hurts more now than it did before he fixed it. OUCH I go on Thursday to see about getting my wisdom teeth pulled too. I hope I feel better by then!

Thursday night we are also going to get family pictures taken. When I was pregnant, we had pictures taken all focusing on my tummy. Now we are getting pictures taken in the same poses with Jacob. It will be neat.

Take care and have a wonderful evening!

Love, Karla

Saturday, February 8, 2003 6:52 PM CST
Happy 6 month birthday baby boy! A whole half a year since you came into my life. I remember hearing you cry as you were quickly whisked away. I knew then that you would be a fighter. Everytime they opened the door, I would hear you crying. Not long after, I got to see the pictures of you that were taken by the nurse. What a handsome guy. I remember the first time I saw you, all hooked up to a bunch of tubes and wires, you were so beautiful. I remember all the visits to the NICU just to hold you and spend whatever time I could with you. It seems so long ago. It's hard to remember what life without you was like. You have taken all of us on a fantastic adventure, some days wonderful, other not as fun, but in reality, I wouldn't trade a second of it for anything in the world, because trading it would mean trading what I have with you and I could never want anything else but you. There are days which are so hard, but the joy far outweighs any struggles we may go through. I love you Jacob!

Love, Mommy

Jacob had his pictures taken at Sears today. Check them out at the bottom of his picture page. He's mighty handsome! I love the photographer we had. She took our maternity pictures and is so sensitive to Jacob's disability. I wanted a tubby shot since both Michael and Devin had them at 6 months, but because he can't sit up yet, for liability reasons, he can't be in one. She improvised and took one that looks like he just came out of the tub instead! The soft white one with the Gift from God tag is going to be the one we use for the benefit buttons. She started crying when she looked at it. It couldn't have been more perfect! The photographer was also really good about helping position him and his head. It really meant a lot to me to have someone so caring and understanding.

Please keep Jacob in your prayers as he has his first cold. He is coughing more today and his nose is stuffy. I am trying to keep myself focused on it being okay, but it scares the hell out of me.

Take care! We are off to the KidsFest for RMH tomorrow. It should be fun!

Love, Karla

Friday, February 7, 2003 10:52 PM CST
HERE I AM! On Wed, our hard drive crashed, and so finally today, Dell sent a new one and it was installed. I can't believe how much I rely on the computer! I felt so lost without it! :)

Anyway, we all continue to do well. Jacob has a little bit of congestion and a cough. He is able to cough at least, so hopefully he will loosen it all up and be done with it. He saw the dr. today and she said to keep an eye on it, if he gets short of breath, really wheezy, or a fever to bring him in. It's not that bad, but you can hear it rattling a little in his chest. I told the nurse that I need to balance when to worry, with just normal baby/ childhood stuff. That is a big challenge. The things I never even thought of with the other two, mean a lot to me now.

Jacob weighed in at 9 lb 8 oz and 24 1/2 inches long. He grew an inch since the last time they measured him. His head also grew a cm in circumference. He got the flu shot and synagis today. He also had blood drawn for some labs Mayo needs, so he was not a happy baby today!!! We go back in 2 weeks to do another weight check and then in another 2 weeks for synagis again. We will also be going to Mayo on 3/3/03 for Spina Bifida Clinic. So many appts!!! I hope they slow down soon. I feel like we run ALL week long.

Tomorrow is the big 6 month birthday!!! WOW We go in at 1 for pictures. I am looking forward to that!

I will update you all tomorrow on how the pictures went and I may even scan the proofs so you can all see :)

Love, Karla

Tueday, February 4, 2003 9:27 PM CST
Good Evening! I had my eye appt. They didn't completely check me in, so I sat there waiting and waiting, finally asked what was taking so long and so they said OOPS! I got in really fast then and out even faster! That's okay, because I hate having my eyes checked!

I talked to the Spina Bifida coordinator again today. I really love this woman. She totally understands our position on Jacob's care. We feel that even though this is something we never would want to happen to our child, it has, therefore we need to make the best of it. Jacob deserves that. We also feel that every milestone is huge and deserves a celebration. Dave and I both know that Jacob is different developmentally from the other two boys, but Jacob is Jacob and that is what matters. I thank God every morning when I wake up that Jacob is still here with us, and thank God every night for giving us another day. Going through all of this...finding out about his spina bifida, having him early, all the surgeries, nearly losing him from the meningitis, more surgeries, and finally taking him home again, has put life into such a different perspective for me. I was sharing with my moms group how I feel such a peace around me. It is hard to really explain or put into words, but it is an awesome feeling. I truly believe that your prayers have helped all of us immensely. I took this off of Carl's website and oh how true it is...thanks Kelly for the uplifting words you always post!
As it is written:
No eye has seen,
no ear has heard,
no mind has conceived
what God has prepared for those who love him
but God has revealed it to us by his Spirit.
1 Corinthians 2:9,10

Good night everyone!
Love, Karla

Monday, February 3, 2003 6:32 PM CST
Hello everyone from snowy Wisconsin! WOW. We woke up to freezing rain this morning. School was closed, so Michael was thrilled. It began snowing around 12:30 and before you knew it, there were HUGE flakes coming down. The boys spent most of the day outside playing. Their coats and snowpants were soaked! I remember how much fun it was to play outside when I was little.

At supper tonight, I put Jacob in the highchair. We have one that reclines. I thought it would be great practice at having to hold his head up a little better. Plus he loves to be in the midst of everything :) Anyway, everytime we'd say, "How big is Jacob? SO BIG!" He'd raise his left arm! It was so funny!!! To see the connection between what we are saying and what he can do is amazing! :::Proud mama here:::::

I am hoping tomorrow brings better weather. The early childhood teacher had to cancel her visit today because of the ice. PT is supposed to come in the morning. I have an eye appt tomorrow as well so I can get more contacts! Me and glasses don't get along anymore! Stephanie has volunteered to watch the boys for me. Thanks Stephanie!

Please say a prayer for our friend Zane and his mom Cheryl during Zane's stem cell harvest and transplant. Our friend Maya is also going to Chicago tomorrow for appts, so please say prayers for her health and safety as well.

Take care everyone and good night!

Love, Karla

Sunday, February 2, 2003 7:41 PM CST
Happy Sunday! We had an all around boring day. Kinda nice to have those every once and awhile. It rained here today. The roads were a little slick, but not too bad. Dave and Michael went to the store for me because I forgot so many things yesterday. Jacob was fussy in the store and I just wanted to get out of there! Of course he slept the whole way home! UGH Anyway, now I know why I don't normally take him with me!

Jacob is so darn cute lately. We are working on SO BIG to get his arms stretched out. He will do it, but get so excited he forgets to breathe sometimes! It is funny. So anyway, tonight I was getting him ready for bed and he got a really playful look on his face and raised his hand over his head, as if to tell me "SO BIG!" I laughed so hard :)

We have Early Childhood coming in tomorrow morning and PT on Tues. I have an eye appt on Tues too, but need to find a sitter first. Wed we have Moms 'n More, Thurs PT again, and Friday Jacob's 6 month well baby check up!!! On Sat. we celebrate his 6 month birthday. We are getting pictures taken that day. What a wonderful, wonderful feeling it is to make it this far! We never thought we'd see his 2nd month birthday and here we are at 6 months!!! Then on Sunday, we are going to Rochester for KidsFest to help support the Ronald McDonald House. Anyone interested in going can check out their website. I have the link at the bottom of our website.

Take care!

Love, Karla

Saturday, February 1, 2003 9:31 AM CST
Good Morning!!! Dave and I had a fabulous night away last night! My friend Angie took Michael and Devin back to her house to play. Devin is so in love with Angie. He was bugging me all day about going to her house. At 3:00 he had his coat on (she came around 4:30!) and then told me, "Boy am I sweaty!" I said, "Take your coat off then!" He was definitely excited to go!!! I am sure they are having a blast out on her farm. Devin is probably chasing the chickens around!

My friend Stephanie from my moms group emailed yesterday and said she would love some cuddle time, so she took Jacob last night. It is hard for me to trust a lot of people with his care, but Stephanie is great, so Dave and I were able to relax and enjoy ourselves! We went to the movie, "The Ring." GEEZ that is so freaky!!!! I am still trying to figure it all out!! WOW. The theater we went to has tables and you can order food, so we got a pizza. It was so much fun to just be the two of us again. You forget sometimes how important that time together is. Thanks Stephanie and Angie! You guys are GOLD!!!

I had a drs appt too yesterday morning, so Devin and Jacob went to Penny's house. Penny is our daycare provider we had when I worked. So Jacob got a lot of loving yesterday!!!

Not too much planned today. I need to get a package mailed and we need some groceries. Dave is out fishing at a fishing tournament on Lake Onalaska. Otherwise it should be a quiet day. (Hopefully I am not jinxing myself!) Next weekend we have Jacob's pictures and the Ronald McDonald KidsFest in Rochester. I am really looking forward to it!

Take care!

Love, Karla

Thursday, January 30, 2003 at 07:12 PM (CST)
I added new pictures! Jacob is mighty cute!!!

Jacob had PT this morning and he did a great job holding his head up. That is my biggest goal for him right now. Hopefully by 9-12 months he will have head control.

I took Jacob to the dr today for his rash. He was put on Diflucan for the yeast and also some nystatin cream with a steroid in it too. Hopefully that will curb this. It has gotten ridiculous.

My friend Angie offered to take Michael and Devin tomorrow night. Dave and I are going to go out for supper and maybe a movie.....that may be wishful thinking though, depending on how Jacob does. It will be nice! Thanks Angie!!!

Love, Karla

Wednesday, January 29, 2003 at 07:31 PM (CST)
Good Evening! Jacob is hanging out on my lap, yawning and smacking his cute little lips :) He is very intrigued with the computer screen. I think he is telling you all hello! :)

We went to Moms 'n More today. I so enjoy going every Wed. We have such a phenomenal group of ladies. It is a wonderful place to talk about your own personal journey with God, share stories of faith, cry (which we do a lot of thanks to me! LOL) and bond as mothers and as women. I feel so renewed each Wed. I think it is really good for my soul and healing from all that we have been through this year. This group of ladies is responsible for planning Jacob's benefit. It is totally uncomprehensible to me how caring people have been.

Tomorrow we have PT in the morning and Jacob has a dr appt to check his rash and get some medicine for it. I talked to the Spina Bifida Clinic nurse coordinator today for over an hour about how Jacob was doing and she really encouraged us to get the rash taken care of. He will see a dermatologist in March as well.

Have a great night!

Karla

Tuesday, January 28, 2003 at 12:08 PM (CST)
Hello everyone! We have another busy week. Michael had a dentist appt and Boy Scouts yesterday, today we had PT and will have a La Leche League family meeting tonight, tomorrow we have Moms 'n More, Thursday is PT again and another La Leche League meeting, and Friday I have a dr's appt.

We are enjoying our days. I am getting into a nice routine with everything. The teacher in me is missing teaching, so I have started planning activities for Devin. He painted the other day and then the next day, I traced hearts on his painting and he cut out hearts. We are working on writing his name, which he does amazingly well at. Today we cut out circles and made a snowman. It is really cute! I found out when the library has story hour so I think we will start doing that as well.

Jacob is doing wonderfully. He was a little messed up on his schedule over the weekend, but is now back to sleeping through the night and taking his 2 nice naps during the day.

Jacob's benefit is planned for April 5th at Banquets on the Square in Holmen. Our family would really appreciate it if you were able to come! I will add details as the planning gets underway. I am so excited about it! What a wonderful way to celebrate such a beautiful little boy!

Love, Karla

Saturday, January 25, 2003 at 09:43 AM (CST)
Happy Saturday! The weeks are flying by! And the best part is we are still home! I hope you are all enjoyed Jacob's pictures! If you look at his diaper shot, you can see where his shunt tubing goes down his chest into his tummy.

I am pleased to say Jacob is really growing. Yesterday, I put on his pumpkin outfit from Halloween and he totally fits into it now! I don't have to roll down the top of the pants or roll up the sleeves. All his sleepers are fitting him so much better too. I actually put away some clothes and socks (they were preemie and newborn sizes, but doesn't that still count? LOL) and he is wearing all 0-3 month clothes and some 3-6 month. I think by spring and summer he will be able to wear Michael and Devin's old clothes. Weird to think that the boys were born in the spring and Jacob will be wearing the same clothes they were at 0-4 months as Jacob will at almost a year. Oh well...saves on money anyway! I have so many cute outfits that need to be used again!

Jacob's hair is really growing too! I am surprised at how long it has gotten considering half his head was shaved. It is about an inch long now and is coming in blonde. I can't wait until it is long enough to cover up the shunt.

We go in on February 7th for another check up with Dr. Brumm. She is on vacation now, but called before she left. It is so wonderful to have that support. The diaper rash is basically gone thanks to some emails I received. Stupid me forgot that I had this paste the hospital gave us when Jacob had a really bad rash from the antibiotics. The stupid part is it sits right on his changing table and I never thought to use it. How dumb is that? I must have a home mind and a hospital mind....when I am home I forget all about the hospital! LOL So thanks everyone for the good ideas! Now I just have to figure out why he keeps breaking out all over his tummy, arms, legs, and neck periodically. I can't use any soap when I give him a bath, I can't use any lotions except I did find some excema cream that seems to help as well as some other thick cream that works, and I can't use fabric softener. It flairs up every couple of days. It was really bad after he was on Augmentin, so now I wonder if he's allergic to that. I also wonder if it is something I am eating that gets passed into the breastmilk? Anyone have ideas on this? I may ask to see a dermatologist at Mayo.

I have scheduled Jacob's 6 month pictures for Feb 8th at Sears. I can't believe he's getting so old already, but yet it feels like he's been here forever! I want to do the tub shot since Michael and Devin had those done at 6 months, but Jacob is so little and not sitting up. I may see if they can somehow rig it so I can still do it. Does anyone have any cute ideas on pictures or poses to do?

Have a great weekend!

Love, Karla

Thursday, January 23, 2003 at 10:01 AM (CST)
New pictures have been added!!!

Guess what? Jacob gave us three belly laughs last night!!!
My heart is smiling :) It is so wonderful to be reaching these milestones!!!

We went to Moms 'n More yesterday. It is so fun getting together with this group of ladies! They have offered to have a benefit for Jacob in April. I am so shocked at the generosity of everyone!

We had PT and Early Childhood here this morning. Jacob was tired and fell asleep at the end! He did some good work though!

Not much new to report....just had to tell you all about the laughs!

Love, Karla

Tuesday, January 21, 2003 at 10:27 AM (CST)
Hello Everyone! Another cold day here in Wisconsin. I prefer to stay inside! We had PT this morning. Jacob was a little fussy , but did work hard. If Julie holds his hips, Jacob is able to lift his head a couple inches off of the floor! He wants to do it so bad! When you hold his head up for him, he looks so darn cute looking around :)

Poor little guy has had diarrhea ever since he took that Augmentin after his circ. He took three doses and it sure messed with his system. It's getting better, but he still poops around 4-5 times a day. His butt is so red :(
I've been putting vaseline on it today and it looks a little better so far.

I have really seen some nice changes in Jacob overall. He seems to have matured a lot both physically and developmentally lately. He just seems different all of a sudden. I am hoping this continues! It's weird because normally when you have a baby, you want them to slow down, and not grow up so fast. I am so looking forward to Jacob growing up!

Love, Karla

Sunday, January 19, 2003 at 09:56 PM (CST)
Good Evening! We had a nice weekend. I went out shopping yesterday and took my sweet old time! It was so nice to go out without ANYONE but little old me!

Today, I had a visit from my friend Tammy. It was great to see you again!

Jacob decided that he didn't need to sleep today. He maybe napped an hour total. I gave him a bath tonight and he screamed when I took him out. He sure loves his bath! He seems to be healing really well from his circumcision. I think he may be getting his bottom teeth. I have noticed little white spots on his bottom gums for quite a while, but now they look different. If you rub his gums he really likes it and just about bites your finger off. So I wouldn't be surprised if he got them within the next month.

I was reading through the guestbook entries again last night and I got all teary-eyed reading all your responses to us. It has meant the world to us knowing that people are here for us and that your prayers are always present. I feel so lucky to have so many wonderful friends and family.

We have another busy week ahead. PT and Early Childhood come out this week as well as Moms 'n More group and La Leche League meeting.

I was reading on the Ronald McDonald House website that they are having a Kidsfest on February 9th to raise money for RMH. We are thinking about going. If you are able to attend as well, I encourage you to go!!!

Love, Karla

Friday, January 17, 2003 at 11:57 PM (CST)
Thought I'd write since I am up late tonight! I just finished feeding Jacob. He sure has turned into a little porker the last few days! He is now up to 9 lb 6 oz! Up another 4 oz in 2 days!

We had Jacob's IFSP yesterday and set some new goals for him: total head control in all positions, continuing rolling over, work on sitting, holding his head up while on his tummy, holding a toy in his hand and putting it in his mouth, unfisting his hands, and playing some cause and effect games, peekaboo, pat-a-cake, etc.

Today we went back to the dr because he had some bleeding from his circumcision. She said it looked fine. I was also worried because he had diarrhea last night and of course had poop everywhere! We know what happened the last time bacteria got in his urinary tract....I don't want to go there again!!! The dr reassured me it should be fine, just to watch for signs of infection.

We went to WIC today too and they were very supportive and helpful in ideas for helping him gain weight. We are unable to get the breastmilk fortifier covered by MA or WIC, so instead, we are getting a high calorie formula to add to his breastmilk 2-3 times a day. I had a hard time with the thought that he wasn't gaining solely from nursing, but then I also thought it is much better to substitute a couple feedings with a bottle than to have to get a feeding tube which would probably be the next step. I find that I am beginning to face some tough decisions with Jacob's care at times....from when to immunize, when or if to circumcise, how to have the circumcision done, and what method of feeding will make him gain weight. I also find that I get very defensive of my choices, especially when people question my decisions. I know everyone means well, but I also have educated myself on what is best for Jacob. I don't take these things lightly. And at the same time, I also realize that the decisions made for Jacob are fitted to his needs, needs that are TOTALLY different from what Michael and Devin need as healthy, normally developed children.

I am looking forward to a nice relaxing weekend. I plan on doing some grocery shopping tomorrow. On Sunday my friend, Tammy, and her son, Gabriel, are coming for a visit. It will be nice to see them again!

Have a wonderful weekend everyone!
Karla

Wednesday, January 15, 2003 at 08:20 PM (CST)
Good Evening!

Today went very well. Jacob had a shot of morphine and then was hooked up to the blood pressure machine for a while before the dr got there. He had his circumcision with no problems at all. He didn't even cry. The dr thought it went so well she said she might offer that more often to parents. He slept for quite a while afterwards, but it was his normal naptime as well. He hasn't seemed to be in pain at all and hasn't needed any Tylenol. Dr. Brumm did give us some augmentin antibiotic to take today and tonight, just in case. Otherwise, Jacob has been as cute as ever today :)

I can't believe I almost forgot to tell you! He weighed in at 9 lb 2 oz today!!!! The doctor was shocked and told Jacob we were going to have a party for him! :)

Tomorrow, we have Jacob's update on his IFSP, his Individual Family Service Plan, for the Birth to Three program. We are going to review his goals and add more goals as appropriate. Dr. Brumm was pleased with his progress so far and said he may just surprise us all :)

I ask that everyone prays for our little buddy Carl Robinson. He is in the hospital fighting a fever/infection and could really use your prayers. I also ask that you keep his mom Kelly in your prayers....it is so hard on us moms.

Love, Karla

Tuesday, January 14, 2003 at 10:05 AM (CST)
Good Morning! We have had some lazy days around here. Yesterday, we stayed home because it is way too cold outside. Jacob decided he wanted to eat ALL day long. He acts like he is starving. Today we had PT come over. He was really fussy this morning for her. I am hoping he isn't coming down with anything. I have a weird feeling that something isn't quite right, but yet there is no physical indications that something is wrong. He seems to love his gums rubbed, so I am wondering if he is getting some teeth. Maybe that is where the fussiness is coming from. I can calm him down though, so I hope everything is fine!

Tomorrow we are going to have him circumcised in La Crosse. I asked the dr. if we could have it done there so that I don't have to go up to Mayo on a Monday morning and be there at 6:30. She said there was no problem with that since he is the size of a newborn anyway. So since an UTI turned into meningitis and the fact remains that we will probably have to cath him in the future, we decided to go ahead and have him circumcised. I will miss my Moms group tomorrow though. I really enjoy going there!

Please keep Jacob in your prayers tomorrow and also pray that he continues to stay healthy!

Love, Karla

Sunday, January 12, 2003 at 09:19 AM (CST)
Good Morning! We have exciting news!!! Jacob rolled from his tummy to his back ALL on his own! We are so proud of him! The last few days we have really been pushing him to roll. If we support his back, he will use his head and grind it in the floor and then uses his hips to throw himself over. It is so amazing :) Dave and I were having him roll back and forth with help and then all of a sudden without any help, he rolled! We both had to ask each other if we saw that! LOL He loves laying on his tummy and wants so badly to lift his head up. If I put my hand on his forehead for support, he loves to look around. Without my help, he can lift it maybe an inch. He gets so frustrated because he knows what he wants to do, just can't do it!

We had a nice getaway last night. Dave had his work party so our friends Colleen and Karl came over to babysit. It was our first date without kids since before Jacob was born, so it was nice! We had a nice steak supper and they had a comedian for entertainment. It was really fun.

We are going to church this morning for baptism Sunday. This is where they celebrate the baptism of our Lord and also give a special blessing to those baptized this past year.

Hope everyone has a great day. We have another busy week planned!

Love, Karla

Friday, January 10, 2003 at 10:11 AM (CST)
It's Friday already! The weeks have been flying by. We have now been home longer than we were in the hospital for our 2nd visit! All these little milestones are so huge! Jacob had PT in the morning yesterday. He is so funny how he starts fussing and all Julie has to do is start talking to him again and he's happy. If that doesn't work, the crinkly foil paper always does! I don't understand what his fascination is with that paper, but he loves it!!!

Jacob had another weight check yesterday, along with shots. He is back up to 8 lb 14 oz. He just doesn't want to ever see 9 lbs on their scale I don't think! He was 9 lb 5 oz at Mayo, but that was with clothes and a diaper on.
The dr and I are worried about it and so we are really going to push filling up his tummy. We are not sure what is happening since he eats roughly 8 times a day. We are not sure if he is expending energy somehow still as a result of the infection or if he is just eating until his tummy starts to feel full and stops. So our next venture is to add fortifier 3 times a day and top off nursings with a bottle if possible. I want to avoid a feeding tube at all costs right now.

Jacob also got his RSV shot and finished playing catch up on his others. He cried a little but forgot about it pretty fast. Devin got his 2nd flu shot and boy was he funny! He got out of the van and said, "Am I getting a shot today?" I think he knew! As we walked into the clinic he said he wanted 2 shots because he didn't want to get sick again and that he wasn't going to cry. When he saw the nurse he told her all about how he wanted a shot, 2 shots, and he wasn't going to cry. It was hilarious. Then as Jacob was getting weighed, he kept asking her where his shot was. I said, "I bet you have never had a child beg for shots before!" Usually the shots are at the end, but he demanded that she get it right away. He sat up on the table and looked quick under his pants and said, "yep I've got dunnerwear on today!" Remember last time....nature boy forgot his underwear! I had to laugh, so did the nurse! So he got his shot, he cringed a little, but he didn't cry!!! He was SO proud of himself and everyone in the clinic soon found out that he didn't cry.

There are new pictures today! Make sure you check them out and remember to sign my guestbook! I enjoy hearing from all of you!

Love, Karla

Wednesday, January 08, 2003 at 09:29 PM (CST)
Happy 5th Month Birthday Baby Boy! I am so glad we've made it this far! It seems like a lifetime ago that you were born. That was a happy, scary, and sad day all wrapped into one. But you are here with us and we are thrilled at how far you have come. We love you more each day.

We've had another busy week. We had Mayo appts on Monday, PT on Tuesday, my MOMS 'n MORE group this morning, and a appt with the ped. tomorrow for shots and follow up. Jacob is getting his RSV shot every month. Devin gets his 2nd flu shot tomorrow. He was supposed to get it 2 weeks ago, but he was running a fever. I am not telling him until we are in the dr's office or we won't be able to get him in there! Friday will hopefully be a quiet day.

Devin and Michael got The Little Rascals movie and have been going around repeating all the lines. My favorite though is when Alfalfa sings "You are so beautiful." That goofy song reminds me of how I feel about Jacob and I smile everytime that part comes on. I always say to him, "Hey beautiful!" He's got the goofiest shaped head, but you just can't help but love him! :) I am surprised that he doesn't have a huge red mark on the bony part of his forehead from all the kisses I give him in a day!

Once again, I want to thank you for all your love, support and prayers. I really don't know how we would have gotten through this without all your help. It means the world to us knowing people care.

Love, Karla

Monday, January 06, 2003 at 09:39 PM (CST)
I hope you are sitting here with a good cup of coffee or your favorite drink because this is going to be a long update! :)

We started our day going to the Ronald McDonald House to drop off some poptabs. (Please note the link to RMH at the bottom of the page.) We were also looking for our friend Lea, but she wasn't there. We went over to the hospital to say hi to everyone and luckily a lot of our favorites were there! Devin was thrilled to see the Blue Power Ranger (aka Tom the PICU flight nurse who wears a blue flight suit)and I was able to visit with some of the Child Life staff who were SO supportive of our family, especially the boys down in the playroom. We weren't able to find Lea at the PICU either, so I was disappointed. We walked down to the playroom where we saw Kelly and Carl Robinson, two more friends from RMH. Kelly finally got to hold Jacob which she has been itching to do :) It was SO wonderful seeing you today Kelly!!!! Carl was as cute as ever! We then went to sit down in the waiting area to nurse Jacob when we ran into our all time favorite dr, Dr. Katherine Nickels. She was at St. Mary's when Jacob was transported there at birth and she has always been one to talk to me and support me in anyway she can. She also gave us 3 outfits when Jacob was in the hospital the 2nd time. After this we left for lunch. As I got out by the ticket booth, Lea called me and said she was at the hospital and wanted to see me, so after eating, we went over there and parked in front of the hospital and visited a few minutes. It was great seeing her.

Next came Jacob's appts. He saw Dr. Kramer in urology. He was pleased with how well he was going on his own and didn't see a need to repeat any bladder tests until spring. No cathing yet!!! YEAH! He also scheduled a circumcision for Jacob for the end of the month. Considering that a UTI turned into meningitis, it is basically a very good decision to have it done to reduce any risks. And since we may be cathing in the future, it is best to get it done now.

Neurology was our next appt. Dr Kuntz was VERY pleased with his progress. She says all the things we are seeing are good signs. No seizures, meds are doing their job, and developmentally he is beginning to change. She noted that she has seen patients with this sort of brain damage never socially smile and for us to get smiles out of Jacob already is WONDERFUL. She wasn't overly concerned with his weight, considering he eats well. She is willing to give it time.

Dr. Shaughnessy from orthopedics said he is going to be on the back burner for a while until Jacob develops more. He checked his hips and they are not dislocated which is good. He doesn't see much movement or sensation below the knee which is what we notice as well. Movement is mostly using the hip flexors, but he has moved his feet upwards on occasion. He feels that his level of function is L1 (lombar area of the spine) which is a little high, but with the occasion movement of his ankles, may be as low as L4. The affected area of his spine, which is the defect area, is from L1 through the sacral area (the taibone.) He has seen children with this large of area occasionally walk, but mostly a wheelchair is an easier way of getting around. We already are aware of this possibility and are fine with it.

Social services visited next. Carma was one who came into the hospital and visited with us, so it was nice to see her again. She was so pleased that we have stayed home this long, and admitted she didn't think we would have stayed home. I told her I didn't either! We also talked about how during our hospital stay, it seemed like this whole thing was a useless case...that Jacob would more than likely die, it was just a matter of when and how far we wanted to pursue treatment. I stated the fact that I feel I deserve at least somewhat of a recognition stating how surprised they are he is doing so well, or acknowledgement of how far he has come. Not much has ever been said except by Dr. Kuntz. It is also like I wonder if I can breathe yet and somewhat relax, can we actually feel like we are somewhat over this initial infection and ramifications from it...she totally understood what I meant because she said from what everyone was saying initially, Jacob wasn't going to make it....

Our last visit was with the developmental specialist, Dr. Voight. He felt Jacob is functioning at a 6 week to 2 month level overall. Gross motor skills are low, but he said that anyone who lies in a hospital bed for as long as he did would be the same way. He also referred us to the geneticist for evaluation because so much of what Jacob has makes no sense. He has calcifications on his brain which means a TORCH infection occurred inutero, yet we test negative for it. The other explanation would be if I smoked or did crack cocaine, which I DEFINITELY didn't do. The only other explanation is a poor placenta which didn't allow him oxygen over the entire pregnancy. The placenta appeared fine at birth. Then comes the matter of his weight and lack of growth in that area. It doesn't match with the amount he is eating and the fact that he is growing somewhat in length and shows signs of hunger (actually he darn near attacks me! LOL) The other very interesting fact he shared is that he has NEVER seen a child with both spina bifida AND cystic encephalomalacia. This is coming from a man who works at MAYO, who has done research and written books. SO Jacob IS special....more so than we already knew!!!!

After this busy day, I went back to RMH to visit with Lea some more and so that Devin could see Dylan, her 6 year old son. We had a wonderful visit. Another lady from Spain who has been there for quite some time with her son came into visit as well. I can't tell you how uplifting it was to see everyone. It has totally renewed my spirit again. I truly love all the people I have met there and I feel such a true connection to them all. Even though we may all be facing different struggles, they are all so much the same, because we are all fighting for our children. By doing this, we all become a family. It is the most intense and totally incomprehensible bond. I miss everyone so much when I am home. Even though home is the best place to be, I find myself missing the closeness of others who truly understand.

Well, hopefully you have made it this far! We had an incredible day. We will be going back Jan. 27th for the circumcision, March 3rd for the geneticist and a followup visit with the neurologist, and sometime in the spring for a repeat bladder ultrasound. It is wonderful news that we can go so long between visits!!!!

Take care and thanks so much for all your support and prayers.

Love, Karla

Sunday, January 05, 2003 at 09:26 PM (CST)
Good Evening! I write this in hopes that everyone will say a special prayer for Jacob tomorrow when he goes back to Mayo. This is a special day for us. Last time we were scheduled to go to Spina Bifida we ended up in the hospital 2 days before our appts. Jacob will see doctors he has never seen or been evaluated by since his birth. We go with mixed emotions because we hope for the best, but know that we can never expect everything to be 100% okay. That is one life lesson I am in the midst of learning and some days it is a hard one to swallow. But at the same time, I have also learned to take one day at a time, not project too far into the future, and enjoy Jacob for who he is, not for someone he "should have" been. I also know that God is here with us every step of the way and He will never leave us. So on that note, please say prayers for Jacob tomorrow.
His appts are from 1:00-4:00.

Love Karla

Saturday, January 04, 2003 at 11:19 AM (CST)
Hello Everyone! Things continue to go well. Hard to believe I can actually say that! On the 14th, it will be 2 months since we came home. I am amazed. Jacob's personality is really blooming. He has figured out that if he cries, mommy falls for it everytime. So if I even try to put him down, he starts to cry, a whimper at first and if I dare to ignore it, he has started to cry louder. It is really funny how quickly they learn that. When I pick him up, he is all happy again! It is so neat how he smiles everytime you start talking to him. At first he smiled maybe once a week, then once every couple of days, then once every day, now it is all the time. He crinkles up his nose so darn cute when he is smiling really big. If you start cooing at him, you get the best smiles and he coos right back. Today the dog was by us when I was holding Jacob, so I took his hand and petted the dog. Jacob was smiling! If I'd stop, he'd fuss. He is so funny! Every day I thank God for letting me be a part of Jacob's life. Everything Jacob does is so special, it is hard to even explain it. He is thriving. Yeah, he may not be where a 5 month old should be but as we say, he is just Jacob and that is all that matters. My friend Tracey, who's daughter Angelina was in the NICU with Jacob, emailed me the other day and commented on how she can't wait to see what God has in store for our children.... How true that is! I feel so blessed that God chose me to be a part of this miracle.

Love, Karla

Thursday, January 02, 2003 at 04:05 PM (CST)
Happy Thursday! Jacob continues to do very well. We have had some nice quiet days around here. PT came today and worked with Jacob. He does really well with her. Usually he cries when people start "messing" with him, but Julie can really calm him down easily and gets lots of smiles out of him.

Devin was sick for a week and is now finally looking better, but has a runny nose and cough. Hopefully it will be gone soon.

Michael went back to school today. He had a nice vacation, but wasn't ready to go back yet. I remember those days....

We changed our internet provider today, so please note our new email address.

Love, Karla

Tuesday, December 31, 2002 at 09:58 PM (CST)
I have tried putting a new journal on here twice in the last couple days....I will try again!

We had a nice service for Jacob's recognition of Baptism. He was baptized the day he was born "just in case." Our pastor came up to the hospital before he was born and prayed with us and then stayed with the family while I was in the delivery room. He then baptized Jacob before he was transferred to St. Mary's. We had some family and friends over after the service on Sunday for lunch. It was nice to visit and see everyone again.

Jacob's Early Childhood teacher came over yesterday and his PT came over today. He seems to be getting better at holding up his head while on your lap. He needs to work on holding up his head while on his tummy. He can lift it about an inch and can turn it side to side. He'll get there!!! We took a bath again tonight and Jacob just screams when he has to get out. He loves the bath.

We go back on Mon to Mayo for Spina Bifida Clinic. Jacob will see urology, neurology, orthopedics, developmental specialist, and a social worker. It will be another long day. I am glad I am off work right now because he has so many appts all the time. Hopefully as he grows, he won't need to go so often. I am hoping to find someone to go with me on Monday. I hate going by myself. I am planning on stopping at the Ronald McDonald House to drop off poptabs and see if any of my friends are still there. Please remember to save your tabs and bring to your local RMH!!! The house in Rochester makes $10,000-12,000/year alone on just poptabs!!!

I have some prayer requests. Please pray that Jacob begins to gain some weight and that his shunt continues to work. I also ask that you pray for some of the children I met at Ronald McDonald House and St. Mary's.....Carl, Zane, Maya, Damien, and Angelina. All of them have their own personal battles they are dealing with....cancer, upcoming appts, and surgeries. Pray for healing and strength for them and their families.

Love, Karla

Saturday, December 28, 2002 at 10:31 PM (CST)
Today I turned the big 31! I feel like I have aged about 10 years since all of this started with Jacob. Mostly to the best though!!!

My mom and 2 of my nephews came down today. We went out to eat Chinese for lunch YUM and then went and got some things for our lunch tomorrow. We spent the rest of the day visiting and watching movies. It was a nice birthday!

Tomorrow is Jacob's recognition of baptism. It will be a wonderful blessing and relief to have this done. Each new phase, each new step toward developing a life with Jacob is so rewarding. He is teaching us so many values of life and love, it is amazing. I will update you all about our big day tomorrow!

Love, Karla

Friday, December 27, 2002 at 07:47 PM (CST)
Happy Friday! Jacob went to the dr in La Crosse yesterday for a weight check. He lost 1 1/2 oz, so he is down to 8 lb 12.5 oz. Not sure what the heck is going on. He has grown in length though and is now 23 3/4 inches! If he hasn't started gaining weight by next visit on January 9th, Dr. Brumm is sending us to an endocrinologist to do some tests. Sometimes when a child has numerous issues, especially neurological issues, the messages to grow just don't always get to where they should, so we shall see what happens. I myself feel like he is a good eater, but we may have to do some experimenting again with human milk fortifiers and pumped milk in a bottle.

PT came by this morning. Jacob appears to be so much stronger in his torso and is holding his head up a lot better on his own. If it starts to flop, he is correcting it and pulling it back up a lot better now.

This Sunday, we are having Jacob's recognition of baptism. We had him baptized the day he was born and now we want it recognized in the church. My oldest niece, Kelly, my oldest nephew, Justin, and one of my best friends, Amy and her husband Kevin, are his Godparents. We are looking forward to it! We planned it for Oct before, but of course Jacob was in the hospital. Please keep Jacob in your prayers this weekend!

Have a wonderful weekend!

Love, Karla

Thursday, December 26, 2002 at 08:39 PM (CST)
Merry Christmas to all of you a day late!!! We had a wonderful Christmas, a Christmas full of presents, togetherness, and wishes come true. Jacob's first Christmas was spent at home, and my prayers were answered! All I have wanted is to make it through Christmas at home. I think back on those dark days in September when we were told to make a decision on what to do, and I am so happy that we chose to fight for him. I pray dear Lord that Jacob always knows how much we love him. I want him to know how much joy he has brought to into our lives, even to those who have never yet met him. I also realize that he may never understand these things fully, but please Lord help him even now to understand this: Help him to know how much he is wanted, no matter what his abilities or disabilities may be. I pray that we are given many more "normal" days, days filled with hugs and kisses, smiles, and grins.....days filled with sweet dreams, and snuggles in mama's arms...days filled with endless love. May his life be filled with such happy times, Lord, that the memories will bring a smile to his face and a reassurance to his heart that he was wanted, and that he was loved.

Love, Karla

Sunday, December 22, 2002 at 10:09 PM (CST)
Hello everyone! Christmas is going to be here soon and I think we are ready! I finished getting a few things for the boys yesterday. We are going to have a wonderful Christmas I think! I decided to have an easy Christmas Eve supper, so we are going to have cheese and crackers, chips and dip, and pizza. Doesn't that sound fun??? We are going to church at 5:00 and then have supper and open presents. Christmas Day we are going to have a burgundy spoon roast :) I decided we are going to break the tradition a little and have something different this year!

Jacob continues to do really well. His cry has changed a lot lately as well as his "look." I can tell he is maturing, even though his size doesn't indicate that at all! He has been nursing so much though lately so hopefully he is going through a growth spurt.

Last night Jacob woke up around 11 and ate. I put him back down around midnight and he slept until 8 and that was because I woke him up! WOW He is a really good sleeper! He makes up for the eating though when he is awake. I feel like he is constantly attached to me, but that's okay :)

Love, Karla

Friday, December 20, 2002 at 10:51 PM (CST)
Happy Friday! We had a wonderful day! I am so looking forward to Christmas now. I think the kids are more than psyched up for it too.

We went out for supper tonight and then went and got the boys hair cut. They were so shaggy looking and hadn't had a haircut since all this craziness started. Devin told the lady that he wanted his "hair dickin' up! You know like my friend Dylan!" He loves Dylan from the Ronald McDonald House!

We got the BEST Christmas present tonight. Jacob smiled the biggest cheesiest grins tonight!!! He crinkled his nose all up and showed off this wonderful toothless grin. Everytime you looked at him, he'd smile. I sat and bawled....I can't even explain to you how much that warmed my heart. After all these months of being worried and concerned, and one smile can melt all of that away. You can tell just how much he loves us :*)

Love, Karla

Thursday, December 19, 2002 at 10:25 PM (CST)
Another busy week! We had PT on Tues, Moms 'n More group yesterday, PT and Early Childhood visits today plus La Leche League meeting, and tomorrow we are receiving some gifts from a local business. We have been so blessed this Christmas. Besides the gifts that are going to be delivered tomorrow, we were named for a Christmas Wish on a local radio station. We received gift certificates to a grocery store, Farm and Fleet, and Kohls. Then we had a call from our pediatrician saying there is a man in town that adopts a family every year and gives them something of need. We were contacted by the family yesterday and tonight they brought over a substantial amount of gift certificates to a grocery store, Walmart, and the mall. They wish to remain anonymous. When they called, their number was blocked and when they came over, they parked behind the trees next to our driveway, and of course it was dark when they came. We are so incredibly touched that people have such a giving heart. It has amazed us that our trials have touched others so deeply. We can't even begin to thank people enough for everything they have done for us. And it isn't just money either....it's the phone calls, the cards that were sent, the hugs and well wishes, the visits to us in the hospital and also at home, the meals we received, the food friends brought over, the gifts, and most importantly the prayers. We are so deeply touched by everyone's generosity. Thank you!

Love Karla

Tuesday, December 17, 2002 at 03:46 PM (CST)
Good Afternoon! Jacob has had a wonderful, happy day! He had PT this morning and worked so hard he fell asleep at the end! He took a nice nap and then spent many hours awake, talking, cooing, and smiling more than he ever has. You could just tell he was so happy! He sat in the bouncy seat while I washed dishes and made lunch and then I put him in the swing and he actually slept there for a while too, which is huge for him! He likes to be held all the time!

There is a classical poem I am going to share that describes how it is to raise a disabled child. Many of you have already seen this, but for those who haven't seen it yet, I love this poem:

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Love, Karla

Sunday, December 15, 2002 at 06:10 PM (CST)
Happy Sunday!

We had a nice weekend. My friends, Crystal and Amy came over yesterday and made Christmas goodies with me. It was lots of fun. The best part is everyone made different things, and then we exchanged them. YUMMY!!! Jacob was so good the whole day. He slept during a good part of our day and then when he woke up, I wasn't in the middle of anything at the time so I could feed him.

Today we had Dave's mom, Lorraine, over for lasagna and a good visit. We went and delivered some goodies to the neighbors and sat around and enjoyed the day. We have really learned how to relax a lot more and enjoy our time together.

Jacob has a quiet week. PT on Tues and Thurs, and hopefully a visit from his Early Childhood teacher. She was sick last week, so she didn't come by.

We are excited for Christmas. At the same time though, our focus has changed so much. I used to worry so much about getting pictures taken at Sears and a Christmas letter done, decorating, putting lights on the house, getting lots of gifts, etc etc.....this year I am sending a card with pictures I took, no letter (people can get updates here! LOL) no lights on the house, just a tree that's decorated (may put up some of my snowmen things) bought minimal gifts, and we are so much happier now than we could ever have been. I can't even explain to you just how Jacob has changed me. Words cannot explain the joy I feel for the simple things now and how the things I used to think were important or had to be done, just really don't matter anymore. Maybe that is one reason God gave us Jacob too. To get back to the simple things in life. After all, God is good for that...Jesus wasn't born in a 5 star hotel, not to flashy people, who needed extravagant things. Maybe there is something to be learned here.

Love, Karla

Friday, December 13, 2002 at 09:42 PM (CST)
Jacob had his appt yesterday and was 8 lb 14 oz. He hasn't really gained anything again. He was 8 lb 12 oz two weeks ago on that same scale and was 8 lb 15 oz at Mayo with a diaper on. I was so ready to ask how much the doctor thought the IV weighed....hey, I've got to claim every ounce I can for the little guy! LOL Otherwise he is doing wonderfully. He got 3 shots, one of which is the synagis shot for RSV. We were able to get the insurance to pay for this expensive shot, which is wonderful if it can help prevent him from getting sick this winter.

PT came over yesterday too and he worked pretty hard at holding up his head. He can do so good at times, but then other times he is so floppy still. Just something we will have to continue to encourage. He also loves to be held ALL the time, so I am trying to get him used to being in the swing, bouncy seat, and tummy time for longer periods of time.

Take care everyone!
Love, Karla

Wednesday, December 11, 2002 at 11:00 PM (CST)
Hello! I just wrote a nice post and I got kicked off the computer UGH!!! We will try it again!

We had a busy day again today. I went to my moms group this morning for a Christmas party. This afternoon, my friend Crystal watched Jacob and Devin so I could go to Michael's school and help him with a project. He was so thrilled to have mom all to himself.

We have been thinking so much about our friends from the Ronald McDonald House and the hospital. I love how even during hardships, God blesses you and brings you joy. I also realize if I had never had Jacob or if he'd never been in the hospital when he was, I never would have been so blessed with knowing such wonderful friends. So even in the worst of times, there are so many things to be thankful for. I received an email from a friend we met when Jacob was in the NICU. They took their daughter home! Please say a special prayer that Dave, Tracy, and Angelina have a blessed 1st Christmas AT HOME and that Angelina continues to grow strong and healthy. I also received a wonderful card, letter and picture from Holly and Maya from the RMH. I love ya guys!!!!

I put new pictures up on the site! Make sure you take a peek!

Love, Karla

Tuesday, December 10, 2002 at 12:26 PM (CST)
Happy Tuesday! Today is day 26....do you know what that means? We have officially been home a half an hour longer than we were last time!!! We broke our record! WAHOOO!!!!!

Jacob has really started to show his personality a lot more lately. He gets mad if "I" think he is done eating before "he" thinks he is. He coos a lot and seems to really interact with us more. PT came this morning, but he was too tired to do much. He usually takes a mid morning nap, but he was up earlier today so he went down a little earlier.

There is a Bible study/moms group that I go to and tomorrow they are having a Christmas party which should be fun. It is nice to be around people who are really supportive of what I am going through, yet make me feel like I am just a normal mom too. There are a few others there that have special needs children too, so it is nice to visit with them.

I am looking forward to this weekend. Two of my friends are coming over and we are making Christmas goodies together. It is nice to be home and enjoying the holidays.

Love, Karla

Sunday, December 08, 2002 at 08:21 PM (CST)
Happy 4 months old! It is amazing when I think that 4 months ago our little guy was born. It feels like a life time ago. It is hard to remember what it was like without him around....funny how quickly that happens. He has brought so much joy, heartache, pride, sadness, but most importantly LOVE.

I bought Jacob the CUTEST Santa outfit with a hat at Walmart yesterday and took lots of pictures of him in it. Michael and Devin had Santa hats on too so all three of them were hysterical. I got presents wrapped today too. The cat loves the tree, especially now that I put the presents under there. She lays underneath it all the time and drinks the water from the stand. Nice huh?

Take care! More excitement this week with PT, Early Childhood, and Dr. appt.

Love, Karla

Saturday, December 07, 2002 at 06:17 PM (CST)
Happy Saturday! We are still home...knock on wood. I get so sick just thinking about the weekends because that is when everything has happened. I hope I eventually get over this feeling of uneasiness. That is something I am struggling with....learning how to relax enough to go on with our lives, but not too relaxed in order to be aware of issues with Jacob.

We went out shopping for a little while today. Jacob is so good. He usually sleeps the entire time. The motion of the van puts him to sleep and he usually stays sleeping until we get home. I will leave him in his carseat and let him sleep. Very nice.

We put up our tree today, courtesy of my Mother-in-Law. Thanks Lorraine! It is a beautiful balsam. The prettiest one we have ever had. It is almost 8 feet tall and looks like it could be an artificial tree because it is so perfectly shaped and full.

Talked to the secretary from the Spina Bifida clinic yesterday. She has Jacob scheduled to see the urologist, neurologist, developmental specialist, orthopedic surgeon, and social worker on Jan. 6th, the anniversary of when we found out we were expecting him :) The exciting news is that we are not scheduled to see Dr Raffel, the neurosurgeon, until JUNE!!!! He obviously thinks Jacob is doing pretty good! Never would admit that too loud! LOL Now hopefully Jacob won't have any issues with his shunt between now and then.

Hope everyone has a wonderful weekend and is beginning to get ready for Christmas!

Love, Karla

Thursday, December 05, 2002 at 10:42 PM (CST)
Good Evening! We had a busy day yesterday and again today. I swear I do more things being home than when I worked! Jacob is FREE of all tubes, wires, IVs, etc !!!! I can't tell you how WEIRD it is! I have gotten so used to having things connected to him. I find myself being careful with his arm and then remember the PICC line is not there anymore!

I find myself enjoying the littlest things with Jacob. The smiles, the direct eye contact, all the coos, the way he recognizes our voices. Tonight I took him into the bathtub with me and he had the funniest look on his face, one I haven't seen before. It was part curiosity, part excitement, part comfort...it was so cool. I held his head and the rest of his body just floated. I looked at my skinny little boy with more scars than I can count and a head that has been through SO much, and all I saw was beauty. It was the first time I really SAW his body, I mean really saw it. It sounds weird, but he has always had something attached to him or had something healing that I have never really got to look him over, you know the way you do when your baby is born...he is so beautiful in a way that is so hard to understand. Not because he has a perfect body, but because he is so perfect to me. I really can say that God gave me a perfect baby. He is so incredibly sweet, he sleeps wonderfully, eats wonderfully, has such an incredible love for us, he is happy as long as he is being loved. I couldn't have asked for more. I remember talking to the chaplain at the hospital about how far we should go with treatment. He asked me if I thought Jacob was suffering and I said absolutely not. He agreed with me and said all Jacob needs is love...that is all he requires from you...he is not in pain, he is a beautiful child who only wants love from his mother. I couldn't agree with that more.

Tuesday, December 03, 2002 at 09:42 PM (CST)
Ready for a long update? We started our day with meds before we left. Got to Rochester in record time. My mom was there waiting for us. We started in OT with the lady Jacob would scream for...well he screamed the whole time again! She was impressed with his progress so far. He got thumb loops to try to get his thumbs where they should be. He likes to tuck them under his fingers. His right hand is the worst.

We then went over for a hearing test at the Mayo Clinic. His hearing is "BEAUTIFUL!" as the dr says. :)

We went back to the hospital for a CT scan. He looks so darn cute laying on that big table...I wish I had my camera! His eyes got bigger and bigger with every noise, but he laid still!

We then had to go back to the clinic again, thank God for the shuttle! We had lunch there, they have a mall and food court! Next we saw the neurologist. I love this one...the first one we saw told us to stop treatment for Jacob and let him die because he will never amount to anything, that we needed to think about our other boys...She asked how he was doing and when I said great she said, "Tell me all about him!" with a big smile on her face. It is so nice to have someone who celebrates WITH me all of Jacob's accomplishments. We discussed Jacob's diagnosis which is called cystic encephalomalacia, which basically means that either he had an infection inutero or strokes that caused various areas of destruction. These areas are filled with cysts or cavities instead of brain tissue. He also has thinning of different areas of his brain too. She said that the concern with Jacob is his damage is in different areas of the brain, not just one side. The brain can compensate better if one side receives these injuries. But she also said that his potential and abilities are still left to be seen, that he is making progress now, and that the next 6-12 months will be a good indication to what lies ahead. She also said that with loving parents like us, babies tend to do better. I thought that was very nice to hear. I said Jacob will probably learn how to talk just so he can tell me to shutup because I talk to him so much! LOL She also emphasized that right now we are concerned over the infection, that it is our top priority, and we need to get that taken care of first before the other areas of his condition can fall into place. He hasn't had any seizures lately. She did increase the dose of one of his seizure meds because he has grown some.

Dr Raffel came in and said the shunt is working beautifully and doesn't see any areas of concern with his shunt. There is still a couple areas that are enhanced on the CT scan, but no new infection at all. Infectious disease and Dr. Raffel reviewed the scan together and both felt it would be safe to stop antibiotics even with these areas of enhancement for a couple reasons....the scan looks the same as it did 3 weeks ago. The areas that are enhanced could just be showing healing matter. There is no new infection anywhere. The bloodwork suggests that the infection is clearing. Most importantly too is the fact that he has been on EXTENSIVE antibiotic treatment since Sept 21, with Oct 1 as the first negative culture. He feels that it is safe, however the infection COULD come back....but if we don't try we'll never know and also he can't be on antibiotics forever. Plus, the PICC line can cause a risk of infection if it is in too long too. So all in all, he feels it is a good shot to take him off. I expressed my concerns with Christmas coming and not wanting to be back in the hospital and he said with Jacob they have always errored on the side of being cautious and once again stated his reasons for discontinuing antibiotics. So it is a good thing, even though it still scares me! The Home Healthcare nurse will come out tomorrow and take out his PICC line.

Please continue to pray for Jacob that the infection is indeed gone, the shunt continues to work, and that we can continue to have him at home and begin to have a "normal" life with him.

Love, Karla

Monday, December 02, 2002 at 07:04 PM (CST)
Hello! I tried twice yesterday to put a new post on here, but it didn't work!
We had a nice quiet weekend. We went to church yesterday. There is a nurse from the hospital here that goes to our church and she offered to take care of Jacob if Dave and I ever want to go out. I thought that was so nice! She gave us some dates she has off, so I am planning on taking her up on it!

Today was my original date to go back to work, but considering everything Jacob is going through with him still being on antibiotics and not really trusting anyone to take care of him, (I wouldn't even know where to start right now!) I decided to stay home this school year.

Tomorrow is our big day. We will be gone all day. Our first appt is at 10 and the last one at 4. Please pray for us tomorrow. I am hoping to get a lot of questions answered as well. My mom is going to meet us there and be there for support. It is so emotionally stressful going to these appts, but I am starting to get used to it. I suppose I am going to have to, we will be there a lot I am sure!
Take care and keep us in your thoughts tomorrow!
Love, Karla

Saturday, November 30, 2002 at 12:50 PM (CST)
Happy Saturday! We had a very nice Thanksgiving! Dave's mom, brother and best friend came over for dinner, and we spent the day visiting and relaxing. I needed to rest up for my big shopping day yesterday! I usually go out with my sister, Sandi, but since we didn't want to travel or expose Jacob to much, we stayed home. I missed going shopping with you Sandi! My friend Amy and I went out and got a lot of good bargains though. People are crazy, but it is lots of fun. We stopped at Menards last and by that time, we couldn't get the doors shut, the car was so full! After maneuvering things around a little, Amy finally got one of the doors shut, only to have the other door not shut! It was a riot. The guys getting the carts from the parking lot were so funny making comments to us. I was laughing hysterically and not much help to Amy, but we finally got it. Jacob stayed home with Daddy and did just fine without me. It is nice to get out every once and a while.

Jacob is working hard on head control. He can sit on our laps now and hold his head up fairly well for longer periods of time. He looks so darn cute! He is still so little! Hopefully he will grow soon. I never thought I'd say that with any of my kids, but Jacob really needs to get some meat on those bones and grow! He looks like a newborn still. Exciting news though....we MIGHT be moving into size 1 diapers soon! Jacob is peeing through his newborn diapers now....LOL He has woken up quite a few times in the last few days soaked. It is so exciting that he is able to pee on his own. Many kids with spina bifida have issues with that. He will have a urodynamic study at the spina bifida clinic soon to see how his bladder is doing.

Tuesday is our big day of appts. We have a PT and OT re-evaluation, hearing test, CT scan, see the neurologist, infectious disease, and Dr. Raffel to see how the infection is clearing. We will be gone all day. First appt is at 10 and last one is at 4. My mom is planning on meeting me there to be with me. It is all just too emotionally stressful not to have someone with me. I am hoping things looks good. I have lots of questions for the neurologist and Dr. Raffel. There was a diagnosis written on his discharge summary and I want more info. I had asked what his condition was called and wasn't given a name or lots of info on it specifically. When I have researched the name, I found out lots of things I now need clarified. It is all making so much more sense to me now.....I will fill all of you in when I get more answers.

Have a great weekend and please email me!!!! Kelly, if you read this, I need your email address.

Love, Karla

Thursday, November 28, 2002 at 09:06 AM (CST)
Happy Thanksgiving!

We can't help but be thankful for so many things this Thanksgiving. We are thankful to God for entrusting Jacob in our care and for chosing us as his family. We are thankful for every second, every minute, every hour and every day that we have been given to raise this beautiful angel. We are thankful for the peace that God has given us to accept staring death straight in the face and somehow coming away from it happy with God's decision either way. We are thankful for the fact that our little boy is still alive...something that at one point we didn't think would happen, but with the reality of Jacob's life comes the reality that God is good, that He has a plan for us all, especially baby Jacob. We are thankful for his smiles and his coos, for recognizing Mama and Daddy, Michael and Devin as his, for loving to nurse and falling asleep in our arms. We are thankful for all the love we have been shown, all the prayers said on Jacob's behalf, for all the joy we have received from all of you. We cannot even begin to thank everyone for taking care of us in so many ways.

But above all, we are thankful for being given this chance to have Jacob in our lives...something that wasn't planned, but planned for us, something that is so incredibly hard, but made so easy when we look at his sweet face, something that at times we wish we could change, but ideally would never change for anything in the world....our sweet angel here on earth, given to us to teach all of us about love.

Love, Karla

Tuesday, November 26, 2002 at 03:07 PM (CST)
Happy Tuesday! We are doing great! Jacob gained 3 oz in a week, bringing him up to 8 lb 13 oz! His white blood count looked good and his hemoglobin was back in the normal range on it's own! It has been low, which is expected when a person is fighting an infection. Infectious Disease explained it as this: when you have an infection, your body pulls the iron away so that the bacteria doesn't use it for food. When it got too low, he was given blood (5 times actually!) but now it has continued going up into the normal range, even from last week.

Jacob's Early Childhood teacher came yesterday and his PT came today. We are working on him sitting upright and rolling over. He seems to cooperate really well and is making nice gains. The Home Healthcare nurse came today too and changed his PICC dressing. She is so nice and I like her more everytime she visits. We went to Michael's dance program today also. The PE teachers every year teach them some dance and this year they did a disco program. Very cute.

Take care and write to me too! I miss hearing from everyone!

Karla

Monday, November 25, 2002 at 07:34 AM (CST)
I wasn't able to post last night...it wouldn't let me on! We had a very nice weekend. We went to church yesterday which was nice. My mom was here this weekend for a visit also.

Yesterday I went to the Holiday Fair craft show with my friend Amy. It is nice that Jacob will take a bottle when I am gone. I got Jacob's ornament. It is an angel sitting on a cloud. I had the lady write "heaven sent" on the cloud and Jacob's 1st Christmas on it too. It is so sweet :)

Today we have Jacob's early childhood teacher coming over to do some infant massage and then we have his dr appt. this afternoon.

Jacob has really changed a lot in the last few days with his smiling and cooing and being overall more alert and focused on faces. It is exciting to see.

Love, Karla

Saturday, November 23, 2002 at 09:35 PM (CST)
Happy Saturday! It has been one month since Jacob got his shunt and so far so good!

Jacob is so darn cute! He is cooing and smiling a lot. Yesterday our pastor came to visit and Jacob sat there and smiled and cooed at me for a long time...he had to show off a little :) My mom came for a visit today too and she was able to get lots of coos and smiles out of him too. Jacob really seems to respond to Michael. He was fussing tonight and Michael talked to him and he instantly started cooing and smiling at him. What a sweetie!

We are going to the dr again for a weight check and CBC (complete blood count) on Mon. I am curious to see how much he weighs because he eats so awesome!

Jacob slept last night for 7 1/2 hours! I woke up scared when I looked at the clock....and of course I did the crazy mother check to make sure he was breathing! LOL He was just fine :)

Love, Karla

Thursday, November 21, 2002 at 09:30 PM (CST)
What a nice day! PT came and played this morning and then Jacob's Early Childhood teacher came and played this afternoon. He is making nice progress in holding his head up. We got our first huge smile today too! Talk about BEAUTIFUL!!!

He has gotten into such a nice routine. He is awake for 2-3 hours in the morning and then takes a 3 hour nap. He wakes again to eat and play for a few hours and then takes another long nap. He is ready for bed by 9 and will sleep 5-6 hours at least. Then he nurses for at least an hour! LOL We are totally in love :)

Love, Karla

Wednesday, November 20, 2002 at 09:37 PM (CST)
Good Evening! We had a wonderful "normal" day today! Meds are going well. I feel like I have a better schedule now and feel somewhat in control! I am much more relaxed now being at home.

I noticed today that Jacob seems to recognize his name! If you are talking in general, he doesn't always look at you, but you say his name and he turns. How is that for cool????

Today I was stroking his hand on my face and saying "mommy!" He smiled at me a nice little smile, with a very inquistive twist to it. Talk about melting my heart :)

Tomorrow we have PT again and his early childhood teacher will come and visit too.

Love, Karla

Tuesday, November 19, 2002 at 08:34 PM (CST)
Hello! We had a wonderful day! PT came today and the Birth to Three coordinator. Jacob was so cooperative and worked really hard. It is so nice to have these people in our lives. They are very supportive and caring.

The Home Healthcare nurse came to do his PICC site care. This time his PICC has a few stitches to keep it in place. Antibiotics continue to go well.

I actually got out for a couple hours tonight to go shopping. It was really nice!

Love, Karla

Monday, November 18, 2002 at 08:44 PM (CST)
Had some excitement yesterday. There were air bubbles in his PICC line while giving his antibiotics. The Home Healthcare nurse came over and the line wouldn't flush, so off to Rochester we went. We spent a whole day in the ER waiting for the PICC/Radiology team to place a new line. Being Sunday, they wouldn't come in right away since it wasn't an emergency and since they had another patient scheduled for the evening, we had to wait. Finally got home around 11:30 last night. UGH

Jacob is doing great though! Saw the pediatrician in La Crosse today and she was so supportive and wonderful. Jacob is a whopping 8 lb 10 oz and 22 1/4 inches long! He is growing finally! YEAH!

Devin and I got our flu shots today. You'd think they had cut off his leg the way he carried on! Devin is SO into costumes and superheroes. He had to wear his Power Ranger costume. When the nurse went to pull down his costume and give him his shot in the leg, she noticed he didn't have any underwear on. She said, "Nature boy huh?" I laughed so hard. I told her it gets to be whatever with me after a while with Devin and his dressing himself. The nurse said, "It is funny how your priorities change after something like this." I said, "Isn't that the truth....."

Tomorrow PT comes. I can't wait to get started with that again.

Love, Karla

Saturday, November 16, 2002 at 08:59 AM (CST)
Things are going realy good so far! The Home Healthcare nurses have come over 4 times now and we are ready to do the antibiotics on our own. It is so easy. All you do is prepare the saline syringes and heparin syringe, flush with saline, connect the antibiotic, and let it run. Once it is done, you flush again, and put the heparin through and your done. Very easy. It helps that I have seen the nurses flush the line and all the sterile techniques that go with it. Tonight will be our first night on our own!

Monday Jacob has a dr appt with his pediatrician so she can see where he is at now as an initial exam type thing, so that if he gets better or worse, she has a baseline to go by. He will also have bloodwork done to check all his levels. Devin and I are getting our flu shots then and Dave and Michael will come back that afternoon for theirs.

Dec. 3rd we go back to Rochester for a full day of appts. He will see the OT and PT, have a CT scan done to see how the infection is clearing, then after lunch, see the neurologist, the Infectious Disease dr to make a decision on stopping the antibiotics or if we should continue them, have a hearing screen and see Dr Raffel to discuss all the results.

Thanks to everyone for your kind words and prayers. I will continue to update this site and let you know how he is doing!

Thursday, November 14, 2002 at 09:49 PM (CST)
Hey! WE'RE HOME!!! This morning we had a scare though. Jacob's fontanel was fuller than normal and so the neurosurgeon's resident came in and pumped his shunt. Right after that it was fine and it still is. Must have had a little protein chunk in it. I was SO sick when I woke up at 6 and called the nurse, only to hear this. But he is fine now and we are home! Home Healthcare came tonight to do meds. It should be VERY easy. There is a little container that looks like a hand grenade basically and that holds the meds. It is all self regulated so we can't change the rate of flow, etc. He is in bed, hopefully going to sleep :) That is exactly where I need to go too....I am exhausted. I will keep you updated on what's going on!
Love, Karla

Wednesday, November 13, 2002 at 07:39 PM (CST)
Happy Wednesday! Tomorrow is going to be even happier! Our baby boy is finally coming home!!! YEAH!!!!

It is all set up for Home Healthcare to come in tomorrow might and start meds. We had all our consults today and everyone has gone over everything we need to know regarding meds, things to look for, etc. We are ready to go home....it has been quite the journey so far.

Dr.Raffel came in today and said that he is amazed that Jacob's CT scan looked as good as it did after the infection. He of course still has serious brain damage, but the infection hasn't caused much more damage as he thought it would. Jacob also has only one area of increased spinal fluid, but the tip of the shunt is in that area, so as far as Dr Raffel is concerned, he is doing great. If anything, they may have to put another shunt in to drain it more efficiently, but as of this time, he isn't concerned. This just confirms that God has worked miracles through Jacob and continues to bless us with him everyday.

Love, Karla

Tuesday, November 12, 2002 at 10:35 PM (CST)
Hey everyone....we MAY be going home tomorrow or Thursday! The infection is still there, but we are planning on doing antibiotics at home. They will switch his antibiotic to the one he was originally on and that isn't in such short supply. This one needs to be taken twice a day. Plus they will take him off the one that he takes just once a day. Home healthcare will come in and teach us how to administer the antibiotics and keep a close eye on him.

Things look better, just not cleared completely. They said that they can never guarantee it is completely gone because of the brain damaged areas may be harboring some bacteria. This scares me too, but we will take a day at a time.

I am asking that you keep our family in your prayers. The days and weeks ahead are going to be tough as we transition into being back home again. If there is anyway you can help us out, I'd appreciate it. Jacob will need to be kept at home and away from germs as much as possible. This is another reason they suggested home healthcare....the flu and viral infection season is coming up. We all need to get our flu shots within the week according to infectious disease.

Love, Karla

Monday, November 11, 2002 at 09:02 PM (CST)
Jacob had his CT scan today. The resident came in and said that there are two areas that were enhanced (still have some infection.) One is in the area that his first EVD was placed and the other is by the brain stem. His shunt is working wonderfully and doing everything it is supposed to. There isn't any areas of infection at all by the shunt, so hopefully it will continue working. Otherwise the infection has cleared greatly and is under control. I wish they could have said it was cleared completely, but if all we have is progress, I'll take whatever I can get. It is much better than in the beginning where we weren't sure if he'd make it at all. So 6 more weeks it is.....
We will find out more tomorrow if we can do the antibiotics at home or in La Crosse. I will let you know more tomorrow what the plan is.

Sunday, November 10, 2002 at 08:10 PM (CST)
Happy Sunday! We had a nice weekend together. Dave and Michael went home a little while ago. Michael is having such a hard time with me being away. I talked to the nurse about this tonight and hopefully we can arrange for Jacob to get the meds at home if he still needs to continue treatment. Hopefully the CT scan will be ordered tomorrow or Tues and we can see how everything is progressing.

Please remember to sign my guestbook or email me! I look forward to hearing from all of you too!

Karla

Saturday, November 09, 2002 at 09:23 PM (CST)
Hello! Jacob had a great day and so did we! We went to an outlet mall and bought Jacob some cute Carter's outfits. I bought some 0-3 month outfits and they seem to fit okay....still big on him! LOL

The Infectious Disease doctor came in today and he said if all goes well we should be home this week. If the abscesses are still there, we may be able to get the meds for home or at the hospital in La Crosse. That would be so wonderful! Dr. Raffel came in and said that the shunt is working good. I asked him if there was a time frame in which we could be fairly certain that the abscesses wouldn't cause any problems. He said it is very positive news that the shunt is working and that we haven't had any issues as of yet. Sometimes it can be a couple months before everything is resolved regarding these abscesses. The CT scan should also show if there are any areas of concern, and if there were, he may need another shunt or a revision. I asked how we'd know if there was a need for one outside of what the CT scan says and he said that his fontanel would bulge. His definitely hasn't yet, so things must be okay for the time being. We know that there will or can always be issues with shunts, so we are never going to be able to ever totally relax on that issue, but Dr. Raffel is never a positive man and this is the most hopeful he has ever sounded. We will see what this week brings. Good or bad, we will do whatever we need to for Jacob. He has brought so much joy already.

Love, Karla

Friday, November 08, 2002 at 10:13 PM (CST)
HAPPY 3RD MONTH BIRTHDAY JACOB!!!

It is wonderful to see how far he has come! OT worked with him this afternoon and I am so pleased with his progress. He lifted his head all by himself numerous times and was looking at the toys in front of him. He had a really playful look on his face too. He absolutely loves any kind of toy that makes noise or has music. Check out the photos of Jacob working hard today!

We had a nice visit today from Dave's cousins, Patty and her daughter Lydia, Penny and her kids Casey and Jenna, and Pam. We went to the mall for lunch and it was nice to get out and do something normal for a couple hours!

Dave and Michael came up tonight. Devin is so thrilled to see Michael again. They are being loud and crazy in the room. I suppose I better go see if they are actually getting ready for bed!

Love, Karla

Thursday, November 07, 2002 at 12:49 PM (CST)
Hello Everyone! The shunt is still working (knocking furiously on wood!) and Jacob seems to be doing well overall. Jacob passed his birth weight finally! YEAH!! He is 8 lb 10 oz! He is also 21 3/4 inches in length. His newborn sleepers are finally gettin a little tight.

My friend Amy, her mom, her two sons, Dakotah and Trevor came last night for a visit and to bring Michael with to visit me. Thanks Amy!

The plan is next Mon or Tues Jacob will have a CT scan and we will see how well the abscesses have cleared. I so hope we are getting somewhere. I am also asking that everyone prays that we will not see any pooling of spinal fluid anywhere. That can be a serious complication with these abscesses.

I will continue to keep you updated. I thank you for all your prayers and concern. You have all been so wonderful to us. I can't tell you just how much we appreciate everything!

Love, Karla

Tuesday, November 05, 2002 at 09:37 PM (CST)
Jacob had a great day today. PT and OT came in and worked with him, and Jacob was able to track a jingling ball side to side and up and down. How exciting! He seems to be getting stronger in his neck too.

Jacob had 4 immunizations today. They had basically forgotten about him needing them with everything else going on. The infectious disease doctor seemed to think with everything Jacob is going through and all the issues we are dealing with that he definitely needs his immunizations. I totally agree with him on that. We are all going to get the flu shot too just so that we try to protect him as much as possible.

Keep praying for our little guy! Isn't his pumpkin picture too cute?

love, Karla

Monday, November 04, 2002 at 10:03 PM (CST)
Jacob had sleepy day today. The infectious disease doctor came in this afternoon and said that next week, most likely Monday, they will do a CT scan to see how the abscesses look and decide if they can discontinue the antibiotics or if they need to continue them for another 6 weeks. If he still needs treatment, they will probably just continue with 1 antibiotic and we could do that one at home. The one antibiotic he is on is in such short supply that they discontinued it for everyone else in the hospital except for Jacob....talk about one special baby!
Jacob got the stitch taken out of his head from when they had the EVD drainage tube in. He screamed so loud when I had to hold his head, but went right back to sleep afterwards. I tell ya, when he gets mad, that kid is so incredibly strong, it is hard to hold him!

I posted the picture of our pumpkin boy. He was getting a little sleepy when I took this picture!

Please continue to pray for good news and for the abscesses to disappear. We are ready to go home!

Love, Karla

Sunday, November 03, 2002 at 10:12 PM (CST)
Sorry I didn't update you yesterday, but we went home last night! Oh it was SOOOOOO wonderful to sleep in my own bed! The nurse suggested that I could go home and spend the night, get caught up on cleaning, etc and that she was going to be there again today. She is his primary nurse and has a special needs daughter also. I feel good knowing she knows what we are going through. Plus she really takes great care of him, hold him all the time, etc.
The house was "interesting" should I say....Dave tries really hard, but it just didn't have that womanly touch! LOL We came back today and Grandma Lorraine came with so she was able to see Jacob too.

Jacob is doing really good. He is eating well, his weight is up to 8 lb 7.6 oz and I am guessing he meets his birth weight tomorrow! He seems to be filling out his clothes better and his diapers. He still wears preemie/newborn clothes and newborn diapers. The tabs can't meet in the middle anymore, so I know his gut is finally growing! He has the smallest butt I have ever seen.

Thanks again for all the well wishes.

Love, Karla

Friday, November 01, 2002 at 10:34 PM (CST)
Hello! Jacob had a lazy day today. He seemed to be kinda sleepy and cranky. It was almost like he was overstimulated by everyone looking at him, touching him, and playing with him. I guess we all have days like that!

We found out today that the antibiotic Jacob is on is in such short supply that the Infectious Disease drs have switched various patients to another one, but I guess they feel Jacob really needs it, so they left him on it. It sounds like he is the only one or one of few that is on it. I guess he is just even more special! LOL They will do another CT scan at the end of his antibiotic treatment to see if the abscesses have cleared. Please continue to pray for him that these abscesses disappear and that his shunt continues to work.

Dave and Michael came tonight for the weekend. It is nice to be all together again.

I promise to try to get Jacob's pumpkin picture up tomorrow. The Child Life specialists put his picture on a disk today. They have a digital camera which is fun.

Take care!

Love, Karla

Thursday, October 31, 2002 at 09:36 PM (CST)
HAPPY HALLOWEEN! We had a wonderful day. The hospital has a halloween parade and it was so much fun. I had Michael here too. The boys each got a HUGE grocery bag FULL of candy and toys. They each got a stuffed animal too. Everyone was way too generous. Jacob got a pumpkin bib and a diaper bag too! WOW!!!! The Ronald McDonald House brought us over to a retirement home to have pictures taken with the Pumpkin Queen and get treats, then had a party back here for the kids too. So many people brought bags of treats for the kids too so we have way too much candy! LOL

I will put a picture of Jacob in his pumpkin costume on the website tomorrow. He was way too cute!

Love, Karla

Wednesday, October 30, 2002 at 09:17 PM (CST)
We discussed going back to the La Crosse hospital to finish out Jacob's antibiotics. Talked to the Infectious Disease doctor and he said La Crosse doesn't have the one medication that Jacob needs. I guess there is a national shortage on the med. Luckily Mayo has it though! Oh well....I am not too disappointed. All that I care about is getting Jacob better and taking him home. If that means staying a few more weeks, I will do anything for him. In the full scheme of life, what is a few weeks? Nothing.....especially when you look at that sweet little face.

I have realized just how much I have changed over the past few weeks. I am definitely not the same person I was when Jacob came here. We have found such strength in the Lord and found this verse from the Bible to be so true:

O Lord, you protect me and save me; your care has made me great, and your power has kept me safe.

Psalm 18:35

Jacob is truly a blessing from God. The story of Jacob's dream from Genesis is how I named him. This verse is so fitting for him:
"Behold, I am with you and will keep you wherever you go, and will bring you back to this land; for I will not leave you until I have done what I have spoken to you."
Genesis 28:15

Love Karla

Tuesday, October 29, 2002 at 08:02 PM (CST)
We had a wonderful day! I have thought a lot about going home and I just don't feel comfortable with having to be the one to give antibiotics. It would be different if I had a nurse to come in every day.

I met a really nice mom tonight who has a son with spina bifida. He also had an odd shaped head and it looks much better now. Dr. Raffel had made a comment today that Jacob's head might never change shape or size because of the brain damage. Seeing this other boy though gave me hope.

Love, Karla

Monday, October 28, 2002 at 12:23 PM (CST)
Hello everyone! Jacob has settled into a nice routine of being awake for about 4-5 hours and then taking a nice nap. He has gained more weight and so now he is over 8 lbs!! Way to grow finally! He nurses first and then gets extra in his feeding tube, but we are considering trying to go without the feeding tube and see if he still gains weight.

The hospital is checking in to see if it is possible to continue antibiotics at home. Home Healthcare can come into the house, but from the sounds of it, they may only teach me how to run the IVs and check in on him once a week. It would be nice to go home, but if I don't have the support from a nurse, I would rather stay here. Like I told the dr, "We have been here 5 weeks already, what's another 3?" LOL

Jacob moved rooms again! Please note the new room number and phone number. The room we were in was so small so I asked to move into this one when another child went home.

Love,
Karla

Saturday, October 26, 2002 at 07:06 PM (CDT)
Jacob had a good day today. He went right back to nursing wonderfully. The neurosurgeon came in and said everything looks good from his standpoint. I questioned him about doing something about the shape of his head. He said surgically he can't because there is a vein that runs down the middle of his head. I asked if trying to lay him on his back of head would help and he thought it might. The problem is his head is too long to lay on the back of it. His brain right now is kind of shrunken from all that he has gone through, so until it starts to grow, it won't press on the bones much either. He's still beautiful!

My mom, Sandi, Bill, and Matt came today. Thanks for the visit guys!

Love, Karla

Friday, October 25, 2002 at 04:08 PM (CDT)
Jacob is very sleepy today. His phenobarbitol dose (for his seizures) was increased 2 days ago and it takes 2 days for the levels to adjust, so today he is sleepy and not nursing for me at all. It happened last time as well. He has been getting tube fed today. He had an EEG done again today and they noticed some seizure activity, but not a continuous seizure, so that is good. His seizures are basically an eye deviation or an eye blinking rapidly and only last a few seconds.

OT came by today and PT came by yesterday. They have been doing stretching exercises with him. Everyone has been impressed at how good he looks. A wonderful resident dr he had down in the PICU commented on how great he was doing compared to when he came in. She told me she had stayed by his bedside all night once and how special he is. I thought that was so incredibly sweet. I am so pleased with his treatment here. Everyone has been so supportive of our entire family. The boys have nurses from the PICU that they absolutely love.

I have really enjoyed hearing from people via email, the guestbook, or the phone. Thanks for continuing to think about us and keep us in your prayers.

Thursday, October 24, 2002 at 08:44 PM (CDT)
Jacob had a very good day. He is almost back to his normal eating patterns. He had a small seizure tonight and threw up afterwards. Nothing anyone was worried about though. His phenobarbitol levels were low so they upped his dose yesterday. We went on a walk today in the stroller and sat in the playroom with Michael and Devin. It was so nice to do the normal things with him that you do with any baby.

Wednesday, October 23, 2002 at 03:47 PM (CDT)
Jacob had his surgery this morning. We got here early and spent some time with him before he went in. We got lots of pictures and videotaped him as well. Jacob gave of lots of smiles and even started cooing! He looked at us so attentively and turned his head and looked at everyone that came in the room. He went into surgery at 8:15, surgery started at 9:27, and was complete at 9:40. The neurosurgeon said there was a lot of gunk in the CSF, so there is a chance it may clog, but hopefully it doesn't. He was able to put the shunt into his tummy and we will watch to see if it is absorbing this time. Please continue to pray that the shunt works! I had a talk with Jacob this morning and told him to stop all this monkey business and let the shunt work! LOL

We are now on the regular peds floor, just down the hall from the PICU. We already miss all the cool nurses we worked with there! Everyone came in one by one today to say goodbye to Jacob and made us promise to come back and say hi. One of the nurses who just started here a few weeks ago came by and gave him a kiss on the cheek....how sweet is that? I just love the care we have received here.

Love, Karla

Tuesday, October 22, 2002 at 09:55 PM (CDT)
Jacob had a rough morning. His EVD was clogged, but by afternoon he was doing better. His surgery is scheduled first thing in the morning...around 6 AM. Please keep Jacob and his surgeons in your prayers.

Love, Karla

Monday, October 21, 2002 at 07:42 PM (CDT)
Hello Everyone! Jacob had a really good day. He gained a whopping 5 grams today! At least he didn't lose it! The neurosurgeon's nurse came to talk to me today and said that Jacob will most likely have his surgery on Wed. He had a CT scan this morning which the neurosurgeon was going to review and then decide where and when to place the shunt. The protein count in his CSF (cerebral spinal fluid) has come down into the 400's now from well over a 1000 so I think we are getting somewhere. We spent a large portion of our day today cuddling and nursing. I love how he looks so intently at me now. He seems to be so alert and aware. We got family pictures taken in the hospital a few weeks ago and I picked them up today. They turned out pretty nice, but you can't see his face very good on some. I will let you all know when his surgery will be for sure so that you can all say a prayer for him and his surgeon. This has got to work! I tell ya, I knew I loved him before, but going through all of this makes me want to be his mommy and raise him even more.

Sunday, October 20, 2002 at 03:50 PM (CDT)
Jacob continues to do well. I noticed his fontanel was getting a little full after lunch today and so the neurosurgeon's resident dr. had to come by and flush his EVD (external venticular device), the drain that is coming out of his head until his shunt can be internalized. There was a lot of junk that was coming through and clogged the drain. The neurosurgeon, Dr. Raffel comes back tomorrow, and hopefully he will let us know when Jacob's surgery will be to internalize his shunt. The infectious disease dr. said yesterday that the protein levels in his spinal fluid were over 1000 initially and now have come down to 545, which is a sign that the infection is beginning to clear a little. He thinks it would be a good idea to wait a little before the shunt goes in so that the shunt doesn't get clogged with all the gunk that is coming out, but at the same time they need to be careful so the EVD doesn't get infected from being in too long. We will be here in the hospital until at least the middle of November, possibly longer.

Jacob continues to nurse wonderfully. He isn't gaining weight though, just maintaining it, mostly because of all the energy it is taking to heal. He is hovering between 7lb 7 oz and 7 lb 9 oz. He received a feeding tube the other day so that after he is done nursing they can add a little more breastmilk along with some protein powder and some breastmilk fortifier which adds calories. At night when I am staying at the Ronald McDonald House he takes a bottle. We are still trying to figure out a good nipple for him. He can only have the silicone ones because he is latex sensitive, so he doesn't always get a good seal on the nipple. The nurses laugh at him because he will only take a bottle if he is pressed up against them like he is nursing!

Michael and Devin are doing well also. Devin is staying with me now and Michael still goes back with Dave. He has a hard time leaving me.

Take care everyone and I will keep you updated on what is going on here.

Love,
Karla

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