History

Sunday, December 6, 2015 5:34 PM CST

It is with the greatest sadness, that I tell you Jacob earned his angel wings on November 20, 2015. Jacob had severe complications with hydrocephalus and was declared brain dead.

I am so honored to have been his mama for 13 years, 3 months, and 12 days. He is and will always be my joy.

God is Good, ALL the Time!

Karla

Saturday, November 7, 2015 6:05 PM CST

Our life continues to change with many twists and turns. Jacob's 4th ventricle in his brain, by his brainstem, was completely trapped and pushing his brainstem over. This led to a major brain surgery on Sept 18th, 2015. We saw an instant change in his alertness.

A couple weeks ago, I noticed he was just a little off. He had a repeat MRI and CT shunt series and the ventricle is already halfway back to where it was. A consult with peds neurosurgery is leading us to consult with a general surgeon as well this coming week. Jacob will undergo another shunt surgery. He will have 2 separate shunts with separate tubing into his abdomen to drain the spinal fluid.

My life has been consumed with keeping Jacob healthy and trying to figure out what the heck is going on. I am praying this time surgery works. It is a much more complex approach, but one that needs to happen.

Devin loved playing soccer again this year. The team only lost 1 game all season.

Looking forward to meeting my new granddaughter within a month or so! Michael and Emma are thrilled to have a little girl. This will be a new journey for me!

Have to brag about Zayden too. He is starting to walk with a walker now! He is a wild man. I don't think it will be long before he is walking on his own!

And the famous Popeye wink!

I will try to update after his surgery. Let me know if you still are reading his page!

God is good, ALL the time!

Love, Karla

Saturday, August 8, 2015 9:45 PM CDT

Today was an important milestone for my boy. Jacob turned the big 13. I don't really know how it has been that long.... I really don't. Yet, it seems like so much has happened in his short life. He has gone from a very sick little guy, to a one year old who was only 11 lb and wore 3-6 month clothes, to years of overall maintenance and learning, and years of lots of appts and surgeries, to a majorly ill and grieving boy, to recovery, and many medical changes. Through it all, my Jacob has shown amazing tenacity, strength, endurance, love, and embracing who he is. His faith is amazing and most of us only could wish to have the relationship he has with Jesus. Oh how he makes me proud and smile. Oh how he scares me and worries me. To deny that would be silly. But more than anything, he makes me a better person and so incredibly lucky to experience life through his eyes and his heart.

Dave, please sing Happy Birthday to him in his dreams tonight.

Medical updates:
Jacob had an aspiration episode in June which caused him to stop breathing and needing to be resuscitated. He was then airlifted to Rochester.

July brought a stay in the PICU to get his tonsils out. He was on a ventilator for 4 days to heal before we went home on the 6th day.

Jacob is currently on a bi-pap at night, tube fed into his intestines and only able to eat purees, which he refuses to do for the most part. He has a chest PT regimen of a shaking vest and nebulizers to keep his lungs healthy as well as his normal cathing and bowel care stuff. He is not completely back to where he was prior to Dave going missing and honestly I don't think he will ever be. We have started down a new road of medical issues, but overall, he is healthy when we provide these interventions.

Here are some pictures from the past few months! Enjoy!

Michael and Emma's wedding!

My sweetness Zayden with his glasses! Oh how that boy brings joy to my life! AND he is going to be a big brother to a little sister due Dec 22, 2015!

God is Good, ALL the Time!

Love, Karla

Friday, December 26, 2014 2:53 PM CST

Jacob was admitted to the hospital on Christmas Eve with cellulitis, which is an infection in the tissue. He has it on his right leg this time, left leg in September. Please keep all of us in your prayers through the next days as we wait for the antibiotics to start working.

Love, Karla

Friday, November 21, 2014 12:27 AM CST

Tomorrow marks the 26 month without Dave. I can't even tell you how writing that feels. At the same time, things are changing. Things are different. Not totally better, not healed or forgotten, but different.

Jacob is doing okay. He is actually in a much better place then a year ago when he almost died from all the complications of his brain stem being SUPER compressed. It has been a year and then some to put it lightly.

The thing that totally blows me away however is that God is SOOOOOO GOOD! ALL the TIME! He makes each day bearable...some days are full of contentment, smiles, and even complete happiness and blessings. Yes, blessings and happiness. Never thought this could happen again and it has. I've been through so much and am so much better off the way things are now. Toxicity has been removed and we are happy. Not to say some days aren't hard, but somewhere in that day, the blessings abound.

Michael and Emma are enjoying living on their own and planning their wedding. I can't wait for the two of them. They couldn't be more perfect for each other!

And more cuteness!!!

Devin is doing well. He has his permit and is an excellent driver. He is enjoying school and all the socialization that comes with it. He has always been my social bug!

Jacob's post traumatic stress has been kicking in and out....he went to respite and had an episode of hypothermia again. I had to pick him up before he crashed into such a low temp, he'd be hospitalized. He is starting to look more and more like Daddy every day. Check out these pictures of the two of them at roughly the same age. Jacob's eyes are much bigger like Dave's but he wouldn't cooperate!

I have to share a special story with you. Jacob had a port placed Oct 7th to help with blood draws and when he needs IV's since it took 6 hours to finally get IV access, the last option they had. I was feeling a little upset that we were at this place because it is on my list of things I don't want Jacob to deal with. And this is what I wrote that day....

I often hear people say they don't know how I do what I do when it comes to Jacob. You see there is a secret I keep in my heart and it's what keeps me going. This morning as I got Jacob ready to go to Rochester for surgery, he wanted to eat. I told Jacob that when he got home, he could eat some cheese balls. He waited all day, all through surgery and recovery, then through Devin's soccer game, and when I brought him home to put him to bed, the lip came out because he remembered what I had promised him this morning. So he ate 3 cheese balls, swallowing hard because his throat still hurt from the breathing tube during surgery. When he was done, he laid back down with a smile on his face when I asked if they were good. See life isn't always about surgeries or having a hard time waking up from anesthesia. Sometimes it's about eating 3 cheese balls. Remember that....

Love, Karla

Monday, October 6, 2014 10:06 AM CDT

Time has gotten away from me. I have totally forgotten about this site and need to let all you followers on here how Jacob and the rest of the family is doing.

I will start with myself. Overall, there has been a lot of healing going on, working through my grief, and taking care of the house inside and outside in ways Dave usually cared for. This work has been long and relentless, but slowly, I am seeing changes.

Dave has been missing for 2 years now. 2 years. It doesn't seem possible 2 years have passed, yet when I think of all that he has missed out on or things that have happened, it seems forever. There are still no leads. The best clue is that he walked across the street and possibly into the swamp, which is full of mud like quicksand. That would be the only explanation of why we haven't found any clues and why no signs of him being alive have been found. To say we are hurting is an understatement. Somehow though, we are doing okay,

Michael and his fianc� Emma moved out in Sept. and now it is just Devin, Jacob, and I. Very quiet around here. Michael is doing very well for himself and seems very happy. It is nice to see the man he is growing into and the amazing father he is to Zayden. Zayden is almost 18 months old. He is such an incredible joy to all of us. He is so happy and content, just like his daddy was as a baby. He is rolling and working on sitting up. He can push up on his arms and trying to reach for so much more. He has delays, but is going along a nice path all on his own. It's wonderful to love someone just how they are....something all of us need to learn.

Devin has been playing soccer this fall and loves it. He has never played before and is starting to really like it the more he gets into the game. He is into marketing and business at school this year and still has a love for all technology. Hopefully this will take him far. He is counting down the days to Oct 28th when he is able to get his permit. It will be strange to see him drive and bittersweet that Dave will not be here for it. He is also busy trying to figure out which class ring to order.

Jacob is overall doing okay. He is much more awake. He only tires at the end of the day and is in bed early most days. He is going to school again this year, this time for 9-2:30. He is able to handle the day and loves being around everyone again. Last year was a disaster so we are starting over this year! He has been in the hospital one other time in Sept with cellulitis. His left leg knee down was infected, with it all pooling into his foot. He had a 10 day course of IV antibiotics and so we spent a while in the hospital. After trying to get an IV for 6 hours and ending up getting an IV drilled into his bone marrow. I decided to have a port/IVAD placed in his chest to give us IV access when he needs it. It will sit under his skin and threaded into a main vain. It will stay there as long as there are no infections in it or other issues. It will need to be flushed every 30 days to keep the line open. It is adding another "issue" to his list, but not having IV access when he is sick is a bigger issue!

Hope this finds everyone well! Leave a note so I know if anyone is still reading!

Saturday, June 28, 2014 8:08 PM CDT

Jacob has been healing well overall from his brain surgery in December. He is more and more like the Jacob I know and love everyday. Now if these stinkin' UTI's would stop causing hospital stays, we'd be good. We are currently in St. Mary's in Rochester getting IV treatment for a hard to treat UTI. He has been sleeping all day since Thursday.

We had a busy day at Mayo on Tuesday. Jacob appears to be negative for c-diff at the moment. Other labs were drawn. I also talked to GI about the reality of using his g-tube for feeds again, meaning the formula would go into his stomach instead of his intestine like it does now. She felt that keeping the feeds in the J-tube will be better for the whole reflux issue and not messing again with his tummy. That brought up the whole eating thing. Since he doesn't really want to anymore, or at least the choices he has for eating, we are revisiting reality and the fact he doesn't have a chunk of bratwurst lodged in his lungs, is a good thing! Pulmonology said Jacob definitely has low lung volume which doesn't lend itself to anything good when he is sick. He will have lung issues because of his low lung volumes, and some day the topic of a trach will be addressed. That is one thing I said I didn't want to ever ever hear, but we will cross that bridge when we get there. I like that there is an honesty and a quality of life emphasis on everything Jacob. I don't just like it, I love it. Sleep study is in August and if it shows obstructive apnea (he snores a lot) then his tonsils and adenoids will be taken out. If it is central apnea, meaning in the brain, there is nothing to do except c-pap again. It's confusing why the snoring stopped and then started up again lately. Everyone is pretty much thinking it's his tonsils. We shall see! Otherwise, the overall consensus is Jacob looks much better.

Jacob got glasses. He is still legally blind, but the vision he does have needed to be corrected, so here he is being simply gorgeous!

Here are a few more to share!

Our family at Devin's confirmation!

Our little memorial area for Dave on the ramp by our door.

And my incredible gorgeous, adorable grandbaby who is just the absolute love of my life!

Keep us in your prayers as always. Slowly adjusting to our new normal, but still missing Dave like crazy and wishing things were so different. It is so hard not having him in our family.

Love, Karla

Monday, June 2, 2014 9:52 PM CDT

We had a very busy day at Mayo today. We left at 6:30 AM and came home at 6:30 PM. Jacob has overall remained unchanged in the contractures by his knees and his scoliosis. There is a concern over his weight causing excess pressure on his already too small lung volume. Because he is a non-walker, his lung volume hasn't expanded like it would if he was exerting himself. The problem comes with the increased respiratory issues. The likelihood of him dying from a respiratory infection or pneumonia is very high. While I appreciate honesty, this scares me.....I don't like how quickly things have changed from maintenance to real world fears and problems.

I am also reminded though that I can't look into the future. I am taking care of today and today only. I have enough to deal with today.

Next week, we will go back to continue dealing with his sleep issues and feeding issues. We will also talk to infectious disease since MRSA (resistant staph infection) is in his lungs and urine. He has colonized in different areas of his body and know it's time to get it under control. Praying for answers there!

Last week of school is this week. Looking forward to some down time and sleeping in!

Love, Karla

Tuesday, May 13, 2014 12:45 PM CDT

Hello everyone! Everything is going fairly well here. I am pleased to say that the vomiting has subsided for the most part. His tummy seems to be feeling better. His C-Diff is being treated, and well, Jacob is super happy. I couldn't be more thrilled with that part. I love to see him bright-eyed and talkative. His smile is the best. I have been able to back off on my vigilance a little which in turn helps me.

We have had a wonderful last few weeks with Devin's confirmation and birthday, visits with Zayden, a new van, and no visits to the doctor for Jacob. That is awesome.

I'll leave you with some good pictures.

Love, Karla

Monday, April 21, 2014 9:41 PM CDT

Sorry it's been so long. Jacob is loving being back at school. Our life continues to be interesting though with vomiting and pain, add in blood in his stool and we've made many trips to the ER and doctor with lots of antibiotics and such. Yeah. It's been exhausting. Jacob has been given the go ahead to eat purees, but he wants nothing to do with them.

Easter was okay. Not the same as it has been. We are definitely finding without Dave here that our traditions are changing, as well as the boys are growing up.

Not much else is going on. Trying to just keep the faith and praying Jacob will some day get back to his normal. We have a ways to go.....

Love, Karla

Wednesday, March 26, 2014 9:47 PM CDT

It's been quite the month....between Dave's Declaration of Death, trying to get paperwork in order, file forms, and try not to scream at Social Security. I will still have to wait 7 years since they are FEDERAL and the state declaration means nothing to them without a body. It's frustrating and the discussion is still not over, but it might be a battle not worth fighting.

Jacob continues to do pretty well. He got the okay to eat purees, so yogurt, pudding, ice cream, soup, and fruit squeezie packs are becoming very important around here. He think he is all that eating again. I love it :)

Nursing started again last week! We are thrilled to have help again.

I am doing okay. Lots of adjustments still going on, but such is the life with a missing person. Meanwhile, I just go on loving my kids and Zayden. They need me.

Love, Karla

Tuesday, March 11, 2014 10:22 AM CDT

A big step happened for our family on Friday, March 7th. Dave was declared deceased by the courts. Where does this lead us??? The most important place it leads us to is resolution, a sense that we as a family did all we could to find Dave and when that didn't happen, Dave's dignity was upheld by doing what we felt was best. There were a lot of tears and smiles, happy memories of Dave, and even prayer lanterns sent to heaven for Dave from his favorite fishing spot. I feel like a huge weight has been lifted from my shoulders. I also feel peace that not once did I question this was the right thing to do. I know in my heart he died the day he went missing. I am overcome with emotion at many different times during the day thinking about Dave and realizing this is it....we are moving on to the next step in healing. Part of really stinks, I want him here with us! I don't want to be a widow! But then I realize for whatever reason, I was given 16 years and 8 days of marriage to him...no more, no less. Oh how I miss him.....

Jacob and I are currently hanging out at St Mary's in Rochester. He was not doing good over the weekend with lots of whining and what appeared to be pain in his neck and shoulders. Yesterday, he threw up at 3 AM and again when I got him up from a nap at 10. I wasn't liking the looks of things and ended up calling neurosurgery who sent us for a shunt series of x-rays at our local ER. He was transferred to St. Mary's and so here we are. He is doing just fine. We are waiting for an MRI which could be today, but most likely tomorrow. Busy day of MRI's I guess! We just need to make sure everything is okay in his syrinx (an accumulation of spinal fluid) by his neck. It's been drained and shunted, but with the whole surgery thing he had, it can cause issues. He did throw up this morning too, but afterwards was fine. I am not sure what is up with all this puking again all of a sudden.

Hoping for a short stay and a quick exit tomorrow. We'll see what happens!

Love, Karla

Monday, March 3, 2014 12:07 AM CST

There is something about the fact Jacob went back to school today for 3 hours that feels like a victory for me. He not only went to school but he stayed awake, he didn't get cold, and he smiled and laughed and LOVED on everyone!!! It's been a long time coming. His whole 5th grade year involved grieving for Dave and dropping temps, sleeping, hospital and clinic visits, and a mama who was ready to scream. This year has involved the deep effects of having his brainstem compressed SO tightly. It hasn't been easy watching him lose his skills and sleeping all day, being so medically involved I didn't know where it would lead. The surgery was the worse one yet and the recovery was horrendous, but he went to school today. I call that a victory.

The tests showed he is still aspirating, so for now, he is unable to eat by mouth. We are adjusting feeds so he doesn't have to be hooked up all day. That's a huge plus too. March 18th, a swallow study will be repeated as well as seeing urology on the 19th.

Hope you all had a great weekend!

Love, Karla

Saturday, February 22, 2014 1:27 PM CST

So sorry that I haven't updated, but Jacob had a week long visit at Mayo. We left Sunday because the snow was coming. Jacob started Monday with spina bifida/CP clinic. Everything remains unchanged with his contractures in his knees. We are 5 degrees away from issues in the right knee. I am hoping to keep it where it is so he can still go in the stander.

The good news is we are going to take him off his Valproic Acid and only have him on the Onfi. We have a tapering plan and hopefully this will go smoothly since he's been on it since he was 3ish.

Monday night, was his sleep study. The good news is there is no sign of sleep apnea, but we still don't know if the pressure of the C-Pap will continue to help him, so this will be an issue we work on getting him off the C-Pap some day.

Tuesday, he had a couple swallow studies. It appears his right vocal chord was not moving much, thus causing some aspiration still. Not every time, but there was some aspirating. We will hopefully find out if there is some consistency or food he can eat when all the tests are reviewed.

GI said Jacob definitely has gastro-paresis, meaning his stomach area is basically paralyzed to some extent. We will continue to feed through the J-tube and see what happens. Maybe in a few months, his tummy will wake up. Sometimes this happens when messing with the brain, mostly because of the vagal nerve. The insult to the area makes the stomach protect itself. Overall, I am not too concerned because if that is what needs to happen right now, then it needs to happen. At least he is not in pain and full of gas anymore since he was given bacterial overgrowth and C-Diff meds.

Wednesday, Jacob had a scope to check everything out. His lungs look BEAUTIFUL compared to what they were. ENT injected his right vocal chord to hopefully bulk it up and make it move more to protect his airway. Of course, Jacob didn't wake up from anesthesia right away and when he did, he had bought himself a trip to the PICU for overnight observation. He thought it would be great fun to hold his breath and not cough, so after 4 people around his bed, he finally breathed after his oxygen went down to 50%. Can you say stubborn? Or is it strong-willed? Love it quite honestly that he can fight.

Thursday, we actually got out early so we could miss the snow. We were supposed to go back Friday for results, but got a call to stay home because of the snow since the nurse we were seeing wasn't able to get in.

Music therapy was this morning and time to relax and recharge.

Miss Lu- I would love to get words of encouragement. It has been an extremely difficult time losing Dave and experiencing all of Jacob's complications.

Love, Karla

Saturday, February 8, 2014 11:35 AM CST

Happy 11 1/2 birthday to my Jakeypoo!!!

I think the new formula is slowly changing things around. No throwing up :::knock on wood::: and an overall happier boy. He is having massive air in his tummy which we are trying to get rid of, but other than that, it's been a better week overall.

Jacob went to Walmart the other day and as his brother is showing me different things he wants for his birthday, Jacob starts talking. I ask if he wanted to look at the toys, and he smiled, but starting swinging his arm, "YES! YES! YES!" when I asked if he wanted to look at the movies. I found a couple he'd like, and he picked the Patrick Squarepants movie. He now thinks he has to watch it ALL the time and cries if we turn it off. It is HIS MOVIE. Oh that kid just makes me smile.

I've been really working on slowing things down around here, working on my grief issues surrounding Dave's disappearance, and enjoying Jacob. I worry about him and all the drastic changes he's had in his health, hoping they are not permanent, but preparing myself that they may very well be. He will have appts the 17th and 18th for rechecks on all these issues, so I am hoping and praying for improvement. I know his respiratory status is much better, so that helps my state of mind.

Home schooling started this week, and Jacob has loved having people over.

Hope everyone is having a great week.

Love, Karla

Monday, February 3, 2014 9:53 PM CST

The good, the bad, and the scary....that is how I feel like our life has been going lately.

Jacob can go from fine, to worrisome, to sick, to should I bring him into the hospital, to smiling and happy all in one day. The good part is he hasn't been hospitalized, the bad part is it makes for a tiring day, and the scary part is I don't know minute to minute if he is going to be okay. It's a new place to live and quite honestly, I don't like it.

The biggest concern is his GI issues. Last Wed, his feeding tube was blocked again. Thurs we headed to Rochester in the lovely snow to get it replaced. Number 3 hopefully will be the charm. There has been a lot of vomiting and gagging, then a couple days he's fine, then it starts all over again. Makes no sense.

While in Rochester, we also saw the neurosurgeon since he started having pus coming out of his neck incision. It was cultured and it was MRSA. Another antibiotic.

I am trying hard to be still and let God show me the path I need to follow. I worry about Jacob and what all this means, especially since he is 7 weeks out from surgery. The reality of Dave being gone seems to be sinking in so much and feeling alone in this process. I really miss that big guy and what he brought to our family. Life will never be the same without him in it. It can be good again, but definitely not the same.

Love, Karla

Monday, January 27, 2014 8:08 PM CST

Another cold day and tomorrow's not going to be any better. School was closed today and tomorrow. We didn't go anywhere tomorrow, but unfortunately tomorrow I will have to go out for an appt. Thankfully, it's a good appt though!

I fully expected to be spending the next few days in Rochester after this morning. Jacob woke up with a wet shirt and pillow. This neck was oozing pus and blood. One part of his incision opened up and it's nasty. He has been put on antibiotics, after I sent pictures to the doctor/nurse and then if it gets worse at all, he will have surgery to reopen to wound. There has been a lot of drainage today and he's been super sleepy.

Things like this are so hard for so many reasons. He doesn't talk to tell me what is going on. His pain tolerance is amazingly high and so I don't really know how much pain there is except to know he does cry a lot more than he ever has, especially when I move him. I miss having someone else to bounce ideas off of. Dave isn't here and the friends I had that understand, I don't talk to much anymore.

It's hard making the correct call because you don't want to overreact. With my other kids, I never would. With Jacob's it's so different. Hard to even explain.

It helps to sit here listening to him laugh at Barney right now. Somehow I just need to let my worries lessen and allow God to take care of things. Easier said than done....

Love Karla

Thursday, January 23, 2014 9:58 AM CST

I look at my son, all snuggled on the couch, playing with THE toy and smile. We are not in the hospital today getting a new shunt. His hydrocephalus is under control. He is healing. It will take 6 months to totally understand if his swallowing, breathing, aspirating, etc will be reversed, 2 years for complete healing. His endurance and stamina are still low but he tries so hard. This surgery knocks a grown man to his knees. Jacob is one tough cookie.

Friday, January 17, 2014 12:07 PM CST

Jacob has had a pretty good week with minimal vomiting and overall feeling better I think. He gets tired very easily and hates to put on his C-Pap, but overall he is a trooper. I really don't know how I would handle even an ounce of what he's gone through.

His incisions are healing well. He one in his hair is taking a little longer to heal. His leg has all the stitches out of it already and looks good except for the fact that it is 6 inches long and down the whole thigh on the right side. WOW.

Next week, we will have a recheck with neurosurgery. He will have a fast MRI to check for hydrocephalus to see if it has continued to resolve itself. He is also finally going to get his new TLSO vest so he can sit up better. We are also touching base with GI on his tummy issues.

We are really looking forward to getting some normalcy back into our lives. It's been so crazy for so long.

Love, Karla

Tuesday, January 14, 2014 4:35 PM CST

Spent yesterday in Rochester getting Jacob's feeding tube changed. There was a crack in the tube, so it was making the Pediasure back up into his stomach and coming out of his g-tube and making him throw up. I am glad that was taken care of and hopefully now it will continue working and not clogging up so much.

Jacob has had a very forceful cough today, which is wonderful! It is something I've been waiting for. He also is getting a gag reflex back and just overall seems like he is feeling better. I am hoping he is heading in the right direction. Now if his stomach would wake up! At least his j-tube is in place so he gets his feeds.

Next week, he will see neurosurgery for follow-up. I am interested in finding out if the nerves in the area operated on could control the tummy not waking up. I've read that the vagus nerve control a lot of the emptying of the tummy, so given it is close to the area worked on, I wonder if it has anything to do with it?

In February, he will come back to do follow-up tests to see if he is still aspirating, has sleep apnea, and what his lungs look like. I sure hope there is improvement and that he can lose some of the machines invading our house.

Hope everyone is having a great week! Leave us a note to let us know you are here!

Love, Karla

Friday, January 10, 2014 2:42 PM CST

Jacob had a wonderful visit at school today to see all his friends and teachers he's missed so much. He was all smiles and full of hugs. It didn't take long, and he was exhausted, but it was all worth it. We ran a couple errands afterwards and by the time we got home, he was definitely ready for a nap. The CNA should be here soon to wake him up to start his afternoon routine. It is really never ending all day long. I have been sleeping so hard at night. I'm exhausted.

I received the package from the attorney with all the reports being filed for Dave's Declaration of Death. It's enough to make me sick. Seriously, what the heck happened to my husband? I don't know if I will ever understand...

I continue to get the house back in order after our guests moved out and hoping to someday get the carpet replaced downstairs from the lovely flood we had down there this summer. Michael has turned the family room into a movie theater room. That kid has way too many movies :)

Hope this finds everyone well. I am working on it. Things seem to be getting a little better with recovery. No throwing up yesterday or so far today. We shall see what happens!

Love, Karla

Sunday, January 5, 2014 4:38 PM CST

Brrr! It's a cold one! We stayed home from church today because between Jacob's lungs and mine, I didn't think either of us could handle the cold. I'm still coughing like crazy despite finishing 2 antibiotics and doing nebulizers during the day. Jacob is still rattling too and the lovely cough assist pulmonology wants us to use just causes him to throw up. UGH.

I am seeing improvements. Very slowly. Is he where he was before, no. I know surgery recovery takes time. I just want this to be over quite honestly. I am tired of being scared and worried about him all the time. This morning he woke with a fever. It went away rather quickly, but I was already packed and driving to Rochester in my mind. I can't help but think that way. There have just been too many issues and unknowns.

I don't know if it was being sick myself this past stay or if it was just too much stress overall at an already stressful time of the year, but this hospital stay really did me in for a while. I don't want to go back there. I really want to just stay here and be a family. Don't get me wrong, if something were serious I'd be there right away. I just have had enough right now.

School has been closed tomorrow because of the weather. I've already told the boys it's going to be a clean up the basement kind of day. There was so much damage done when the sewer backed up into the basement, that we are planning on getting new carpet and getting the walls repaired.

Hope everyone is having a great Sunday.

Love, Karla

Wednesday, January 1, 2014 9:16 PM CST

Lots and lots to get used to around here. I've always been honest when it comes to Jacob, so I know I can tell you what life has been like lately.

Jacob requires a lot of care. He has round the clock feeds right now that we are eventually trying to increase back to bolus feeds of 4 times a day. His J-tube is helpful in that he is not throwing up all his formula. His g-tube is working well for meds and we are up to 2 oz of water at a time, instead of 8 like normal. As you see, it's changed a lot. Waiting for the old tummy to wake up following surgery is a big ordeal.

Jacob's lung issues are the biggest concern. He is still getting nebulizer treatments twice a day. After these, I am supposed to use a cough assist to help him cough. Well, I call it a puke machine because that is exactly what it does to him every time. I am calling the pulmonologist tomorrow because this has happened every time since he started it in the hospital.

At night and every time he sleeps, he needs to wear his c-pap because his sats dip too low. He seems to do well with it.

He has a nice time in the morning that he is awake and then he sleeps for many hours. He still receives Tylenol for pain, but not nearly as much as he needed it before. I think he is getting better, but the whole lung thing still has me concerned. I don't see a huge improvement in coughing. He is doing more of it on his own, but I still hear him rattling a lot.

Otherwise, I think we are okay. Not great, not himself, but okay.

Love, Karla

Tuesday, December 24, 2013 10:40 PM CST

Funny how Christmas changes....there was always such rituals and traditions, lots of plans, excitement and preparations. Things had to be just right in a way, I had my ideas and outfits for church and pictures to take, etc.

Last year, I spent my 1st year without Dave. Clearly excruciatingly painful. Is it easier this year without him? Absolutely not. I still cry everytime I think of how much I want him here physically.

This year, life has totally changed in another way. Our sweet Jacob needed so much care that no plans were made, I didn't care much about traditions or rituals, we didn't have much room for excitement and little to no preparations were done.

And you know what? Nothing else really matters because I got the best present. All three of my boys and I and a very special person in our life are HOME. And Dave is here too....Jakey told me so tonight......he's in the eyes, hearts and souls of all three my boys.......

Monday, December 23, 2013 7:00 PM CST

The fluid on Jacob's brain on Friday's MRI, was going to be operated on Saturday by placing a new shunt. It was decided to wait until what Monday's MRI showed, and the fluid looks more like the November scan, which was more normal! He will be rescanned in a month and if at that time or anytime before that time, something changes for the worse, then he will receive a new shunt. We experienced our own Christmas miracle today.

So today, I expected to have Jacob come back from the MRI, go into surgery and have a new shunt, and instead, he was moved out of the PICU onto the main floor. We are waiting for his CPAP to be available at home and maybe soon, we will go home. He has a long recovery I think, but he looks so much more like himself.

On another note, I am sick. Went in Sunday early morning to the ER and they thought I had influenza, despite getting my flu shot. Today, I went back and I have pneumonia. Not fun. Meds seem to be helping a little already though.

A picture for you Jill:

He was so tired he fell asleep playing his toy!

Love, Karla

Sunday, December 22, 2013 1:04 PM CST

Sorry it's taken so long to write. I have been so sick. I finally went to the ER this morning and was tested for influenza. I don't have the results yet. Nothing like being sick when all you hear is beeping, the bed can't even be called a bed, and the room is never completely dark.

Jacob's eye is back to normal. He also had a GJ tube placed so his meds can go in his tummy and the feeds can go lower in his intestines so he doesn't vomit. His lungs sound a little better because he is coughing on his own more, but respiratory is coming in 4 times a day to work on it. That is why he is still in the PICU. He also had an MRI which showed he has hydrocephalus. They think because the fluid is moving better by his brain stem, it is not moving the best in his brain, so if no improvement is seen tomorrow, then he will have a new shunt placed. I am concerned about having another surgery and how far this will set us back.

I really just want to be home in my own bed and with my kids, but then that means Jacob would be left here. There are too many kids in here who are all by themselves.....it's crazy.

I was hoping to spend Christmas with my grandson, but that won't happen. Maybe after we get out, I'll do something special with him.

Love, Karla

Sunday, December 22, 2013 12:48 PM CST

Sorry I haven't written. I have been sick since Friday morning and went into the ER early this morning because I couldn't stand it. I was tested for influenza and waiting the results. So much for getting a flu shot this year. I am so sick I can barely move and then top that off with a horrible "bed", more noise than anyone wants to hear, and a room that is never completely dark....yeah it's fun. Now I have to wear a mask so no one else gets it.

Jacob's eye is back to normal. He is doing an awesome job at coughing on his own, but still has a lot of rattling like he doesn't get it all up. That is what is keeping us in the PICU. Respiratory is in here 4 times a day working on his secretions and lungs. He seems to be awake more and plays with his toy. He smiles a little too. Not totally my Jakey yet, but getting there.

The MRI on last week showed he has hydrocephalus again. They think from getting the fluid moving in his neck, has caused the fluid in his head to build up. If that is the case, he will need to have another surgery to place a new shunt.

It never seems to end around here. I really want out of here and to curl up in my own bed and have Christmas with the kids, but that would mean leaving Jacob here. It makes me SOOOO sad to see that most of the kids on this unit don't have any parent with them :(

I was hoping to see Zayden for his 1st Christmas, but that isn't going to happen either. Somehow things have to start getting better.

Karla

Tuesday, December 17, 2013 7:26 PM CST

Tuesday midday update:

Suction, gag, vomit, suction some more, cough, repeat. That is all I have heard for days. I am happy to see his eyes again very consistently throughout the day with mini naps in between, but his left eye doesn't look right to me. Hopefully with time, it will look better.

I heard half a giggle watching his favorite Sesame Street video and got a smile when I told him Santa was coming tomorrow. Otherwise, he is very unresponsive to wanting anyone to do anything.

I am thinking Christmas may be much different this year. I did get my cards mailed from the hospital yesterday, on Mayo Clinic watermarked paper. LOL I got the boys a couple presents each I knew they really wanted and the rest are coming from some awesome people willing to help us this year. I can't believe how generous people are.

I'm feeling tired today and trying to not let the constant flow of traffic in this room get to me. I can't believe how many people there are involved. My favorite is the 5:50 AM wake up from neurosurgery asking how Jacob is doing today. My answer was, "I have no idea, I am sleeping and would you please figure out why that stupid pump keeps beeping? LOL

Thanks for all the notes. It really helps me. Now if my own family would respond every now and then, it would be even better. HINT HINT

Tuesday evening update:
Well, the gagging, coughing, suctioning, vomiting has slowed down since I last wrote. Jacob is sitting in his chair again and seems to like being up. You can see in the picture that his left eye doesn't look right.

Santa is coming tomorrow! That should be nice. There is a dinner and a program. I should be able to go, but Jacob is on isolation because of his MRSA. Santa will come and see him though with special presents I got to pick out.

I got a call from the associate principal today and the middle school is having a big talent show and activities this week. There will be an update on how Jacob is doing as well as another child who is having a tough time right now. The kids are going to be doing a miracle minute for Jacob and this other child where they play a song and a group of students run around the school collecting money for the kids during one minute. The teachers are also doing the jean day collection. I am so deeply touched by the thoughtfulness of the school to do this!!!

Love,
Karla

Monday, December 16, 2013 3:00 PM CST

Jacob opened his eyes yesterday morning and was awake a good portion of the day. He was able to get communion and take part in our church service via Facetime. He looks better, but has a long way to go. He is still positive with fluid, meaning he has extra fluid on his body, especially his lungs. He has been on room air without needing more than blow by air when his oxygen started dropping. He will have a c-pap on tonight. He seems to need that help. No smiles yet and no voice, but I have seen some small head shakes no.

Devin and I went out to the mall yesterday to Christmas shop a little, but mostly to get out of the hospital for a while. I was doing fine and then I saw an ornament I want to get for Dave and well, it was very hard. We always got a family ornament and one for us each year. We also need to get Zayden his baby's 1st Christmas ornament this year.

Jacob and spent a good amount of time snuggling and we both fell asleep. Nothing like waking up to a nurse calling your name to say for a second, "Where the heck am I? and I hope I wasn't drooling!" LOL

Jacob's bicarb is high as well as his Ph, so he was given a med to help out. He's been getting Lasix to get the extra fluid off of him too. He is getting small doses of pedialyte today and throwing up with meds. I think it's going to take some time to get anywhere with his feeds. Jacob will have a GJ tube placed tomorrow to allow for food to go lower in his digestive tract. Hoping to be home by Christmas. At least that is a goal of mine. If it is before that, great, if not, we will celebrate it here.

Michael and a friend came up last night. Devin's here and will miss school again, but oh well. I can't help that our life just requires a little extra time together sometimes.

Love, Karla

Saturday, December 14, 2013 11:05 AM CST

Had an awesome visit last night from some awesome friends. Jacob has transitioned off bi-pap onto a mask with oxygen. The drains from his brain and his leg came out. The incision from the skin graft looks unreal. Very long and lower in the leg than it was originally going to happen.

Discussion this morning was Jacob had a major pneumonia/collapsed lung and thankfully with aggressive chest PT, A LOT of junk has been taken out of his lungs, stuff that was obviously there for a very long time. He is resting now and will get up to snuggle with mama at some point today.

Dr. Know it All is on rounds the last two days. He rounded this morning without me and well, let's just say, that will not happen again. I cannot stand not knowing what is being decided about his care, even though I agree with what they are doing, it royally pisses me off to have my son talked about without my input.

Love, Karla

Friday, December 13, 2013 1:26 PM CST

Surgery went well. The decompression surgery was very LONG. He was gone from 1-9:30 last night. It was nice to have a room ready for us to sit in and wait here instead of the waiting room.

He came back having problems breathing and over night, he collapsed his right lung. He is now on bi-pap. He seems like he is in pain at times, but we are keeping up with pain meds. He is resting comfortably now and have only seen his eyeballs a couple times.

Hoping he is going to wake up more later tonight.

Love, Karla

Wednesday, December 4, 2013 1:46 PM CST

We have surgery scheduled for Thursday, Dec 12. I am ready for this. By observation, Jacob is doing the best he has done in a very long time. He is happy and smiley and well rested. Realistically though, we are looking at a boy who has major issues right now with his brainstem and it is affecting his whole body. I have no choice but to choose surgery.

We had a wonderful Thanksgiving and have been enjoying a little slower pace here with Jacob home. I have had lots of appts as well as Jacob, but overall, he's been home and keeping himself away from germs except to go to music therapy and church.

Here are some pics of my adorable grandson Zayden! Jacob is very jealous of him too! LOL

Love, Karla

Monday, November 18, 2013 10:32 PM CST

The neurosurgeon we saw today is awesome. I love his bluntness, honesty, and devotion to his patient. He says Jacob's aspirating, swallowing, and sleep apnea is definitely from his Chiari Malformation. The hypothermia is NOT. Yep. He couldn't believe how my boy could drop his temp like he does. I told him about Dave and he was shocked.

MRI of his entire spine is ordered for the 29th. The doctor will contact me with results. He wants to check if the syrinx, an accumulation of spinal fluid in the upper part of his back, is there again. He drained it in 2008. Surgery will be decided after that. The surgery is serious, but easier than the untethering of his spinal cord he had in 2008. The worst part will be the extreme pain afterwards. Jacob will either need a piece of his own skin, from his thigh, to cover the brain back up again or he will need a piece of skin from a cow. The cow skin will cause more chance of infection or rejection. Using his leg will cause more pain.

As the doctor went to walk out the door, he turned around and said, "You are tough. I remember you from before and you are tough." Deb said, "She's even tougher now!"

Jacob will continue to stay home for now until more decisions are made. His severe bronchitis/pneumonia is growing a nasty bug. With his lungs like they are, a viral cold could really be dangerous.

The good news is he is happy. There were many smiles today. He jabbered and talked and told stories. He played with his toy so much today and got mad when it was taken away. He tolerated his feedings better and no throwing up. But most of all he knows that Jesus loves him and so does Mommy! (Something I say to him every night!)

Love, Karla

Wednesday, November 13, 2013 12:21 AM CST

Jacob has been in Rochester all week for his aero-digestive clinic appts. He had a sleep study on Monday night and has had a swallow study, seen pulmonology (lungs), ENT (ears, nose, and throat), and GI, and endocrinology regarding his hypothyroid, growth hormone deficiency, and to have an x-ray to see what his bone age is.

Today is the big day in the OR doing scopes to check his throat, lungs, stomach, and an MRI to check his brain stem where his Arnold Chiari Malformation is. This is where the brain stem in pulled downward farther than normal, and appears to be compressed and causing all these issues we have been seeing- his low temps, breathing and coughing issues, and his aspirating food.

I am shocked at what we already found out, I am guessing today will bring more. Keep Jacob in your prayers for answers and solutions. I am tired of the no solution part.

Love, Karla

Friday, October 25, 2013 1:29 PM CDT

Jacob's bone marrow biopsy came back with no evidence of cancer, aplastic anemia, or any other sort of damage. It did show that the platelets are working (he's already back to normal 6 days later!) and the red cells appear to be affected by his valproic acid, a seizure med.

Yesterday was another sleep all day, temperature dropping day, so off to the ER and onto Rochester. He was in the PICU over night and on the regular floor again. He has rebounded well, but the fact that he is instantly changing at the drop of a hat, is more than concerning to me. Not sure where the day will lead yet.

Love Karla

Friday, October 25, 2013 1:09 PM CDT

Thursday, October 17, 2013 9:19 PM CDT

Jacob is having a bone marrow biopsy Friday to see what is going on with his low platelets and red blood cells. I will let you know what I find out. Hoping for the best.

Love, Karla

Tuesday, October 15, 2013 11:00 PM CDT

Jacob is in the hospital. He once again has low platelets, low temp, and an infection. He came into the ER, was transferred to the critical care unit in the ER because his heart rate was so low. Spent a day in the PICU and is now on the regular floor. I have seen a small return to normal today, but tonight his temp is down again and the Bair Hugger warmer is back on. I am hoping to know more tomorrow about his cultures that should be back and see where we are at. We did see a psychologist to help with his grief too. Big help. Please pray that someday soon Jacob will be back to himself....I haven't seen my Jacob for so long.

Love, Karla

Thursday, October 10, 2013 1:42 PM CDT

Jacob continues to be extremely tired and generally "checked out." He starts the day at school pretty active, but by 10:30, he is out. Luckily, he is able to sleep and relax when he is there, but then when he gets home, he continues to sleep and not eat. We are starting tube feedings again as needed. Next week, Jacob will have a swallow study, see neuro, therapy, and the dietician, as well as a psych evaluation.

We have an official court case now. We are having Dave declared absent first then a declaration of death will be applied for. We are in the court waiting game right now.

I'm trying hard to hang in there. Some days are better than others. Some days are great. Some days are filled with worry. I honestly just want a break and to have these multiple crises over with, but that is probably asking for too much.

For your viewing pleasure, here is my 6 month old incredibly cute grandson!

Love, Karla

Wednesday, September 25, 2013 5:22 PM CDT

Well, we passed the 1 year anniversary of Dave's disappearance. I was really dreading it, but when the time came, I realized how much peace I actually had. I know that God is good. I know that I can do this. I know that somehow, some way things will get better. It may take a lot longer than I am willing to admit right now, but I believe it will come.

We spent Saturday celebrating with family and friends at a fundraiser for our family to help with court costs. Tomorrow, I meet with the attorney and with any luck, the process will continue and sometime in the next few months, we can declare him dead. This is a very hard decision, but after researching a lot, I know I have to do this for my kids and for me.

Jacob has been super tired. I figured out that it was from his one med he started recently, so the doctor suggested we decrease the dose and give it at night instead of the morning. I need him to be awake during the day for school! Not to mention, he sleeps from the time he is done with bowel care after school and doesn't wake up until the next morning.

Thanks for the thoughts and prayers. Not sure how many people read this site, but I figure I should update for those who do.

Love, Karla

Friday, September 13, 2013 8:59 PM CDT

There was a body found which was thought could possibly be Dave. DNA was taken from the molar and his dental records were compared. It was determined today that Dave was ruled out as a possible match to the body.

While our family is very sad because we so badly want to find Dave and finally be able to be at peace, we rejoice for the family who will finally have some closure in knowing their loved one can come home.

Tomorrow, the 14th of September, would have been our 17th wedding anniversary. Reality is, we had 16 years together, some extremely happy times, some extremely sad times, but always time together.

Next Saturday, we will gather with friends and family for a fundraiser to help with the costs of declaring Dave dead. Sunday, the 22nd, will be the 1 year anniversary of his disappearance. Prayers would be greatly appreciated as we face this time head on and with hope.....

Love, Karla

Thursday, August 29, 2013 9:06 PM CDT

Jacob is getting ready for the big middle school! Hard to believe my baby is growing up. I never thought he'd make it this far. I am actually able to dream about graduation :)

We had a big meeting this week to orientate everyone to Jacob. The meeting went wonderfully! I am thrilled and so impressed with his staff. Unfortunately, Jacob didn't take it as well and dropped his temp horribly. It was so bad, it didn't even register on the thermometer. I am stressing because he is SO stressed about everything. The doctor feels he is having panic attacks and shutting down. It should be interesting to see what happens once he starts school.

The process of getting the declaration of death has begun. The motion has been filed with the courts and now we wait for the facts to be reviewed by a judge.

I am hanging in there. Trying hard to just be still and let things happen as they happen. I am not patient, so I am really being tested here.

Keep the prayers coming. It's been extremely painful all along.

Love, Karla

Monday, August 19, 2013 8:43 AM CDT

The month is going fast. Soon school will be upon us. I honestly can't wait. I love having the kids around, but they also need an outlet to keep busy, and I need time to myself! :)

We are in the process of declaring Dave dead. Since there is no body, a death certificate cannot be issued, but a declaration of death is legally equivalent. We should be able to get some of his funds released with this and be able to change my name to the titles of the vehicles, but we are still trying to find the answer if Social Security will release survivorship benefits to the boys.

This process has been a hard place to come to, but with any luck, it should be relatively painless I hope. I need the closure in what ever manner that comes in.

Please continue praying for all of us.

Love, Karla

Friday, July 26, 2013 10:47 PM CDT

Life has been interesting as time passes. We are no closer to find Dave then we were 10 months ago. In reality, we may never find him. That in itself is hard to swallow, but such a real reality for us. His birthday is coming up August 5th. Last year, I had a big party for him and Jacob-Dave was 45 and Jacob was 10. I remember him tell me he couldn't possibly be that old....I guess he will always be 45. I am so glad now we had that party. That was the last time most of our family and friends saw him.

Jacob is doing amazing. He is super sassy lately with no being his word of choice. I am trying to explain to him that it is fine to be funny, but if he really means yes, he needs to say that. So far it is starting to sink in, but no is still his favorite answer. LOL

We are preparing for Jacob to start middle school. I talked to his teacher today, and we will meet to discuss his needs soon. I am excited for a new start.

Devin will be going on a mission trip to North Carolina with the church youth group. He is excited and so am I that he gets a chance to grow in faith while helping others. Awesome stuff!

Closing this entry with total cuteness because that is what Grandmas do best. Here's my sweetheart, Zayden John!

Monday, July 15, 2013 9:41 PM CDT

There were two more searches by water last week for Dave, which produced absolutely nothing. My feeling is they have searched the entire area we live in by land, by water, by air....NOTHING. He is obviously not here. What that means, I could speculate, but I have no real proof and neither does the sheriff's dept. All possible leads and ideas have been exhausted.

Jacob took this search very hard again. I think he expected to see Daddy walk in the door. I forget to sensor what I say around him sometimes, forgetting how much he understands. At the same time I think he should know some things about his daddy, so it's hard.

My grandbaby Zayden turned 3 months on the 10th. He is really about a month old since he was a preemie. We got pics taken, so I will share when they are back! He is SOOOOO cute!!!!

Love, Karla

Sunday, June 30, 2013 10:06 PM CDT

Asking for prayers....After much thinking and contemplating the whole situation with Dave, I think I know where we can find his body. He definitely is not alive. We have exhausted that possibility, but feel there is a good chance he is in an area that has not been searched. I truly believe in this and ask that you pray with all your might that the investigator is able to get out with the cadaver dogs within the next week or two. I know the power of all your prayers, so I ask that you continue to pray for this particular issue.

Thanks!

On a funny note, Jacob decided to start snoring at the table the other night. I told him to stop or he'd have to leave the table. He snored again, so away he went. He sat there, snoring as loud as he could just to see what he could get away with, and when he got no response from me, he stopped snoring. I asked him to let me know when he was ready to come back and he said yes. Oh my. He is so stinkin' smart!!!!

Love, Karla

Friday, June 21, 2013 8:19 AM CDT

We have been on vacation for the past 9 days. We went all the way to the other end of town, 1/2 hour away, and stayed with some friends because our basement was flooded with sewer and sewer gas. Sometimes all it takes is to get away for a while and refocus.

Life is getting much better as we try to simplify a little and get back to the basics. Too much has happened the last 9 months and it has had us reeling.

Father's Day wasn't as hard as I thought it would be. We were able to go to church, spend time with family, Michael spent time with Zayden and his dad's family, we went out to eat with our friends, and Devin spent the day with his Godfather. Each of my boys had a male father figure in his life that day. We spent lots of time reminiscing about Dave and it was very nice.

Hoping for continued better days ahead!

Love, Karla

Monday, June 3, 2013 10:16 AM CDT

Make sure you check out the last post for Dave's obituary.

Here are some details about his service.

We got to the church Monday early so Little Miss Anxiety here could calm down before anyone came. It also was a chance to get something to eat and visit with family as they got there. There were so many family, friends, Dave's friends, people I worked with and people from the kids schools, it was amazing. The boys and I stood together so everyone could talk to us and give their sympathies. I was so proud of my boys and how they could show their emotions, be polite to those they didn't know well, but knew me, and give hugs so freely to those they knew. Our family gathered in the back to go up together after Pastor Steve said a prayer and Michael went to the bathroom quick! LOL I will share the song we walked into with you in the next posting here in a second. Todd, Dave's best friend, carried up Dave's guitar and Terry Burt, Dave's buddy from church played it. Tom carried up Dave's fishing pole and his tackle box setting it next to this picture. I think this moment made me cry the most.

After we were seated, Pastor shared a prayer and then we sang You are Mine and I Will Rise by Chris Tomlin. We then shared our memories. Here they are .grab a cup of coffee and enjoy!!!

Karla
When I first met Dave he said something he was never able to live down. He told me that he used to look at only pretty, skinny girls, than he realized that there were other women out there too. So I said, Thanks! You think I am fat AND ugly!

My dad died when I was a baby, but Dave still wanted to ask someone for my hand in marriage. He asked my brother-in-law Bill, which was very special.

Dave loved to fish. It was his way of relaxing and checking out for a while. He was often seen at Schafers Boat Landing on Lake Onalaska.

He loved to camp too. Id do it to please him for the most part but sitting outside with a bunch of bugs isnt my idea of fun.

Dave was so excited to buy an electric guitar and wanted to learn how to play it so bad. He loved playing in the praise and worship band at church.

Dave loved our church and he loved God. He was serious about his faith and all it meant to him. He especially loved when someone would have a new baby in church so he could hold the baby before I got there. I will never forget seeing Dave holding little Felicity Rankas in those big arms of his.

Dave loved jalapenos, spicy food, and anything super hot.

He would eat chips and crackers over chocolate any day.

Give him anything apple flavored, and he was happy.

There were many movies he nearly wore out from watching them .the Gilligans Island series, Dukes of Hazard, Ironman, any Mel Brooks or Rodney Dangerfield movies, and of course James Bond, Star Wars, Star Trek, and the one that made absolutely no sense to me- The Three Stooges.

Dave loved the Blue Angels and all of the air shows. Hed come home every year sunburned. I guess he never learned to use sunscreen despite many warnings from me. One year, he was so sunburned, I swear I heard his skin sizzle as he took off his glasses.

I am convinced he bought Altoid mints just so I wouldnt eat them.

Sundays were often spent watching the Packers. He definitely never missed a game. If it started before we got home, he listened to it on the radio.

When I first met him, Dave wore overalls lets just say, that didnt last long!

He loved listening to 95.7 the Rock. Dokken was one of his favorite bands. Country music was his 2nd favorite.

There was always a hat on his head unless he was at church.

He sat so goofy in his vehicle that he broke every seat hes ever owned, except I wouldnt let him ruin my van seat!

When we were going to get married, Dave had to pass a test called, Name all my family members, before I would marry him. Thank God he passed!

He LOVED being an uncle to all the nieces and nephews. He especially loved holding the babies, and hanging out with George and Justin. He was a very quiet guy, but took everything in and enjoyed being with family.

He always loved to see what kind of food my sister Sandi would cook. He especially loved if she made a fruit salad with blackberries, to which hed comment, Are these blackberries!?!??! He was such a dork.

He rarely got mad, but when he did you knew it. One of his favorite sayings, which I have no idea what it really means is, Who put the filth and foul in your filth and foul?

He always called me honey.

I had fresh flowers every day for the first several years of our marriage. He loved bringing home flowers.

Dave tucked me into bed every night. That is what I miss the most.

Dave loved life. He loved his friends and family. He loved God. He was so proud of his three boys. He loved driving school bus and talked about how much he loved it all the time. He was just an amazing, quite, shy man who once you knew him he could make you laugh like crazy. Dave was always good for a laugh, mostly to laugh at! Hed always say, Go ahead, laugh it up fuzzball! Man I miss him .

Jacob

Daddy always sang, Good Morning, Good Morning, Good Morning to you!

Daddy was a great snuggler.

Daddy loved to brag to people about all the things I could do.

He always sang, You Are My Sunshine to me.

When I was born, Mom couldnt be with me right away, so Dad stayed with me. I was always so close to my daddy. His voice always calmed me down.

I miss my dad so much. I just dont understand where he went.

Angela

Every day I stood at the window and knocked at Dave when he came home for work. I would scream at him, HI DAVE! DAVES HOME!

If I forgot to hug him when he walked in the door, Dave would ask me with a really sad face, Wheres my hug?

We loved to snuggle on the couch together.

If I didnt listen to Karla, all Dave had to do was look at me and Id behave.

I was Dave special girl.

Michael

When I first met Dad, I called him DAY. He accepted me as his son immediately and soon I was calling him Daddy. I cant thank him enough for always being there for me. The awesome thing though was he always talked to my other dad and loved my dads family. He knew it was important for all of us to get along to make me happy.

I loved to wear my dads cowboy boots.

My dad always called me Buckwheat.

He had this most annoying way of ordering from the drive through. He never could understand a dang thing what we wanted and then when he got our order from the window, he always grunted and groaned reaching for the food. The more we made fun of him, the more hed tell us to shut up!

Dad and I always watched wrestling together on Mondays and Fridays. It hasnt been the same without him watching it with me.

One time Dad took me out on the boat with him and asked me to hold the rope for him, which I just happened to drop. The only problem was he forgot to put the plug back into the bottom of the boat and so imagine Dad trying to quickly catch the boat before it sunk! Lets just say he wasnt too happy!!

One night at supper, Mom asked Dad if he wanted the last piece of steak. Devin also asked Dad if he wanted the rest of his. Dad said, Sure! Give it to the fat guy!

I will always love you Dad for being there for me. I know you were with me the day Zayden was born, and I hope I can be as good of a dad as you were for me.

Devin

Dad and I loved to go fishing together. One time we were ice fishing and I lost my boot in the hole. Dad had to fish it out for me. Another time I fell into the lake. Dad didnt want Grandma B. to know this, but its too late now Dad!

If Dad was ever fixing something, I always had to get my tools and fix it with him.

Anyone who ever knew my dad has seen his butt crack at one time or another. We were constantly telling him to pull up his pants. I named his butt crack Bill no offense Uncle Bill!

Dad always made these goofy faces which drove mom crazy.

One time, Michael and I were going to see Ashley, and Dad asked us where we were going. We said we were going to Hell, and he said, Have a good time!

Dad always laid on the floor when he watched tv.

He loved spending time in his man cave downstairs. Its hard to go down there now because we miss seeing Dad down there.

Dad liked to set up the camper in the yard with me. Wed even start a fire and camp out.

These are just a few things that remind us of Dad. He was an amazing man. He often complemented us and told us how much we meant to him. He also had a very crazy funny side and had some of the best sayings and funny jokes ever. He is truly missed.

Karla

THANK YOU doesnt seem like strong enough words for all you have done for the boys and I since this nightmare started on Sept 22, 2012. Pastor Steve, you have been there to listen to all my worries and fears, my rantings and ravings, answering the phone whenever I called, and went above and beyond in the search for Dave. Not just anyone would do what you have done and I hope you truly know how much I appreciate your love and support because there have been so many days I literally wouldnt have made it through without your words of advice.

Mark your dedication to Daves case is remarkable. Youve taken time out of your own life to look for my husband and that will not be forgotten. Youve put up with my numerous phone calls and emails and all my craziness. You are truly a man of your word and your dedication is something to be admired beyond belief.

To my church family and community, thank you for supporting us with your prayers and hugs, your support, and financial gifts. I wouldnt be standing today if it wasnt for you.

To my family, which also includes my friends because you ARE family to me, where do I start?? You descended on my house as soon as you heard what was going on. You fed us, loved us, held my hand, listened to me cry and wiped my tears. You were always the first ones to email me or call me when you knew I was having a bad day and you always knew just what I needed before even I knew. You love my boys and have stepped up to make them feel loved and cared for. I can never ever begin to thank you enough for being YOU. To my sisters Lista and Sandi, I never realized until now how much you love me and how much you would do for me. To my mom, thank you for all the advice on how to live without Dave, but I am still not going to start a garden.

To those that helped in the search, you are amazing. You took days off of work, hoped and prayed, spent time looking for Dave out of the goodness of your hearts, someone of you spent hours looking for someone you didnt even know, but helped simply because you cared, I so wish we would have found him .I wish that more than anything, because without a body it doesnt seem quite real, but maybe someday we will get our answers. May God bless everyone of you, as you have blessed my boys and I.

Forgot to share my story about the investigator, Mark. He came with his wife to the service, which I thought was amazing. So anyway, when you are in a situation such as literally losing your husband, life is no longer the same. You have police and investigators searching, asking questions, and more questions, and you are constantly THINKING about what happened, why, etc etc. I learned early on that somehow, and anyone who knows our family knows this about us, I needed to have some humor in this. I remember Mark and one of his investigator friends coming over right after Dave left to look through our house for Dave. One of them looked behind the dryer! LOL Imagine 6'5" Dave behind the dryer! LOL!!!

I got to know Mark pretty well through the last 8 months and have talked to him all the time therefore I thought I had the right to pick on him. He is really shy overall and so when we had the news conference he was so nervous and hated having to talk. There was a big murder case here that was on 48 hours and Investigation Discovery. I teased him that I sat and watched both of them just to see him being interviewed. He said when the cameras were there, he purposely avoided them. I decided on our last search to inform Mark of my great idea that we could go on Investigation Discovery channel on the Missing show together. He didn't like my idea too much. LOL

When Mark got to the church, I asked him if he could read the obituary to which he said, "You know how I feel about talking in front of people!" I told him that is why I didn't ask him until he got there because he might not come if I had asked him before! I did ask if he could at least say something about the case and he said I suppose and smiled. Next thing I know, Pastor Steve is handing him the obituary to read and he agreed to get up there and read it! LOL Oh man, he is so fun to mess with! He said some of the nicest things about working on the case.

When I said a thank you to him, I made sure to say I enjoyed giving him a hard time and he was probably glad for caller ID so he didn't have to answer the phone every time I called!

As hard as all this has been, I thank God for Mark, someone who truly cares, who worked so hard to find Dave, and also has been so fun to mess with. Everyone needs to laugh through the tough times as well, and thankfully we have been able to do that. I received an email from Mark yesterday saying what an amazing service we had and what a great family I have. I never thought I'd ever be in a position to know an investigator like I have, but thankfully God can help make even the tough times bearable and even fun at times.

The scripture read for Dave's service were two Psalms I found in his notebook and highlighted in his bible.

He loved the 23rd Psalm and Psalm 25: vs 4-6: Show me your ways O' Lord, teach me your paths, guide me in your truth and teach me, for you are my God and Savior and my hope is in you all day long. Remember 'O Lord your great mercy and love for they are from of old.

Pastor Steve then gave his message which basically said while we don't understand why things happen to good people, what we do know is the promise God will never leave us.

Our friend Rosie Moua sand Through Christ. Next were prayers and commending Dave's spirit to the Lord. We sand Blessed Be Your Name and then walked out to God is Good.

We had a balloon release with family and then went in for fellowship. It was wonderful to have a chance to visit with so many people.

After cleaning up, we went home, changed clothes and went to Iron Man 3. Dave LOVED Iron Man with all his heart, so it was only fitting we would go see it on his day

The service was absolutely more than I expected It went very well and paid tribute to a wonderful man. There were people I wished had been able to come, but those that came were very loved and supportive.

Friday, May 24, 2013 6:14 PM CDT

Dave's obituary:

ONALASKA David Wayne Schroeder, 45, of Onalaska, went missing Sept. 22, 2012, and has not been found to date. He was born Aug. 5, 1967, in La Crosse, to Wayne and Lorraine Schroeder. Dave grew up in Bangor, and graduated Bangor High School in 1985.

Dave was united in marriage to Karla Domogalla Brophy on Sept. 14, 1996, at St. Pauls Lutheran Church in Bangor. Dave was blessed with three sons whom he adored, Michael Brophy, and Devin and Jacob Schroeder. Dave worked at many jobs over the years, but most recently at Beaver Builders in Holmen, and as a bus driver for Ready Bus Lines in the school district of Onalaska.

Dave loved to go fishing and was often seen at Schafers Boat Landing on Lake Onalaska. He also loved watching WWE wrestling, movies, air shows, especially the Blue Angels, his beloved Packers, the History Channel, races at the La Crosse Speedway, playing guitar in the praise and worship band at Journey Lutheran, and spending time with family and friends. Dave had a wonderful sense of humor and a heart of gold. His kindness and gentleness were an amazing quality that will never be forgotten.

Dave is survived by his wife Karla; three sons, Michael Brophy and his fianc�shley Holub, Devin Schroeder, Jacob Schroeder; his foster daughter, Angela Loehndorf; and his grandson, Zayden John Brophy. He is also survived by his mother, Lorraine Schroeder of Holmen; his mother-in-law, Belva Domogalla; and father-in-law, Marvin Carter of Hastings, Minn.; his brother, Chuck Schroeder of La Crosse; brothers-in-law, Gary (JoAnn) Domogalla of Alexandria, Minn., and Kevin (Bobbi Jo) Domogalla of Madison, Neb.; sisters-in-law, Lista (Dean) Klocow of Hastings, Karen (Rick) Refshaw of Eagle Bend, Minn., and Sandi (Bill) Dufault of Savage, Minn.; his best friend, Todd Simpson of West Salem; and many nieces and nephews, cousins, and friends.

He was preceded in death by his father, Wayne Schroeder; and his father-in-law, Richard Domogalla.

A memorial service will be held at 1:30 p.m. on Monday, May 27, 2013, at Journey Lutheran Church, 2703 Sand Lake Road, Onalaska, with Pastor Steve Meyer officiating. Friends may call an hour before the service.

A special thank you to Sergeant Mark Yehle and the La Crosse County Sheriffs Department, area First Responders, the Dive and Rescue Team, DNR, Search and Rescue teams, search and cadaver dogs, and numerous other agencies which helped in the search for Dave. Your dedication and caring nature are to be commended.

Love, Karla

Wednesday, May 22, 2013 9:55 AM CDT

It has been 8 months today since Dave walked out the door, never to return. To say it gets easier is ridiculous...the pain honestly deepens as the shock wears off. I have a lot of other issues weighing heavy on my heart too which I cannot share for fear of causing more problems. Just know that I need your prayers.

Jacob is doing okay. He seems to have leveled off a little with his temps and seems to be happier.

Dave's memorial service is on Memorial Day, at 1:30 at our church, Journey Lutheran. I am getting things ready for it and so far I think things will be quite nice.

Love, Karla

Tuesday, May 14, 2013 9:07 PM CDT

Happy belated Mother's Day! I received the very best Mother's Day gift EVER!!! I got to hold my grandson for the first time!!!!

He is SO stinkin cute! Don't you agree????

Jacob went to his 5th Grade Bash, which is a big dance/party for those going into middle school. I was a little worried about going more because of how I'd feel about him not being able to do the things the others kids could, but then I remembered we do hard in our family and I wanted the other kids to always remember Jacob was THERE. Talk about a proud mama moment when about 20 girls circled around him and danced and sang to him!!!!

Things are going okay here. Still planning Dave's memorial service for Memorial Day, May 27th at 1:30 PM, with family visitation 1 hour before.

Love, Karla

Thursday, May 2, 2013 1:33 PM CDT

Hello everyone,

Things are continuing to be extremely crazy and hectic here, but still finding time to enjoy family and friends. There have been 2 searches for Dave with no luck. The first one involved the investigator, DNR, and the La Crosse Dive and Rescue team with a cadaver dog. There was interest in the same area that the previous dog showed, but nothing was found. There was an extensive search of the water and shore. I so hoped something would have been found.

This past weekend, on Devin's birthday, our church, family, and friends did another search of the area and nothing. So hard....

The hardest thing is if he is not found, we cannot declare him dead for 7 years. This means I cannot claim his life insurance, sell anything with his name on it, or get any benefits for the boys. I do however have a lead on a job so if all goes well, I might be able to support the family. Please pray for this!

We are going to have a memorial service for Dave on Memorial Day, May 27th, at 1:30 PM. I struggle with the fact there isn't a body, but I also feel the need to have a service where we can publicly gather to remember and honor his life.

I'll leave you with some pictures :)

Monday, April 15, 2013 11:10 AM CDT

I realized I needed to update Jacobs site. Jacob was in the hospital for a week with hypothermia. He was on oxygen, a heating blanket, IV antibiotics, along with numerous tests done. Absolutely no answers were found. There is no reason for him crashing like he did. We thought it was his thyroid, but that idea was thrown out. He is on meds for his thyroid anyway however. He came home, spent one night here, and then crashed again. Off we went in an ambulance to St. Marys in Rochester. We were sent home again. So far, he is dropping temps every day, but the last two days have been better in that he is eating and more alert. We went to Mayo on Friday the 12th to see hematology. She thinks he is in bone marrow failure. Tons of blood tests were done, they will be redone on the 23rd and then a bone marrow biopsy will be done if the results still look bad. I am convinced it is all happening from his one seizure med.

Happy news!! Zayden John was born on Wed, April 10th to my son Michael and his fianc�shley. He was born 7 � weeks early, but was born breathing on his own and able to maintain his body temp. He is starting to take a pacifier and is getting tube fed right now. Of course, he is absolutely beautiful!!!!

A search was done for Dave on Mon the 8th, and there was evidence he might be in the marsh. There will be a dive and rescue team going back out there when the waters recede a little. The lake out here will also be checked. The whole thing is surreal and while I want answers, I am starting to get scared all over again.

There is just too much happening lately to try to make sense of any of it please keep us in your prayers as we deal with Jacobs issues and try to find closure with Dave.

Love, Karla

Saturday, March 30, 2013 1:30 PM CDT

We are at St Marys in Rochester. The labs show his thyroid TSH levels are elevated, which indicates he has hypothyroid, which means his thyroid isnt working properly. I have it, as well as my sister, mom and Daves mom. His adrenal glands are also suspicious as normally in a crisis they should help maintain the body and make cortisol, so he received steroids in the ER to help. His body temp is coming back up slowly, but not yet where it should be. He is also on oxygen as his sats are not maintaining on their own. There is suspicion he has an infection. Of course his urine looks really bad already, but theyve been warned it will and always does. He is on antibiotics for a possible infection. The labs will be coming in over time, so as they do, we will know more. His shunt thankfully looks good, so no worry as of right now that it is malfunctioning. Lungs looked clear.

He is awake and looking around, but not very responsive. Tom and Deb came up with Angela and Helen Mae last night. Of course, Jacob smiled and talked to Tom, hit himself in the head over and over for Uh OH! Spaghettios! At least someone could get a smile out of him Devin is with me and Michael had to work. I never made plans for what I was doing for Easter except going to church. Well, I should always know that my instincts are right.

Its funny how I have been saying that something just isnt right about him for a while now. A mother just knows. When I held him Thursday night and he literally gave me goosebumps from holding him, I knew it was time.

I so wish Dave was here, chomping on the stinkin ice from the ice machine he loved at St Marys. I wish he was here to yell at for annoying me for chomping on those stinkin ice chips. But I know he is here...I have to believe that. They say a thyroid often stops working because of stress. Well, if I cant understand what the heck has happened to Dave or comprehend the last 6 months, just imagine how he feels. The daddy who always took care of him and loved him is just gone.....

Everything is going to be alright though and we will get through this. This place brings me comfort for some odd reason and so for now, Ill rest in that comfort and the comfort of all of you. I love you all!!

Love, Karla

Sunday, March 24, 2013 9:52 PM CDT

Have to share the CUTEST picture ever!!!

It's been 6 months today since so many things changed. I learned that a whole community can rally together. I learned that people you don't even know can care deeply for you. I learned that people you know care even deeper than you ever realized. I learned who I could count on and who I couldn't. I learned that family is such an incredible gift I took for granted. I learned just how much my brothers and sisters love me. I learned that my mother's strength through my father's death is something I have drawn from and have admired more than you can imagine. I have learned that friends are my rock I lean on when I have a hard time standing. I have learned I have the most amazing pastor ever. I have learned that my boys are my world. Each one gives me something so real and pure. I have learned that my heart has room for Michael's beautiful Ashley who I have come to love so much. I have learned life lives on in our grandson who I cannot wait to meet and love beyond anything I've ever imagined. I've learned love can NEVER die when it is rooted so deep. Love never ends. Most importantly I've learned that God is good, ALL the time, not just in the happy times, but in the darkest hours too. Thank you all for being there for me, even on the ugliest of days. Your love and prayers have carried me.

Love, Karla

Sunday, March 17, 2013 6:13 PM CDT

I went over to the middle school to meet Jacob's teacher for next year and the see the classroom. I am so excited for what the next 3 years will bring. I feel very supported already and was really excited to see she had Jacob's schedule in the works :) I like the fact that the specialists that have followed Jacob since preschool will still be involved, so that is really awesome. The only new people will be speech and adaptive PE.

Jacob's EEG showed he had 3 seizures while we were at the hospital. For the most part, the startling we are seeing is not seizure activity, unless there is stiffing of his arms with it. He obviously just is very very sensitive to sounds which we already know. We are now in the process of adjusting meds which is always fun.

The whole Dave thing is so overwhelming. It will be 6 months on the 22nd since he left. I am really beginning to think we will never find him.

Love, Karla

Tuesday, March 5, 2013 10:11 AM CST

Jacob has been having startles, so the neurologist wanted to know if they were seizures. She planned a 24 hour EEG for the 4th/5th. We got here at 9:00 yesterday, got in our room and didn't leave the room to get hooked up until about 11:30 or so. Jacob laughed so hard when they glued on the EEG leads. They used an air gun to dry the glue, and he thought it sounded so funny! I don't know how hard he will be laughing when we try to get the glue out of his hair! Of course, he had about 10-15 startles during the time we were getting the leads on before it was recording. We got back to the room around 1, and Jacob finally got to eat. He loves their mashed potatoes :) We got the dingy nurse today who told me I could go eat around 2, then when I came back 1/2 hour later asked me if I wanted to go somewhere to get something to eat. I was like....HMMM you were sitting in the room with him for 1/2 an hour, what do you think I was doing? We got a new nurse at 3 thankfully! All of the cath team is excited he is back. They love seeing him.

I saw Randy, one of the child life staff here, and told him about Dave. I had to laugh because he asked if I had filed a missing person's report on him. Oh, I KNEW there was something I forgot to do 5 1/2 months ago! LOL

Found out the insurance has now cancelled my morning help since it is a different agency than the one we use at night. I swear, they are going to be getting a personal visit from Jacob and I soon.

Last night, I was sitting in the cafeteria eating supper and a man next to me was talking to I am assuming his son. He was saying that the doctors were taking their loved one off the ventilator and it was just a matter of time before he died. The conversation went on from there and ended with, "Say a prayer for him." I instantly said a prayer for this family I didn't even know, and was ever so thankful that I could go back upstairs and give my sweet sassy boy a kiss. Life is too short!!! I think about that all the time when I think how Dave just left without saying goodbye...now go tell people how much you love them!

Love, Karla

Thursday, February 14, 2013 6:08 PM CST

Day 145: 4 years ago today, we renewed our vows on Valentine's Day. Some people wondered why we would do that, given it wasn't our anniversary or any special year. We decided to renew our vows because we wanted to recommit ourselves to each other after all we had been through with Jacob and also wanted to have a fresh start in our church. It was a beautiful ceremony, with Devin and Jacob as ring bearers and Michael giving me away like he did on our wedding. As we shared our vows, Dave got choked up and both of us shed tears. We had been through so much and yet we were still together. Now with everything that has happened with Dave's disappearance, I am so happy we renewed our vows 4 years ago. I know with all certainty that our love for each other was real and alive and while I may not know where he is and what happened, I know our love will never die....Love you forever Dave.

They say, "Every party has a pooper, that's why I invited you!" Well, Mr. Puker Poopsalot strikes again. Poor Jakey was at his Valentine's party and got sick. I don't understand what the heck is going on with him. He was fine yesterday overall and now he is sick again.

I finally used my Christmas present from the boys today. Since Devin said, "Heck no!" to being my Valentine, I went and used my massage gift certificate. It was HEAVENLY. 60 minutes of pure heaven.

Happy Valentine's Day everyone!

Love, Karla

Saturday, February 9, 2013 8:27 PM CST

Day 139: A couple weeks ago we had our annual party/meeting at church. In the annual report, Pastor Steve wrote: "But the year has not been without challenges. Having one of our members, Dave Schroeder, go missing this fall has been traumatic, not just for his immediate family but for our whole church family. Dave�s absence leaves a hole in our tapestry."

I have thought a lot about that comment...there IS a huge hole in our tapestry. I will be the first to admit, I took the fact that Dave was always here for me for granted. We were a team, the two of us. Where one was, the other wasn't far behind. We took care of the kids together, especially Jacob. And now all that has changed. I sure do miss him...

Tonight, we went to church for a chili cook off for the youth trip Devin is going on this summer. It was awesome. I was having a little anxiety since it was the first thing I've gone to at church like that since Journeyfest, the day Dave went missing. Everything was fine, but I know he sure would have loved trying all that chili.

Tuesday, we are going to Rochester to see Dr Yummy and the neurologist. The plan is to take Jacob off his Topamax for his seizures and keep him on the meds he's on now because the Topamax is messing with his calcium carbonate levels. He's been super jumpy lately too, so we will see if any of the jumping he was doing during the EEG registered as seizure activity.

Hope everyone is having a great weekend :)

God is good, ALL the time!

Love, Karla

Wednesday, January 16, 2013 8:48 PM CST

Day 116: Serious headache here over the stress of the day, but it has been fairly good stress, so I�ll take it.

I had my interview with the news channel this morning for a followup story. It went really well.

I had my meeting with the supervisors for my job. There were 8 points of discussion we needed to have, including talking to my immediate supervisor to review the guidelines set for me as a adult family home provider. I will meet with her tomorrow. I have to put a plan in writing on what I would do if Dave does come home. If he were to live here again, I automatically lose my job. Michael is going to be part of my backup plan for helping me out so they need to talk to him about what his expectations are. We talked about communication and alleviating any negativity that we may be feeling toward each other about the situation. I need to have respite set up immediately for the person I would be taking in. I will also be visited and watched really closely. Overall, I needed to feel comfortable with their stipulations, and I do. I think I will get a better feeling after talking to my supervisor tomorrow.

I felt like throwing up the whole way home. I am frankly tired of all of the drama surrounding our family and just want to find some sort of peace with all of this. I want to know what happened to Dave. I want to have some sort of closure so I know how I am supposed to feel instead of this mixed up mess that resides in me. I want my job back and to have a routine of caring for someone again. I want to feel normal again, if that�s even possible.

Love, Karla

Tuesday, January 1, 2013 5:37 PM CST

Happy 2013 everyone. Christmas was spent with friends and Dave's brother and mom. It was truly the most painful thing I've experienced since Dave left. We made a lot special memories and had many happy moments, but overall, I am so glad to have Christmas behind me. I am going to have a golden halo and a saint medal waiting for me in heaven after having to put up with Dave's brother for a week. He is MUCH more mature than he ever was and overall followed all my rules, but he is exhausting emotionally.

Instead of going to our church's New Year's party, I chose to stay home with Jacob while the boys went. I have decided that instead of putting myself through things I know will be heartbreaking, I am going to take care of myself a little more so I don't end up feeling worse afterwards. I really need to do some self preservation here.

Hope everyone had a wonderful holiday season. Continue praying for answers to our questions and for peace in my heart.

God is Good, All the Time!

Love, Karla

Wednesday, December 19, 2012 9:54 PM CST

Day 88: Quiet Christmas service at church tonight. It was very emotional for me, given this is our first Christmas without Dave. Angela started crying too, saying she needs me...it just broke my heart. Deb, Angela, Jacob, and I all had communion together while Pastor Steve said a prayer for us.

Dave's brother is coming for Christmas this year. It is going to take all the patience in the world, but I will do it for Dave. He so wanted his brother to come home so he could see him...I have to do it for him.

We are supposed to be hit with a horrible blizzard starting tonight. Devin is currently in bed with his pajamas inside out and a spoon under his pillow because his teacher told him it would make sure he had a snow day tomorrow. LOL It worked....school's cancelled!

Jacob's EEG went well today. He pulled out all his tricks...smiling, laughing hysterically, snoring, shaking his head no, yeah....he is a trip and a half. They honestly wanted me to only let him sleep 4-5 hours last night and then wake him up so he'd be tired for the test. Yeah right. I let him sleep like normal, snuggled with him during the EEG and he fell asleep. So did Mom. LOL

Feeling much better physically and emotionally.

God is Good, All the Time

Love, Karla

Friday, December 7, 2012 5:15 PM CST

Day 76: I just watched my two boys go off on there own with the trailer to get a tree. I had to chuckle at Devin directing Michael out of the driveway and then shed a few tears because they so want to continue the tradition Dad started with them so many years ago. What Dave did with his kids still lives on in their hearts forever...

I have really been grieving lately. We had hopes Dave was with his brother in Kansas City, MO, but his brother called us and Dave is not there. I totally broke down when I heard this...there is just no more clues to go on....

Please keep us in your prayers for peace.

God is Good, All the Time!

Love, Karla

Friday, November 23, 2012 5:44 PM CST

Day 62: We had a wonderful Thanksgiving with friends/family...Lora, Janell, and family plus,Tom and Deb and the girls, and the Boardman family. We felt so blessed to be together, even though I missed Dave like crazy, I had my moment yesterday morning and last night, but overall, I did really well. It helps to be around people you love and who have supported you through so much. Missed seeing my family, but got to talk to a few of them on the phone at least. It was really great talking to my brother Kevin. The Boardman boys stayed over last night and now today Devin is spending time at their house. Nice having friends like that. Hope everyone had a wonderful Thanksgiving!

One thing that really bothers me since Dave left is making supper. It was such a family time for us to all sit around the table and eat together. Now I can't stand sitting at the table and I hate to cook. I actually don''t even know what to make anymore because everything I made was for 7 people. Now we are down to 3-4 on a good day. I sure wish this feeling of emptiness every night would somehow subside....

Going to Mayo on Monday for Spina Bifida Clinic and Tuesday for his flu shot and AFO's. Don't know if I feel like going but guess I have no choice! LOL A friend of mine from church is coming with.

God is Good, All the Time!

Love, Karla

Wednesday, November 7, 2012 7:20 PM CST

Day 46: I have nursing tonight, then nothing Thurs, Fri, Sat, and Sun. I miss Dave being here to help out. I talked to the nursing agency today and supposedly they have hired someone...I'll believe it when I see it.

Still trying to figure out someway to get Michael's car fixed and on the road again. We've been sharing a vehicle which has been interesting, but doable so far.

Angela's room is all cleaned out and empty..it echoes in there. Feels a lot like me right now. The people in charge of making the lovely decision not to let me have Angela refuse to answer the phone when my attorney calls them.

I hate to feel this down, but I just feel like so much is piling up on me. Someday, I hope things will brighten up again.

Love, Karla

Monday, October 29, 2012 9:42 AM CDT

It's been 37 days and yet we are no closer to finding Dave then we were 37 days ago. It makes no sense at all to me that someone can simply vanish without their ID, wallet, phone, money, only the clothes on his back. I am so confused.

Jacob is doing really well. We are getting so many new supplies for him lately because of his growth. He got a new wheelchair a few months ago, a new stander, and now a new bathchair/commode. I LOVE how well the bathchair/commode works! Here is a picture of the boy in it :)

Deb, I'd love to see you! For the rest of you that might still be reading this, there is a Schroeder Emergency Fund at Park Bank,PO Box 100, Holmen WI 54636 or I have paypal available. I have lost my income as well since the foster adults I was watching were taken out of the home.

Hope this finds everyone well.

God is Good,All the Time!

Love, Karla

Thursday, October 25, 2012 8:31 PM CDT

Day 33: Today as I was getting ready, I looked at the wall and saw my wall hanging there that says, "Trust in the Lord with all your heart." Proverbs 3:5 This got me thinking that I really am not trusting the Lord with ALL my heart, just the part of it that I want to let Him into. I need to learn to trust Him "and we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28

Today is a very rainy day. It's been storming since last night. Jacob got his bathchair/commode chair today which I am super excited about.

Devin is on a confirmation retreat at Sugar Creek Bible Camp. Hopefully they stay busy even though it is raining. He'll be back tomorrow afternoon, then off to a haunted corn maze with church.

No news on Dave. I am beginning to think we may never know what happened...

God is Good, All the Time!!!

Love, Karla

Monday, October 22, 2012 6:07 PM CDT

Day 30- 1 month ago today, I walked out of the house and came back 1 hour later to find my husband missing. 1 whole month without seeing his face. 1 whole month without him. It doesn't seem possible. None of this seems possible! I am sitting here wondering when this nightmare will end.

Last night, I went out with 3 other ladies for a night out. We were gone for 7 1/2 hours! We had so much fun laughing and talking. It was much needed for me to just get away for a while. Tom and Deb took care of Jakey so I could go. Thank you guys for taking the time to learn Jacob's care so I can get out sometimes.

God is Good, All the Time

love, Karla

Wednesday, October 17, 2012 10:10 PM CDT

Day 25 and still no news on Dave. There has been a few calls into the sheriff's dept, but nothing substantial. I was on the news again today. I just wish he'd come home or we could have some closure.

Yesterday, Jacob and his nurse were coming down our van lift and the nurse fell off, taking Jacob with her. He did a flip in the air and landed on his head. Thank God we were in Rochester, so off to the ER we went. Everything was fine thankfully and all he had was a little road rash on his head and one of his hands. Scary stuff!

God is Good, All the Time! (even when life stinks!)

Love, Karla

Tuesday, October 9, 2012 10:30 PM CDT

Day 18 and still no news on Dave, Jacob's daddy. Check out the newspaper article

http://lacrossetribune.com/news/local/wife-of-missing-man-pleads-for-help-from-community/article_c7d5e510-1294-11e2-9f87-0019bb2963f4.html

God is Good, All the Time (even when life really stinks!)

Love, Karla

Tuesday, October 2, 2012 9:31 PM CDT

Thought I should update here quickly. Dave, Jacob's daddy has been missing for 10 days. He simply walked away from our home and hasn't been seen since. There was a search done with no luck. Investigators are still working on it.

God is Good, All the Time!

Love,
Karla

Friday, August 17, 2012 5:33 PM CDT

I've tried this three times already...we'll try again!

Jacob had a wonderful 10th birthday! Hard to believe he is so old already :) Here is what I wrote to him on his birthday.

10 years ago today, I became a mom for the 3rd time. We were so excited and nervous for what lie ahead. Not only were we having a baby, but a baby with special needs. We didn't know then how much our lives would forever change....how could we imagine just how much joy one child could bring into our lives?

We were told you weren't going to live past 6 weeks old, yet here you are with us today, a bright light to everyone who meets you. You don't just touch our lives, but the lives of everyone who gets the chance to know you. So many times we heard how you weren't going to be like your brothers, that you weren't going to be able to do the things kids do, yet you have done more things in your life than most of us will do in a life time. You have a true love deep inside you that is incredible Jacob.

I am so excited to be celebrating this day. You made it buddy and I couldn't be prouder to be called your mama!

Love Mom

We had such a wonderful party for Jacob and Dave on the 5th and then celebrated again with pizza on Jacob's birthday on the 8th. Over 60 people came to Jacob's birthday party. It was awesome seeing so many people who love him all in one place.

Here is a video of Jacob listening to us sing happy birthday to him :)

I will leave you with some pics from his birthday :)

Here we are blessing Jacob for 10 years of God's Love

God is Good, ALL the time!

Love, Karla

Saturday, July 7, 2012 8:51 PM CDT

As you can tell, Jacob LOVES to play his PaperJams drums! He is one crazy drummer and wrinkles up his nose a little like you see in the picture. It's too cute :)

I was holding Jacob tonight and noticed two of his permanent teeth had grown in behind his baby teeth on the bottom! This has happened recently because we were just at the dentist in May I believe and there was no sign of this happening. The dentist and I have a standing joke that I want him to pull out Jacob's baby teeth since they aren't loosening on their own, to which he tells me the permanent teeth will just grow in behind and then we can pull them out if necessary. Tonight after noticing the teeth, I also noticed one tooth was loose and it actually wiggled loose for me, and I pulled it out! YEAH! So at almost 10 years of age he has lost 5 teeth now. He looks mighty cute with a little window in his mouth. Now the permanent tooth has to just push forward into the spot.

Everything else is going great here. Jacob seems to be growing as his last visit to Mayo showed he was 59 lb and 45 inches. All his doctors were pleased with how he is doing and as usual, Jacob had to charm everyone with his "I own Mayo Clinic" type of attitude :)

Hope everyone is having a wonderful summer! We are so far!
Our guestbook is lonely, so if you still read this, drop me a note sometime!

God is Good, ALL the time!

Love, Karla

Friday, June 15, 2012 3:16 PM CDT

I gave the sermon at church last Sunday to share Jacob's story. Enjoy!

Intro
My name is Karla Schroeder. My husband Dave and I have 3 boys, Michael Brophy, and Devin and Jacob Schroeder. We also have an adult foster daughter Angela who lives with us. Since many of you might not know our story, Pastor Steve felt it would be a perfect time to share our family�s journey of faith, especially since Jacob�s birth.

1. Journey

Diagnosis

�Our journey began in April 2002 when I began having a pain in my gallbladder, so an ultrasound was ordered. We were so excited to see if it was a girl. Well, the first thing we saw was that we were having a boy. I was disappointed at first until I began to notice they were concentrating on his head so much. At 8:45 that night we received a call from the doctor say Jacob had hydrocephalus, which is fluid on the brain. 10 days later we were sent to Mayo Clinic where spina bifida was also diagnosed. Spina bifida is where the spine fails to close early in the pregnancy, so Jacob was born with a hole in his back.

�To say we were devastated was an understatement. No one in our family had a child with disabilities. I found myself trying to come to come to terms with it. WHY ME? I found myself saying I could possibly accept a physical disability, but never a mental one as well. Little did we know what was going to happen�.

Birth

�Jacob was born on 8-8-02 in Rochester. We named him Jacob after the passage we read today from Genesis in which God promises to never leave him. Jacob spent 3 weeks in the NICU and had surgery to close his back and 2 shunt surgeries to drain the extra fluid from his hydrocephalus.

Illness

�We were home for 3 weeks when Jacob developed a UTI which spread to his brain causing meningitis, to his blood which caused sepsis, and to the ventricles of his brain which caused ventriculitis.
�That night Jacob quit breathing numerous times and had to be resuscitated and placed on a ventilator.
�If that was not enough, the CT scan which was done earlier in the week showed major brain damage all over his brain, both sides, as well as calcifications. So far, no one else at Mayo has had both spina bifida and this type of brain damage combined.
�Jacob had 0f survival, and his kidneys were shutting down.
�If he survived, he would be in a vegetative state, non-responsive, and have constant seizures
�The doctors felt it was best to let him die.

BUT GOD IS SO GOOD!
�I never felt pain in my gallbladder again. If I had not had the pain, Jacob would not have been diagnosed until birth.
�I never connected with my pregnancy, but God was preparing me for the times I needed to be separated from him and to gain my strength for when it really mattered.
�The day we found out the extent of his brain damage, Dave and I cashed a check at the cashier�s office where we received a $5.00 bill. On it was written, �To whomever receives this money, may God grant mercy on their lives and God will begin to do great things through you. Love Dominique� which means Lord.
�We received 3 doctors� opinions to let him die, but a 4th doctor came in and said the only one who knows Jacob�s potential is God.
�We begin praying for God�s will. One night at the Ronald McDonald House Dave and I prayed if it was time for Jacob to go home to heaven, it was okay. If we were allowed to raise him, we�d do our best to give the glory back to God.
�After we gave Jacob over to God, Holy Spirit filled us
�Jacob has had 14 surgeries and countless procedures. God truly gives him the strength to get through this because he has a high pain tolerance. Jacob has CP, seizures which have been under control for a long time, cortical visual impairment which means he is legally blind and auditory processing disorder which means he has problems processing what he hears, and extreme developmental delays. Because of the damage to his spine, Jacob needs to be catheterized to empty his bladder, has a bowel care program, and as he gets older, is generally harder to carry and care for.

2. Attitude

�All of these things sound overwhelming and they are! But Jacob is always happy and content. He loves to smile, laugh, and give hugs and kisses.
�Early on, we decided in order to set a good foundation for Michael and Devin, we needed to decide how we were going to deal with this.
�We could not change what happened, but we could change our attitude.
�Not to say that we don�t have days or weeks which are very difficult for us. I�ve had a really hard time with other babies and kids who can do things Jacob can�t. I have been angry that this happened to us. I�ve been hurt, jealous, and bitter. But God is there even in the hardest times. There are times we have felt that God has had to carry us. We know that even through our struggles, God will use our experiences for good. We have realized if we spent all our time crying or feeling sorry for ourselves we would miss out on all the blessings God was giving us.
�This is our one life and we can have fun no matter where we are!

3. Commitment

�We make a conscious decision to make every day count.
�We revel in the littlest things he does. Too often we focus on our kids being at the top of their class or the star athlete. We love our boys and Angela for who they truly are-it�s that simple.
�We made a commitment at Jacob�s baptism to raise him in the church. It�s so awesome to have a church family who embraces him so much. Jacob loves praise and worship music, the Lord�s Prayer, and Holy Communion.
�And the most important thing Jacob has taught me is selfless love- his cares are hard! But it isn�t about me. This is where God often comes in to grant me the grace to do the hard things I don�t always WANT to do, but NEED to do.

4. Others
�In our Gospel reading today, we heard how we become brothers and sisters in Christ. We feel such a close connection to so many in the church because you have embraced us.
�It has helped me heal so much by having my Goddaughter Emilee, holding Terry and Cara�s twins and Brian and Michelle�s baby, and having so many of the kids in Sunday School care for him.
�And then there is Tom and Deb who have embraced Jacob as their grandson. Tom said I could only say three words today, so for Tom I have to say, �Jacob loves you!�
�We would like for you to take the time to say hi to Jacob. He doesn�t see well, so don�t expect direct eye contact. And please don�t ever feel like you can�t ask me questions about him. I love to share him with others!

5. Blessings

�God has given us lots of blessings. We have met people and had experiences we never would have had.
�God provides us with what we need at just the right time. I quit my job teaching, yet we have survived.
�Jacob is doing much better than anyone could have predicted. There is no medical reason he is alive
�How can we do it? God is good ALL the time! We do it with God�s help.
We can�t imagine life without God!

Conclusion
Thanks to all of you for embracing our family. It is not always easy to understand what we are going through, but your love and support has helped us so much. Thank you for loving our boys and especially loving Jacob just the way God intended him to be.

Monday, April 30, 2012 10:34 PM CDT

Letting everyone know Jacob had surgery last Wed. on his right hand (tendon transfer) and a release of his elbow since it has gotten so tight and hard to get him dressed. Everything went really well and our boy is casted up to his armpit!

For your entertainment, I'll add a little video from the hospital too :)

We celebrated Devin's 13th birthday this past Sat. Hard to believe he was a little 3 year old when Jakey was born!

God is good! ALL the time!

Love, Karla

Sunday, March 25, 2012 2:41 PM CDT

Time to take all the snowmen off the website! I think spring is here!

We went on vacation last week. Our foster adult Angela came with as well as her mom, Deb. We left Sunday after church and made our first stop for lunch. Here are my Burger Kings!

We stayed in a suite, which was beautiful and so nice to have room to spread out!

The hotel has a huge waterpark inside, so we spent the rest of the night swimming, then back in the room for pizza.

Monday, we went to the Mall of America. We had a lot of fun shopping and going to Nickelodeon Universe.

The boys headed off by themselves to ride on the big rides, while we took Jacob and ourselves on a few rides. Jacob loved the Merry Go Round.

We went to Bubba Gump's for dinner. YUM!

Tuesday, we headed to MOA and the Sealife Aquarium.

We went to Buffalo Wild Wings for dinner. Here is Jacob showing you his nose! LOL

Wednesday, we did more shopping at MOA and then saw a movie. Jacob loved sitting with bubba Michael during the movie and laughing at all the sound effects!

We ate at Long John Silver's for dinner. Check out our pirate!

We all had enough of shopping. Here is Devin outside of the Mall!

Thursday, was spent hanging out at the hotel.

My nephew Karl came over to visit and then we all went out to eat at Chevy's Mexican restaurant.

Can you say NACHOS?!?!?!!?! Deb never knew they'd be so big!

That night, we spent more time in the waterpark as we had all week. It was hard taking Jacob swimming. Try carrying a 56 lb boy into the pool. It made me want to cry seeing other kids enjoying the pool so naturally. But then I also saw my 18 year old carrying his brother and floating in a tube with him around the lazy river and I also wanted to cry. Both Devin and Michael helped me with him in the whirlpool forsaking their desire to go on the waterslide until Dave could come over and help me. Such love for their brother.

It was a very humbling week for me as I realized how hard it is to be away from home and still care for Jacob's needs. However, everyone was very understanding his needs came first and we were able to work around it and still have an awesome time despite some of my sadness surrounding the knowledge life with Jacob is so different and not always easy.

But we all know.....

God is Good, ALL the Time!

Love, Karla

Monday, February 6, 2012 7:37 PM CST

Went to Spina Bifida/CP Clinic today at Mayo. Everything looks great except his legs are starting to sweep to one side when he lays on his back. His left hip is also dislocated, but it's okay that it is since he isn't in pain and it isn't interfering with cleaning him, etc. His scoliosis has remained unchanged. We even got to visit with one of our favorite doctor friends for a long time. It is so nice to have his nurse with for appts too. Just love her! Did some shopping afterwards, so it was a great day!

Jacob has been dealing with blisters in his mouth for the last week. He finally ate a little today when he was at Mayo. In fact, he WANTED to eat :) He's lost 2 lbs because of the lack of eating over the last week, but I think we are on the mend given his goofiness today :)

God is Good ALL the TIme!

Love, Karla

Thursday, January 12, 2012 10:10 PM CST

Exciting news! Jacob sat up by himself for 6 WHOLE MINUTES! YEAH! I never thought I'd be writing this :)
I didn't get to see it since it happened at school, but hearing about it is reward enough!

Mayo day next week to get Jacob's flu shot. Since he is allergic to eggs, we have to do it through allergy testing. If he doesn't react to a small amount injected under the skin, he can get the flu shot. Plus, we have to see the doctor before and after. A huge deal for something that should be easy, but oh well.

Christmas was awesome. Winter has not shown up until today when it decided to snow. Earlier this week, I was in a sweatshirt outside. Not something we ever see in Wisconsin, so glad to have such nice weather, until now that is!

Not much else going on except the normal busyness of our family.

God is Good, ALL the time!

Love, Karla

Monday, December 12, 2011 1:20 PM CST

Mayo appts went wonderfully! The ultrasound and xray of Jacob's bladder showed no stones, his kidneys are the normal size, and there is no stenosis or narrowing of his kidneys. The urologist was so happy he has been dry and the cathing schedule is working so well.

Jacob was casted for new AFO's since the old ones were too small. That means new shoes! Something to get excited about since he can wear one pair of shoes for years since his feet grow so slow.

Jacob's wheelchair was adjusted and we will soon start going to Decorah, where Michael is, for wheelchair adjustments. We will also work on ordering a new wheelchair and stander.

Other than that, we have been getting ready for Christmas. Jacob had a Christmas play for school and church. Here is shepherd Jacob.

Hope everyone is enjoying this holiday season.

God is good! All the time!

Love, Karla

Monday, December 5, 2011 12:21 AM CST

Christmas is on it's way! We have snow, beautiful trees full of snow outside, a Christmas tree ready to decorate, and kids anxious to open presents!

Jacob's music play is on Thurs. I can't wait to see my boy up there smiling as the kids sing. Such special times knowing my boy is included just like everyone else.

Big day of appts tomorrow with urology. It will be nice to have a nurse with again. I will update on how appts go. We will also have the wheelchair adjusted and AFOs casted.

Hope you enjoy the picture at the top of the page!

God is Good! ALL the time!

Love, Karla

Monday, November 21, 2011 1:21 PM CST

Last Monday, Jacob went to Mayo. He has grown 2 whole inches! He needs to have his wheelchair adjusted! His feet even grew so now he needs new AFO's and a new stander too! WOW Jacob was so cute sitting on the bench with mama when Dr Driscoll was talking to us and Jacob had a lot to tell her too.

Neurology said even though his brain doesn't work all the way, it works the best it can so WOO HOO! She was so impressed with Jacob. She needed him to get some blood drawn, which hurt a little, but he didn't even cry. He got a froggie toy when I was done so it was worth it.

The best part was our nurse Sarah came with to help me. I was very happy and not so crazy getting everything done while talking to all the doctors! LOL I love our nurse :)

Now we need to go back next week to finish up some more appts with urology, wheelchair, and AFOS. Hopefully everything will work out great!

God is GOOD, ALL the time!

Love, Karla

Sunday, October 9, 2011 10:25 PM CDT

As I look at a picture of myself holding my newborn son, newly diagnosed with severe disabilities, I wish I could talk to that woman and let her know so many things�.
I wish I could tell her that she�d be okay. And some days she wouldn�t. I�d tell her to let the tears flow when she needs to and be strong when she needs to. She�ll know when both are appropriate.

I�d tell her how much you can love your child and hate what has happened. Seems kind of weird to love and hate at the same time. I�d say it�s perfectly okay to even hate every part of the situation and scream and yell about it when necessary. Supplies and equipment you have to use are often a good target for these temper tantrums.

I�d tell her that people don�t always know what to say so they say such things as, �Only strong people can handle such a child as yours,� �God must have chosen you, �You are a special person,� or my favorite�..�I could never do it,� to which I�d respond one of two things, based on my mental status,�I don�t have much choice but to do it.� Or better yet, �Maybe you�re right. You couldn�t do it!�

Seeing other people�s babies and children will hurt you. How can everyone else have healthy kids and not me? I didn�t do anything to deserve this. Your friends will often be afraid to share about their kids in case it hurts you. You will find yourself lonely sometimes.

But people aren�t all that bad�you will have people you don�t even know bless you with unexpected gifts. You will have others care for you so much to provide for you when you can barely stand on your own two feet. You will have people bless you simply and beautifully. Friendships will be formed and you will be held up when you need it the most.

You will get to know every part of the hospital and clinic and some of the things that once scared you will not even phase you. Your children will grow up knowing all the restaurants in the area, when Smoothie hour is in the cafeteria, and find great fun in the hospital. You will spend countless hours waiting and somehow you�ll just know how to pass the time.

Have I mentioned yet how much Velcro will become the best invention ever since it is on everything your child wears, uses, or needs?

You will realize how much you rely on your husband to be your friend and your partner. You�ll love seeing him interact with your child and even better enjoying it. You�ll appreciate all the help he gives you. Other times you can�t believe how much you have to carry all on your own and maybe even resent it a little when he cannot feel as deeply as you. Yet you know he is truly the one person who hurts the most like you for he loves the same child as you�.

God will be your best friend. Without him, you wouldn�t even have a clue how to get through this. You will find yourself angry at Him at times, and it is okay. You will question, scream, cry, feel betrayed, alone, and abandoned. But in the end, you always know you can lean on Him �strangely you couldn�t imagine doing this alone without Him. You NEED Him.

But mostly I�d tell you how much your life is going to change. Not all change is good. Some of it will hurt beyond anything you can imagine. But when that curly haired boy (yes- his hair will eventually grow!) looks at you with love in his eyes, wraps his left arm around your neck because his right one doesn�t work so well, kisses you with all his might you will know that you�d do it all over again and wouldn�t change one thing. Because by changing things you wouldn�t be you and let me tell you, you are one AMAZING woman.

GOD IS GOOD ALL THE TIME!

love, Karla

Monday, September 26, 2011 9:10 PM CDT

Busy month of school! Jacob is loving being back at school where all his friends and teachers are. There have been some changes in the kids in his special ed classroom which is taking mama a little time to get used to, but it doesn't change the level of care he receives, so that is good.

Speaking of care....we have full time nursing! It has been W-O-N-D-E-R-F-U-L!!!!! The nurse meets Jacob at school at noon and then comes back to the house for the evening routine. We love it.

Michael is adjusting to college wonderfully! Here are some pics of a recent visit to see him! We brought our friends Tom and Deb and Angela with too!

God is Good ALL the Time!

Love, Karla

Tuesday, August 30, 2011 4:56 PM CDT

I've been urged to update here so I thought I'd better do so! I mostly write on Facebook, so sorry to those who rely on this for their Jakey fix.

Jaoob turned 9 on August 8th. Check out his cake made by Julie Curtis from Icing Smiles. WOW!

Jacob had his cast taken off on Friday and into a splint for 2 weeks then 4 weeks at night only. His hand looks simply marvelous :)

Jacob went to Vacation Bible School. Enjoy the pictures of Jacob being totally loved and accepted!

We are getting so excited for nursing to start TOMORROW! After 3 years of trying to get a fulltime nurse to help with cares, we finally got it. A huge thank you to our care team at Mayo for listening and writing an awesome letter of authorization for care. The nurse will go to school and then come home to go his nighttime cares.

School starts on Thursday. Jacob is so excited. He lives for school and all the attention he gets there. Mom is fun, but school is so much better. I am so glad to know he loves it and is so loved there too.

Michael has headed off to college. I thought it was going to be hard to say goodbye, but it was worse than I thought. Michael had a hard time saying goodbye to Jacob since they are so close. Michael worries he doesn't understand to which I told him Jacob know how much he loves him and how much he loves Michael right back...THAT is all that matters.

So far, Michael is enjoying himself and settling in nicely. It is empty around here. We even had to take the leaf out of the table and make our table smaller. WOW.

Hope you are all doing well.

God is GOOD,
All the time!

Love, Karla

Saturday, July 23, 2011 7:10 PM CDT

We are home! Everything went really well. After 12 hours of sleep, Jacob finally woke up and was back to his normal self. He ate well, went for a walk and then took a long nap. We got our discharge papers and we were out. Here he is, just where he belongs...HOME.

God is GOOD!
ALL the time!

Love, Karla

Friday, July 22, 2011 5:15 PM CDT

Jacob had his surgeries this morning. We got here at 6:30, and surgery started at 8:37. His hand was first, with a tendon transfer from the inside on his hand to the outside of his hand. They also fixed his fingers from curling under. And the best part???? He has a GREEN cast with 3 frog stickers on them!!! It is so cute. It goes from below the armpit to the tips of his fingers. That surgery was done at 10:20.

Dr Shaughnessy was next and released the hamstrings on both legs, along with the adductors in the groin area. He was able to do this with very small incisions. Both legs are wrapped now, and will probably be splinted, but not casted. This is a good thing...imagine that many casts at once!

Jacob was super cold after surgery...95*. He is warmed up now but very sleepy and hasn't really woken up yet even though there is an eyeball every now and then.

Not sure how this will work, but if he is awake and doing fine tomorrow, we may go home.

God is GOOD!
ALL the TIME!

Love Karla

Wednesday, July 6, 2011 10:12 PM CDT

Life is going along so quickly. We have already registered Michael for college and next month will be saying goodbye to him. I love the Luther College campus with all it's beauty and the sense of the Holy Spirit working there. It's amazing.

We have officially gone crazy and decided to take in another foster adult! It's been a fun, crazy time with so many laughs as he cracks one joke after another. He is so quick witted and laid back, which has been a nice addition to the family.

Jacob will be having surgery on his right leg and right hand on the 21st of this month. I will update on how things are going, so if I don't write much between now and then, check back. We are hoping by releasing the tendons, it will give some relief to his leg which is getting tight, and to his hand which is curving inward.

Jacob continues to amaze us with his happy nature. He is never sad, except if you are, and has always got a smile on his face or a giggle to share. His newest obsession is watching Spongebob Squarepants which is hysterically funny to him. The other thing he loves is when I play Farkle on Facebook. Sound effects are the best in his world :)

Not much else to report. Keep watch around the 20th for further details on the surgery.

God is GOOD! ALL the time!

Love, Karla

Saturday, June 4, 2011 10:03 PM CDT

School is over. I am officially the mother of a 4th grader, CAN YOU BELIEVE IT, a 7th grader, and a high school graduate. I have an official adult in the house. WOW Somehow that all seems wrong, but time doesn't stop just because a mama wants it to slow down a little!!!

Michael's graduation was wonderful. It was long, but the speeches were funny, the kids and parents were respectful, and well, my boy graduated so it was an awesome day. We had the party the next day, which was also so nice, minus the FOOD POISONING we got from the caterer. I wanted it catered so everything would go easier, well, everyONE went! Diarrhea and headaches.....talk about a fun way to spend the next 24 hours. If you are on facebook, I've put up some pics, of the graduation that is. LOL

Jacob is amazing. He is doing so well right now which makes it harder to have surgery on his leg and hand in July, but it needs to be done since his leg is so tight and his hand is contracting more and more. I will keep you updated about that as it happens.

I have to share an incredibly cute story with you. One of the teachers at the school had a little boy ask her, "What is wrong with that boy in the wheelchair?" Feeling a little unsure of what was coming next and just how it was going to be answered, the teacher said, "What do you mean?" to which the boy answered, "WHY is his HAIR so curly?!?!?!?!? A lesson for ALL of us that sometimes we as adults see things way differently than children! :)

God is GOOD!
ALL the time!

Love,
Karla

Friday, April 8, 2011 10:15 PM CDT

I sometimes wonder if the woman I was before April 30, 2002 knew how lucky she was? How normal her life was? If she appreciated the abilities of her family and the ease of so many things in her life? I really wonder if life was appreciated for what it was and if there was any idea of just how challenging life would be forever from 8:45 PM on April 30? How could I really have an idea. I don't think anyone can truly imagine your life changing to the extreme and until you've actually experienced it, I don't know if you can even begin to understand it.

I know there are so many people out there who have it so much worse off than I do. Their children are in a much different place than mine is. Some don't know how much longer their child has to live, some have already said goodbye....But I think all will agree to some extent life as they once knew it changed forever.

One thing I hate so much is the feeling of two lives, well actually three. One with Jacob, one with Michael and Devin, and one with all of us together. It's when I have to choose which is the most important or which one is going to be compromised for another is when I think of that woman I used to be.

I was so much skinnier. Younger looking. No bags under my eyes. I was a teacher with dreams and goals for the children I taught and the children I was raising. I was so excited for a life I had ahead with more children. I didn't worry about money. About how I was going to get things for my kids.

But I wasn't wise to so many things. How I could love someone so much even when the rest of the world deemed him as "disabled." How I would fight to the end of the earth for someone who deserves so much to be treated like his brothers, to have everything that comes so easy to them. I didn't know I'd have to defend myself and my choices repeatedly and explain my son to others. I didn't know I'd have to fight for his right to medical supplies and spend countless hours on the phone to rude people, call my state senator and representative, drive 160 miles for 3 catheters to last until a shipment HOPEFULLY comes at the beginning of the week.

No, I was blind. I was so blind. The things I used to think of as "hard" or "frustrating" seem ridiculous now. I so wish sometimes to go back there and never know what I know, but then that would mean I wouldn't have my Jacob and to not have Jacob would not to have me. Life without Jacob would be so meaningless becauase he has brought more joy and love to me than I could have ever imagined. It is what I need to be reminded of when I am tired and worn from fighting for his rights.

We are home from Rochester after some seriously senseless isssues with insurance regarding his catheters. I now have 5 catheters to last the next 5 nights. Hopefully the rest will be here in time. It only took what felt like hundred of calls and getting some serious words in with some very unsupportive people that Jacob will get his order. Why it needed to get to this level is absolutely unimaginable. Please pray that the powers that be in the state legislature understand just how impossible so many of their decisions have become and how they affect the most innocent people out there......people who deserve the same dignity as anyone else.

Time for bed.... I am exhausted.

God is GOOD!
ALL the time!

Love, Karla

Sunday, April 3, 2011 1:49 PM CDT

My posting here has gotten fewer and farther between. I used to come here often as a need to share what has been going on and for some reason, whether it is Jacob getting older or me just getting used to this life, I haven't needed to come here. I don't always know if anyone is even really coming here to find out about him. Time goes on and things change. I know that.

As far as my foot, it is healing quite well. Still limping a little, need a chair for long distances, but only use that in stores for the most part or at Mayo when we went the other day. I get tired easily, but I am walking. No more pain meds which is good! I am feeling more and more like myself after a very rough time during recovery and I am liking it. I like feeling like myself. Life is good.

Jacob has gained 8 lbs. yeah.....a little chub is starting on the belly causing me to sell size 7's and going into 8's. I am so not ready for that since it happened so fast from the added pediasure. Something to watch so he doesn't get fat, but yet he is small for his age, so he does need to grow. Here he is hanging out on the couch!

That also means I will need to start using the lift which I HATE. Here's Michael being a smart ass using it. I tell you, there is no dull moments here! LOL

Wed, Jacob had his wheelchair looked at and things were fine. We came back in time for church. Thursday night was his Pirates music program, which was absolutely hilarious according to Jacob, especially the ARGH MATEY! SCURVY DOG! AHOY MATE! He is so funny.

Hope everything is going great with all of you. We are in the final preparations for Michael's graduation. Everything is ready except for buying the food. I am a little obsessive you can say. LOL

God is Good!
ALL the TIME!

Love, Karla

Tuesday, February 22, 2011 11:23 PM CST

Surprise! It's me!

What a long time between posts. Seems like I come here and just don't know what to say, but have so much to say at the same time.

I had surgery on my foot January 5th, 7 weeks ago. The first few days were spent sleeping and trying to figure out how to actually use my left leg since I am right sided. My brain literally couldn't figure out how to stand up on it. Very weird. My friend Deb, Angela's mom, stayed with me for 3 weeks. That was the sweetest thing in so many ways to have someone help out so much and add a second set of hands around here.

Figuring out Dave's work schedule around my uselessness was hard enough, not to mention trying to let Michael and Devin still have a life and school. Then came Jacob. Quite honestly, that is why I haven't written. Nothing nice would have come out of my mouth...well I shouldn't say nothing, just not a lot of nice things.

We were able to get RN level nursing, something we have never been able to get before. Both nurses were fun with Jacob. Trying to train someone how to accurately care for my son is another thing. Most things I can handle being done in a different manner. As long as the end result is good, I don't really care how a person gets there. Being a teacher, I always saw a variety of skills and practices, so when Jacob is cared for, I have a tolerance for differences. That is until his safety is at stake, I have to constantly remind someone over and over how to do something or remember to do something, or plain ignorance. I have worked way too hard to keep this child healthy to let someone mess that up. No way.

It has also been such an emotionally crushing time for me. I am Jacob's mommy. I do the things he needs. I know him. I provide the care and the love and support it has taken for Jacob in the last 8 1/2 years. I have always been able to share his love with others, but no one else has cared for his physical needs except the school nurse and the hospital. We have CNA's but they don't provide all the cares he needs. It is Dave and I and that is it. How hard to know that I simply can't do the things he needs. Very hard.

I talked to the supervisor regarding the fact that I really did appreciate their work, but I had a few issues I wanted to discuss. Obviously there is no place to voice opinions in this company because I was made to feel like a liar and cares were over 2 days later. 6 weeks of care and no more, even though I am still not able to care for him on my own.

I have progressed from a knee walker and electric wheelchair (thanks to my friend Deb) to having pins and needles in my foot, to a little pressure on the toes, to toe walking with a walker and now a walker and chair for distance. I have been able to not need much help inside the house and walk a lot more now. I am sore and weak. Still some pain, but progress has definitely been made.

I am working on feeling better physically, mentally, and emotionally. Tough times....in fact I have not felt like this ever. Please pray things can and will get better. I so love that boy of mine. Reality just hits and hurts like a knife piercing my heart. Such is the roller coaster I will forever be on....the price I pay for loving him. So worth it.

Remember, God is good, ALL the time!

Love, Karla

Wednesday, December 29, 2010 4:39 PM CST

Christmas came and went. What a great time we had! Angela's mom and dad were over, which is always wonderful being with friends. I actually was able to find a few things for Jakey this year, which is nearly a miracle! Shopping for Jacob is usually a time of great sadness because he is unable to do so much and what is out there, he already has. Dave and I found a Paper Jams drumset for him which he thinks is HILARIOUS! I want to get the guitar now too :) Jacob loves books on CD, so luck would have it Scholastic had If You Give a Mouse a Cookie series all on one disc so I don't have to change it over and over! Plus, he got tons of movies and some cute toys and clothes. Jacob thinks Sesame Street is so funny lately, which is a step in the right direction developmentally :) He loves the counting and ABCs, funny noises, and Grover and Cookie Monster. I love that he is broadening his interest more and more, since he really didn't care about much before.

I celebrated my birthday yesterday. Fun to be with family and friends out to eat. Friday we are having a New Year's party here. The best part is it was my husband's idea! Talk about SHOCKING! LOL

I am having surgery on my foot on the 5th. Not looking forward to recovery time, but so looking forward to not feeling like crap all the time. My whole life is being compromised by the pain in my foot, and I just don't have time for it! Still working on nursing. I have a meeting tomorrow with an agency, so hopefully help will be on it's way.

Hope everyone had a wonderful Christmas and a happy New Year!

God is Good ALL the Time!

Love, Karla

Thursday, December 16, 2010 11:14 AM CST

Another long day in Rochester yesterday. Devin came with for company. Jacob had his flu shot with the help of allergy watching closely so he didn't have a reaction to the egg in the shot. No problems again this year! YEAH! I wanted to have his allergy levels to egg and nut checked, but the doctor wants to wait until Aug or Sept so it is 2 years since the last check. She was really on my list yesterday...but that is another story...

After seeing the hand surgeon, we decided to have surgery on his hand at the same time as his leg. I am waiting for a call to see when the surgery can be scheduled.

Jacob has low tone in his trunk, so we had a new orthotic vest made yesterday as well as getting a new lime green hand splint. Gotta keep with the green theme you know :) We were going to have a nighttime hand splint made but with upcoming surgery, we decided to wait.

We have had a horribly cold week, with tons of SNOW. Of course, on the coldest day of the year, my van's radiator decided to completely leak, so we had to take the other van with the sucky lift to Rochester yesterday. Yeah...tempermental wheelchair lift+a busy day of appts=one freaked out mom. Crazy day. Thankfully it is over.

Jacob did the absolute coolest thing yesterday. He showed me where his eyes, nose, mouth, ear, and hair are :) I have been working with him on identifying body parts and so far, he has been the most fascinated with showing off his nose. I was absolutely shocked and so proud of him! Sweet, sweet moment.

Another cute moment was when we were waiting after his flu shot. Jacob had his communication device and asked me, "What are we doing?" I told him we were watching his owie for a little while. He said, "I'm tired!" LOL!!! Love him!

Christmas is almost here and we are feeling the excitement. I love Christmas, especially seeing it through the kids eyes. :)

Hope everyone is doing well. Remember, God is good, ALL the time!

Love, Karla

Friday, December 10, 2010 6:51 PM CST

Merry Christmas everyone! Only 2 weeks left...I honestly am still back in September mentally! I am usually done with my shopping by now. I'm getting there, slow but sure!

Jacob is currently snoring at me because he doesn't want to eat. Or more like, "Let's see if I can get Mom mad." Yeah, he likes that game. All about the attention. LOL Well, Mom won that round...another bite in! Only 10 more to go!

Jacob had a full day of appts at Mayo the end of Nov. He will need to have surgery on his right leg. His knee doesn't extend much at all anymore and is causing his leg to bow. We go back on the 15th to see the hand surgeon and decide if he will have surgery on his hand at the same time.

After looking at his growth chart, we decided to keep him on Pediasure at night to chunk him up a bit and hopefully gain some length. I told her I draw the line at him being 6'5" like Daddy though. Can you see those transfers? YIKES!

Nursing care is still an issue. In fact, the one hope I had looks like it is falling through since there is a freeze on new referrals. Yeah... I am more than likely having surgery on my foot in the near future, so it should be interesting taking care of him when we both are in wheelchairs.

Almost half way through the school year already. Michael's had some senior "stuff" at school to turn in and order. We are looking forward to his graduation on May 28th. :)

Not much else new...same old busy business to take care of. Hoping things settle down into a routine soon. Like I said, I am still back in Sept. LOL

God is GOOD, All the TIME!

Love, Karla

Saturday, November 13, 2010 9:16 PM CST

Jacob has enjoyed being back at school this week. He seems to be getting over his pneumonia, but still sounds very crackly and like he swallowed a bunch of pop rocks.

Today we were going bowling with the church group. Jacob heard the sounds of the ball hitting the lane and the pins knocking down and started having a seizure. He was unable to stop seizing on his own and we needed to use diazepam to make it stop. This put him to sleep and basically snowed for the whole day. I saw a smile from him when he talked to Grandma on the phone, that's it.

I was literally thinking yesterday that he was going to start seizing again...it's been almost 3 years. Feeling a little worried tonight that we might be going in the wrong direction here....

God is Good, All the TIme!

love, Karla

Tuesday, November 9, 2010 8:08 PM CST

We are home :) Jacob seemed to turn the corner yesterday and continued to do well without oxygen overnight, so we were able to come home today. Antibiotics will continue for a few more days. We are also starting overnight feeds again since Jacob has not gained weight for a long time, in fact he lost about 2 lbs.

We are hoping to get back into the swing of life again.

God is Good, ALL the time!

Love Karla

Monday, November 8, 2010 10:23 AM CST

Jacob seems to be doing a little better after a couple days of antibiotics. Yesterday, did not look so good...still very sick and lethargic. I had a long talk with God last night and it seems like Jacob is perking up a little today. Smiling more, and even a couple giggles watching Sesame Street.

I tell ya, it doesn't get easier. Some ways yes, but the reality of the situation is he will continue to struggle with issues and need surgeries his entire life. WOW...that is a hard pill to swallow at times. I mourn for the things we have lost...the things that will never be easy. My kids shouldn't know what it is like to pack in 10 minutes to go to the ER. Yet they do and strangely it's familiar and somewhat comforting to know there is a place that can help Jacob so quickly. I look at the positives to get me through, yet there will always be the heaviness on my heart. How does one put this into words? I don't know if you you can....

God is Good, All the time

Love, Karla

Sunday, November 7, 2010 1:23 AM CDT

Jacob is in St. Mary's in Rochester with pneumonia. Started antibiotics and oxygen. let you know more later.

Wednesday, October 13, 2010 12:12 PM CDT

Seems like there is really never much to say on here lately. Maybe I am just lazy, used to getting on Facebook instead, or don't really know how many people actually read this anymore....but I thought I best let you all know how Jacob is doing.

We saw urology a couple weeks ago regarding all the leaking. We came up with a plan to hopefully avoid surgery in the near future. We are going to cath him at 7 when he gets up, at 9 and 11 since he has SO much more urine then, and the normal 3 and bedtime routine. We also decided to place a foley catheter at night so his bladder stays empty. We are increasing his ditropan to help with the bladder spasms. We are also adding mineral oil to make sure his bowel is emptied better. So far, so good! Jakey's even back in underwear!

We took a trip to the pumpkin patch a couple weekends ago with some of our friends. Lots of fun!

Devin and Lindsey

Michael and Jakey on the hayride

All the kids

Kaitlin and I on the hayride.

School's going awesome. Kids have all settled into a routine. We were able to see a couple of Michael's senior pictures. I can't wait to see the rest!

Michael and I took a trip to Luther College on Monday. What an absolutely BEAUTIFUL place! I think Michael would really love it there. We are also going to check into another college next week, so with any luck, he will have applications in and the process will begin!

Hope all is well.

God is Good All the Time!

Love Karla

Thursday, September 16, 2010 6:49 PM CDT

A perfect example of God's love and grace given to us through an amazing group of 3rd graders...

KAYDEN AND JACOB

Kayden and Jacob
Add a lot to our class!
We�ll tell you why.

They add a lot of smiles to the class. Lydia
I will be their friend. Vang
Jacob and Kayden are nice and are special boys. Olivia
I know that you guys are happy. I can always help you. Mai Kou
I will help Kayden and Jacob. Pa Zong

Kayden and Jacob
Add a lot to our class!
We�ll tell you why.

Jacob and Kayden are nice and they are special. Cha Cheng
Kayden and Jacob are really nice kids. I will be nice to them. Madisen
They are really nice. They would never hate anybody or say anything mean. Axell
They are special kids. Zach
They are very funny to one class. Brennan

Kayden and Jacob
Add a lot to our class!
We�ll tell you why.

I think they are very special. Casey
I think they are helpful. Jordan
They are very nice and harmless and so helpful. Asha
I will try to help them. Mason
They make smiles on our faces. Luke

Kayden and Jacob
Add a lot to our class!
We�ll tell you why.

They are very nice and funny too. Lindsey
We are glad to have them in our class. Bryce
They are really nice because Jacob gives hugs and Kayden likes music like me. Joshua
I know that they can�t run or walk but I don�t care. I like the way they are. People shouldn�t care what they look like on the outside, what matters is what is inside. Kortnee

Kayden and Jacob
Add a lot to our class!
We�ll tell you why.

By Mrs. Johnson�s Frog Creek Super Kids
Friday, September 10th, 2010

Saturday, September 11, 2010 11:23 PM CDT

Hello everyone!
School has started and is going really well. It is so nice for all of us to be in a routine again. Summer is awesome, but I really missed the routine school brings.

Here are some pictures of the boys on their first day of school!

Jacob is in 3rd grade with an awesome new teacher. The room just happens to be decorated in FROGS! The class is called the Frog Creek Super Kids. On Wednesday, I talked to the kids about Jacob. The nice thing is most of the kids have known Jacob since Kindergarten, so when I talk to them, I notice the knowledge they have of him. It is so cool to see the kids� compassion towards him. I can see how they enjoy Jacob for who he is and what he brings to the classroom. Jacob is smothered in lovin� every day! :)
The reality of our life with Jacob is fresh and raw at certain times�birthdays, holidays, and the start of school or more specifically being around other kids his age. I remind myself how far he has come, what he can do, what it could be like if he wasn�t doing as well as he is. It helps to keep a positive attitude, yet that small part of me still needs to release a big sigh�

Jacob�s 3rd grade friends came to his special ed room to see where he spends the other part of his day. OMG Jacob was hilarious showing off, like �Hey! This is MY room!� He has gotten SO talkative at school, which I love since he talks all the time at home. He has really gotten quite a few words down, very accurately, quickly, and appropriately. He shakes his head no and yes, says YEAH, (you have to draw it out to get the full effect!) huh huh, I LA (I love), I DO, and AH DUH (all done.) It has been so fun to figure out questions to ask or comments to make that he can answer. Love it.

When we were showing the kids his room, Ms. Trista had a flannel board song out, �Five Little Monkeys Swinging in the Tree.� We started singing the song to see if the kids remembered it and stopped singing it. All of a sudden Jacob started slapping his leg. We didn�t know what he was doing until we realized he wanted to finish the song and �snap that monkey right out of that tree!� Jacob never ceases to amaze us. It is so neat to KNOW he gets it.

God is good, all the time!

Love, Karla

Sunday, August 29, 2010 1:12 PM CDT

Hello everyone.

Jacob's had an exciting month with his birthday, 1st communion, and summer school, then last week we were at Mayo for Botox.

Here are some birthday pictures of Jacob!

Do I REALLY need to take more pictures?!?!?!?

Here's the moment I've been waiting for!!!!

HOW CUTE IS THAT????

School starts on Wednesday. Some of us moms are going out for lunch to celebrate! LOL

God is Good, ALL the Time!

Love, Karla

Sunday, August 8, 2010 7:59 PM CDT

8 years ago I met the love of my life :) Jacob, you have given me such a true meaning of what being a mom is all about. Without you, I would not be the person I am today. You make me smile and laugh, just by being you. The joy I feel in everything you do can't be explained and I am so glad God chose you to be mine.

It's hard to believe that so much time has gone by...yet Jacob's life has seemed a very strange experience in time because he hasn't developed in the way the other boys did. This fact makes his birthdays even more bittersweet, always a mix of emotions that surprise me everytime! You'd think I'd get used to it by now....

Today was awesome. Jacob received his 1st Communion this morning. Here he is bringing the bread to Pastor Steve.

He did so awesome taking communion. When Pastor Steve gave him the bread, he held it in his mouth and gave him a little smile.

Afterwards, we had lunch, birthday cake, and presents. It was an awesome day with friends and family!

Such a sweet boy!

God is good, all the time!

Love, Karla

Tuesday, August 3, 2010 3:16 PM CDT

2:30 this morning, Jacob started crying. He never cries so I knew something was up. I cathed him, with a TON of urine out, plus his diaper was soaked. I am thinking the small catheter is just not getting it out like it needs to. Not only that, but he was burning up, and very tender abdomen. The old, get to the hospital quick, kicked in and I was dressed and calling the doctor. Wouldn't you know with Dr Kramer out this week, my favorite, favorite, FAVORITE resident was on....Eric from last summer! He promptly helped me figure out what to do and I felt comfortable staying home, giving him Tylenol, and running fluids. The best thing is he knew that when I said, "Jacob was crying," that it meant Jacob is in a lot of pain. He also knew that I knew what I was talking about. Oh how I love the familiar! Someone who GETS it and who could let me know it wasn't the worst scenerio I was thinking in my mind.

So anyway, Jacob is home today, not sure what is really going on, but nothing to worry about...yet. He will be seen in clinic if he is not feeling better. I can live with that. Just as long as he is better by Sunday! Can't have a sick birthday boy!!!

God is Good, All the Time!

Love, Karla

Sunday, August 1, 2010 12:57 AM CDT

Jacob's birthday is coming up in a week! He is very excited when you ask him about it. We have talked about his 1st Communion, so please pray with me that he will not gag up there! LOL!!!

Summer school is going into it's second week. I hear there is a huge entourage of girls that seem to follow Jacob out onto the playground. He is definitely not short on friends. I think he enjoys the added perk of them being girls!

Monday afternoon he went to Mayo for an appt and another deflux injection Tueday morning. Needless to say, it was only worth the fun we had in Rochester, because the penis started leaking on Thursday morning and the stoma on Friday morning. Yeah..... The thing is, it's more of a convenience issue. It's not like it's going to be life threatening to be in a diaper into adulthood, but it's also not fun having a wet diaper in the mornings and occasionally other times and a rash from leaking so much. It's also the point that he WAS dry! That was the point of the bladder augmentation 2 summers ago. A foley catheter he had because of the false passageway caused the leaking. When he is scoped, everything looks fine. No indication of WHY he is leaking. Just add mystery #563 to Jacob's ever growing story. :)

Life is crazy. Something every day going on. Kids busy with friends, Devin started band practice, I've had lots of appts, and on and on. Today is a take it easy day. That is what I am planning on doing.

God is Good....All the Time!

Love, Karla

Sunday, July 18, 2010 10:24 PM CDT

A time to live and a time to die....

This chapter in Ecclesiates in truly one of my favorites. It says so much about life. This was something I read during the hardest moments of Jacob's life and found so much comfort from it.

This week I heard it again at a funeral for a wonderful woman from my church. Not only has Shirley gone on to live with the Lord, but another friend of mine with 3 young children joined her this morning. One of Michael's classmates was also killed in an accident today. So much death around us.

But then there are signs of life. There have been lots of babies born to people I know. Today, I got to spend some snuggle time with my 2 1/2 week old Goddaughter. To watch her sleep and make all the funny faces, trying to focus so hard on my face, moving her feet and kicking her legs...it's precious. The best part for me is Emilee has allowed me to heal...she is the first baby I have been able to hold and not feel so sad for the things I have lost with Jacob, the things I will never see Jacob do. It took 8 years to get there, but I am healing. I still find myself feeling a tinge of jealousy when others can have such an easy time getting pregnant, perfect babies, no problems. It's fine for others to have 2 babies, but that 3rd one is the hard one for me...Might not make a lot of logical sense, but it makes a lot of sense in the mind of a mama of a child with special needs.

As I approach Jacob's 8th birthday, I find myself feeling so much healthier in mind than I have...It's a constant cycle of grief however. Yet I wouldn't trade my life with Jacob for anything in this world!

Sunday, August 8th will be a special milestone. An anniversary of Jacob's baptism, a golden birthday, and a 1st Communion. Pastor Steve talked to Jacob today about Communion...how the bread and wine is God's way of saying I love you...just like we all love Jacob and Jacob loves us. I can't wait to share this special day.

Hope everyone is having a great weekend. We had an awesome day with friends, celebrating a birthday. Boys are awesome. They are enjoying having friends over and going over to friends. There is nothing like a great group of friends to share your life with!

God is Good, All the Time!

Love, Karla

Tuesday, July 13, 2010 7:46 AM CDT

Hello everyone!

Life has been busy. Michael came back a changed person from his mission trip from the Appalachians. It is so awesome to see the changes which are made when someone is knee-deep in service to God. WOW.

The weeks have been filled with trips to the YMCA. I am taking water exercise while the boys are either swimming, working out, or in the activity room. The water exercise has been really nice. Not too stressful on these old bones and also helpful in keeping me cool.

Jacob is awesome like always. He's so agreeable to everything, that is except to Dad feeding him cereal in the morning. He likes to play games with him. LOL We have been dealing with tons of urine leaking throughout the night. He has been soaked head to toe, diaper, jammies, pink pad under him, YUCK. We are waiting on some kind of reason for this, which never seems to come. We are hoping to get his stoma defluxed again when he has his botox treatment. Of course this has been a hard thing to coordinate two doctors together, so still waiting for a date on that one.

Jacob's birthday and 1st communion are coming up on August 8th, which also happens to be his golden birthday :) After church, we will have a party for him.

Hope this finds everyone well.

God is Good...All the time!
Love, Karla

Wednesday, June 23, 2010 8:38 AM CDT

It's been too long. Funny how when everything is going really well, I don't have as much to say!

Boys had a great time at camp as always. It rained most of the week, so their clothes were disgusting to wash. They came home on Friday afternoon, I washed clothes, and then repacked Michael for his mission trip to West Virginia's Appalachian region. Michael left on the train on Saturday morning. I heard from him on Sunday saying he was there and that it was hard to sleep on the train. Hopefully he is having a great time and is setting an example for others that they can see the work of Christ in him.

Devin has found a few things to keep him busy.

And then he decided to make goop...remember this stuff? Corn starch and water!

Gotta love google for finding things!

Angela loved this too!

Devin also has a book called 101 Cool Science Experiments which has been getting a work out. He especially loves the baking soda and vinegar trick!

We had 2 kids from our church over for a couple nights this week- Dustin and Hannah. It was fun having a girl around! They all played so nice together. I couldn't believe all the things they found to do.

Jacob seems to have adjusted to being home all day just fine. He's had a couple of firsts! He had a mosquito bite on his right wrist. He used his left hands to scratch it! It was really funny to watch himself figure out he can use his fingernails. LOL

We sit in the front row at church. Everytime someone says hi to him during communion, he thinks he needs to give them a hug. When our friend Dustin was here, everytime Dustin said something to him, he needed another hug. :)

Here's some cute pics of Jakey, hanging out.

Hope everyone is having a great week!

Love, Karla

Thursday, June 10, 2010 4:48 PM CDT

Hello!

"I'm BORED! There's NOTHING TO DO!" is about all I've heard for the past few days. I told Devin that I could find plenty of things for him to do. It's going to be a long summer if this keeps up.

Last week, Devin and I went to the Minnesota Zoo on a final field trip. Jacob went bowling and to the park with his class. School was out on Friday. There was an assembly, which Devin was the MC for. At the end, they rolled out the red carpet for the 5th graders. The teachers all made a bridge and the 5th graders walked out in preparation for middle school. I was a blubbering mess. I tell ya....

Michael and Devin are off to Bible camp this weekend. They will be gone for 5 days. They have loved going, so I am sure this year will be awesome as well. When Michael gets back, he will leave for the Appalachians on a mission trip. Exciting stuff!

Nothing else going on here. Jacob is getting into a routine. We have standing time, story time and then lunch and nap. We are having a relatively quiet summer with Jacob medically. He is having botox in his right hand/arm and the urologist with clean up his monti stoma, but no major surgeries this year! Yeah!

Love, Karla

Wednesday, June 2, 2010 4:38 PM CDT

Hello Peeps! :)

We had a super awesome weekend. Angela went to visit her mom and dad. Devin went to a friend's Friday and Saturday. Saturday, I spent time with Michael. Always nice to have one on one time. We attempted to rummage sale, but there was nothing exciting out there. Sunday was church and a really low key afternoon. I loved the fact that there was really nothing to do!

Monday, we met up with Tom, Deb, and Angela to go to the beach. There is an awesome beach in Winona with a nice picnic area and CLEAN bathrooms/changing rooms! We stopped at KFC to pick up food, had a picnic, went swimming and laid in the sun. Afterwards, we had Dairy Queen. YUM!

Here comes the best part.....One of my main goals for Jacob has always been to allow him to experience life just like his brothers. A wheelchair in the sand isn't easy to push, so we brought a plastic special needs chair he go in the water in! Oh my, he laughed when he was in the water....it was so hilarious to him to be part of what we were doing. Michael and Devin were playing with a beach ball and Jacob joined in. The absolute joy and the belly laughs were worth all the hard work of carrying him through the sand....sometimes it is extremely challenging to give him experiences because of the extra work it entails, but the end result is what matters!

Supper involved BRATS! You can tell Jacob is definitely German :)

We are not a baby either....give me the WHOLE brat!

How cute am I?!?!?

It's the last week of school. Kids are excited for summer. Devin and Jacob have field trips and fun this week, Michael has finals. He feels short changed! LOL Not sure what Jacob understands, but I am sure he will be sad not to see all his friends everyday!

TTFN!

Love, Karla

Friday, May 28, 2010 5:41 PM CDT

Jacob, Jacob, Jacob. We asked for naughtiness and we got it :) Jacob has a thing for the library (LMC) at school. Whenever it is quiet, he think the stage is being set for him to show off. He was talking and talking very loudly in fact when he was supposed to be listening. It doesn't help that he has a couple of aides that work with him who bring it out in him :)

Jacob went on a field trip to an indoor water park today. I think he had a pretty awesome time since he came home extremely tired! I love that the school gives him so many experiences.

It has been 11 months since Angela moved in with us. It has been extremely tough, but so rewarding. Lately, she has become so aware of what the boys do. A couple weeks ago, she took my camera and took over a hundred pictures on it. It was hilarious to look at them! Then a couple days ago, Angela wanted to see my phone so she could "text Devin." Devin was such a great sport, texting back and forth with her for 3 hours!!! She can't read or write, so the texts consisted of lots of letters. Every now and then, it would only be a couple letters, like it was a short answer! LOL Oh she cracks me up. The best part was her facial expressions, like she was so cool texting! Today, she noticed Michael's IPod and asked if she could listen to it. She has been listening to it ever since. Oh I love it. The simplest things that make her feel important and part of something that the boys do. When I took her in, I never expected to feel like this....to be a part of something so cool, watching someone gain confidence and self esteem right before my eyes...Amazing.

We are all looking forward to a nice weekend. Nothing too exciting planned yet, but will probably consist of a trip to the beach and/or park and a picnic, maybe even a stop at an ice cream shop! Hope everyone has a wonderful weekend!

Love, Karla

Tuesday, May 25, 2010 4:36 PM CDT

Hello everyone! A little update on what's going on in this corner of the world!

Jacob funny for the week: Last week, Jacob was in the library listening to a story. Jacob was sitting there listening, then started snoring, laughing at himself, and hitting his head for "Oh MAN!" Needless to say, everyone found this quite funny since the story was pretty boring! He ended up having to be brought to another area of the library since he was distracting everyone! LOL

Saturday, we went to a friend's son's graduation party, only to arrive when an accident had just taken place. Another friend's daughter and granddaughter were in the accident, leaving her very upset and wanting to go to the hospital to be with them. I drove her down there to be with them. Thankfully, I have such an awesome husband who was able to take the kids with him to enjoy the party and then later come back to get me. That night, we went to another Peder Eide concert. Highly recommended, awesome, awesome, awesome! It was so cute to see Jacob know the songs this time since we sing/play them in the van all the time.

The weather since Sunday has been HOT. I do not do well in heat, so the air conditioning has been my best friend.

I've been going to the doctor lately to figure out how to get me some deep restful sleep. Since Jacob's birth, I haven't actually slept the way I should, so I am really dragging all the time. I've known something isn't right for years, but I finally found a doctor who is getting to the bottom of it. Please keep me in your prayers for restful sleep!

Hope everyone is having a great week, hot sweaty weather and all!!!

Love, Karla

Tuesday, May 18, 2010 5:22 PM CDT

Hello everyone! Yesterday was Mayo Day. Jacob was beyond excited to see Crazy Jan. Jan checks us in, takes vitals, and gets us to a room. Jacob needed a zillion hugs, kept saying he loved her, and laughed and carried on. Oh, he is such a honey :) I love that he KNOWS people, he truly has people he can count on who love and take care of him.

Jacob had an x-ray for his scoliosis, and we are THRILLED to say his scoliosis has actually improved in all areas of his spine! Praise God! His kyphosis, the rounding of his back, is even better! The measurement of his spine was getting bad enough that the surgery word was being used, so to see progress in the right direction is awesome!

Physical medicine was happy with the stability of his contractures. Nothing has progressed, except his right hand. This is something which is bound to happen because of his cerebral palsy, where the hand turns inward, but we are keeping it stretched and braced as much as we can. Jacob will have botox in his right hand again soon.

We also saw OT for a new hand splint and PT to discuss equipment, etc. Mostly I think Jacob sees these as social visits to show off a little :)

Urology is very pleased with how his MACE looks. His Monti stoma for cathing though has a little tissue that needs to be trimmed up, so when he gets his botox, urology will take care of his stoma too. Jacob is still leaking a little from both his stoma and penis, so he will get Deflux again to tighten things up. If this doesn't help for very long, I think I will just leave it be. He used to be in underwear for quite some time, but has been in diapers again for almost a year. This was actually the best visit I've had with urology as far as listening to me, so I was very pleased.

We saw a new neurologist yesterday. I was very pleased and impressed with her. She has a very tender heart with children who are very involved neurologically. She did a head to toe assessment of him and seemed to have a pretty good feeling for what Jacob is all about. We got a prescription for a cooling vest because Jacob does not sweat- Holly- give me some insight on how to get one- and we also had labs run to make sure all his functions aren't effected by the meds he is on since he's been on Topamax and Valproic Acid for so long now. We are so pleased to say he hasn't had any seizures since early 2008!

The ride home was uneventful. I think I could drive to and from Rochester in my sleep. Everyone was glad we were home, especially Angela. She worries if everyone is not in their place, especially after I was gone with Jacob last summer for his surgery. Dave had made tater tot hotdish for us when we got home, or as Angela called it, "casserole hotdish." LOL

Jacob went on a field trip today to McDonalds and golfing. He had such a fun day!!! Michael and Devin stayed home today because now they have sore throats. I had one for 2 weeks. I was hoping no one would get it, but no luck. It was awful.

Hope everyone has a wonderful week!

Love, Karla

Saturday, May 15, 2010 10:59 PM CDT

No, I haven't fallen off the face of the earth! I didn't even realize it had been this long! Okay, a recap of what's been going on around here...

Devin's 11th birthday was on April 28th. He got a cellphone for his birthday and is so excited about it. Now I get to hear text language even when he is talking. Drives Michael crazy. :) Here's the pictures from Devin's birthday. We went out to eat at Pizza Doctors...YUM!

Birthday Boy!

Devin on his phone!

What a couple of dorks.

Angela is so stinkin' cute.

Jacob eating pizza. Don't even bother talking to him when he eats, he's too busy!

Mother's Day was awesome. My boys bought me a couple of DVDs I have been wanting. I must be teaching Michael to be observant because he got me what I wanted! Score one for Michael! They took me out for lunch, then spent the afternoon together. We had Tom and Deb over for supper so Angela could spend time with her mom on Mother's Day.

Me and my kids :)

Devin is going into middle school next year...unreal. He went to visit the school and also had his 5th grade bash where all the 5th graders from the 4 schools in our district come together for a night of fun. Here he is before he left...anyone who knows Devin's personality can just imagine him dressing like this!

Michael turned 17 today! I just don't know how it is possible that 17 years has past.

We went out to Pizza Doctors for Michael's birthday too then off to a movie. Jacob is so hilarious at movies. He laughs at all the sound effects.

Now onto some cute Jakey stories. One day, Jacob was playing with his communication device while at the back door of the school. The door was open and the bus was idling. He said, "It's too loud!" Now it is one thing to understand I want something to eat, I want to listen to music, etc when he gets something in return for picking those. To understand an abstract concept like "It's too loud" is phenomenal!!!!

Jacob kept telling me NO one day everytime I asked him if he loved me. I got a little upset with him saying he was hurting my feelings when he said no. He quickly started saying, "I LA!" for I love you :)

Jacob gets really sassy with one of his aides at school. I told him that he needs to stop telling her no and snoring for her, that we were going to have a talk with Ms Trista, his teacher, about it. The next morning, I told Trista with Jacob sitting there, and he hit his head for "Oh Man!" BUSTED!

My mom and stepdad were here and Jacob will not talk when they are around. I was in the dining room with Jacob, and he was talking to me. The second my mom walked in, he stopped talking and got all embarrassed like, "Darn! She heard me!!!'

Jacob had a bad cold and needed to be picked up from school one day. Trista asked him if he had anything to say before he left. Using his device, he said, "I need a hug!"

Monday is Mayo Day. We will see the nurse, physical medicine, PT, neurology, and urology and have a spine x-ray. Should be an exciting day!

Thanks so much for all the messages in the guestbook!

Love, Karla

Wednesday, April 21, 2010 7:55 PM CDT

Hello again. Not sure how many are still reading this site. It would be nice to hear from some of you I haven't heard from in a long time!

It's weird sometimes having a child with special needs. The weirdest things catch you off guard at the weirdest times. I got a newsletter from school today that said the kids would be doing some outdoor activities for Earth Day. They would need to be wearing some sturdy footwear since they will be outside. I think Jacob might just go barefoot. Not like he is going to be hiking anywhere soon! LOL And then I was in the store looking at the cups since Jacob's top goal is to learn how to drink independently. Well, first of all, who pays over $6.00 for a cup???? WOW. And then I noticed that ALLLLL the cups said spillproof. The point is, we WANT it to spill because he can't suck anymore. HMMMMM....It truly can be very hilarious when I think about it. It's funny looking at things or reading things through a different set of lenses. I am sure other parents know what I mean :)

Jacob's IEP was yesterday and it went great! He is really progressing with his Springboard Lite. The teachers are going to talk to the kids in Jacob's class to see what kind of things they think Jacob would like to say, what kind of things kids his age are doing, or saying. I think that is an awesome idea! They were thinking of putting jokes on his device. That should be a good one! He is making strides in using a spoon, which really made him embarrassed when the OT told me about it...I think he felt like he was BUSTED since he only uses his hand at home. PT said Jacob is doing lots of stretching and range of motion, riding his bike, and using the stander. All of this have kept him in a stable pattern with his contractures. He is doing some awesome things with the vision teacher. He loves using a black light with white gloves that glow. He is also using eye gaze to pick out the circle shape to put into a puzzle!!! If he could start identifying more things and using an eye gaze to point out which one he wants, it could open up some new doors! Everything else is going great...next year will have some more focus on academics and some beginning toddler/preschool skills :)

Hope everyone is having a great week! So far, so good for us here!

Love, Karla

Sunday, April 18, 2010 7:56 PM CDT

Good Sunday everyone! We have had a couple busy, WINDY rummage sale days. For the first year, I had a normal amount of sale items instead of over the top craziness! I still sold quite a bit and am happy to say I have money for me to go to other rummage sales this summer now. It cracks me up that I have a couple "followers." They purposely come to my sale first because they know I have good quality clothes. Their kids are the size Jacob has just outgrown. Cool huh? Angela was cracking me up on Friday. She loves sales anyway and to have our own was really cool. Angela wants to get some new baby clothes this year at sales, so I told her she should probably try to sell some at our sale so she doesn't have too many. After an hour in her room, I went to find out what she had decided on selling. On the bed was one, yes ONE, sleeper. Hard decision I guess on what she wanted to get rid of! LOL!!!

Jacob's IEP is this week. I am looking forward to hearing how he is doing, even though I go in there every day to drop him off and pick him up. Plus, we have an awesome team that is working with Jacob who love him as he is and are always encouraging him to grow and learn. The things they have done for and with him in the few short years he has been in school is incredible.

Devin had his birthday party with friends at the roller rink yesterday. Always a good time. One of his friends fits in so good with our family, that it is never a problem when he wants to stay over. Devin goes over to his house a lot too and his mom says the same thing. Always nice to have awesome friends!

Michael's car was acting up this past week, so he called his dad to come over and help him with it. Even though Dave is here and has always been his dad as well, it was awesome that Michael wanted his dad to help him. He is such a great kid. I don't know what I did to deserve such a kid like him....lots of hard work I guess! Michael has made some awesome friends at church so they have been coming over here as well as Michael going to their house. Once again, it's nice to have awesome friends for your kids who you enjoy filling your house with!

Jacob has been amazing us again. We saw Michael's grandparents in the store last week. He had his Springboard with him and was listening to his funny sounds, music, etc and then when we stopped to talk to them, Jacob said, "HI! What are you doing?" Amazing..... Then one day I was getting gas, came back into the van and he was saying, "What are you doing? Are we done yet? Bye!" over and over and over! I am so impressed with his communication since getting his communication device. I figured it was in there, but to see it coming out has been awesome.

Hope everyone had a beautiful weekend. We had an awesome day at church again. I can't believe how much changing churches has changed us. It's incredible. God is Good! All the Time!

Love, Karla

Saturday, April 10, 2010 2:41 PM CDT

It has been too long! We have been busy busy busy! Palm Sunday, we went to my sister's house and spent the day with family. My sister Karen and her son Tallack were in the cities, so we got to visit with them too. It was so nice for all 4 of us sisters to be together! I also got to spend some snuggle time with my great-niece Evelyn!

Evie is WAY too cute :)

My nephew Justin and his wife Renee had a baby girl April 5th named Maria Catherine. We are so happy for them! It's pretty cool being a great aunt!

We had a wonderful Easter. The boys were in a Easter drama put on by the youth. Very powerful. Angela and the boys enjoyed coloring eggs. Jakey is allergic to eggs, so he just watched with his cute hat on!

Devin is the only child I know who eats almost all of his eggs right after he colors them!

Jacob has had some pretty awesome firsts lately! The teacher programmed his Springboard Lite so he could order at McDonalds....Cheeseburger happy meal, no pickle, and a chocolate milk! Check out the proud McD's boy with the happy meal box on his head!

One of my goals for Jacob this year has been to get Jacob sent to the principal's office. I know....a little strange, but a mama has to have priorities! Jacob's 2nd grade teacher has been on the mission. Jacob was playing with his device, hitting the burps and farts, all the time, having a crowd around him. Jacob's teacher asked him to say excuse me and all he said was NO! Mrs. Grace took this as a perfect opportunity to follow through on the principal dream and took him to the office. I have a wonderful pink slip to remember the day Jakey got sent to the office. I followed through on my promise to throw a party in his honor!

Here is the troublemaker and the principal!

Parents of special needs kids need to celebrate all these momentous opportunities! Thanks to a wonderful teacher who helped me fulfill one of my dreams! LOL The kids were so concerned about him going to the principal's office. We told them it was really just a silly joke. We don't want to encourage anything! :)

Love, Karla

Sunday, March 21, 2010 5:25 PM CDT

Matthew 25:40 "Truly I say to you, Inasmuch as you have done it to one of the least of these my brothers, you have done it to me."

Jacob is very much like a newborn physically. He needs help with basically all of his cares. He is unable to roll, crawl, or walk. He is unable to push himself up on his arms while on his tummy. He needs to be cathed in order to empty his bladder. He needs help pooping. He can feed himself by hand and needs help drinking. He can't just get up and get himself something to eat. It is up to me to know when he needs to eat, be cathed, and to give him enough fluids for the day. Sometimes it is very overwhelming and thanks to a wonderful husband who shares in caring for him, I don't have to do it on my own. However, it truly isn't a chore, because by serving Jacob, I am also serving the Lord. A funny thing happens.....I think that I am the one who is doing a service to Jacob, but miraculously it's truly Jacob who is giving something to me. Isn't that amazing how that happens? You go into something thinking that you are the one who is doing the good deed and blessing someone else, yet you are blessed in this service. What a wonderful blessing God bestows on us in this simple act of serving.

It reminds me of the ever so present question I am asked, "How do you do it? I don't think I could EVER handle it." And my thought is GOD. To know Him and be in His presence is sweet. I get to see it every time I look at that precious son of mine....true and honest love for his mama. Trusting that I will care for him. And the rewards I receive are priceless....

Here is a perfect example of why I love this boy so much.

What a HOOT!

Love, Karla

Monday, March 8, 2010 9:29 PM CST

We have had some wonderful days around here. Angela is doing SO good with her behaviors. We have to constantly keep on top of things, but we are seeing our hard work finally pay off. The boys are awesome as always. Michael and I talked with his guidance counselor at school about his senior year and college plans. WOW. Devin is loving a new project at school. They are in the colonial days and earn money/have to pay for taxes for different things throughout the day. What a neat way to understand what life was like by immersing them in it.

And then there is Jacob. I just can't tell you all how much I am in love with him. He totally warms my heart just being himself. I always have been one to enjoy the smallest things about children, but it is incredible to watch him grow and learn right before my eyes. I was in tickling him tonight, and he was just sucking it all up. He was laughing and then started fake coughing to get my attention. He also loves to bounce on his bed with help from mama. He even makes the AHHHH AHHHH AHHHH sounds to go with it. How did he know to do that? Just too amazing....

Last night, we went to a Christian family concert. It was incredible and inspiring. If any of you get a chance to go a Peder Eide concert, please do. He emphasized family and building a strong family bond. Awesome ideas to take home and use, not to mention the awesome music!

We also went to the circus this past week. It was so cool to see it through Angela's eyes. I wonder in the fact that she hasn't experienced as much as my boys have, so to give her these memories has been amazing.

Michael's sister came over for the weekend. We took the kids to see Alice in Wonderland in 3-D. Awesome movie! Jacob laughed so hard, especially at the part where they were singing Twinkle Twinkle and got the words all mixed up. He totally gets humor, which again is amazing...

I finally took pictures of the new addition!

This is looking down the hall into the new addition.

Jacob's room!

Jacob's cool floor!

This is our room!

The new bathroom! You can see the shower curtain reflected in the mirror.

We are so enjoying the extra space!

Love, Karla

Monday, March 8, 2010 9:29 PM CST

Sunday, February 28, 2010 4:02 PM CST

Hello everyone! It's been too long! Hello to my crazy Lauren! Jacob loves you!

Oh, we have a sassy britches on our hands. It has been 3 days of NO. The answer to all questions is NO. That is unless his friend Tom asks him a question, then the answer is YES. This morning, he was super sassy to Dad, thinking all things were funny and that he didn't have to eat his cereal. Snoring, laughing, talking, refusing to open his mouth, etc etc until finally Mom stepped in and set things straight. Oh the joys a naughty boy brings. If you had told me that someday I'd be excited for naughtiness, I would have called you a liar. Now, I can't wait for it.

The last few weeks have been busy, but nothing too exciting. We went to Mayo this past Tuesday for a tune up on his wheelchair and a new tray. Jacob LOVED showing off his new Springboard Lite communication device. He especially loves showing everyone the burp and fart sounds. Such a true boy! I was sharing that on our last visit, Jacob told me he was tired. Jacob was listening to me and instantly found "I'm tired!" and looked around the room to make sure everyone saw how he did it! LOL Jacob also had to make his rounds and visit with everyone. He was busy jabbering with crazy Jan, who absolutely loves when Jacob comes! I told Jacob to show her one more thing and then we had to go home. Jacob showed her something on his device, then hit "All done!" He is too smart!

Michael is thrilled to have his own car! He is driving Grandma Lorraine's car since she is unable to drive anymore. He was busy helping Dave change tires and getting it all ready to go.

We have started getting info from the middle school for Devin. It doesn't seem possible that next year he will start middle school and Michael will be a senior. I remember when Michael brought Devin into Kindergarten for show and tell!

Hope everyone is doing well. Have a great week!

Love, Karla

Sunday, February 28, 2010 4:02 PM CST

Tuesday, February 2, 2010 10:35 PM CST

WHAT....A.....MORNING!!!! Nurse calls in that she isn't coming, Miss A was a pain, refusing to get on the bus, Devin tries to help get Jacob ready, I am still in my PJ's at the time I am supposed to be bringing kids to school, the roads are horrible, so I can't go to Rochester today for Jakey's appts. Oh well....it's fine to reschedule them since they aren't life or death. I get home from dropping kids off at school and get another optic migraine. I am really not liking that. Even though the eye doctor has checked into them, it scares me that I have them so often. I will have to talk to my regular doctor about them too. The rest of the day I was able to take a deep breath. Thank God for another bathroom where I could soak in the tub with no interruptions! Hoping for a better tomorrow.

Jacob is doing great. So far, there has been no leaking in the diaper yet. Keep your fingers crossed!

I have a long standing joke with Jacob's teachers. It has been my goal to have such a naughty boy that he gets sent to the principal's office...when that happens you are all invited to a huge party! Today's note from his teacher on his report card was hilarious. It says, "Jacob's cheery disposition brightens our classroom. The mood always goes up when he's in the room. We love how the assistive device allows Jacob to communicate in new ways. I will say he makes sure he uses it to get our attention at inappropriate times. Jacob and I have talked at length about this and if he doesn't knock it off he's going to end up in the principal's office (ha ha ha.)" Isn't that the best???

Michael has been enjoying going to youth group Tuesday nights at church. The group has so much fun, they don't want to leave! Nice problem to have huh? Tonight when he came home, he was reading his Bible and marking things in it...It makes a mama smile!

Friday is Devin's big performance! Hansel has his lines memorized and is NERVOUS! LOL So cute :) Today, they got in costume and video taped it I guess. There are 3 short plays the drama club is doing. Can't wait to see them!

Love, Karla

Saturday, January 30, 2010 7:32 PM CST

Hello everyone! Three entries in a week! What is wrong with me?

I removed the foley catheter on Friday morning and was able to cath Jacob through his stoma perfectly! No leaking so far! The school nurse even said how nice it was to get back into our normal routine. So far, the stink has stayed out of his urine, which means the antibiotics worked. It will come back I'm sure, but if we can make it a few months in between each infection, then we are doing good. He will always have bacteria in his bladder since they used a piece of his bowel to make his bladder bigger. Keeping the bacteria under control is key.

Jacob did the CUTEST thing this morning. He heard Michael and started laughing when I asked Michael to do some chores for me. I told him if he thought it was so funny that bubba had to do all the work, I was going to make him get up and do the work for Michael. Michael then proceeded to stomp into Jacob's bedroom, give Jacob heck, and left. I came into his room next to get him up for breakfast, and Jacob THREW A FIT! He didn't want ME he wanted MICHAEL. Once Michael came, Jacob literally lunged forward to go to him. Those who have met Jacob personally know he doesn't often have that strength, coordination, etc to do this, so it was rather funny to see him do it. The rest of the morning, Jacob only wanted Michael :) Too cute.

Tuesday, Jacob is going to have his wheelchair looked at for an adjustment and hopefully measured for a new tray. We will then meet with a new neurologist. Jacob's neurologist moved to Chicago, so the need for finding someone is there, just hard to do! I know we will be in good hands though and look forward to meeting a new doctor.

Dave and I got some time together today, even if it was for grocery shopping! Michael went to his dad's, Devin was at a friend's, and Angela is at respite for the weekend. I think Jacob likes to have all the attention to himself every now and then, even though it is much more fun with bubba pushing him through the store!

Hope everyone is having a great weekend. We are having our annual party at church tomorrow. Instead of the boring annual meetings, our church has a party. Should be fun :)

Love, Karla

Thursday, January 28, 2010 9:23 PM CST

Hello everyone! Thought I should let you all know things went well on Tuesday. Jacob had to keep everyone on their toes when his heartrate went down low enough to scare everyone. His body temp was also super low, and he needed to be warmed for over an hour. It took 3 hours for him to wake up. Wouldn't you know the thing that actually woke him up was FOOD?!?!? I said, "Jakey, are you hungry? Do you want some nummies?" and he popped open his eyes and tried to sit up! Within 5 minutes he was sitting up eating chocolate ice cream :) He has a foley until tomorrow morning, then I can start cathing his stoma again.

We have had a busy month! Angela's birthday was on the 18th. We had a great day with her, followed by a birthday party with her family and friends from church last weekend.

Jacob spent last week very sick with a UTI. He only went to school for part of a day. The rest of the time he was sick and very sleepy. Once again, he had e coli growing. Things have cleared up and hopefully will stay that way for a while.

Last week, there was a lot of frost in the trees. Check out these gorgeous pics! This week it has been COLD!!!!

Hope everyone is doing well. I'd love to hear from you!

Love, Karla

Tuesday, January 26, 2010 8:05 AM CST

Good morning! Jacob is in the OR right now having Deflux (collagen) put into his cathing stoma. He has been leaking urine since this past summer, first below, now in his new stoma. It hopefully shouldn't take long, probably longer to put him to sleep and wake up than the actual injection.

Jacob saw urology yesterday and everything looked good on his scans and blood work. His kidneys seem to be doing well since we started cathing regularly. Orthopedics said his hips looked unchanged and while he has some changes in his knee and hip contractures, they aren't of too much concern to do anything about them at this time, except to keep bracing and stretching. Jacob's scoliosis (curvature of his spine) is getting much worse however. The top curve is 31 degrees and the lower curve is 51 degrees. The surgeon obviously wants to hold off on fusing his spine as long as possible, but if Jacob gets to 60 degrees, we will have to start discussing surgery. The kyphosis (rounding on the back) has stayed the same, even got just a few degrees better.

I will do another update later on how everything went and add some details and pictures on other happenings around our house!

Love, Karla

Monday, January 11, 2010 12:23 PM CST

Hello from chilly Wisconsin! It has been a very cold winter. I wonder sometimes what the heck I am doing living here when it is so cold, but the rest of the year and the lovely people we know here are worth it!

Our remodel is done, except for waiting on Jacob's flooring, which also means the bathroom isn't done since the plumber and contractor only wants to make one more trip. Jacob has a sink in his room too that needs to be hooked up. I am ready to get him in there! We are loving our new room, got it all decorated, etc. Angela loves her pink room too. I was so pleased with the extra closet room for here and have been able to organize her supplies.

We spent an awesome New Years at church. We ate, played game, kids played the Wii and Rock Band. It was great hanging out with all our friends there, where our kids could also have a great time.

School is back into full swing. Jacob has been working a lot on his new communication device. He has told us several times that he is "All done!" when he doesn't want to do something! LOL Jacob also loves to listen to his music and funny sounds on there. We got the pleasure of listening to Dance of the Sugar Plum Fairies sung with farting sounds many times this weekend. He is such a boy.

Michael and Devin are doing great. Devin got the role of Hansel in the play he is doing in drama club. He is very psyched. Michael is contemplating a job and what he wants to do in the future. It's fun to see him growing up so much. WOW.

I was so excited to be asked by Jacob's 2nd grade teacher to speak to a group of teachers in a masters program on Saturday. I promised God I would share our families story if I was blessed enough to raise Jacob. It has been wonderful to fulfill this promise. Of course the whole idea of talking to teachers was awesome since I will forever be a teacher even if I never teach in a classroom again.

We have had some really good days with Angela and some not so good days. We continue to work on medical appts to help with issues and lots of structure. She brings a lot of laughter and joy to our house as well. Some of the things that come out of her mouth are priceless. She's hilarious.

Hope everyone is having a wonderful week. Please let me know you stopped by!

Love, Karla

Monday, December 28, 2009 2:00 PM CST

It has been forever since I wrote! So much has been going on...the house is almost DONE! Doors and trim are going up today. Painting was done over Christmas. Flooring is being put in. Electricity will be on tomorrow! We will actually be able to use the toilet in the new bathroom as soon as the flooring is in! Hopefully everything will be done by New Years, except for the sinks in the bathroom since the cabinet isn't in until next week.

Our Christmas was fabulous! Angela's parents came over to spend the holiday with us as well as Dave's mom. We had a wonderful meal on Christmas Eve, went to church, and came home to open presents. The roads were closed that night because of freezing rain, so Michael couldn't go with his dad until Christmas Day. All the kids got amazing presents, with the big gift being a pool table. It is neat to see the boys growing up and changing, even though it is hard to get rid of all the little boy stuff!

The BEST part of Christmas however was Angela's reaction. She has never had a real Christmas, at least for years now. She had put out a letter for Santa and cookies and milk. When she woke up Christmas morning, she saw all her presents and that Santa left her a letter, along with eating/drinking her treats. I heard her at the top of the stairs crying and jumped out of bed thinking something was wrong. She was crying SO hard because Santa had come....to think she never had had such a good Christmas as this year....WOW. It makes all the hard work so worth it. Since then, she has been playing with her babies, swing, carseat, stroller, etc and living it up! Awesome :)

Jacob will still not even attempt to open the presents, but smiles the WHOLE time. He got some awesome movies, a DVD player since he has worn out 2 this year, toys, and clothes. He loves everything! It's fun to see how he noticed the tree this year, seemed to understand the whole concept of Christmas more, and was thrilled it was baby Jesus' birthday!

Here's some pics for you to enjoy!

Today is my birthday :) We are planning on going out for supper tonight. I've had a great day so far catching up on the internet and shows I've taped. Boys are out doing returns and "bonding" as Michael said. Actually I think they really wanted to spend their gift cards!

Hope everyone had a very BLESSED Christmas!

Love, Karla

Wednesday, December 9, 2009 2:01 PM CST

Can you say BLIZZARD? And we aren't talking about the kind you can get at Dairy Queen! We have had 15.5 inches of snow here. I suppose it had to happen sometime! Of course, school was cancelled, so all 6 of us have spent a lazy day around the house. Kids were outside playing in the snow, Dave shoveled, and Jacob, Angela, and I are still in our jammies!

The boys had a great time with Dad picking out the Christmas tree. It is strictly a no girls allowed kind of event for them....which they think is awesome. Michael wanted Jacob to come with this year, so he went too!

That night, we decorated our tree!

And more proof that my boys are crazy!

The house is really is coming along great! We now have relocated most of our possessions to various areas in the house. Hopefully soon, the plumbing will be done so Dave and I can actually sleep in our bed again. Angela is sleeping on her mattress in the living room. Jacob's bed is in the living room as well as his entire room! It is interesting for sure! The bathtub went in Friday. Angela's closet got bigger when Jacob's closet was opened to add to hers. Windows were rearranged and added into the addition. Everything is studded in and it's cool to envision what it will look like. The crawl space under the addition has an opening in the playroom downstairs and will be an amazing storage area! Pretty cool!

Monday, I brought Jacob to Mayo to be tested for the H1N1 shot. Because he is allergic to eggs, he has been unable to get flu shots in the past. Praise God Jacob did not react to the vaccine and received his first dose. Because he did so well with that lot #, they saved the rest of the vile for Jacob's second dose. Monday, we will go back for Spina Bifida/CP Clinic. He will see urology and orthopedic surgery. I am always concerned over his scoliosis, so hopefully that has not progressed at all. We will also discuss his right knee/thigh area which is tight.
Wednesday, he will go back to be tested for the seasonal flu shot. Hate to do so much running up there in the winter, but it has to be done.

Hope everyone is having a wonderful Advent season. We are counting the days until Christmas and have started doing activities every day. The boys and now Angela look forward to what's next :)

Lots of love,

Karla

Tuesday, December 1, 2009 10:13 PM CST

Hello everyone! I am finally able to change my graphics on this site! For some reason, there was no update page, so now you don't have to look at Halloween graphics at Christmas time.

We have been busy around here getting our addition put on! Yesterday, the floor was put on and one wall went up. Here is yesterday's progress.

Today, all the framing was done and two more walls, plus they started closing it in. I didn't get any pics today because it got too dark, but I will add them at a later time. Jacob's window was taken out and boarded up for now. That window area will become the new entrance into the hallway. Our new rooms won't be huge, but very nice for what we need. The roof is going to be stripped too, with new shingles going on it. The contractor brings his dog Sadie with, so our dog Annie and the kids have been having fun playing. It's rather cute.

Thanksgiving was a lot of fun and very relaxing this year. This is what happens when you give your teenager a camera in the van.

And then some cute ones I took :)

Done eating turkey dinner!

Friday was Black Friday shopping. Always a great time! Lots of people and lines, but not too bad! We were home by 10. Then stupid me decided to take Angela out since she was upset we had left without her. It didn't end pretty, we'll leave it at that.

We are getting ready for Christmas around here. Decorations are up, the boys are going to get the tree with Dad this weekend. I am starting my nightly activities with the kids that I have done for the past 3-4 years. I always love this time of the year. Most of my shopping is done, so I can sit back and enjoy!

Hope everyone is having a wonderful week!

Love, Karla

Saturday, November 21, 2009 10:15 PM CST

Making Amends.....

It's been a process, let me tell you. It's been over a year since we changed churches, and I felt it was time to lay some things to rest. I met with our old pastor and shared my feelings about what happened and what has happened since we left. It was time to talk and it felt right to do so. I also met with the appropriate Sunday School staff and tried to share where I was coming from and what led us to change. I felt this went really well overall with most of the members. However, it was brought to my attention that I have gone spreading rumors and lies about the church, not defending them on this website, putting the church in an unfavorable light, and that this website is always putting the church down, and praising how much more wonderful our new church is. It amazes me that I can be talked about behind my back in such a manner when the only things I have ever said have been the facts. When people have run into us in public and asked what happened I tell them that Jacob was not able to go downstairs with the other kids because of the stairs and that the insurance company was called saying we were not allowed to carry him. I tell them I was deeply hurt by this and things that were said. I say that I tried many times to figure out a way to work it out, and that we just couldn't do it anymore. All facts. Now if that offends people, I am sorry. It in no means is meant to offend anyone. And just like anything that is said, people can hear it the way they choose to, words and meanings gets misconstrued when repeated to someone else, and printed words don't give inflection or the meaning often represented by the writer. I am not sorry though we switched churches, nor will I stop saying how awesome our new church is, because IT IS! All of us feel better there. And Jacob is accepted there. That is not to say people didn't accept Jacob at our old church, it is saying our new church accepts him. It's nice to not worry about him not being blessed during a blessing or someone not seeing him to give him something the other kids got. It's nice to be asked if he can have a snack or popcorn for a movie and not be assumed he can't eat. It's nice to have kids run up to him and dang near climb in his wheelchair with him. It is nice to have adults who will take care of Jacob while I am talking to someone, busy with a meeting or just because they want to! I will not apologize for any of this. Our old church was very dear to us and that is why all of this hurt so much. And for those of you reading this and feeling angry, I can't help that. If anyone else wants to talk about me and what I supposedly said, they can tell me to my face. I'm done with having to justify myself.

ANYWAYS.....on to the rest of our life. Last weekend, we took the kids to Mt Olympus with a bunch of families from our church. I was completely surprised that Angela knows how to swim! She was doing flips and handstands! It was awesome! Jacob was Mister RELAXATION! He loves the pool!

Jacob also had fun riding the teacups!

AND bowling with Deb!

Angela loved the whole day! She surprised all of us by going on the roller coaster! I think Deb and I were more scared than she was!

And she was a crazy driver on the bumper cars! Deb, Angela, and I were laughing SO hard! Nothing like some good fun!

Pastor Steve was the craziest yet! He rode the roller coasters, waterslides and had a great time with the kids. Here he is on the bumper cars!

A visit to IHOP was in order after all that fun! Both boys got to bring a friend. It was awesome :) I was so proud of Michael driving to and from the Dells on the interstate. He is growing up too fast.

Michael had an awesome report card this quarter. Devin and Jacob had awesome conferences. Both are doing great in school. Jacob is teaching everyone about love, laughter, and compassion. Devin is too....his teacher told me he adds something extra special to her class.

Jacob's communication device is being programmed by the WONDERFUL staff who works with him! It is going to be so awesome to see what he can do with it.

Devin is truly one in a million. If you know him personally, you can totally see him getting a "beaver hat" right?

Yeah....sure, you are cool.....

And as an explorer discovering the new world! What a dork. Can you tell what they are learning in school right now?

I think he LOOKS like a beaver in this one! LOL

And can't forget cute Jakey!

Jacob is continuing to surprise us each day. I truly don't think I will ever get sick of the amazement I feel with him. He is so into loving everyone right now and TALKING! Man, I don't know where that kid gets it from, must be his dad. LOL

Here he is with his buddy Tom. Those two are like two peas in a pod.

Hope everyone is having a wonderful weekend. Hope you enjoyed all the pictures :)

Love, Karla

Saturday, November 21, 2009 10:15 PM CST

Sunday, November 8, 2009 9:06 PM CST

Hello out there! It is me....long time no see! Things are going very well here. We had a great Halloween. Thanks to loser mom, there are no pictures to share, but if some people from church love me enough, they will post pictures on our church website I can copy! ::::hint hint Michelle:::: Or Trista for that fact! LOL

Our church had it's 2nd annual Halloween Carnival, which was super fun and inside! We went out to visit one friend and walked down the block, but it was too cold, so I was glad for the church party. Michael and Devin went out alone for the first time which was sad for me...my boys are growing up! I didn't even get to see them in their costumes because they went to a friends. They dressed up as Gangsta Clowns. LOL Jacob was a cute clown, not a scary one like bubbas. The nice thing is he didn't even need a wig! Angela dressed up as a baby! It was hilarious!

Jacob went to Mayo for 2 appts on the 29th. He saw physical medicine and neuro. Jacob's right knee and his hips are getting more of a contracture in it, so we will see what orthopedic surgery says in December. Jacob was so pathetically social for both appts, I could barely get a word in. He had so many stories to tell! I love it! Our neuro is moving to Chicago, so we had a final appt with her. It is going to be so sad to see her go since she was the doctor who talked to Dave and I at the time of diagnosis. We will never forget her kindness. It was funny listening to her trying to decide who she'd "let" take over Jacob's care. She feels very invested in him and won't just let anyone care for him.

We will be heading back to Rochester on Tuesday to get a new seat for Jacob's wheelchair. He has grown so much, he needs a whole new seat! It will be nice to have him sitting more comfortably. He will still have the same green base, just a new seat. I love the people we work with...they make custom seating for him so that it comforts his back and tailbone appropriately for his spina bifida.

I shared Jacob's story at church today. It was so awesome to share our faith journey with others. I truly love our church family and feel so comfortable there. Everyone is amazing...

Yesterday, we started our remodel project! Jacob's bedroom will turn into a bathroom and then a bigger room for Jacob and a master bedroom will be added. We are so excited to have more room for everyone. Tomorrow the footings will be placed and hopefully cement will be poured.

Lorraine's house has been sold....talk about a HUGE weight lifted off our shoulders!

Hope everyone is doing well! I'd love to hear from all of you!

Love, Karla

Thursday, October 15, 2009 4:11 PM CDT

Hello everyone! Not much going on around here. Nothing too exciting to write about anyway!

Jacob had his yearly physical today. He weighed 47 lb 10 oz. and was 43 inches long. For some reason I thought he was 48, but guess not! LOL He is in the 1 percentile for height and 27th percentile for weight. He is very healthy right now, everything looked great. The weird thing is, I remember being in the pediatrician's office all the time, and now Jacob basically goes just for his yearly physical!

Our neurologist at Mayo is leaving. We are very sad about it, and hope we can find a substitute neurologist since I will not see the other neurologist in clinic. We are going to see her one last time this month before she leaves, then head back in November for wheelchair clinic. and in December for urology and orthopedic surgery.

Hope everyone is having a great week! We have been decorating for Halloween, which Angela is thrilled about!

Love, Karla

Wednesday, October 7, 2009 9:26 PM CDT

Jacob has had a great week. He is very chatty and LOUD. Today has been an "I LA" kind of day. It's so cute to hear him say he loves us :)

There has been major leakage through his new Monti. His urine is very stinky and similar to what happens when the bacteria gets out of hand. Since we used a piece of his bowel for the bladder augmentation, he will always have bacteria. It's our challenge to keep the bacteria under control. I brought urine in this morning and so far it is full of bacteria and white blood cells, but we will wait until Friday to make a decision on whether to treat or not.

Michael is going to a career fair tomorrow. He will get info from a variety of colleges on what programs they offer as well as look at careers that might be of interest to him. It doesn't seem possible that he could be doing this already....

Nothing else too exciting going on around here. I changed the intro above a little if you want to re-read it!

Hope everyone is having a great week!

Love, Karla

Sunday, October 4, 2009 11:19 PM CDT

Hello again. I got a call on Friday from the speech teacher. Obviously Mr Cuteness's cuteness is going to his head. He thinks that if he hits his head doing his "Oh MAN!" snores, asks for hugs, says "I LA" or laughs hysterically he can get out of just about any work anyone has for him. Personally I think it is hilarious that he is actually figuring this out. I am hoping and praying for a trip to the principal's office for naughtiness so we can throw a party! I had a talk with him on Friday night about how he has to do his work at school and he just hid his face in my shirt. He knew he was BUSTED! LOL

Last Tuesday, I went into Jacob's class and talked to them about Jacob since many of the kids did not know his story. I think the kids were very receptive to everything I had to say, not to mention totally awesome at making him pictures later in the day to tell him how much they like him. My favorite is a paper that says "Jacob is COOL!"

I had a super hard week grieving over what is and isn't....somehow my focus on what is truly important always comes back, but fact is, the grieving never does completely go away.

Jacob had a chance to go to Oktoberfest on Tuesday with his class. Each year, there is a special fester time open for people with special needs to ride for free and enjoy the fest. Devin's teacher said he could come with since times like this are often more important. He was thrilled to enjoy it with Jakey.

Jacob and his teacher Trista on the Merry Go Round!

Jacob thought the Tilt O' Whirl was hilarious!

Jacob also went on the spinning apples with Devin and I. He laughed so hard!

Silly Devin!

What a cute girl I have! LOL

We have been pushing our limits on Jacob's high chair, so after much thinking, I finally was able to get him up to the table in a Tumbleform chair. Check out the proud boy sitting at the table with us!

I have to share this video with you. Jacob's Godmother Kelly gave him Mr Rude when he was in the hospital. Mr Rude burps, farts, etc and Jacob thinks it is hysterical of course!

Hope everyone has a wonderful week ahead!

Love, Karla

Saturday, September 26, 2009 11:39 PM CDT

We had an awesome time last weekend camping with church. It was so enjoyable....I swear I have never laughed as hard as I did Saturday night. I was actually hoarse. There is nothing quite like time spent with awesome friends who share a common bond. Here are some pictures from the weekend.

"Oh MAN!"

Taking a nap with mama!

Dave working hard! (While I sat on a chair supervising! LOL)

Look at the muscles on that boy!

Devin learning how to drive Dale's tractor!

Our dog Annie was in her glory!

I came back home from the weekend totally refreshed, probably the most I have been in a long time. Well, that quickly went to heck with some issues we had with Angela. Oh my. It was not a good thing. It makes me so sad that the previous place she lived did not think it was necessary she follow rules, simple things mind you. BUT I will not give up and in to such things, and the structure and expectations and LOVE she is receiving here will make the difference. Dave and I did get a chance to go on a date Friday night thanks to Tom and Deb, Angela's parents. It's wonderful to have people who can care for Jacob and who our kids totally love. Devin said he didn't care if I came back. LOL

It never ceases to surprise me how the simplest thing can bring grief to the surface again. Second grade is definitely more structured and the gap between Jacob and the other kids his age just gets more and more apparent. He has fit into the classroom pretty well with accommodations, but now there is more work and discussions that just don't apply to him. I have known this was coming. It's pretty obvious. Just hard to take. The love I have for Jacob is so intense....I love him for who he is, all the silly things he does, how far he has come. But reality is definitely there and I just wish there was an easy way to make it better....but it will always be a part of who we are.....always. There is no really getting used to it. Some part you learn to adapt to, some things become easier, but other parts just never are.

This next week doesn't have too many exciting things planned. Jacob and I will attend SpecialFester on Tuesday. A special time is arranged for schools to bring kids with special needs to Oktoberfest. It should be fun :)

Hope everyone is having an awesome weekend!

Love, Karla

Wednesday, September 16, 2009 4:41 PM CDT

I am back! My modem went out and it took over a week for the morons to mail it to me. Well, actually they mailed it to me but to another town. Yeah, nice how the bill gets to me but they can't get it right in the phone book or when mailing a modem. I went through some serious internet withdrawals! LOL

Jacob is doing awesome. The foley and the catheter in his new stoma/Monti came out on Sept 8th. Of course the cathing went perfect while we were there, but as soon as we got home we had problems. We think the problem was an internal stitch which was in the way of the catheter. Now it works great. I love not having to lay him down to cath or having to pull his pants all the way down. The infection in his Monti is gone and the area is healing very nicely.

Jacob started school on Sept 9th. Check out my 2nd grader!

Devin is my awesome 5th grader!

And Michael is a JUNIOR! Unreal!

School is going pretty good. Still trying to get into the routine of it all.

I have to share these pictures from the hospital.

Snuggling with my bubba!

Watching Barney! I watched so much Barney, my DVD player broke!

Jacob LOVED music therapy!

It was one of those days! He loved chewing on his IV!

Hairdos courtesy of Michael!

Please continue to keep us in your thoughts and prayers. Things have been very stressful here with so many things just not going right whatsoever, from issues with money, the van getting fixed, dryer frying on us, to medical supplies Jacob needs, not feeling well, and me still having issues with my vision. It seems like if it can go wrong, it will. :::sigh::::

Glad to be back on here. Thanks for all your support.

Love, Karla

Saturday, September 5, 2009 11:04 PM CDT

This week has gotten better each day. Jacob's owies are healing finally. It still looks nasty, but nothing like it did. Angela is keeping track of his "stitches" to make sure it is getting better. She was laughing today because "Jakey, your stitches look much better!" Too cute!

Jacob went to Walmart today for his first real outing since surgery, besides the 1/2 hour at school. He did so good and was able to have all his braces on and sit in his chair for a couple hours.

The funniest part was when Michael called me and Jacob started fussing when I hung up. We had to call Michael back. Then we called Daddy, and I had the nerve to say goodbye without letting Jacob talk to him. He actually started crying really hard until he got to talk to Daddy. It cracks me up that he is figuring out this whole phone thing. Maybe because his mother talks on the phone too much!

We all needed a nap after we got home. I am still trying to catch up on sleep. Angela and I snuggled on the couch and fell asleep for a couple hours while Jacob napped too.

Tuesday, Jacob heads back to Rochester for his follow-up appt. Hopefully the catheter comes out and I will learn how to cath his new stoma. I will find out then when Jacob can go to school.

Hope everyone is having a great weekend!

Love, Karla

Wednesday, September 2, 2009 10:13 PM CDT

A few doses of his new antibiotic, and Jacob seems to be feeling a little better. At least he didn't sleep or scream all day, so I hope we are on the right track. We had some nursing this morning to help out, which allowed me to get more things unpacked. Hopefully ny the end of the week I will actually have the house back together. It's amazing how being away for a couple weeks puts everything in an upheaval.

It was great to get back to church tonight. Jacob was smiling ear to ear when he heard Pastor Steve start playing his guitar. We are so loved and included in our church.

Kids had another great day of school. I on the other hand have been struggling with this vision/headache thing. I saw the eye doctor this morning who said my prescription had gotten worse, but didn't seem to think anything else was wrong. I put my new contacts in and my eyes are still goofy acting. My regular eye doctor is back next week, so maybe he can figure out what is wrong.

Love, Karla

Tuesday, September 1, 2009 9:21 PM CDT

We are home! We came home last night around 7:00 PM after a long day waiting for the doctors to visit us and sign discharge papers between surgeries. Jacob had the absolutely cheesiest grin when he got on the lift into the van. He knew he was going HOME!

Today was the first day of school. Michael is a junior. This is not right! I told him I am absolutely not old enough to have a junior in high school!

Devin is in 5th grade. The oldest kids in the school. He was very worried about having to switch teachers/classes with the opening of the new school this year, but he was happy when he saw a few of his friends in his new class. He had to wear his skinny jeans today. That kid cracks me up with his fashion.

After school today, the boys picked up their reading glasses from the clinic. They are both stylin'. Devin said he had a headache today from working without them. I am praying that Michael will actually wear his.

Jacob went for morning meeting and to say hi to his friends. We stayed about a 1/2 hour before he needed to go home. He spent the rest of the day crying and very sleepy. When he wasn't sleeping, he wanted to be sleeping. I got worried, called the doctor, and couldn't get through. Within a couple minutes, without knowing I called, he called me wondering how Jacob was! The cultures came back from the pus and he is growing e coli. The meds he was on are kind of hit and miss for e coli, so he put Jacob on a stronger antibiotic and will call back tomorrow to see how he is doing. We are so lucky to have such wonderful residents in the urology dept.

Angela came home tonight and was SO excited! She told me she was sleeping over! LOL She just giggled and giggled about things and played with Devin for the longest time. It was so neat to see Jacob's response when he saw her. He wanted a hug and kissed her so hard, telling her I LA! I LA! She is definitely part of the family :)

Tomorrow I am getting my eyes checked out since I had some weird migraine thing on Friday and ever since then I have not been seeing good with my contacts in. It's making me sick to my stomach and very tired, but then again who knows if it is all from stress. Not that I have had any!

Hope everyone had a wonderful weekend. Thanks for all the prayers and support, even from those of you we may not know!

Love, Karla

Sunday, August 30, 2009 10:56 PM CDT

Ultrasound today showed no huge accumulation of fluid, just swelling, so that was great news! The blood flow to the area was also good. The resident was able to get a lot of pus out again and then just blood, so hopefully it is cleared. The area looks so gross though. Even the nurses have commented how bad it looks. Hopefully it will heal easily. The culture did grow yeast, so he is getting some antifungal on it as well as oral antibiotics.

I am really ready to go home. It looks like everything is good for tomorrow. We just need to let the head urologist look at it also. We have had the resident leading the show since Dr Kramer was in CA the last few days. I am always so impressed with the residents in the urology program. They are beyond awesome.

There is something so very special about Jacob. I have known it since he was born, but as he grows and starts to blossom into this amazing human being, I find myself in awe over and over. Jacob can experience so much and yet he continues to smile. He can go through what most over us would consider excrutiating pain, yet he does it with little more than a grunt. I can sing to him and distract him from whatever he is going through. He does all of this with grace. Seriously. It makes me feel a presence of God around him, comforting him and relieving him from all the pain he goes through. Most kids would be screaming, yet he doesn't. And it isn't that he's oblivious to pain or doesn't cry, he just really gets through the things that need to be done. The resident told him he was the bravest 7 year old he has ever seen. I will have to agree with that....I'm so proud to be his mama.

Love, Karla

Saturday, August 29, 2009 8:26 PM CDT

Every blood draw and IV has been accomplished 1st try this admission, so I was surprised when the one this morning didn't work. Then I found out they used Emla cream which eases the pain, but also shrinks his veins. (Insert SCREAMING here) I swear.....SO no blood could be drawn today. There was a lot of pus draining from his stoma today, which definitely means it is an infection and not vascular (good news.) It is a very large abscess though, so tomorrow he will have blood drawn(hopefully) and an ultrasound to see how big the abscess is. It will probably be opened up to drain (Insert VOMIT here) It should be interesting. I asked to predict when we can leave, and the doctor thought Monday or Tuesday. Regardless, we will have to get kids home for school on Tuesday, I am pushing for Monday.

Hope everyone had a more interesting day than I did.

Love, Karla

Friday, August 28, 2009 6:05 PM CDT

Another day in the hospital, 11 so far. It's been worse, but boy do I want to go home. Devin had a pity party for himself last night. I might have to have one today. Actually it's not that bad. It's just the same thing day after day, same food, same 4 walls, same walk in the hallways. The ladies in the smoothie bar are going to start automatically making my mystic mango smoothie when they see me if I am here much longer. I do consider myself lucky though...I overheard a woman making final arrangements for her husband who is dying. That puts things into perspective.

The doctor didn't have a whole lot extra to add today. We are staying the course with antibiotics. Tomorrow, Jacob will have blood drawn to see if he is doing better or worse. He is having a lot of pain anytime you get near the area, poor baby. I do love our care here though, so no complaints.

We will find out soon hopefully when we will be out of here. Boys start school on Tuesday. Dave starts driving his new school bus route too :) The van will hopefully be out of the auto body shop and a money tree will have grown overnight so I can pay for it.

Hope you all had a great week!

Love, Karla

Thursday, August 27, 2009 6:35 PM CDT

Our idea of a fast departure ended up with the door being slammed in our faces. Jacob has an infection in his new stoma. Despite this, we were still planning on going home today on oral antibiotics since he was overall feeling great. This morning however, he was crying, in pain, and feeling yucky, with a fever on top of it. We went to CT and his bladder and stoma appear irritated and inflamed which isn't all that concerning except for the look of the site and the fever, crying, etc. Jacob will be started on another stronger antibiotic and stay through the weekend. There is concern that the vascular connections to the bladder and stoma may be affected, but since these vessels are so small, you can't see it on a scan. If it is going to happen, it usually happens at this point, so please pray it is "only" an infection and nothing more. The doctor feels things are fine, but yet is still being cautious. We knew it was going too easy.

Otherwise things are going okay. Michael and Devin are not liking each other too much at this point. Not a big surprise since they are stuck in a small room together a good portion of the day. Luckily there are other things for them to do like play on the computer or Nintendo, go to the playroom, arts and crafts, bingo, a couple of parties and carnivals, and visitors to entertain them every now and then. Me, I've been incredibly mad at the WIFI connection they have here which only works when it wants and definitely not when I want it to. Since leaving the room isn't always the easiest thing to do, I rely on my laptop, so that is why my posts have been fewer lately.

Dave and I tag team staying with Jacob for the most part. Dave had to go home for a couple of days, so Jacob was here by himself overnight when the boys and I go to Ronald McDonald House. He has yelled at me the last 2 mornings about leaving him. He's sleeping when we leave and wakes up just before I get there, but it's still not good enough! Hard to split yourself in two and after one night of all of us in his room, I don't think we want to try that one again. LOL

I better get going.....food is here and while I am really getting sick of the same things over and over, it's better than nothing.

Love, Karla

Tuesday, August 25, 2009 7:40 PM CDT

We are looking at a possible exit on Thursday. Depends on how well Jacob does with eating and drinking. This is what held us up last time, but so far he has started to eat some food, had chocolate milk, and flushes of water in his tube. He threw up once, but I am not too worried unless that becomes the theme for the day. We have been so glad that he is such a great eater, so hopefully it won't be long and things will get back to normal since they didn't have to cut into his bowel. I know one of my friends asked on the guestbook a while ago if he was using the feeding pump. We only use that for water if needed, and since we were in CA, we ran extra fluids so he wouldn't get into trouble.

Jacob's Godmother Amy and her boys came yesterday for a visit. Pastor Steve and Diane stopped in for a quick visit and to deliver Jacob's turtle the kids at VBS made for him. Our church is so amazing....

Dave's leg is looking MUCH better and so is his attitude! It's amazing when you are sick how crabby you are....or I should say men are. LOL Dave went back on Sunday since he has to work Mon-Wed. this week. We did have a visit from him yesterday though....Michael had an accident with the van and Dave came to take it to the autobody shop. I really can't believe how when it rains it pours...I am really ready for a break. The accident was not his fault either by the way...

Otherwise things are going okay and we are all looking forward to going home and starting school next Tuesday. I am not sure where Jacob falls into that plan but hey. Angela really wants to come home too. For all the struggles with transitioning her into the house, it's great to see how much she misses us and considers us her family.

Keep the prayers coming! We feel surrounded by your love.

Love, Karla

Sunday, August 23, 2009 6:50 PM CDT

The internet isn't working in the rooms, so sorry I haven't been able to update until now. Jacob is doing really good. This is the fastest he has ever recovered from a surgery. We are still seeing poop from his belly button and his foley catheter is plugged a majority of the time, but other than that, things are going well. Jacob is able to have clear liquids, but so far all he has done is spit raspberries at anything that passes his lips. 3 small sips went down okay, and that is about it. It will come with time!

Our friends Tom and Deb came yesterday and brought Angela to visit. She has been at respite since last Sunday. She wants to come home so bad....it is wonderful that she refers to our house as home now :) We are going to try to have her here next weekend if we are still here. Jacob was in his glory that Tom was here. That boy sure loves his Tom. I feel a little jealous that Tom received a hug and I am still waiting for one. It's so neat to see him have relationships with people. Dr Nickels and her kids came to visit too. That was a lot of fun. Today my sister, brother-in-law, and kids were here, so we have been kept company. Michael also brought his girlfriend here last night and is bringing her home right now. It feels great to be surrounded by friends and family, including all of you who are praying for us and supporting us from afar!

Love, Karla

Friday, August 21, 2009 7:57 PM CDT

Jacob thought it would be fun to start leaking stool out of his belly button where his MACE is last night right after Dave and the boys went back to the Ronald McDonald House, so it was a mess needless to say. Of course it was at the time I was hoping to go to sleep myself, but didn't find sleepyland until 3 hours later. We tried to flush his MACE, but no poop came out of his butt, just his belly button!

Jacob let me sleep for 3-4 hours and then decided we need to be up for the day. It was one of those just as you are falling back to sleep, you'd get woken back up again kind of nights. Lab came in for blood at one time, along with Jacob getting some chest PT. Early this morning, the doctor came in and then we were off to x-ray to check his lungs. Luckily he is doing really good in not A.) collapsing his lungs and B.)getting pneumonia. He still does not want to cough. The respiratory therapist who has known him since he was born thought it was rather funny that he wouldn't cough because he knows it hurts. LOL

We were finally able to get some poop out tonight, but it was through his MACE catheter, not his butt again. Obviously his bowels are not awake yet and don't know the right direction of poop flowage.

Jacob has decided to spend some time watching Barney today and playing with his toys. All steps in the right direction. The music therapist also came by today and Jacob was in his glory. The sassiness is coming out too. There have been a lot of no head shakes.

We had some visitors today :) My nieces Kelly and Emily came along with my great-niece Evelyn. Oh my is she CUTE!!! We had a great time and I got some nice cuddle time in. I even got some awesome baby smiles out of her :)

Keep your prayers coming! They seem to be working!

Love, Karla

Thursday, August 20, 2009 2:23 PM CDT

Jacob decided to pull a trick this morning around 5:30 AM because the nurse was ready to leave her shift. Had to keep her on her toes you know! Sats were 20, a mini code was called with 10 people in the room. I was fast asleep at the Ronald McDonald House. I was glad Dave got to experience the joy of it all.

Since then, he has dropped a few times into the 50's but overall, his sats remain in the 90's. He is needing to cough, but you all know how much he loves that. Chest PT is happening courtesy of the nurse, but hopefully respiratory with come in starting tonight or tomorrow. We've had to stay on top of the pain meds with him and he seems to be handling it much better. I have seen eyeballs a few times, but it reminds me of the lights are on, but no one is home. He has found a lot of comfort in sleeping on his sides and has now found a new way to sleep mostly on his tummy. He got himself there somehow and so we left him.

Lights and noises bother him, so it is rather dark and quiet in here, which doesn't help much in keep me awake either! LOL Oh well, a little napping never hurts!

Keep coming back for updates.

Sarah Beecher, if you are reading this, please email me :)

Love Karla

Wednesday, August 19, 2009 5:41 PM CDT

Hello everyone! Jacob went into surgery at 10:39 this morning. They did a scope into his urethra to see what has been causing all the problems. It appeared straight and unremarkable until the bladder neck, and there they found a false passageway and some narrowing. At 11:45 the surgeon started the procedure. He reopened the abdomen at the same scar line he used last summer. He was able to cut a piece of bowel off of his bladder augmentation from last summer instead of needing to cut into the intestine. This hopefully will help minimize recovery time as a new piece of bowel did not need to be cut. He closed up his bladder again, and hopefully with time, his bladder will restretch to the size it was. The surgeon was able to pull this tube he created with the piece of bowel to the the surface and make a new stoma, or hole, to cath through. This hole is on the right side across and down from his belly button. The surgery was done around 3:30 and Jacob was in recovery around 3:45. He is back in his room, no trip to the PICU yet! WAHOO! He actually is breathing and not holding his breath too bad this time. I told him he was way too old at 7 to be pulling such tricks.

Our pastor was able to spend time with us this morning before and during surgery before he needed to leave. My mom and stepdad came and spent the whole day with us. Michael's girlfriend and her family came later in the afternoon and were here when Jacob came out of surgery. They took the boys to a movie so they could have some fun outside of the hospital.

Thanks for all the thoughts and prayers! They are all very appreciated!

Love, Karla

Monday, August 17, 2009 1:25 PM CDT

Hello from Room 3-157. Jacob was admitted this morning and so far, all he has is an IV. It went in the first try...go figure. We are in a room we've never been in before. In fact, this morning I was thinking it would be neat to be in this room. You can tell we have been here a few times. LOL Jacob will have IV fluids and antibiotics as well as GoLitely to clean out his bowels. It should be a fun filled next two days!

We have already been visited by our favorite chaplain. It's nice when you walk in and everyone says hi and how have you been? Jacob has already spent some quality time snuggling with Michael and I, as well as being his sassy self to the nurse. All questions involved a NO head shake.

Besides all the excitement of Jacob's surgery, we have been super busy with life....including Dave having major cellulitis in his leg. We spent two days over the weekend in the ER and hopefully the antibiotics will kick in soon.

I will keep everyone posted as things happen. I will post the phone number below. My cellphone doesn't get the best reception on this side of the building unless I hang my head out the window. LOL

Love, Karla

Saturday, August 8, 2009 11:38 PM CDT

Happy Birthday to my sweet boy. It's hard to even explain the joy you bring to me, simply by being you. Life could have been so different but then I wouldn't have learned all the lessons you were brought here to teach me and everyone else who has the joy of knowing you. You are God's perfect gift Jacob!

Today started with Happy Birthday to you, smiles and sassy head shakin' that he was NOT 7 years old, followed by some Fruit Loops, new favorite cereal, and opening of presents. Jacob got a lime green IPod, all set up by his bubba Michael with 179 songs so far! Jacob also got 2 new CD's- one praise and worship songs and the other with kid's songs on it, a new Barney movie, and a cool Sassy toy with fishies on it that you can push for cool sounds, songs, and music. He was thrilled :)

Jacob listened to his IPod, watched Barney, got his favorite chicken and broccoli for lunch, followed by shopping at Walmart for his party (he LOVES the sounds of the shopping carts and driving crazy in Walmart,) and snuggles on the couch with bubba Devin. When Michael and I were talking about getting some ice from McDonald's, (yes, they sell bags of ice) Jacob started whining for a cheeseburger. How the heck this kid understands so much is beyond me....it is so awesome. So all in all Jacob had an awesome day. When I laid him down for bed, he was sleeping within seconds, no lie.

Tomorrow will be the big party. He will be geared up for singing happy birthday and eating some eggless cake!

I promise pictures :)

Love, Karla

Friday, August 7, 2009 9:07 AM CDT

Good morning! Thanks for all the early happy birthday wishes! Jacob is getting so excited about his birthday. It's funny to see his reaction if you just mention the word. This morning, this girlfriend Jacklyn announced his birthday on the radio and he was SO embarrassed! He does his "OH MAN!" thing where he hits himself on the head. LOL

We aren't sure yet what we will do tomorrow for his big day. Probably find something he enjoys doing. Sunday, we will have a party for him. It's always fun getting together to celebrate birthdays.

Monday, we went to Mayo for appts. Jacob has been having so many marks and pressure sores on him lately from his splints and AFOs. We were supposed to get AFOs casted, but the other appts went over and we missed it. We will go back next Friday. Then, Monday he will be admitted for bowel prep. We need to get all our celebrating in before surgery!

This week has been full of appts. I am so glad to see Friday come! Monday was Mayo, Michael had his sleep study Monday night and all day Tuesday, Angela had 2 appts, Michael saw the eye doctor because his right eye has been watering and burning so bad and found out he needs reading glasses, Devin had the mole on his face removed, Michael also saw the dermatologist the same day, the boys and I had haircuts, plus meds to pick up, shopping to do, and lots of craziness! Sometimes I had to be in two places at once, but it all worked out.

I'll leave you with one of the most exciting things that happened since my last post!

If you didn't see the pictures from our California trip, make sure you check them out in the journal history!

Love, Karla

Thursday, July 23, 2009 7:15 PM CDT

I am here and alive! We had a fantastic, wonderful, awesome time in CA. We left early Sunday the 12th and got into CA before lunch.

We ate, checked into the hotel, and headed for the beach.

Monday, we went to Disneyland. The boys went with Dave to enjoy the roller coasters and all the other rides I wouldn't be caught dead on. Angela, Jacob and I went on Dumbo, walked around seeing characters, rode the Peter Pan ride, then headed for the hotel.

Tuesday, we went to Universal Studios Hollywood. AWESOME place. I absolutely LOVE Universal, so much more than Disneyland. We felt the same way when we went to Florida. This day was amazing. We spent an hour with characters seeing the kids, dancing with them, kissing on Jacob, taking pictures, and being silly. It was awesome.

Jacob was shy and not talkative at all to the characters, but bring Marilyn Monroe and her backup singers over and he was kissing and hugging them like crazy! LOL

We loved the Simpsons ride and all the Simpsons stuff there.

The haunted house was really neat too. Devin convinced me to go on a water ride and while I swear I saw the light from the other side, I survived. Devin said I need to face my fears. LOL

Wednesday, we headed back to Disney for California Adventures. The boys loved all the rides here. Angela, Jacob, and I once again saw a lot of characters and watched a couple shows.

We met the boys for lunch and headed to Soarin over CA. That was amazing. It was a simulation ride in which you felt you were on a hang glider flying over CA. We decided to get going since we wanted to see the beach again so we left mid afternoon.

What started out as a nice drive to the beach turned into 4 hours total, since we got turned around a little, but we were able to see Long Beach, Huntington Beach, and Laguna Beach. It's funny how something unexpected can turn out to be so much fun. We ended up laughing way too much and got absolutely goofy about the whole LONG ride, but the boys will say that was probably the best part of the trip!

Thursday, we went to Hollywood and saw the stars. Michael was really excited about going and took so many pictures!

Devin was freaked out by all the freaks dressed up outside the Kodak Theatre trying to get you to pay money for a picture with them. They were definitely nasty. After Hollywood, we went back to Universal to finish out the day. We loved it there again and had so much fun going on more rides and some over again.

Friday morning, we took Michael to the airport to fly home. Michael left Saturday morning with the church youth group who are now in New Orleans for the National ELCA Youth Gathering. He will come home on Monday night.

After dropping Michael off at the airport, we went back to the hotel to pack up and headed over to another hotel where the conference was. When we got there, we soon realized someone else was in our room. There was a mix up with the group making my arrangements and they didn't put me in a single room like I had requested. To make matters worse, when I got into the session I was to attend, I was told I had missed the morning training. I was never told about this training, yet I was supposed to know about it. I was extremely hurt to be questioned over and over about why I wasn't there, yet if someone does not know, how are they supposed to be there? It really ruined my day and I can't believe how mean spirited some people can be. Anyone who knows me, knows I would do anything to maintain and fulfill a commitment I made.

Saturday, was a full day of sessions at the conference. I was one of the speakers at a session, which was really awesome. I have wanted to do more speaking for a while now. After the sessions, we had supper and then were off to a movie. Disney is in the process of enhancing their movies with voice explanation of what is going on in the movie for those who are blind or visually impaired. Jacob wore headphones that explained what action was going on. He was very involved in listening to the movie and laughed so hard at different times, very appropriately.

Sunday, the conference continued until noon. We packed up, ate, and were on our way back to the airport. All of us were ready to go home. We arrived late Sunday night and have been feeling very sleepy all week. Hopefully we will catch up on our sleep soon!

I was so happy with how well everyone did on the trip. It was very challenging with 2 having special needs, but overall everyone was very accomodating and helpful (except Disneyland but that's a story for another time.) I realized how much harder it is to travel when you need to take just about everything you own with you, not to mention the lovely security at the airport. All of Jacob's liquid meds and saline had to be tested and needless to say, they weren't closed very well and my DS will never be the same again with benedryl in the screen.

Hope everyone is having a great week. Thanks for all the guestbook entries while we were gone. The countdown is on for Jacob's birthday. It's hard to believe he will be SEVEN!!!!

Love, Karla

Friday, July 10, 2009 8:23 PM CDT

Hello! We are counting down to when we leave on our trip! Things are pretty much coming together nicely and the boys (including my big boy) have all been very helpful. Mama told them about a year ago I was done packing for everyone and I was pleasantly surprised this time that they are done before I am! We are all so excited.

Jacob has not lost any teeth yet, though you can tell his mouth is preparing for big teeth because his jaw is growing, with spaces between his teeth. Imagine my surprise tonight to notice there was even more space on the bottom....and there is a TOOTH growing behind one of his baby teeth! I am so very sad that I couldn't see his bottom toothless :*( I am just going to have to wiggle harder every day to get them out.

How's this for cuteness?

Jacob was eating corn on the cob ALL BY HIMSELF :)

I am used to helping him bite it. Devin was quick to point out that Jacob needed his own corn and could do it himself. He was right. It was so cute :)

We have been watching a mama bird and her 3 babies the last couple days, just a foot outside our window! It has been the coolest thing since I have never seen a nest so close before! We were shocked to see how much they grew over night. The mama is so diligent about feeding the babies. The best part is seeing their mouths open wide!

Hope everyone had an awesome week!

Love, Karla

Saturday, July 4, 2009 12:38 PM CDT

Happy 4th of July! Here's Devin and his friend Kevin singing God Bless the USA! Hope you enjoy the pure talent of my boy!

We picked Michael and Devin up from Sugar Creek Bible Camp yesterday. They had such a wonderful time. It is neat to see/hear how their faith has grown in just a week.

Jacob's surgery is scheduled for August 19th. He will be admitted into the hospital on the 17th to start bowel prep.

Only 8 more days until we leave for CA! I am going to have to start packing soon so I know we have enough supplies for Jakey.

Jacob's aide Rachel sent me a bunch of pictures from school and field trips. Enjoy!

GOLFING!

Jakey and Miss Rachel. Do you think I should be worried? LOL! He's so full of LOVIN!

Hanging out at the park after golfing.

Look at the baby chick Asha is holding!

Here's Jakey bowling!

I LOVE SWIMMING!

Check this one out! Ms Jessica actually put this thing on him! YUCK!

And one more of Mr Cuteness :)

Yesterday, Devin and Jacob were on the couch eating chips. Check this out....

Notice Oliver, the cat. He loves chips too.

A little closer.....

Going in for chip!

OUCH! HE BIT ME!

I'M PUTTING THESE AWAY!

Hope everyone is having a wonderful 4th of July!

Love, Karla

Wednesday, July 1, 2009 10:56 PM CDT

After talking to the nurse today, we have scheduled Jacob's surgery for August 19th. He will be admitted a day or two before surgery for bowel prep. The surgery will use a piece of his bowel as a passageway to his bladder, and he will have a stoma on his stomach to cath through. Today has been a not so fun cathing day. It is next to impossible to get a catheter in. The chance of another Foley is looking pretty good right now, which if they place one, it would stay in until surgery. We can't risk not having a way to cath him with a bladder augmentation. His bladder could rupture and that would mean emergency surgery. He is somehow wetting though above and beyond his cathings, which shouldn't happen either, so I am not sure if his bladder is just really spasming right now. He is SOOO sore looking, so I really don't want to have a Foley again unless necessary.

It has been a whole year on Friday since he was discharged, so I think we are doing pretty awesome on the medical front. Important to keep it in context. And then you look at his smiling face and wonder why you worry.

Hope everyone is having a great week! Keep our friend Maya in your prayers as she has a major surgery tomorrow removing her colon.

Love, Karla

Tuesday, June 30, 2009 7:12 PM CDT

Today was a busy Mayo day. Jacob had skin testing which shows he is still allergic to peanuts and tree nuts...darn. The blood test was negative, so we were hoping the skin test would be too. We can try again in 18 months to 2 years.

We saw surgery about his Mic-Key button. We are going to try a lower profile button since having his TLSO (scoliosis brace) on all the time has really irritated his g-tube site. He also has major yeast on his site and his diaper area, so we got a prescription for that.

Urology took out the stinkin' foley. I really hated that thing. Of course today it decided to majorly plug up causing him to pee ALLLLLLL OVVVVVERRRR. And since brilliant mom here forgot to pack an extra pair of shorts (I had a diaper and a shirt-go figure) he was sporting a diaper and some hospital shorts until we got home. Now I can have the fun of trying to scrub down his wheelchair seat, which is very absorbent by the way.

Urology felt he had a false passageway into his bladder. I passed a catheter just fine before we left, but of course as soon as I got home, I couldn't get the catheter in. After quite a few tries, I finallly got it. We talked about doing a Monti procedure on Jacob where they'd use a piece of his intestines for a passageway and then have a stoma on his stomach to cath him through. With him getting heavier, having trouble finding places to cath him since he is too long for standard changing tables, etc, we are thinking pretty heavily about this. The problem is, there is a minimum 10 day stay. His 10 day stay last year turned into 3 weeks, so I am guessing it will be the same since his bowel was sluggish to start working then. We have to decide if we want to do it right after California and risk spending his birthday in the hospital, or wait until after his birthday and risk missing the first couple weeks of school. We could also wait until next summer, since summers are generally easier for all members of the family, but what if he has more issues cathing and then I wish I would have done it now. Plus, we just started fostering, so Dave would have to take over the getting her on and off the bus for work, cares, etc. I am sure it will all work out like it always does, just something to think about. I will call tomorrow to see what are some possible surgery dates.

My helper came with today. She was so funny telling everyone about her Jakey. It is really neat to see how people are so kind to her. Of course, we had to raid the sticker station and show them to everyone, after she told them all about Jakey of course!!! On the way home, she told me, "I had so much fun today!" :)

Michael and Devin are at Bible Camp this week. I am sure they are having a blast. Both of them have talked about going back ever since the ride home from camp last year! I am anxious to hear all their stories when they come home on Friday.

Hope everyone is having a great week. Please leave me a note to let me know you stopped by :)

Love, Karla

Sunday, June 28, 2009 9:05 PM CDT

Hello everyone! It has been busy here! I don't honestly know if we know what dull even feels like :)

Friday was the big move in day for our family care adult. She was very excited to move, then spent time Friday night and Saturday totally testing all her limits with us. Needless to say, I won. LOL It was fun setting up a girly room. It looks so very cute too I might add.

At church this morning, we had a blessing for this new venture. Dave, the boys, and I, her mom and dad, and Godparents, all laid our hands on her for a blessing. We had a really nice party at our house afterwards with church family and friends.

I don't know if I can ever even begin to understand why having Jacob in our lives has caused our family to be judged more than I have ever EVER experienced prior to his birth. Somehow, the things we do or the things we "get" become scrutinized. No matter how many different angles I have looked at this, it has been best for one of us to stay home to care for Jacob. Any kind of equipment, supplies, etc for a child with special needs is SO much more expensive than most people can imagine. We simply do not have the resources to do what we would love to be able to do on our own. We have had to rely on programs to get assistance with big ticket items. It is a very humbling experience to have to ask and be at the mercy of someone being able to help you. Their timetable is not comparable to your own. We have spent our own money when we've needed to. I can't help that the original van we had a lift put in, that was told to us by professionals would fit our family doesn't. After a few years, our kids grew! That's why we chose to buy our own van with a lift in it already. I can't help it that the lift started on fire. I wish I had the money to replace the lift on my own. It was a little hard to save anything when your husband was unemployed for a year. And yes, we were able to get a second lift covered by the county/state. SO WHAT. The fact my son can't sit, stand, or walk kind of requires him to be in a wheelchair in the vehicle. How I wish he could do all these things, but he can't. Somehow we need to be able to get him places. I will not just stay in the house because we don't have a way to get him around.

Then comes the fact that we are spending money on going to CA instead of paying for our lift. This is the second real vacation we have had since Dave and I got married in 1996. I was asked to speak at a conference, Dave and I got our expenses paid, and we wanted to take the kids with us. Sorry I feel like my kids deserve a little happiness every once in a while. It's not like they haven't experienced enough in their lives to get away every now and then. I think most people go on vacations but because we go instead of spending money on a lift is somehow selfish. The money we are paying to go to CA isn't nearly CLOSE to the price of the lift. So, I guess somehow we are punished for thinking we could go on vacation....shame on me.

I am sorry, but I get so sick of it. There is no one out there but US who can totally understand the ins and outs of what we go through. Nor can someone think just because Jacob is cute we get what we want. That is FAR from the truth. We have to prioritize and scrutinize his needs with the limited funding he receives. I hate that I can't just go out and get the things he needs. Fact is, I can't. I do the best I can with what I know. Jacob deserves the best quality of life. And yes, he IS cute.

Love, Karla

Tuesday, June 23, 2009 5:23 PM CDT

Hi everyone :)

It is HOT outside! I see a thunderstorm coming, which will hopefully cool things down. I don't do hot. Trust me. So yeah, California in July should be interesting!

Jacob's bladder continues to be a royal pain....well actually I think it is the foley catheter that is the royal pain. The only good thing about having it in is with all the busyness of the last week, we haven't had to stop to cath him. But then again, with all the syringing and flushing I've been doing to keep the urine flowing, I don't know if it is easier. Jacob returns to Mayo on Monday for some follow-up on a few issues.

We have been transitioning our foster adult into the house. It's going really well overall. She seems to really enjoy it here and has added a lot of humor to our house. We spent time over the weekend preparing the house for her things to be moved. I am not one who likes a lot of mess, so the house has been driving me nuts, but hopefully we will have it back in order soon. Friday is the big move.

Michael and Devin are loving the time off from school. I don't think they ever got dressed yesterday. Michael is getting excited for his mission trip to New Orleans right after our trip to CA. It will be a busy summer for him.

Our van is officially in the shop to have a new lift installed! We are all doing a happy dance!

Hope everyone had a wonderful Father's Day weekend.

Love, Karla

Tuesday, June 16, 2009 5:33 PM CDT

Hello everyone!

School is officially over for the year. Jacob decided to celebrate his first day off with a trip to Mayo. We've been having problems cathing him lately and so he has a foley now to help heal his tract. The resident thought Jacob might also have an overactive sphinter muscle, which might be causing the problem cathing. If so, he will have to be placed on another med.

Jacob had a nice last couple of days of school. The 1st graders went on the La Crosse Queen on a cruise down the Mississippi River. Here are some pictures of his friend Zachary lovin' on him!

Jacob started speech today. He is getting a new communication device, so he is trying one out now to see how it works for him. Because we don't want him to lose ground, Jacob will have speech twice a week.

We are getting excited for our CA trip next month! We have reserved our hotel and working on finding a van big enough for all of us. We will be in Costa Mesa, which is close to the ocean, LA, and Disneyland, so we will be able to do some fun things! Our adult family care member will be joining us.

Move in day will be at the end of the month. We are so excited for her to live with us! We have had a couple of visits, one overnight, and then this week and next will be more overnights to transition her to our house.

Seems like the craziness here never ends. We are always busy doing something and so the days slip by without me updating Jacob's site. Hope all is well with all of you!

Love, Karla

Tuesday, June 2, 2009 6:37 PM CDT

Good evening everyone!

While talking to a friend today, I realized how many emotions I have been going through lately. I have been so excited for Michael getting his driver's license. At the same time, it reminds me that he's growing up! Michael has always had a very unique personality, the kind you needed to stay on top of to guide him in the right direction. He was loud, intense, and active. Transitions were hard for him. He was the one who somehow always got caught doing something, even though others kids instigated it. Yet his personality was one that made him stick out, not out of "naughtiness" but of uniqueness. It has been wonderful to finally feel like all the hard work of guiding and molding him has paid off. He is turning into such a neat young man. Definitely a proud mama moment. And yes, Krystena....we think he looks like Keith Urban too! LOL

I redeemed myself with Devin by remembering to bring the cat to school last Friday. He was so excited I made it. Oliver was a hit. The kids loved him the most I think! This cat is so weird....here there are 3 other dogs around, one who went nose to nose with him, and he just laid there in heaven to have all the attention! LOL

Devin is counting the days to the end of school with some sadness. The teacher he has, who we had hoped would loop with him next year, is staying in 4th grade since the district is opening a new school next year. With the new school, comes a whole bunch of kids leaving, so needless to say, it will be sad for both Devin and Jacob.

Jacob has been doing so great. I just love it. He is constantly doing his fake snoring noise to get your attention. It cracks me up. AND he knows it. LOL

Yesterday, Jacob brought home a headband he had made with a brain on it and what each part of the brain does. For some reason this just totally got me....not that school knew it would and by all means I am glad he does projects with the kids. Somehow him wearing a perfectly formed brain just seemed way too ironic. I think what bothered me more was that it bothered me! It makes me wonder when will I ever be prepared for certain situations to provoke the feeling like I was just punched in the gut, letting all the wind out of me? If there is one thing about raising a child with special needs that stinks, is this reality.

Last Friday, Jacob went mini golfing. He ended up winning a free game out of the deal! Yeah Jacob! I saw some really cute pictures that his aide Rachel took, but somehow they haven't graced my inbox yet....HINT HINT!

We are really close to getting certified for adult care! We spent time over the weekend with the individual we are taking in. Everything went very well, and we are getting excited for her to move in soon.

At church on Sunday, Jacob started crying because we were singing too loud. I think he gets so excited, but doesn't know what to do with that emotion, but to cry. Michael took him over to the side to calm him down and before I could get up, Tom and Michelle joined him to help. It really warmed my heart to see this. During the sermon, Pastor Steve was talking about grace and said that grace is watching people go to Jacob to help comfort him when he was crying. That statement totally amazed me. We are in a church where people get it. They see the boy we see and the joy he brings us, not to mention the way God shines through Jacob's being. This knowledge of who he is is what I want others to understand and witness, and they get it. It's really cool.

We are making plans for our CA trip in July. We were going to stay with Dave's aunt and uncle, but now they called to say we couldn't stay there. We were hoping to cut the expense of a hotel, but oh well....the boys are getting excited to go and so am I :) I have never seen the ocean before, so that will be neat!

I hope you are having a wonderful week so far! Leave me a note to let me know you were here! It's always great to hear from you!

Love, Karla

Sunday, May 24, 2009 6:34 PM CDT

We have a new driver in the house!

LOL! Yes, Devin is learning how to drive the lawnmower, but here's the real news!

Michael passed his driver's test Friday on the first try! We are so excited for him. We went out to celebrate Friday night. Saturday, he asked if he could take the vehicle out by himself for a "spin." It was incredibly strange to watch my baby drive off on his own. I wasn't worried at all, but you should have seen Devin! "I wonder when he is coming back? Do you think he is safe? I hope he doesn't get into an accident! When is he coming back? He's not home yet. I hope he is driving safe!" And ON AND ON. It was quite amusing.

I won the Loser Mom award on Friday. I was supposed to bring the cat in for Devin to share and totally forgot about it with all the other things going on that day. I got a call from him very upset wondering where I was. Yeah....the Total Loser Mom award was definitely mine that day.

Every now and then I am reminded of just how amazing my son is. Jacob is doing so well right now, and I can't help but smile with all the progress he has made. I love that he is asking for hugs all the time now. You come near him and his arms go up and he says, "Uh Uh Uh!" He slips his left arm around your neck and pulls you in so close for a kiss. He loves talking back and forth with you. I just know all his jabber means something because it sounds so important. He's gotten so social lately, wanting to connect to those around him, it's just awesome. We've noticed how much he is letting his wants and needs known to us by whining when things don't quite go his way. He especially likes to do this to Mama. I love how he remembers songs and movies, even when he hasn't watched something for a very long time, he still has it memorized. I love how he thrives in the familiar and how he notices when things are different. It makes me realize that he isn't oblivious to the world around him, but really uses the cues he receives to feel comfortable. When we first started our new church, Jacob had a hard time adjusting to Pastor playing the guitar and the songs we sang because he had memorized the service at our old church. We'd have to hold him and reassure him he was fine. Now, he's in love with everything and everyone at our church and handles it wonderfully. On Wednesday, we started our campfire worship service, which really threw Jacob for a loop. He recognized Pastor and the music, but couldn't figure out why we were outside having church. It will probably take a few weeks of reassurance, and he'll be fine. I don't know if I will ever tire of these incredible joys of knowing just how much he is aware of what's going on and how he's a boy first, not a disability.

Today, we've been busy doing nothing! I love days like this. I don't often allow myself to just relax, so it's been nice. Dave has to work tomorrow, but the boys have the day off, so maybe we will have to find something to do.

Thought I'd share some pictures of me and the boys :)

Jacob is saying, "You have got to be kidding me! I am NOT having 100 pictures taken of me today Mom!"

And a little better one :)

Hope everyone is having a great weekend!

Love, Karla

Thursday, May 21, 2009 5:19 PM CDT

Hello everyone. It's been forever since I got on here to update. No motivation to write I guess!

Everyone is doing great. Devin turned 10 on the 28th of April and Michael turned 16 on May 15th. It's hard to believe they are that old already. We had some fun birthday plans for both of them. We went to X-Men Origins-Wolverine for Michael's birthday, and Jacob laughed the entire movie. He just loves all the noises. Oh...we can't forget the popcorn and pop either! He just cracks me up when he enjoys something so much!

We have some exciting news in our family. My niece Kelly (and Jacob's Godmother) had a beautiful baby girl on May 12th named Evelyn Marie. We can't wait to meet her!

School is winding down for the year. The boys have been on lots of field trips and still have more. Devin went to a farm last week and to the ER at a local hospital today. Jacob is going on the La Crosse Queen and the park soon. Dave has been busy going on field trips too....he is driving school bus now and has enjoyed taking the kids on trips.

Jacob had an ear infection a couple weeks ago, I think from the cold he had. Once the antibiotics were gone, the cold came back. He seems to be feeling a little better now. He gave Devin the cold...I tell ya, I have never seen a kid have so many colds as Devin. And when he gets one, it is so much worse than any I have seen. Poor Devin!

Our family is in the process of being certified for adult family care. If everything goes well, and it has so far, we will start caring for an adult with disabilities. It will give me a chance to work and earn some money while putting my skills to use. We are all excited about it. I will keep you updated as final plans are made.

Hope everyone is doing well. I'd love to hear from you!

Love, Karla

Monday, May 4, 2009 5:47 PM CDT

Hello everyone!

Jacob's IEP was last week. It went very well, it always does :) 2 1/2 hours long, but hey, there are a lot of therapists and lots to talk about! Jacob has made some nice gains this year, especially in communication. He is eating better with a spoon and having better trunk control as well. We are going to press forward with the communication device that is being ordered. Jacob will have extended school year through the summer a couple days a week to help with this. We can't risk losing any ground with him since he's come so far!

It was bittersweet talking about Jacob next year. He has had the same classroom teacher for 2 years now, who has been wonderful and accomodating for all of the special needs equipment and modifications Jacob needs. The district is building a new school for next year, so we aren't sure yet who the 2nd grade teacher will even be. I tried really hard to make it through the whole meeting without crying, but knowing we are moving into the time where the difference between Jacob and his peers is becoming more and more evident is hard. Kindergarten and 1st grade work allows for him to be a part of the classroom much more than as he gets older and the work changes. He will still take part in art, music, PE, LMC, etc and morning message, but as the kids do more desk work, it may be hard to incorporate him into the classroom. Hopefully the teacher will be as creative as his K/1 teacher has been. We also talked about Jacob going back to visit K/1 during playtime, which will be fun for him and keep his K/1 teacher from missing him too much!

My mom and stepdad came for the weekend. Saturday, Mom and the boys made donuts, bismarks, and long johns. YUM!
It was neat for the boys to make memories like that with Grandma :) Jacob had to spend time lovin' on Grandma too.

Grandma was feeding him his chocolate milk, Jacob grabbed her around the neck and pulled her in for a hug and kisses!

Jacob was not feeling very good on Sat. He woke up Sat night screaming and after quite some time, I finally calmed him down even to go back to sleep. Dave took him into the clinic right away Sunday morning. He has an ear infection. He's had a cold, so I am sure it was from that. He is on antibiotics and is already feeling better. He stayed home from school today to rest, but should be ready to go back tomorrow!

We had Michael and Devin's birthday party yesterday. We had such a great time with family and friends. The boys got lots of money and gift cards, so they were excited. LOL Jacob slept most of the day, but woke up for a snuggle and hello. We were worried that he seemed to be getting worse last night, but then he fell asleep, and woke up happy.

I have added some info at the top of the page about raising money for Jacob's wheelchair lift. I really hate to ask for help, but we just don't know how we are going to be able to get this fixed, since all the funding he gets for this type of thing is not able to help out. Please prayerfully consider this.

Hope everyone had an awesome weekend. Here is a video of Jacob saying his prayers at night. The first part is a little hard to hear, but the rest is too cute! Enjoy!

Love, Karla

Sunday, April 26, 2009 1:19 PM CDT

Hello everyone!

We have had a good week. Jacob is awesome as always. He is getting a little cold now, lots of sneezing and coughing, but is happy as ever.

I've got a couple cute stories to share about Jakey. After our visit with Dr Van Dijk, the brain guru from the Netherlands, we have been working on some concepts with Jacob to take him from lower level learning to higher level learning which involves his cortex. Dr Van Dijk explained that if you take some object, initially Jacob doesn't understand what it is just by name. He has to actually hold it, touch it, taste it, etc to learn to understand what it is. Eventually over time we hope that he will learn what something is just by name.

We have watched something progress over the last few months and it is so stinkin' cute! Like most kids, he loves McDonalds. Initially, we got his cheeseburger and until he actually ate it, there wasn't much meaning in going to McDonalds. It then progressed to smelling it, and then he'd whine and whine until he got his burger. When we were on our way down to Madison for the evaluation with Dr Van Dijk, we stopped at McDonalds. When he heard, "Welcome to McDonald's, can I take your order?" he got SO excited and started laughing. Now last weekend, he took another step in understanding....we stopped at McDonalds and I ordered Michael and Devin's food first. He sat there listening and when I ordered a cheeseburger, he KNEW that was for him and started laughing! It is just so cool to watch how much he is learning and growing mentally :)

Jacob loves when people snore. He thinks it is one of THE funniest things in the world. Jacob has now started fake snoring and waits for you to say something. It is so stinkin' cute because he KNOWS what he is doing! He brings so many smiles to my face! I will try to video tape it sometime so you can hear it too!

The boys are playing WWE wrestling and Jacob is hysterically laughing. He wanted to join in on the action, so he started whining. I laid him down on the floor on a blanket and now he is right in the middle of it. He's such a boy!

Here's a cute picture from a night Jacob was listening to his stories :) Doesn't he look cozy?

I added more pictures on the photo page too...FINALLY! :)

Love, Karla

Monday, April 20, 2009 10:12 PM CDT

Hello everyone! It has been a busy day, but I thought I'd get on here to let you all know how things went.

We picked up Jacob's new nighttime splints first, then headed to the clinic for spinal x-rays and blood. The blood draw took forever as always, and we found out there wasn't enough drawn for the allergy testing, so we will need to try again tomorrow. We are going to check the levels on his egg and nut allergies and if they are coming down, we will do a skin test. If he passes that, he MAY get to try eating eggs and nuts and see what if any reaction he has.

We saw Dr Driscoll in physical medicine and had SO much to share with her following his assessments in Madison and with Dr Van Dijk. Jacob also had to show off his step scanning and demonstrate how awesome he is at picking what he wants.

Orthopedic surgery came in and discussed the results of his spinal x-rays. The orthotic vest he wears does seem to help some. The degree of curvature of his scoliosis improved a few degrees with it on. His kyphosis improved 10 degrees, which was pretty good. The problem is Jacob is nearing the degree of curvature in which they recommend surgery, but since the minimum age this surgery is performed at is 10 years old, we have some time to burn in hopefully keeping him stable until then. We are going back to the thicker, stiffer orthotic vest, hopefully a little longer and more supportive. The next step would be the hard shell orthotic, which is something we don't want to use unless we have to.

We met with the neurologist today and I feel like I was able to speak my mind and be heard. When he came in, he immediately said that he wasn't sure if we had ever met before. Yeah right... We then talked about Jacob's skills and abilities, did some assessments, and then he asked if I had any questions.

I started by saying that we HAVE met him before and explained when he met us. I shared the advice he had given us when Jacob was so sick, that we should let him die because he wasn't worth it, it was going to be so hard on us, etc. I shared that Jacob is definitely worth it and how he has brought us so much joy simply by being himself. I did say that it has been the hardest thing I have ever experienced, but the hardships are nothing compared to the blessings he has given us. I talked about how good Jacob is doing and all the assessments he has had prove he has far surpassed his expectations. I spoke from my heart and told him how hurtful his words were.

He claims he has no recollection of the whole occurrence. He also said that he would not ever say someone was not worth it, that he just doesn't say those things. He did say that in his experience with parents in similar situations they often do not understand just what they are getting into and what kind of issues a child with certain disabilities are going to have. Many parents do not have the internal strength our family obviously has. I did agree that sometimes parents come from a different place than we were in, but to assume that all parents would not or could not care for a child with special needs is insulting and cruel. I honestly would have liked to hear the spectrum of what we were dealing with, than just the absolute worst. I said all parents I have met with children with special needs would do it all over again because our children give us so much more. They ARE worth it and to always remember life is not that dispensible. I handed him a letter I wrote to him and said he can read it later and keep it for his files. He really did not have much to say but he was listening and I feel better for saying it. I did not believe for a second that he did not remember us. It was obvious that he did.

We spent the night visiting with my friend Kate and her family. We appreciate her hospitality and a wonderful supper!

Tomorrow, Jacob will see the dermatologist and have new AFO's and orthotic made. We will hopefully get back home by early afternoon.

Take care everyone and thank you so mucb for all your thoughts. I felt your prayers and good thoughts carrying me through.

Love, Karla

Sunday, April 19, 2009 7:34 AM CDT

Good morning everyone! I thought I best get on here since it has been a week!

We had a wonderful Easter and this week has been crazy! I would really like to know how I had SO much to sell at our rummage sale. It was unreal. Hopefully now, we have sorted through a lot of the "stuff" and now I can reorganize the house again!

We are in Hastings this weekend celebrating my mom's 75th birthday! We had a great party for her with family and friends. Today, we are having a baby shower for my niece, Kelly. She is due May 10th and has the cutest BIG belly!

Tomorrow is our big day at Mayo. We start out with picking up splints, then onto x-rays, blood, orthopedic surgeon, physical medicine, social services, neurology, and allergy. We are going to be meeting with the neurologist that told us to let Jacob die, so PLEASE keep me in your prayers that I am able to convey my message to him in such a manner that I can bring some peace and closure to the situation. Our appt is at 3:00, so if you think about it tomorrow, I could use your thoughts and prayers at that time. I will try to get on here tomorrow night or Tuesday to update on how it went.

Jacob is currently laughing hysterically at Michael. You know brothers can be SOOO funny! THAT is the stuff I want the neurologist to know....The JOY he brings to us. I just love him SOOO much :)

I promise to add pictures soon. I have some to share and haven't taken the time to do so.

Love, Karla

Friday, April 10, 2009 1:26 PM CDT

What an amazing experience last night! We participated in a Passover/Seder meal, which is what Jesus shared with his disciples on the night he gave us the gift of Holy Communion. We followed an order of service that has been followed for thousands of years. The mother of the table lit the candle, another person brought around a water bowl to wash your hands, and the host poured wine for everyone. We said Bible verses together and after each one, had a traditional food which all symbolized something and had a ritual in how it was eaten, shared, etc. We had parsley which symbolized life, and we dipped it in salt water to symbol tears. We had matzah bread and dipped it in horseradish to symbol bitterness, and then we dipped it in a mixture of apples, nuts, and raisins for sweetness. We shared wine 4 times. We also had to pour off some wine for all the hardships and plagues the people went through. We had to set a spot for the prophet Elijah in case he came back. We also saved some matzah for the end of the meal. It was all really cool! We tasted lamb, which was very YUMMY! We also had chicken, mashed potatoes and green beans so we had enough to eat :) The whole experience was awesome and helped me understand so much more once again. Our pastor is an awesome TEACHER.

Dave just about blew a gasket when he saw the condition of the toy room and the rest of the basement, so the boys are spending the day cleaning! We are having a rummage sale next Friday, so we need to get stuff together. I have been pricing things as Jacob has outgrown them throughout the year, so at least some things are okay. I just need to finish gathering some more things throughout the house and mark them. It is a very odd thing watching your kids grow up. The toys and whatnot that was such an important part of their everyday lives slowly changes and pretty soon there isn't much they play with, just video games! And since Jacob will never play with the toys, I am having to say some sad goodbyes! LOL Actually I'll be relived!

Jacob has decided to be a little brat lately. When he gets undressed, I expect him to take his arms out of his sleeves. He gave me the evilest look the other day, refused to pull his arms out AND laughed at me while he had a death grip on his shirt with his teeth and fingers. This morning, he was honestly pulling the shirt just as hard as I was pulling and wouldn't take it off. I guess he needs to have some control, huh????

I was rolling Jacob to his side last night in his bed. I was so impressed with how much he was helping me roll and so I asked him if he was working really hard at school with Miss Janice ROLLING ROLLING ROLLING. He laughed and laughed and laughed. He has always loved his Miss Janice. It was the funniest thing....like I knew his secret :)

We took a quick trip to Rochester on Wed to get fitted for night splints. Jacob has finally grown enough that we can order the right kind of splints from the catalog! WAHOOO! When Jacob was in the hospital following surgeries, he was repositioned frequently and his FAVORITE position was on his side. We have had to have him lay on his back all these years because of splints, feeding, etc and so we decided we really needed to get new splints so he can snuggle comfortably at night. He sleeps SO hard and SO good when he is on his side, so I can't wait to have these splints. Of course they come in blue. Boring. Ross, the orthotist, is going to add green straps to them. LOL!

Hope everyone is preparing your hearts and minds for the wonder of the sacrifice Christ gave for YOU. May Good Friday remind you of the amazing love of our Savior.

Love, Karla

Monday, April 6, 2009 6:23 PM CDT

Life continues to go well around here. Last week, Jacob had a field trip to the bowling alley. I stopped by to see him, and he was not too happy to see me at first! At one point, I told him to take his turn and he wouldn't touch the ball. He got all sassy faced and said "No! No! No!" It was the first time he said no quite like that!

I went with Devin on a field trip to our state capital in Madison. We went to a museum first and then toured the capital. It is incredibly beautiful inside. It was a very nice trip and fun to experience it with Devin.

Michael's sister spent the weekend with us. She always enjoys being here. We went to Monsters vs. Aliens 3-D, which was really cute. Of course, the popcorn which looked so good made me sick afterwards, and I got all dizzy and sick from wearing the 3-D glasses for so long! LOL Oh well.

Sunday, the kids sang in church for Palm Sunday. I helped plan an Easter Eggstravaganza at church, so we spent most of the day Sunday there. The kids had a blast playing games and activities. It was great.

The kids have one more day of school for the week. Thursday, we are having a Seder Meal, a traditional Passover meal, at church, followed by Maundy Thursday service. Friday is the Good Friday service and of course Easter on Sunday! There is a group of us singing for Easter Sunday. It's so fun being involved in our new church.

I am hoping to find some motivation here soon to get things done around the house. I have been feeling so tired lately. ::::yawn::::: Jacob has been more tired than normal too.

Hope everyone had a wonderful weekend.

Love, Karla

Saturday, March 28, 2009 9:31 PM CDT

Tuesday night, I lead the parent meeting at the Head Start I subbed at. I shared my story and talked about parent advocacy. We had some awesome conversations, the parents and I. I left with some confirmations and new realizations....

I love Head Start. Always have, always will. It is in my heart, it is in me. I so strongly believe in it's mission.

Teaching is who I am. Always has been, always will. It is in my heart, it is in me. No matter if I am in a classroom, out in public, or at home, I am forever going to be a teacher.

Jacob has changed who I am. Because of him, I am a better mother and a teacher. Because of him, I have learned more than I could have ever learned on my own. Because of him, I can share what I know with others, giving them support and encouragement, and in return, I am given support and encouragement.

I prayed long ago that if I were blessed to be able to raise Jacob, I would give God the glory. All along our journey, I have been reminded time and time again that God is good. I have been given an insight into some of life's greatest blessings. And while I may not have been able to speak God's name as I would have liked to in a public school, I was still able to share God's blessings nonetheless. It was an incredible feeling of giving and receiving, a reminder of how far I have come on this journey and how far I still want to go. I feel that good things are coming for me....I just need to continue trusting in Him to show me the way.

Love, Karla

Monday, March 23, 2009 10:49 AM CDT

Happy Monday! I am happy to report our snow is gone! I have been watching one last pile of snow melt in our yard. Yeah, I know....really exciting! LOL The forecast shows rain and snow for the next 10 days. Nice....

Jacob is doing great. He is always happy, sassy, and fun. Dave and I think this is the best he has being doing in a very long time. No seizures, bladder and kidneys appear healthy, the MACE is working great. We are really in a good place with him right now.

We are still struggling with the whole lift thing. We have been denied funding because we already have a lift, so they won't pay for another one. I can understand. It's just complicated. We make choices sometimes that we are stuck with and well, it's just not an easy thing. I wish I could afford all the things he needs, but when most pieces of equipment or necessities cost thousands of dollars, it just isn't possible.

Jacob went to the Children's Museum with the special needs classes from all the schools in our district. It sounds like he had a good time. He is going bowling soon too, as well as swimming at a water park, his regular swimming at the hospital, and a play. He is going to be busy!

Devin is on a jump roping team at school called the Lime Green Grasshoppers. LOL He went over to one of the kid's house yesterday to practice. They will be having a competition soon. It cracks me up to hear all the plans they've cooked up. We even had to buy green shoelaces for the "team." They are having shirts made too!

Michael is counting the days until his 16th birthday! He has 2 behind the wheel sessions left. It's all really exciting. He's trying to cook up some plans too for his own wheels. Yeah..... I really cannot be this old.

I'm done subbing now. Last week, I was busy everyday catching up from the time I was working. Today, I am actually sitting down and enjoying the peace and quiet! LOL I am going back to Head Start tomorrow night to talk at their parent meeting. Pretty cool.

Hope everyone had a great weekend!

Love, Karla

Tuesday, March 17, 2009 8:16 PM CDT

Time for an update! This will probably be a very long one!

Friday, we headed back to Madison. Trista, Jacob's teacher, had spent the day in a conference with Dr Van Dijk, where they discussed each of the kids who were videotaped. Of course, in true form for our family, Jacob's DVD was the only one which didn't burn correctly, so they weren't able to discuss Jacob too much. Luckily the original DVD is okay, but it was kinda sad that Trista wasn't able to see his assessment. We met up with Trista in the lobby of the hotel. She helped us check in and get Jacob settled. We were able to have supper together and talk before she had to head home.

After supper, Dave and I spent time talking with Dr Van Dijk while the boys did a Home Dept project. It was so nice to discuss Jacob with someone who obviously has seen MANY kids over the years and who has expertise in kids similar to Jacob. He was absolutely impressed with all he can do given his diagnosis and was so encouraging to both of us on his potential.

After the boys took a swim in the pool, it was time for bed. Sleepy boy! Isn't he beautiful?!?!?

Saturday, was a day full of fun. Michael and Devin went with their age groups for activities. Both went to the capital and then to UW-Madison for karate lessons and swimming. Jacob went into the childcare next to our conference room. In the afternoon, he went to the Children's Museum. All of the kids had an awesome day. Michael and Devin made so many new friends and hung out with them the whole time we were there.

Dave and I spent the day in a session with Dr Van Dijk. He went over all the kids assessments with the parents this time. And of course, Jacob's DVD didn't work, so we tried to find it on the 1 1/2 hour long version, but didn't really get to watch it or talk about it like the other kids in the group....oh well. It was kind of disappointing, but at the same time, Dave and I had lots of time to talk to Dr Van Dijk individually, so we felt more than satisfied with that.

We had some awesome entertainment Saturday night. A drummer from Milwaukee named Jaymes Finlayson spent special time with the kids who are deafblind. Jacob absolutely loved it. He spent most of his time smiling and laughing!

Tom Pease, a children's musician, put on a concert, which was awesome. All the kids were singing, signing, and dancing. Jacob knows a lot of his songs, so he was laughing and having a great time.

At the end, we went to buy a couple CD's we didn't have and Tom Pease and Jaymes sang and jammed for Jacob in his own little mini concert. It was SO cute! And of course, I didn't take one stinkin' picture because I was enjoying it too much!

Sunday, we had one session. The kids went with their groups for activities. We packed up and headed over to the Children's Museum since Devin really wanted to go there. We found out there was going to be a St Patrick's Day parade going right by the capital, so decided to stay for some of that. We headed home with some very tired kids!

There is a conference in July I really want to go to. The Wisconsin DeafBlind and our national affiliate are willing to send Dave and I. You want to know why I want to go so bad????
Check this out!

WAHOO! The crazy thing is, I submitted my request to speak, but have never heard that I was actually speaking. I wonder when I was going to be notified? LOL

Today has proven to be quite interesting. This morning, the lift in the van decided to work on the way to school, but not when we actually got there. This is a normal occurrence with this lift. Since we don't have $5000 to get a new lift in the white van, we are stuck driving our small minivan with the sucky lift. It get worse. We received a call from the utilities company saying they had to shut off the water to Dave's mom's house because someone had called saying there was water coming out of the basement door AGAIN. We drove up there to find that at some point, there was about 3 feet of water in the basement. UGH! We had some things to load in the van to bring back home. As Dave went to shut the sliding door, the one where the lift sits, the whole window shattered. Yeah. I couldn't even say anything....I don't think there are words enough to say just how much I hate this lift and how it has ruined the once decent minivan we have. Yeah....so now we are sporting a beautiful cardboard window until tomorrow. And unless some serious money falls out of the sky, we are stuck paying for it. Nice.

Jacob had his music program tonight. He smiled the whole time. Does that surprise you?

He had a dancing part, which made him feel like pretty hot stuff!

It's so neat to see how much they include him and all the kids with special needs!

On the way home, this is what he had to say about the program. LOL!

Hope you are all having a great week!

Love, Karla

Thursday, March 12, 2009 10:11 PM CDT

Shortly after I posted the pictures of our cats, Oliver, the orange cat, decided to take a little venture outdoors. We were very confused as far as where he was. We didn't know he had gotten out. I guess it happened when the contractor was here laying the laminate floors. Anyway, about 36 hours later, our cat found his way back, full of mud. We were so excited to see him as it had been a tough time with him gone. The kids (and us too) love him so much!

Yesterday, we made a trip to Madison to have Jacob assessed by a leader in the deafblind community. Dr Van Dijk is from the Netherlands and is a speaker at the conference we are attending this weekend. Jacob was amazing as always :) Of course, he chose not to talk, but hey. So anyway, we learned something very interesting. When Jacob was very young, within the first 1-2 years of life, Jacob was able to develop a very important part of his brain. It involves the development of his mirror neurons. He was able to mirror emotions he was exposed to, with the little vision he has he could see our faces, and this helped develop his wonderful personality. Kids who do not, often turn inward and are autistic. Many kids with severe brain damage like Jacob's are not socially engaging like Jacob is. To know that all the love and happiness he feels he learned from us, that he is doing more than anyone could ever imagine he could do, is more than any words can ever describe. Absolutely amazing....

We are heading back to Madison tomorrow afternoon. It promises to be a wonderful weekend. The boys will have childcare provided with tons of fun activities planned. Jacob will go to the Children's Museum and swimming, and Michael and Devin are having a tour of the capital, karate lessons, and swimming at UW-Madison. We are going to have wonderful music Saturday night. Sunday, will be more activities for the kids and sessions for Dave and I to attend. We are very excited to go. PLUS, we get to see so many of our awesome friends!

Hope everyone is having a great week! Thanks for all the wonderful support and suggestions on how to deal with the visit to the neurologist. It means so much to know that others care! I have decided we will keep the appt. I think it is time....

Love, Karla

Tuesday, March 3, 2009 4:10 PM CST

Hello everyone! Another great week so far. It seems like we are having a nice string of good days. Jacob seems to be on top of his game for the most part. I guess he has been a little sleepy and quiet in the afternoons at school, but at home he is as loud as ever. In fact, it cracks me up just how much he has to talk. He somehow always has something to say, especially when the boys are talking. He also started this fakiest laugh ever....he literally says, "HA HA HA!" and then there is the hysterical, I-can't-stop-laughing laugh. It's awesome.

I found some pictures on the camera from a month ago that I had to share. Jacob was sitting with me when Cooper, our cat, had to come up and visit.

And as soon as Cooper got off Jacob's lap, Oliver had to have some attention!

We are having laminate floors placed in our living room. The contractor started today. Dave and the boys were busy yesterday taking out the carpet. Times like this, I am so glad I have all boys! LOL So far it looks very nice!

Jacob has Spina Bifida Clinic coming up in April. He will have a spinal x-ray to check his scoliosis, and then see the orthopedic surgeon, physical medicine doctor, allergist, nurse, and neurologist. The thing is, his regular neurologist isn't available...it's the neurologist that gave Jacob no hope of survival when he was so sick at 6 weeks old. The same doctor who told us rather bluntly after discovering the extent of his brain damage that it would be best if we let Jacob die.

Here is where I am trying to discern what to do. Part of me feels this may be the chance to have some closure to those dark days when I felt not everyone understood our commitment to Jacob and the love we have for who he IS and not for who he is not. The flip side is I may just come away from it stirring up some of those feelings I had at the time, feelings I really don't want to ever experience again. I could say I don't want to see him, which I have, but when I got another schedule today, he was still on it. Sooooo....this is where I ask you to pray for me. I am doing the same to come to peace with it. Thanks to a great friend, I have a better sense of peace already, but I still need a little help.

Hope everyone is having a great week. Thanks for all the guestbook entries. I love them and appreciate them so much!

Love, Karla

Wednesday, February 25, 2009 8:33 PM CST

Hello everyone! I know it has been a long time. I continue to be busy with work. I only work 20 hours a week, but it seem like I am not getting anything done. Only 2 more weeks...I have really enjoyed being back with the kids and really enjoy spending time with Janie, the teacher I used to be with before Jacob was born.

It has been a busy couple weeks for Jacob too! Last Tuesday, Dave and I took Jacob to Madison for his augmentative communication evaluation. There was an OT and a speech teacher we met with. I was hoping he'd perform for them and not play shy. I had told him before we went in that he needed to talk to the ladies and show them his switch too. As soon as they said hi, he started hitting his switch and talking to them LOL Both were very impressed with Jacob's abilities. Not only does he know how to use one switch, but he can use two! Most times, they recommend starting switch use, but he is way past that :) Jacob tried a couple different communication devices. We found one that is very appropriate for his skills and will give him MANY opportunities for successful conversations. Here is a peek at the one we are trying to get covered for him. SpringBoard Lite I am very excited for the possibilities. Both of the staff felt that Jacob has many words locked inside that he wants to get out.

On the way to his appt, we stopped at Build a Bear. There is an extremely cute frog that he just had to have. Jacob thought it was very fun to make his frog. Sometimes, I am unsure of how much he actually gets from experiences. Regardless, we do them anyway! That is the only way he will learn if we emerse him into everything. This time however, I could totally tell he was into it. He was smiling and laughing and just having a really good time making his frog. We gave him a number of choices for what to name him, and he shook his head yes to the name "Lucky."

Here he is putting stuffing in his frog

Making a wish on the heart! LOL

And the cute finished froggy!

Thursday, I spoke at Viterbo again to the elementary education students taking a special education class. It is always fun to share Jacob's story and give examples of ways to include children with special needs in the classroom. I also share with them what my job as a parent liaison for the school district entails.

We have been busy with church activities as always too. It has been so wonderful to have found this church. Ash Wednesday is today, so we had supper together first and then an intergenerational Kid Connection (basically Sunday School on Wednesday nights!) before having the regular Wednesday night service. It's hard to believe Lent is already here! I am definitely ready for spring and all the promises that Easter brings!

Hope everyone is having a great week. Leave a message in the guestbook so I know you stopped by!

Love, Karla

Sunday, February 15, 2009 7:15 PM CST

Where to begin!

Dave and I have faced some real challenges since Jacob's birth, but especially in the last 1 1/2 years with so many things happening at once. Jacob spent many days in the hospital for surgeries, UTIs, and weeks recovering. We have had to face some realities in the spina bifida world as he gets older, including surgeries, cathing, and bowel programs. We have spent many many hours working on Dave's mom's house and helping her with many of her cares as she gets older. We have also gone through the loss of Dave's job, and changing churches. We have found a deepening of our faith in our new church...not just Dave and I but the boys as well. It is amazing to see your children love the Lord and the church. Absolutely amazing.....

All the challenges and feelings that come with them basically came together for us a couple weeks ago when we decided to renew our vows. We wanted to recommit to each other, our kids, and have a blessing in our church. And so yesterday, on Valentine's Day, we renewed our commitment to each other. It was an absolutely beautiful, amazing experience, better than the first time actually!!! To look back and realize how far we have come together! We had a nice reception afterwards and visited with everyone. It was so relaxing and enjoyable. Simply amazing! I am so glad we decided to do it!

Jacob is doing so good right now. It is so awesome to see him so happy and social. This kid literally talked and talked to everyone and anyone that talked to him yesterday! I love it :) What I love so much is how everyone seems to embrace him. I didn't have to worry about him being taken care of. Everyone just helped out. It feels so good to know he is loved.

Work is going pretty good. I am used to the kids and what I need to do. I don't think those skills ever go away! LOL

Tuesday, we are heading to Madison for Jacob's augmentative communication evaluation. That should be interesting! I am looking forward to what we find out.

We need some serious prayers for our van. The lift motor completely fried and since his funding has paid for one lift for our smaller van, they won't pay the repairs or to have a new one put in. We are sick about it. We cannot fit as a family in the small van. The lift in that van works when it wants to. We just don't know quite what we are going to do yet.

Hope everyone had a wonderful Valentine's Day!

Love, Karla

Thursday, February 5, 2009 4:37 PM CST

Hello everyone! I know it has been forever since I wrote. Things are fine, just very busy. I am subbing at Head Start with the teacher I used to share a classroom with. I will be there until March 12th. It's been fun being back in the classroom, especially teaching with a friend again. I realize though how much more I enjoy being home and being Jacob's mama. It's interesting to see how much I've changed since having Jacob...the way I think, the way I see the kids, the things I find difficult or not. It's weird. Very weird. I am working 20 hours a week, with Fridays off, so I am still able to pick the kids up from school. I feel like I am missing out though with not being here when they wake up. About the time I am used to it, I'll be done!

Jacob's ring finger on his left hand has continued to get worse. He is on antibiotics now since the culture showed staph growing. It is looking much better now since he's had a few doses.

Jacob went bowling today at school. He had such a great time. He will go bowling on Saturday too for his friend Maysa's birthday party! He thinks bowling is SOOO funny!

I've been trying to mix up Jacob's night schedule a little so that he is getting to bed earlier. It seems to work okay. We aren't able to get any nursing care at night for the more complex, time consuming part of his cares, so we are trying to figure out what works best. Always so many things to think about!

Everything else is going just fine. I'll have more to share soon I am sure!

Love, Karla

Monday, January 26, 2009 9:22 PM CST

Hello everyone! I am really really REALLY ready for spring. This winter has been WAY too cold for me.

We've had quite the interesting last few days! Members of our church took part in a local conference this past week, and Pastor asked if I'd like to attend. It was really interesting and thought provoking. All that attended are very excited to put some of the ideas into practice. I came home from that only to turn around with Dave and head back to church for our group meeting, the same one we attended last week. Our respite provider was not able to help this week, so Michael watched the two boys. When we got back, I hopped into the shower and into my jammies, and Michael and I headed back to church for a Lock In! It was so much fun providing tons of activities, games, food and prizes to the kids! I was wondering if I'd be able to stay up all night given the fact I had had a busy day, but I made it. Michael and I basically slept all day Saturday!

Sunday, after church, the wheelchair lift on the white van decided to fall on my arm/shoulder and then fell all the way to the ground. It was then I smelled something burning. Yeah....the electric unit on the lift shorted out and boy did it stink. Thankfully, it didn't start the whole dang van on fire! Tom and Deb hadn't left yet, so Tom took Dave back to the house to get the red van which also has a lift. We went back into church since it was SO cold outside. We got the white van back to the house, Tom and Dave looked at it, and knew it would have to go into the shop. Tom and Deb stayed for supper, which was fun visiting with them!

Fast forward to this morning...I get Jacob into the red van for school and as I am going to stow the lift, it wouldn't move. So yeah, here the kids need to get to school and both van lifts suck. I called the school, had a bus sent out to get the kids, and Dave called the shop. They talked him through how to get the stupid lift back into the van so we could at least shut the door. Then he made plans to take the white van in to get fixed. UGH. Lucky for us, the repairs were minor and didn't cost much, so they were covered by Jacob's funds. All we could think about what the heck were we going to do if we needed a whole new lift?

I am really really REALLY ready for a break. I get so tired of constant headaches. It seems like there is a law of relativity that states to just pour it on us...once one thing starts going wrong, it just keeps coming.
::::sigh::::

This week, Devin has some activities planned with a friend, dentist appts for Michael and I, Wed night church, swimming for Jakey, and a field trip for Devin. I might be going in for some training this week too, but I will save that info for another post :)

Love, Karla

Monday, January 19, 2009 7:04 PM CST

Hello everyone! We've been busy like always. Last week, the kids had two days off of school because of windchills in the -20 to -50* range. Nothing like good old midwest weather! DANG, talk about COLD!!!

Dave and I had some respite time Friday night! We spent the night with a group at church, which was super fun. Michael took care of Devin at home and from the sound of it, they both enjoyed the respite worker too! She happens to work with our neighbor two houses down who we've never met, so the neighbor came over and helped. Once Jacob was in bed, they all played Wii. We will definitely have her back since it went really well. She is willing to learn Jacob's cares, so that is really nice.

Pastor and I were talking about Jacob's participation in church activities and his understanding about what goes on. He made an excellent point, which validates we are in the right place. It really isn't necessary to know how much he does or does not understand. The important thing is not what he gets from it, but what Jacob gives others. What gifts is he offering others simply by being there? And that goes for all of us as well. Are we there only for what we can get out of it or is our presence blessing someone else?

Yesterday, we went to our friend Angela's birthday. Angela has special needs too. She is so stinkin' funny. Here's the birthday girl with her sparkly crown.

And Jakey and Angela posing!

Her dad Tom is Jacob's buddy! Listen to their conversation!

Jacob has had some issues with his MACE. He has some granulation tissue which has been irritated and some stool leakage. It seems that he might be blocked up a little. Don't know how anyone could possibly poop anymore than he does, butt.....ha ha....we will have to see what happens tonight.

Hope everyone had a wonderful weekend!

Love, Karla

Tuesday, January 13, 2009 2:30 PM CST

Happy It's Below Zero Day! I do believe I heard something like -28* overnight last night. It is darn near balmy at -3* now. It is so cold that your nostril hairs freeze. Just the visual all of you wanted I am sure! LOL

We had a great time seeing family at my stepdad's birthday party. Devin was in his glory chasing cousin Lauren around.

Isn't Lauren too cute?!?!?

I don't think Lauren or Jacob really wanted to look at the camera! LOL

I don't know if it is because Jacob had such good appts last week. Maybe it's because we had some things confirmed that I've been wanting confirmed for a while. Maybe it's because there are so many people involved in Jacob's care at the clinic, home, and school, people who know and love him in a variety of places. Maybe it is because I feel so welcomed and accepted at church where people are concerned about how his appts went and wondered where we were on Sunday. Whatever it is, I have been feeling so full of joy, happiness, love, and peace about Jacob. I can hardly look at him without just wanting to eat him up. He is so darn cute. AND he knows it! He is stubborn, sassy, opinionated, and demanding. He is funny, loveable, and gives the best hugs and kisses. He is loud and talkative and expressive. He understands so much of what is going on around him, when you are talking about him, and knows just how to reel people into his charm. It amazes me how a child who does not speak many words, except the important ones, is unable to walk, or do many other things in the same way kids his age do can still have the basic traits down. The things that make his personality shine. His aide said today that his sassy attitude shows his strength. I couldn't agree more!

There is a sentiment I've had surrounding Jacob that I haven't really been able to put into words. Other people have felt it too and are amazed by it. He can have tests, procedures, appts and yet, instead of crying or freaking out, he just takes it all in, cooperates, and does what needs to be done. He can go here and there with me and the rest of the family, and just enjoy himself wherever he is at. That is not always how it is with special needs kids.

Jacob and I visited our friend Kate when we were in Rochester. We have known her since the day Jacob was born. Jacob had such a great time at her house. Kate wrote me this email after our visit....I don't think she'll mind if I share it with you! It totally puts into words what the sentiment I have felt is about....thanks Kate for putting things into focus for me!

I think I figured out part of what makes your boy so fun to be around. He is the most pleasant kid ever! Here he is, in a strange house, with 3 kids and a dog. They were running all around him, making noise, and dropping toys on him (that was Max's HIGHEST form of compliment, by the way). What does your sweet boy do? He rolls with it, enjoys the chaos, and listens to a story. You can just tell he's happy with who he is. You can also tell he lives with two brothers� and a dog. Well, let's face it. In less than 6 1/2 years you have managed to teach your son what most of us don't learn in a lifetime- to like ourselves just for being us. And they said you wouldn't be able to teach him anything... Ha! Of course, maybe Jakey is gifted in this area. Shall we say he has precocious self-esteem skills?

Can you see why I love this boy so much?

Love, Karla

Friday, January 9, 2009 7:24 PM CST

Hello everyone! It has been a very busy week full of appts. Monday and Tuesday we were at Mayo. Jacob saw physical medicine, OT, dietician, and neurology on Monday. There weren't many changes in his care. Everyone was very pleased with how he is doing.

Tuesday, Jacob had Botox in his right arm under sedation. We also saw the dermatologist about his finger nails. He lost the 4th and 5th nail on his right hand this summer and then it went to the left hand, same fingers. He has lost 2 nails on that hand already. His pinky seems to be doing better, but the ring finger is still very sore. He has some medicine to put on his nail. There is either yeast or bacteria that has gotten under his cuticle. Jacob had a hearing test before heading home. He did really well. From what we can tell, his hearing appears normal, but he has an auditory processing disorder.

Wednesday, Jacob was able to go to school, which of course made him very happy!

Yesterday, we headed to Madison VERY early in the morning for an 8 o'clock eye appt. Thankfully, the clinic was very easy to find. Jacob had a Visually Evoked Potential (VEP) test to check what vision he has. We were pleasantly surprised that he is seeing better than we thought he was. By no means is he tracking and he is considered legally blind, BUT he is not completely blind. In fact, they feel Jacob is able to see faces well. While he didn't really care about the objects being dangled in front of him, he sure was sassy to the doctors when he saw them. Yeah, he was purposely shaking his head no just to see what kind of response he'd get. He is always the social one!

The boys came with yesterday since it is hard to find someone to help get Devin to and from school. And since Devin came with, Michael had to too. They are always such good kids when they come with to appts. The trip to IHop afterwards for lunch was definitely well received!

When we got home, Devin and Jacob went to a birthday party and Michael had behind the wheel. My bed was looking mighty good last night!

Today was back to school. Hopefully we won't need to go to any more appts until February when Jacob has his augmentative communication screening. I was just thinking that Jan 11th of last year Jacob had his detethering surgery. A whole year already! He is doing so well now.

Hope everyone has a wonderful weekend. We are planning on going to my stepdad's birthday party on Sunday. It will be nice seeing family since we didn't see anyone over the holidays.

Love, Karla

Saturday, January 3, 2009 12:11 PM CST

I am finally getting back on here. I had the second part of my sleep study. The nurse the second night was not even remotely as gentle as the first one. She was scraping on my scalp so hard to place the leads that I told her I was going to start seeing brain matter soon.

I started the night by wearing a mask, but by the middle of the night I felt like I was suffocating. I suppose it didn't help that the nurse had woke me up by pulling down the strap on my chest. Like I said, she was just a little rough. I tried another mask and slept okay, not the greatest but okay. The nurse took off the leads and a couple chunks of skin with it. I had redness and itching all over my face, chin, and chest. Nice. The doctor came in to tell me that it took a few adjustments before I stopped having apnea spells. I also had many episodes of REM sleep the 1st night and would wake up right in the middle of REM instead of waking gradually. I had a more consistent REM cycle with the C- PAP on.

I stayed long enough to get training on the machine and settled for a mask that is only on my nose. I absolutely hate it. I seem to sleep okay, but wake up with congestion and my sinuses screaming. I have the humidifier on the machine which seemed to help more last night, but I don't know if feeling like I do all day is much better than I felt before.

We had the best New Years. We went out to lunch with Dave's best friend Todd and his girlfriend Laurie, then over to Todd's for a movie. We went home to get Jacob ready for the night and then headed to church. We had a service first, then a party with lots of food and wonderful conversation. We brought our Wii and Pastor hooked it up to the projector. Everyone had such a great time. We rang in the New Year every hour for different parts of the world. The boys had so much fun and are still talking about it. Jacob stayed up the whole night and didn't go to sleep until we got home after midnight. New Years Day I went to Holly's to exchange gifts and visit for hours!

We are planning on taking down the tree this weekend. Usually it is down on New Years, but for some reason this whole Christmas season has seemed to be in slow motion. I think others felt the same because I am still getting Christmas cards! LOL

Monday, Jacob and I are taking off for Rochester. He will see neurology, physical medicine, and the dietician. We plan on staying overnight since he has Botox on Tuesday. Thursday, we have an early morning appt in Madison, so we will stay over Wednesday night so we don't have to get up so early. Jacob has never been to Madison for appts, so it will be interesting! The opthamologist at Mayo retired, so I researched a little and found a neuro-opthamologist. Not that Jacob's eyesight can necessarily be "fixed" since he has brain damage to his cortex, but it is important to make sure that the vision he does have is watched closely. I also got a call from Madison regarding the augmentative communication screening we want to have done. He will go in February for that appt. We did make it two months without seeing a doctor, so that is pretty amazing!

Hope everyone has a wonderful weekend!

Love, Karla

Tuesday, December 30, 2008 4:06 PM CST

I got a call last night to go in early for my sleep study. I had gotten a call the night of my birthday too, but chose not to go that night. Anyway, I headed into the hospital and got settled. I watched some TV, read a book, and then did some trials on the c-pap machine. I got all hooked up to the monitors. The nice thing is because of staying in the hospital with Jacob so much and seeing his sleep study, it really wasn't a big deal at all. In fact, it felt like kind of a nice spa day! LOL

I slept pretty much like I do at home. It took me a little longer to get to sleep, but when I did fall asleep, I was dreaming like crazy. I had a baby girl last night! The nurse and the doctor came in this morning and congratulated me! HEE HEE

I have to go back for part 2 of the sleep study tonight. They need to monitor me a little more and work on having me wear the cpap tonight. From what the doctor said this morning, I have periods of sleep apnea and many areas of REM sleep. REM is when you dream, so that explains my complicated, dramatic dreams.

Michael wanted to spend some time with me today. He decided he wanted to go to the store and return a gift. Devin wanted to come with, but when he heard Michael was driving, he was too scared and said he'd wait until Michael has his license. So much faith in his brother's driving! LOL Michael ended up driving in an area with a lot more traffic than he is used to and besides me one yelling "BRAKES!" just once, he did very good! It's a little nerve wracking and a whole lot of weird to drive with your kid, especially your oldest!

Part of the sermon on Sunday was about finding true happiness. So often we think and perhaps say things like "if I just had x amount of money," or "if I just had a better relationship," or "if I just had the perfect job." We strive to make things bigger, better, buy this or that, and yet if we don't have a relationship with God as THE most important part of who we are, how can we expect true happiness?

It reminds me of how after Jacob was born and then was so sick, people would say to me "Boy, you look good!" It would make me wonder how I was SUPPOSED to look. It reminds me of how many times acquaintances have said to me, "I don't know how you can do it!" or feel sorry for all we have been through. It makes me realize that despite all the heartache and struggles, we ARE happy people. We are able to enjoy what we have despite hard times because of our relationship with God. I encourage all of you to think about your own true happiness as you enter the new year.

Love, Karla

Monday, December 29, 2008 4:45 PM CST

Hello everyone! Thank you to everyone who sent me birthday wishes! I had a very nice birthday. We went to church and then had lunch at an Italian restaurant. The boys got me my very own snuggle blankey just like Jacob's but mama size. It is a green microplush blanket that is SO soft and snuggly.

It's been such a nice, quiet, lazy week/weekend. The boys are enjoying their presents so much. We've had time to watch lots of movies they received for Christmas. We have even gotten a chance to sleep in a little!

Jacob's urine has been super thick and yucky. I am trying to flush it out and hopefully clear the infection that I am sure is brewing. Unless he becomes febrile, the urologist doesn't want to treat it. The other weird thing is Jacob has been waking up in the early morning with an extremely full bladder, much earlier than he is ever cathed. He has about twice the amount of normal urine during the night too. Not sure what to think of that, except Jacob usually has an increase in output when a UTI is brewing. If we can make it to the end of the month, it will have been 2 whole months that Jacob has avoided the doctor. That has never happened in his entire life I don't think!

Not much else new around here. It's been nice having a relaxing holiday week!

Love, Karla

Friday, December 26, 2008 6:56 PM CST

Hello everyone! I hope your Christmas was blessed. We had a wonderful Christmas at home. Devin and Michael were feeling better. Devin still isn't eating much, but the good thing is it didn't go beyond the two of them.

I could tell the boys were feeling better when all they wanted to do was open presents. For some reason, they still don't understand that no matter how many sob stories they tell me, they can't open up gifts until after church on Christmas Eve. I told them they should feel lucky that we open both Christmas Eve and Christmas morning. Some parents make their kids wait until the morning to open everything! LOL

We had supper and then headed to church for the candlelight service. I felt so touched by the whole service. Our pastor does such a great job making each worship unique and meaningful.

The boys knew that right after church, we had to have pictures first. They know Mom won't let them take off their dress clothes before pictures! Look at my handsome boys!

Here's silly Jacob :)

And the whole family on self timer! Pretty good huh???? LOL

The boys got so many nice gifts and were so appreciative of everything they got.

Jacob lovin' on his frogs!

Jacob had to make sure he tasted good!

There's a V-Tech Old MacDonald toy that Jacob played with many times at Walmart. He got it for Christmas and was SOOO excited! He played with it forever and would laugh and laugh over and over at it. For some reason, I don't have a picture of him playing it, but I will try to get one. It was so cute seeing him enjoy something so much!

Here is Jacob enjoying his Christmas dinner!

And feeding himself Cheerios this morning!

Thanks to everyone for all the Christmas wishes! It was great to hear from so many of you!

Love, Karla

Tuesday, December 23, 2008 12:02 AM CST

Hello everyone! The snow continues to fall, and fall, and fall. We had pretty bad roads all weekend and into Monday.

Saturday, we had quite the busy day! Michael went with his dad to their family Christmas. Dave and the boys went to church to practice for the program. After they were done, we went home, cathed Jacob, repacked his bag, and went to the Bethlehem Event in La Crosse. Even though we ended up waiting for 2 1/2 hours to get in, it was definitely worth it. It felt like you literally stepped back in time.

It was such an amazing experience. I still think about it many times a day.

We headed back to the church for supper and The Nativity movie. I have watched this a few times now, and every time it makes me think about so much. I can't imagine how Mary must have felt being chosen for such an amazing gift. As a mother myself, I think about how lucky I feel to have been chosen to be the mother to my 3 boys, but to be Mary....it totally blows me away. It must have been so hard to explain to people, especially her parents and Joseph, just how she became pregnant. I mean, who wouldn't be doubtful?!?!? And then the strength of Joseph to take on such a huge endeavor, not only because of the fact that women were often stoned for such things, but to have so much faith in God to believe and do His will. I love the part in the movie where Mary and Joseph are talking about when will they know Jesus is the Savior, will it be a look in his eye, something he says, will they be able to teach him like other sons, or will he already know? The older I get and the more my faith grows, I am more and more at awe.

Sunday morning, we headed to church for the Christmas program. Dave was the narrator, Michael was Joseph, Devin was a wiseman (the WISEST man according to Devin) and Jacob was a shining star :)

The program was SO good! It was a play called The Wonder. The kids all memorized their lines and did such a nice job. The best part is that Michelle, Jacob's previous OT at school, helped Jacob do the actions for the songs and held him on her lap. It was so heartwarming to see Jacob be a part of the whole thing, just like the other kids, and for Dave and I to actually be able to sit and watch the program. This church has given us such a wonderful gift....acceptance.

Devin also celebrated his 1st Communion on Sunday. We had hoped to have some company for the weekend, but due to the snow, no one was able to come. Devin was so sad. He had a great time making bread with Deb from church and painting his communion chalace. Everyone told him how good his bread tasted!

There is a man named Tom at church who just loves Jacob. Jacob will not talk to men in general, but Tom can get him going! Jacob has been reaching over and hugging him too. You can see he still has his hand on Tom's arm. LOL

Last night, Devin started throwing up ALL NIGHT LONG. This morning, Michael woke up and got sick. I contemplated what to do with Jacob....keep him home and expose him or send him to school and hope he doesn't get sick and spread it around. He has been feeling just fine, so I sent him in hopes that we can avoid him getting sick.

Today is the last day of school until January 5th. Jacob will have Spina Bifida Clinic that day and botox on the 6th. I am praying that things go well with it. He will have his right hand/arm/wrist done since he can bend his hand down all the way and doesn't have too much flexibility any other direction.

We are all so excited for a wonderful Christmas together. Please send prayers our way for an end to the boys' puking and that no one else gets it.

I'd love it if you could leave a hello in the guestbook to let me know you stopped by, especially those of you I haven't heard from in a long time!

Love, Karla

Thursday, December 18, 2008 10:25 PM CST

Hello everyone from snowy Wisconsin! We are expecting up to 8 inches overnight and into tomorrow. I don't mind the snow when I am warm and snuggly in the house. It will definitely be a white Christmas!

We are getting ready for a busy weekend at church. Saturday, the kids and Dave will practice for the Christmas program on Sunday. We will then head to the Bethlehem Event at a church in La Crosse. Every 4 years, this church basically replicates the town of Bethlehem with people in costumes and live animals. The men have grown out their beards and everything. We have never been there, so we are excited to see it. Saturday afternoon, we will go caroling, then head back for supper and The Nativity movie at church. Sunday, we are celebrating Devin's 1st Communion. He has received communion already, but thought it would be a special weekend to celebrate with all the Christmas festivities. My mom and stepdad were planning on coming, but since the snow is coming, they don't think they will make it. I was hoping they'd be able to make it since we have so much planned that I wanted to do with them.

Jacob has started a new program where he is supposed to count the bears. It didn't take him long to figure out which was the WRONG answer. And why would he pick the wrong answer you wonder??? Well, it has the best sound effects! It says, OOPS! in a very funny voice. Of course, this brings much laughter and so it became a game. The funny part about it is that when the aides were telling me about it, he got all goofy shy like, "Aren't I funny?!?!?" He just absolutely cracks me up. I don't think I will ever stopped being amazed by him.

Trista gave Jacob a CD with stories on it a while ago. He loves listening to it, but hadn't heard it for a couple weeks. Well wouldn't you know that when I put it in for him the other night, he got SO excited and laughed so hard at the funny parts just before they happened in anticipation. It amazes me how much he memorizes things....songs, movies, stories. And to think they said he'd be a vegetable. He is a mighty cute stalk of broccoli isn't he? :)

Jacob's other favorite thing is to tell me when he gets home that he wants a snack. I purposely ask him if he wants to go ni-night, to which I get a lovely whine. When I ask if he wants a snack, he smiles the cheesiest smile ever. He sure knows what he wants!

Hope everyone is having a great week!

Love, Karla

Sunday, December 14, 2008 7:26 PM CST

Hello everyone! It's been a fun gingerbread house kinda day!

For those who knew Grandma Charlotte, you will appreciate Michael's tongue :)

And the finished product!!!

Gotta have some Jakey cuteness too! Devin was dying to eat some of it right away, so we all had to try some. :)

Hope everyone had a great weekend! Leave me a note so I know you stopped by! If you didn't see the video of Jacob in the last post, hit journal history. It's too cute to miss :)

Love, Karla

Friday, December 12, 2008 10:14 PM CST

Here is this week's Tales from the Potty!

I found this on clearance last year after Christmas. Sarah, Jacob's wonderful adaptive tech, modified it so Jacob can turn it on and off with a switch. I listened to this for an hour tonight before I told Jacob he was ALL DONE. Unfortunately for me, there is no volume control, but Jacob loves it nonetheless so I will sacrifice my sanity for him. I think I will have dreams about this song tonight. :)

Love Karla

Thursday, December 11, 2008 3:06 PM CST

Hello everyone! It is already Thursday! The week has gone by fast. It's been a very snowy week. Tuesday, the kids had a snow day, which is a very rare occurrence around here. The kids were very excited and spent the day catching up on tv, playing video games, and just having a lot of fun. :)

Jacob has been writing using the computer. His adaptive tech teacher put a variety of words together, he scans through them, and when he wants one, he picks it. We've had fun seeing what he comes up with. Michael and Devin are very popular topics. Dad even made the list many times. I was beginning to feel a little slighted, but yesterday, I FINALLY made the list! It's awfully cute to read what he's written. You can tell he pays a lot of attention to words and conversations.

All of us are getting very excited for Christmas to get here. In the meantime, we are keeping busy with our activities. Tonight, we are going to watch Devin's music program. Tomorrow night, Jacob and Devin's school is having a movie night. I am not sure if we will go to that or watch our own movie at home. Next weekend, we have lots planned with church. The kids are having their Christmas program at church and Devin will also be celebrating his first communion by baking the bread for Communion that day. I just love the days leading up to Christmas :)

Hope everyone is having a great week. I added some pictures to the photo page!

Love, Karla

Sunday, December 7, 2008 9:04 PM CST

I swear there is a law attached to all equipment and supplies that are involved in Jacob's care. It involves working perfectly when you are watching it or when you aren't in a hurry. but walk away or need to get somewhere at a certain time, all heck breaks loose! LOL The lock we use for Jacob's wheelchair in the van decided it didn't want to work, so we've been spending way too much time trying to get him in the van every time we are going somewhere. Oh and the MACE catheter decided to come out of his belly button as soon as I walked out the bathroom and pour 20 oz of water all over Jacob's lap. Here I thought I was being smart and doing his MACE early, getting some housework done whle he was pooping, and what do you know, his whole lap was wet.

We've had a fun week. Friday, we went bowling as a family. Jacob thought it was SO much fun! He even got a strike! We've also spent a lot of time at church lately, practicing for the Christmas program, having a youth event, decorating, and even helping organize. The boys have had so much fun at church too. It's neat to see them enjoy it so much.

Today, Jacob went to another birthday party :) Here he is enjoying Chuck E Cheese!

And here he is with the birthday boy Declan!

We have had quite a bit of snow this week. It's definitely going to be a white Christmas!

Hope everyone had a great weekend.

Love, Karla

Tuesday, December 2, 2008 4:21 PM CST

Hello everyone! We have been busy decorating for Christmas! I had bought quite a few decorations on clearance last year and at rummage sales this summer, so it was fun taking them out and seeing what I had. We are planning on decorating the tree tonight.

Last night we made our advent calendar. There is a bible story for each day and an item that represents something. Last night's was a quarter representing 25 days until Christmas. The bible story was of the widow who gave money even though she was in poverty and how Jesus said she gave more than those who were rich. It was a nice lesson for my boys to learn.

Tonight, we will talk about the present God gave us at Christmas and then write down how each of us are a gift to each other.

Jacob has been so funny lately (well actually he always is!) When he woke up from his nap on Sunday, we were eating popcorn. This is how it ended:

He was so stinkin' cute eating all that popcorn!

Later that night, I was going to put him on the potty for his MACE and he started crying because he had the idea he was going to have a snack instead. And this is what happened:

You can see the tears on his eyelashes!

Here he is all proud of himself for getting his way! I guess there isn't anything wrong with eating Goldfish while you're poopin'! LOL

Hope everyone is having a great week!

Love, Karla

Saturday, November 29, 2008 4:39 PM CST

Sunday Update: Look what we woke up to this morning! I think the snow on the trees is so beautiful.

Hello everyone! I survived Black Friday and came away with many good deals! After a couple more gifts were picked up today, I am officially DONE with Christmas shopping! Michael and Devin came out with me too. It was so cute....I gave them each their own money to buy a present for each other, Jacob, Mom and Dad. They did such a good job finding stuff. Michael still has to find something for Jacob, but otherwise they are done. Michael even bought a present for his dad with his money and has money left. Devin had to use $2 of his allowance to pay for the rest, but he did awesome too. It was a great way for them to feel proud of themselves and get some presents that everyone will love. The cute thing was Michael and Devin both bought 2 things for each other without the other one even knowing. It goes to show you just how special they think the other one is, even though they might not always say it.

Michael has been driving with Dave or I every day. He is getting really good at it. Today, he went on one of the main highways and was able to drive the speed limit without being scared or any other problems. He will start his first behind the wheel lesson on the 4th.

When we were out driving the other night, we noticed how many people had already put up their lights. It was really cool to see how some people have decorated. It reminded me of how much I love this time of year!

Tomorrow is church. We will help decorate if there is anything left to do. Next week, our church is offering babysitting as a fundraiser for the kids going to New Orleans next summer for the National Youth Gathering. I planned the babysitting event, so hopefully everything goes well! I will see tomorrow how many people signed up to volunteer or donate supplies for crafts, games, etc. It should be a fun time!

Jacob has had a really great holiday weekend. He has been in such a silly, talkative mood the last few weeks. I can also tell he has matured again, especially in his thinking and cognition. We play different games all throughout the day with him in his daily routine. His favorite lately is helping get his arms in and out of his shirt/jammies. After they are out, I have to "smell" his armpits and then blow raspberries on them. He laughs SO hard! The funny thing is which his spasticity, you'd think, he'd hold his arms even tighter after he knows what you are going to do. Instead, he relaxes and wants you to blow on them! LOL He brings smiles to my face so many times a day :)

Hope everyone is having a great weekend!

Love, Karla

Thursday, November 27, 2008 8:45 PM CST

Happy Thanksgiving to everyone!

Even though our family has been through a lot this year, probably the most since Jacob's birth, we have a lot to be thankful for this year.

Dave and I are thankful for the time we have been able to spend together while he has been unemployed. We are often busy with kids and work, so it has been nice to spend some time together during the day while the kids are at school.

I am thankful that even though it has been tough the past months with him being out of work, God has provided for us in so many ways. We are able to have food on our table, a roof over our head, and wonderful friends and family who have gone out of their way to help us.

I am thankful that Jacob survived 2 majors surgeries this year. And while he had to make a detour to the PICU both times due to his stubborness of not wanting to breathe, things were handled in such a way that both stays were relatively short.

I am thankful that despite these life changing surgeries, Jacob has continued to grow and thrive, probably more this past year than he has in quite some time. He is understanding more, "talking" more, finding humor in so many things, and is so incredibly social, it amazes me.

I am thankful that Michael has turned into such a loving and caring young man this past year. I can't believe how much difference one year brings. He is now taller than his mama ( he still calls me this by the way) and is learning how to drive! What a tender moment it was yesterday as he asked me to take him for his first trip around the block. And an even better moment when I came away from it alive! LOL Just kidding...he really did a wonderful job!

I am thankful that Devin is so much like me...well some of you might not find that a blessing LOL.....he still enjoys snuggling with his mama even though he is 9 and he is such a fun kid to have around. He has always been the easiest of my kids in that he never has really gotten into trouble, listens the first time, very tenderhearted when it comes to people, especially kids, and animals. He is my shopping buddy and all around great kid.

I am so thankful that God has continued to bless me with all Jacob's life entails. We have extremely wonderful doctors and nurses, home health aides, delivery people, pharmacists, not to mention his amazing staff at school. I just can't thank anyone enough for what they do. It warms my heart when other people "get it." They understand my love for Jacob and all the dreams and wishes I have for him. They go above and beyond in all their interactions with him. It's not easy letting someone else be in control when your child is not able to tell you what happened today. I know with certainty that Jacob is loved and cared for, more than I could have ever thought possible.

Most of all, I am thankful to God for all the mercy he continues to grant us. I cannot help but be amazed at all we have gone through, and yet we are thriving. I cannot help but be amazed at all the goodness God has shown us, sometimes through strangers, some we may never even know, through our family and friends and so many others. It's definitely a time to give thanks.

Love, Karla

Tuesday, November 25, 2008 7:03 PM CST

Hello everyone! If you missed the cute pictures I posted last time, you will have to go to the journal history and see them.

The kids are off of school now until Monday. I think they are glad to have a few days off. I don't know how happy they will be tomorrow when they have to clean up the toy room downstairs. Or their bedroom. Did you hear someone screaming the other night? That was probably me when I tripped over Devin's Ben 10 guys. Yeah....it's definitely time to clean.

I also need to figure out what supplies I have in the art room downstairs for the art projects we will be doing in December. Last night I sat down and figured out what we will be doing every day from Dec 1-Dec 25. I started doing this a few years ago and it has been so much fun. We do art projects, watch Christmas movies, and do other fun activities related to Christmas. I want the boys to know what Christmas is really about. And since no one believes in Santa anymore in this house, which is a good thing since I don't want the emphasis on that, we can really enjoy the meaning of Christmas. I will try to post on here what we have done every day and may just add some pictures too :)

We had the contractors come back here today to fix the shower surround. It only took them a few months to get here :::::sigh:::: but it is done. Then this afternoon, we had someone come over to get a bid for laminate floors in the living room. The carpet is getting dirty from Jacob's wheelchair, so it makes sense to do this floor too. I often wonder what the heck the neighbors think when they see so many vehicles in our driveway. Most days we have at least 1-2 people here at different times, sometimes more. Hopefully we won't ever have a police visit thinking we are running some drug ring or something! LOL!!!! Oh the joys of having a special needs child!

Friday morning, the boys want to go shopping with me. Devin has come the last 2 years and Michael came last year. The rules are: 1.) No complaining 2.) No complaining
and 3.) No complaining. If they break any of these 3 rules, they will be sitting in the van. They also know that they best not break any of these rules because their life would not be so much fun if they messed with mama on Black Friday! LOL It's amazing how well behaved they are! They both have plans on buying some gifts for each other and for me, so hopefully we will have a good strategy for hiding presents.

Saturday, we are hoping to help decorate at church for Christmas. We are enjoying our new church so much. It's hard to believe we didn't join earlier. This has been such an amazing new start for us. I love how everyone cares so much for each other. Michael and I had a meeting on Sunday, so one of the ladies took Jacob over to take part in an activity he really enjoys. That meant so much to me. It might seem like a small gesture, but sometimes the smallest gestures are the biggest ones. It's funny to see how much Jacob talks to everyone. That never happened at our old church. I think he is feeling very comfortable there too.

Hope everyone is having a great week! Drop me a note to let me know you stopped by!

Love, Karla

Sunday, November 23, 2008 9:49 PM CST

I thought I better get on here since it's been a week since I last wrote. Things are about the same. Busy as usual and not enough hours in the day to do them.

Jacob had a very good week. It seems like the daily antibiotic is helping keep the bacteria down in his bladder. This past week, Jacob had a very full bladder, and when I told him I was going to cath him, he started laughing. He was like, "RELIEF!" LOL! I thought it was so funny that he was excited to empty his bladder.

Devin and Jacob had a dance program for PE on Friday. It was really cute. Devin's class did 2 songs with ribbons. Jacob did a rock and roll song and another with actions. I love how the adaptive PE teacher makes sure the kids are included. Not only are they out there with their aide helping them do the motions, but the songs they do are fun for them and not too hard to participate in. I just love it. As Jacob and I were walking through the hall at the end of the day, a dad we did not know stopped us and told Jacob what a fantastic job he did. I think it opens parents minds to how much children like Jacob can be included in. It's so awesome.

We finished Dave's mom's house this week. We have a few things to take out of the garage and a couple things from the house, but it is otherwise cleaned out and empty. It has been a L-O-N-G process.

Jacob's floor was finished this week. Isn't it beautiful?!?!?

To think that floor was hidden under carpet. The other two bedrooms have hardwood floors too.

As you can see, I found my camera!!! Here are some pictures of the boys on Halloween!

I think Michael has hung out at Mayo Clinic too much! It's rubbing off on him!

Devin as Dead Little Red. He has one sick mind. LOL

And the Cutest Lil' Devil you ever saw!

And a picture of a cute boy in froggy pajamas!

The boys only have 2 days of school this week. I look forward to a couple days of sleeping in! Not on Friday though....gotta get up and SHOP!

Hope everyone had a great weekend!

Love, Karla

Saturday, November 15, 2008 8:15 PM CST

Hello everyone! I hope you are all having a great weekend. Jacob's teacher Trista and I went to a deafblind conference Thursday and Friday. The speaker was PHENOMENAL. We learned so much that would apply to Jacob and the other kids in his class. It also validated that we are doing the right things when it comes to Jacob and also gave us some ideas on how to fine tune what we are already doing with his calendar/schedule.

On Thursday morning, I got a call that Jacob wasn't feeling so hot at school. We had just been learning about how deafblind child perceive relationships with people, and wouldn't you know it, Jacob was having a hard time with Mama and Trista being gone. After I talked to him on the phone, he started laughing and seemed to feel much better. It just shows us how much he depends on us.

I was making cinnamon rolls for Michael and Devin this morning. Jacob had already eaten cereal, so I went to take him out of his highchair and get him dressed. He started hysterically crying as soon as I took the tray off. I asked him if he wanted a cinnamon roll and he stopped crying. He ate the whole stinkin' thing. LOL

Michael took his permit test today and PASSED! He will go to the DMV on Monday and get his actual permit, but he was able to take it today at the driving school. Michael wanted to go to McDonald's to "celebrate" and so we went through the drive thru on the way home. When I said, "Hamburger Kid's Meal, no pickle, and a chocolate milk," you should have heard the devious laugh from the back of the van! You know, it gets me everytime he shows me just how much he understands. He watches and listens and GETS IT. It's just so cool.

Jacob's floor in his room was buffed and the first coat of finish was put on. It looks so nice. Right now, Jacob's whole bedroom is in the dining room and our room. For those who have seen his room knows that is a lot of stuff to put elsewhere!

Thanks for the best wishes on my sleep study. I wore a pulse oximeter overnight last week, that is how they know something is wrong.

Love, Karla

Wednesday, November 12, 2008 2:23 PM CST

Hello everyone!

The week has going by so fast already! Monday, I headed to Rochester for a celebration party for the seating clinic. When Jacob's wheelchair came in and was so outrageously the wrong size, I had called the supervisor of the physical medicine dept to inform him that it was not okay for this to have happened. From there, a meeting was scheduled for parent input. After that, I was asked to take part in a task force which looked at ways to fix the problems. Monday was the final meeting and a celebration for how far we have come. While the situation with Jacob's wheelchair was so stressful, it makes me feel good being Jacob's advocate and seeing real change based on my persistence.

I have been feeling so sick the last few months. I have been to the doctor a few times, ran some tests, and it was determined that everything looks great except it appears I have sleep apnea. I have a consult appt in Dec and then will have a formal sleep study. I am glad we were finally able to find out what is wrong. Now if I can survive feeling yuck between now and then.

Jacob has been adjusting to his new aide. I think overall it is going well. His teacher Trista and I are going to a conference tomorrow and Friday together. It should be fun. Dave will be on Jakey duty.

We are getting the hardwood floor refinished in Jacob's room starting today. I am excited to see how it will look. It is getting so hard rolling his chair and shower chair on the carpet. I am thinking we will eventually redo the living room too. The only thing I am concerned about with his room is whether it will be too cold this winter. His room is always either too hot or too cold.

I still have not found my camera. My house is not messy, so I can't figure out where the heck it could have gone. :::sigh:::

It has been raining, sleeting, freezing, here lately. No fun. I really hate winter. I love where we live and all, but if we could just skip winter, life would be so much better. LOL

Hope everyone is having a great week!

Love, Karla

Friday, November 7, 2008 11:16 PM CST

Good evening! I thought I'd get on here quick with an update. We started Jacob on an antibiotic after he started to run a low grade fever and wasn't looking or acting quite himself. After this antibiotic is done, he will get a low dose daily of another antibiotic as a preventative. He was on this antibiotic prior to surgery, but came off afterwards. With having 4 UTI's since June, we all agreed this would be a good decision.

Today has been a sad day. Chris, Jacob's special ed teacher, is moving to New York. She has been such a loving addition to our "family." It was hard to make the choice on whether to send him to Kindergarten last year, but as soon as we met her, we knew we were making the right choice. Chris made the transition so much easier and has been such a wonderful support for us, especially with all the surgeries and needs Jacob has had this past year. We are excited though that Ms. Trista will be taking her place! This means Jacob will have a new aide spending most of his day with him.

We are also a step closer to getting nursing. Right now we have aides coming into the house, but if all goes well, we should be having either an LPN or RN coming morning and evening to help with cares.

We had conferences last night for Jacob and Devin. Both kids are doing great. It was nice to hear from Devin's teacher that he is doing well overall. He has a few things to work on, but he is aware of them and will be providing the help and experiences for Devin to become successful. I really like the way their school embraces each child individually.

Jacob's 1st grade teacher was so thoughtful...instead of giving us the standard report card, which is meaningless to us since he isn't able to do those things, she came up with her own goals for him to accomplish in the classroom. His IEP covers many of these as well, but the report card she made really pertained to Jacob in the classroom and how he interacts with those around him. It was so cool to see someone totally get it and to know that is what I needed, before I even had to say it.

Nothing too exciting going on this weekend. We will probably take down all the Halloween decorations and get the yard ready for winter. It snowed today. Even though it melted as soon as it hit the ground, I know pretty soon it won't just be white lumpy rain anymore.

Love, Karla

Sunday, November 2, 2008 4:48 PM CDT

Our family has been going through a lot the last couple months, which I have been hesitant to share here. Not only is Dave continuing to look for the right job, but we have also changed churches. There are reasons for this, which I will try to explain. I find it hard sometimes to totally put what I feel in my heart into words, because so much of what we experience as a family with a special needs child is more of a feeling or emotion than words could possibly express.

I have always been a very spiritual person. I think I get a lot of this from my mom, not to mention life experiences I have encountered which have molded me into a person of faith. I honestly think that a person who not only survives hardship, but thrives afterwards is someone who definitely has a deep faith and spiritual side. How can you not? I know for a fact that I could not have gotten through the death of a parent, divorce, infertility, and the host of what Jacob's life has been if I did not have God by my side. It is He who brings me strength in my weakest moments.

And so with this commitment comes the desire for Dave and I to raise our children to also be spiritual people. This commitment does not change because of Jacob's inability to understand things in the same context as Michael and Devin. We do not know with certainty what he does or does not understand, nor is it my desire or prerogative to do so. I believe God speaks to Jacob in ways many of us may never understand.

When Jacob was baptized, we made a commitment to place in his hands the Bible, teach him the 10 Commandments, the Lord's Prayer, and the creed. We promised to bring him to church and raise him in the faith. These promises we made as his parents, godparents, aunts, uncles, cousins, and grandparents. I do not remember anywhere in those promises that these things only applied if he had a fully functioning brain. For once again, that is not my right or place to judge what he may or may not understand. We simply need to believe that Jacob too will be touched by the Holy Spirit as all of us are. If I believed any less than that, he truly would not be who he is today. When Jacob was so incredibly sick at 6 weeks old, the day we were told that Jacob had basically 0 chance of living, Dave and I prayed for God's will to be done. And if we were given the chance to raise him as our child, we would do everything we could to give the glory back to Him. And so you see, this is a promise I cannot go back on....and once again it is more of an emotion I feel than something I can put into words.

3 years ago, as we were preparing Jacob to start Sunday School, I prepared those in our church for this. I thought that things could and would be fine. Jacob is a smiley, happy child. He loves singing and attention from other kids. He was thriving in school and so I really didn't see a problem. Of course, there were the stairs to consider. At the time Jacob was light enough to carry him up and down.

We were disappointed in a few things that happened and for the sake of what is right, I will not share those here. Suffice to say, these things were shared with the appropriate people and a meeting was called for the start of his second year of Sunday School. I was excited thinking that maybe things would be different. After all, I was able to share my feelings on him, maybe even ease some of the worry of the unknown. Things started out fine, and not long after, went back to the way it had been.

Now, I am not one to give up when it comes to Jacob. Call me what you may, but I am not ungrateful, rude, or self absorbed. Yes, it may seem like I say the same things over and over for Jacob, but after a while, I think any who truly knows him or wants to know him, will realize he is a little boy, a cute, curly haired, silly, and a lot of sassy, little BOY. Not a disability, but a boy first and foremost. Now yes, some may get sick of my perseverence on certain issues when they truly do not want to do something, but hey, if I don't advocate for him, who will??? And honestly, if I thought it was too much for someone to handle, I'd be the first one as his mother and protector to say so. Just ask his teachers.....I turned down the offer to take him with on the corn maze field trip simply because A.} I hate that field trip and B.} I sure as heck wouldn't want to be pushing him through mud in his wheelchair, nor would I expect anyone else to do it.

So asking him to take part in Sunday School was really not a big deal. Besides, the chance that something medical would happen in the 45 minutes he is there, given the fact that Dave and I stay in the church the whole time Sunday School is going on, is much slimmer than the need to discipline some bratty kids who in my opinion, is a whole lot worse than having Jacob around.

As this year came, we were once again thinking about Sunday School and what to do about his participation. He is getting heavier and the thought of carrying him up and down steps was too much. Yet, if that was what he needed, it would be okay. After not hearing anything and the start of the school year a week away, I emailed the appropriate people. What I didn't expect was the answer I received. And once again, I do not care to write out here what was said as it hurt me so deeply, I don't care to type it. I know that it may not have been the intention to be hurtful, but I was reminded of the fact that some people just don't get it and they never will. Imagine Dave and my pain knowing Jacob was not and will not ever be who we may have envisioned him to be. Imagine our pain in knowing that no matter where Jacob goes or what we do, there is always going to be issues surrounding it that we have to work through. We cannot just send him to school without preparation, we cannot just send him to Sunday School without preparation, we cannot just hire a babysitter or have me go to work and send him to daycare without preparation. And even with that preparation, things go wrong or need fine tuning, worries arise, feelings are hurt. And yet one thing remains constant in my mind and I feel like shouting it to all of those who just don't get it......Jacob is the person God intended him to be. He is a little boy, with brothers who love him more than anything in the world, who do not see him as a burden. He is a little boy with parents who see him as a tremendous blessing, who is special just as he is. I am proud to be his na na. Is it any wonder why this boy evokes such strong feelings in me that no words could ever describe????

And so our family made the hard decision to make a change. This whole ordeal has really taken a toll on me. When you love a church family who has been there through the good and bad, it's hard to leave. However, we knew that the heartache we were feeling over Jacob's acceptance into Sunday School and the alternatives we were given were just not okay with who we are. Our spiritually was hurting and aching and that was not okay. Nor was it okay to feel held back when our hearts were leading us in different directions.

We feel very happy with our decision. Change is a very powerful and wonderful thing. We have found our spirituality reenergized. A part of us is still sad though for not being understood in the complexities we needed to be. I was told that "I hope you find what you are looking for," yet I honestly don't feel I was looking for anything more than any other parent does. Obviously, others didn't want to see the same thing....It's like a giant elephant in the room that no one can see but me.

I hope that time will ease my mind and my heart. I am a person who feels deeply and cares deeply and well, I guess that is why I hurt. Yet, I know that the gift we have received by making this change is so worth it. The boys love the new church, Jacob is very accepted and an active part in the church, and Dave and I are feeling blessed. I ask that you keep us in your thoughts and prayers as we continue in this transition.

Now on to some Jacob news. Wed. I came to pick up Jacob from school, and the nurse was having a hard time emptying him completely. You can literally feel the fullness of his bladder now after surgery. Kinda like a balloon actually. So I tried to cath some more out, flush with saline, cath, flush, cath, and so on. Well, what I put IN should come OUT. It wasn't. I called the urology nurse who once again said the same thing to me.....I tell ya, the tape recording of our normal conversation could have come in really handy. I guess I am not to worry about anything. By this time, my head was aching and I was ready to scream. It probably didn't help any that Devin is standing in the background saying he doesn't want to spend his 4 day weekend in Rochester. Yeah, one phrase that will set any mama off. As if this had anything to do with him. LOL I brought urine in Thursday morning for a culture, and he is growing E Coli in his urine. After a long discussion with the urology resident today, we have decided to try to flush the bacteria out. Because of his bladder augmentation, he will always have bacteria. Our goal is to keep the bacteria from colonizing. Using antibiotics too frequently can cause resistence, so for now, we are loading him with fluids, cathing more often, and if tomorrow brings not a whole lot of change, we will have to reconsider an antibiotic. It's going to be a game we continue to play, but with any luck, we can stay on top of things.

We have a mystery to solve....it's called, "Where the heck did my camera go?!?!?!" I took pictures of the boys on Halloween, and now I can't find my camera. Hopefully it will reappear soon so you can relish in the cuteness.

Hope everyone made it this far! I do get a little winded every now and then! I am going to be a little selfish here and ask that you please sign the guestbook or email me your thoughts on what I wrote....I'd love to hear them. They may just help me make sense of things.

Love, Karla

Monday, October 27, 2008 1:48 PM CDT

We had a great weekend. The youth from our church held a Halloween carnival on Sat. to raise money for a national youth gathering they are going to this summer. The kids had such a great time. Jacob was hysterically laughing at the bowling game. He loved the sound of the pins falling down. Michael ran the cake walk. It was really neat seeing his creativity coming out in making the game and having so much fun with the other kids that day. Devin had a blast too since he lives for Halloween. A great day for sure. I forgot to bring my camera of course.

Sunday morning, we headed to my sister's house for Lauren's 2nd birthday. It's hard to believe she could possibly be TWO already. She is so stinkin cute with her blond hair which just bounces back and forth as she walks. Well, actually, she mostly runs and skips all the time since she has places to go! LOL We loved hearing her little voice talk and talk. It was so cute!

It was so blessed windy yesterday and even SNOWED. There were a few places on the way home which had some snow that stuck, but it basically melted as soon as it hit the ground. It is another windy, cold day today. A definite reminder that winter is on it's way....YUCK.

Another busy week is ahead of us. Hope everyone had a wonderful weekend! Thanks for all the messages in the guestbook! I love hearing from you!

Love, Karla

Tuesday, October 21, 2008 12:57 PM CDT

Good afternoon!

We had a good weekend overall. Church on Sunday, lunch with Grandma, and playing some games together. The boys, Dave and I were laughing so hysterically hard, we all couldn't breathe. It was so fun to see the boys enjoy themselves so much.

Jacob has a schedule system at school. Trista has made representations for the different things he does/places he goes during the day. Each of these pieces are put on a switch, and when he hits it, it tells him what or where he is going next. Jacob has decided the last 2 days of school that he doesn't want to do it. In fact, yesterday he looked up at Trista with an attitude written all over his face! She waited 8 minutes until he finally did what he was supposed to. He'd try to be cute and talk to her and every other excuse not to hit his switch. What a stinker. It's funny how we are now having to decide which battles to pick with him. And the thing is, he is perfectly capable of hitting this switch since he has done it many, MANY times in the past. He just didn't want to! LOL

Michael is on his final week of driver's ed. He will be able to take his permit test after Nov 15th and then he'll sign up for behind the wheel. It will be in winter, but then again, maybe that is a good time to learn with an instructor with his own controls right next to him!

We are getting closer to having nursing care for Jacob. It should be just a couple more weeks and things should be set up. We are still trying to figure out respite. The one lady who said she could do it has cancelled the two times we asked her to come over. It looks like the funding we had for respite this year will have gone unused....it's really getting old.

Our niece Lauren is turning 2 on Friday, so we will be going to her party this weekend. Devin is so excited, he is counting down the days. He has such a special bond with her. He tells me that he wishes he had a little sister to watch grow up, just like Michael got to watch him. I think he realizes what he missed with Jacob, which makes me a little sad. Yet I know he loves Jacob beyond anything in the world. Hopefully some day Jacob will learn how to talk and he can experience at least some of the fun a little one brings.

We are waiting for info regarding an appt for an adaptive technology assessment. We would be able to see a variety of technology that they feel appropriate for his abilities. He already has different things he uses at school, but I would really like to see if we are on the right track or if there is something that may work better. We will be heading to the Waismann Center in Madison for this instead of Gillette since we live in WI.

Leave me a note to let me know you stopped by!

Love, Karla

Saturday, October 18, 2008 4:41 PM CDT

Hello everyone! Another week has gone by. Jacob's UTI seems to have gone away. There is a slight odor every now and then, so once the antibiotic is done, we will have to see if the smell comes back. The bug he had can become resistent to antibiotics, so I am hoping that doesn't happen, since he has had it 3 times now since surgery.

School is going great as always. Jacob is so much more comfortable this year since he has the same teacher and kids in his class. He is getting more verbal and laughs so much at school. It's awesome.

Jacob went to a birthday party for his friend Gavin today.
It was at Chuck E Cheese. He was so excited to go and is now sleeping after such a busy day. The noise bugged him a little, but not as much as it used to. A little snuggle with Mom and he was fine. Here is Jacob with his friend Gavin :)

Not much else is new. It's been pretty easy going around here lately.

Love, Karla

Saturday, October 11, 2008 10:09 PM CDT

I guess the no fever rule Jacob likes to follow changed it's mind today. Jacob woke up with a temp of 101.4. I am sure it's because of the toxins getting released in his body now that he is on antibiotics. Let me tell you, the smell of his urine before was horrendous. The smell is gone, but now his urine looks like toxic waste. Seriously.

Even though his symptoms would lead you to believe he wouldn't be feeling so hot, Jacob had a wonderful giggly day. I just love his sense of humor lately. He finds things so funny and will laugh until he can barely catch his breath. Tonight he was taking a bath and proceeded to splash. I said to him, "Did you splash? Splash Mommy again!" and he did! I screamed and he laughed and laughed. Of course this soon became a game of splashing mom and mom screaming. It just absolutely blows my mind how this child which we were told would be completely non-responsive continues to amaze us everyday with his quick thinking and sense of humor. It amazes me how much language he is understanding and how quickly he responds to what you ask him to do. I don't think this will ever cease to amaze me.

Love, Karla

Thursday, October 9, 2008 10:49 PM CDT

Good evening! I thought I'd pop on here quick while all the kids are in bed. I really think this one of a mother's favorite times of the day :)

Monday after school, we headed to Rochester to stay over since we had to be at the clinic by 7:00 A.M. Jacob and I did some shopping at our favorite spots. Actually, it is more looking around than actual shopping, but I did get a few cute things for him at the mall. I love Children's Place and since I had a coupon, I just had to get him these cute blue and green striped jammies with matching slippers. And since Devin had picked out this cute skeleton hoodie for Jacob at JcPenney's, I had to stop there and get his size since all the 7's were gone in
La Crosse.

We got back to the hotel and had supper, bedtime routine and bed. I slept so good and really hated hearing the alarm the next morning. We got ready and headed to the clinic for his urodynamic study, which basically shows the pressure in his bladder.

We were lucky enough to get right in to see the urologist after the test was done. It appears that he is back to a normal spina bifida kid, which is great considering him and normal don't usually go in the same sentence. LOL His pressure is back to normal, the size of his bladder is great, no stones, no reflux from what we could tell. I did convince him to put him back on Ditropan since it is a great spit dryer upper. His aide Trista cheered very loudly. I think she is as sick of the drool as I am. LOL
Jacob has had stinky urine, so they did a culture and he does have entercoccus growing in his urine again. That is the bacteria he had after surgery. I guess he will always have bacteria since the bowel was used as part of his bladder, so we basically treat only if there is symptoms.

Since we were done early there, we were able to get in early to see the wheelchair people for the old tune up. I tell ya, what a difference a week and a brace makes! He is sitting up so nicely in the chair now with the vest on. Dan made a few adjustments accordingly and we were done. A new headrest is on it's way and we will be set for a while I think! We stopped to see Ross for an adjustment on his brace and we were headed back home.

Michael has had driver's ed all week. It's been a little crazy getting kids picked up from school, running him to his class, finding something to do for a couple hours, and then getting back home for supper. But we have one week down and 2 more to go, so we will survive. Tonight we had a parent meeting on the rules and regulations of getting a permit, behind the wheel, and a license. It's weird to be even thinking of these things! Michael has a countdown on the calendar to how many days until his permit. Lord help me.....LOL

Not much planned for this weekend. Dave is helping out at the Habitat for Humanity house going up in the area. That should be neat for him to do. I might try to get in a few rummage sales since the season is winding down. I did really well last weekend. I really miss going once winter hits!

Hope everyone had a great week! Drop me a note...I'd love to hear from you!

Love, Karla

Thursday, October 9, 2008 10:49 PM CDT

Sunday, October 5, 2008 11:32 PM CDT

To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.

This passage from Ecclesiastes has always been a favorite of mine. It holds so many truths in life. We are going through our own season right now in so many different ways.

Michael is starting Driver's Ed tomorrow. I honestly do not feel that this could remotely be happening yet! In my mind, he is still about 10 or so, definitely not 15. When he is 15 1/2, he will take his permit test. Already, he has grand plans for this car that he is going to get.....you know the one that is going to magically fall from the sky or maybe the one he is going to pull out of his butt I guess! LOL!!! Not only is he starting Driver's Ed, he is ordering his class ring this week. All these things are making me realize we are entering a new season in his life.

Monday is going to be a crazy day. Jacob needs his pictures retaken since the one they took at the beginning of school is H-I-D-E-O-U-S. Then it is off to an appt for me, come home to wash clothes and pack, and head back to Rochester tomorrow after school, spend the night and get up bright and early Tuesday morning to have a urodynamic study to check the pressure in his bladder. He will see the urologist afterwards. We will then head over to get his wheelchair adjusted. Hopefully after these tests, we will have a break from appts for a while. Dave will meanwhile take Michael to his class tomorrow night and Devin will stay at a friend's "on a school night." You know that is a big deal right????

On a funny note....Jacob thought he'd throw a little fit this morning when he was getting dressed. This has happened many times in the past, but today was a little more intense shall we say. I told him to stop or I'd leave. He didn't stop screaming, so I left AND shut the door. Well, you should have heard the waterworks then!!! I went back in and asked if he was ready to get dressed. He instantly stopped crying. LOL!!! I tell you, that kid is showing his personality. It's such normal behavior and I am loving it.

Love, Karla

Wednesday, October 1, 2008 8:11 PM CDT

Hello everyone! Our visit to Rochester went pretty well overall. We left on Sunday afternoon, since we had to be there early for labs. My friend Diane came with to keep me company. Jacob had labs, an ultrasound, and x-rays. We saw the dietician who thinks everything looks wonderful. He is staying very nicely at or slightly under the 50th percentile for weight and went from 4th percentile to the 8th percentile for height. For a boy who once was not remotely chartable, this is a great accomplishment!!! We saw physical medicine and PT, who both agreed with me that his right hand has gotten worse, as well as his posture in general. OT saw him to adjust his night hand splint and to order a new daytime hand splint. The new one will be green of course. LOL

The orthopedic surgeon was concerned about the change in his scoliosis. It is curving much more dramatically to the right. He also has kyphosis, which is rounding of the back, but that seemed to get better with support on his spine. We want to avoid surgery right now of course, because we want him to grow more before fusing his spine. He mentioned having a back splint made for him, which was actually quite humorous, since we had already made an appt for Tuesday morning to have one made. This is the third year we have had one that is used mainly at school to help with trunk support. He was very pleased that we were a step ahead of him and said Jacob should wear it more often and for longer periods of time than he has in the past. It's one more thing to get used to, but obviously needed. I am going to try to have him wear a t-shirt under it, and then his shirt over, since I obviously still want to see the clothes he is wearing and not just the vest. Hopefully he doesn't resemble a marshmallow too much. LOL

Neurology was impressed with the progress he has made. She is really encouraging us to push augmentative communication. The school has been wonderful in this area. We are also considering seeing a specialist in this area up at Gillette to get some more ideas....this will be a work in progress, so I will update if this becomes reality.

We had to go shopping a little after all our appts. It's a requirement when I go to Rochester :) We headed back to the hotel with supper and of course talked a lot!

Tuesday, we saw Ross and had the vest made, then headed back to La Crosse so Jacob could go to Special Fester at Oktoberfest. He rode on the merry-go-round and a car. He seemed to love it and even threw his head back, taking in the breeze through his hair, with a huge smile on his face.

Next week, we will head back to Rochester to have his wheelchair adjusted and to see urology. One of the tests he needs was overlooked in scheduling, so we will have that done earlier in the day and see urology later. Hopefully everything will have improved since his baldder surgery. It was kind of neat seeing the x-ray of his abdomen and all the little metal staples that were used to reconnect the bowel after a piece was used for his bladder. It's amazing what they can do!

Not much else to report right now. The leaves are changing and the weather is getting cooler. I really love fall :)

Love, Karla

Friday, September 26, 2008 2:20 PM CDT

This week has been Homecoming week, so the kids have had fun dressing up each day....they had inside out day, hat day, funky day, pajama day, and Holmen Vikings/spirit day. Devin is loving his new teacher this year. He will have Mr Kline for 2 years. He tells me over and over how glad he is that he moved to Viking last year when Jacob started school. It tells me what a wonderful brother he is to have changed schools after going there for 3 years...all because he wants to be with Jacob.

Jacob went swimming today with his class. They go every other Friday. He enjoys it so much. You can barely talk about it without huge smiles and "I LA!" He definitely loves many things...except for me lately. Well at least he says he doesn't love mom, even though I know he does! LOL He is so stinkin' sassy. You ask him a question and he always says no and then waits for your reaction!

Jacob has been using a spoon at home too. He is so stinkin' cute, especially when he eats his cereal in the morning! He only needs a little help scooping, otherwise he is able to get it to his mouth very nicely! Here is a video of him eating. It's dark because of the window behind him, but you can see him bringing the spoon to his mouth.

We head for Rochester on Sunday for a full day of appts on Monday and one more on Tuesday. My friend Diane is going to come with, which should be lots of fun! I will update with how our appts went!

Love, Karla

Saturday, September 20, 2008 R>
9:31 PM CDT

I thought it was about time I got on here! GEEZ! Somehow the days melt into each other. I have been hard at work on a puzzle all week. Stupid thing took me 5 days. Usually I can do a 1000 piece in 1-2 days. I guess because it was 1500 it took longer. LOL

School is becoming a routine around here again. It's nice to have that time of the day to get stuff done around the house, run errands, or do nothing in absolute silence. So far, Jacob has been at school every day! He will have appts on the 29th, so he will be gone then, but otherwise, he has been really healthy.

He also seems to be changing in so many ways...maybe it's because he is healthy now. His new bladder is great, bowel program is great, the nerve pain from his back surgery seems to be gone, maybe that is what has encouraged such wonderful growth in other areas. He seems to be understanding language so much more, listening to everything going on around him, memorizing things, and figuring things out, and having a wonderful sense of humor. I guess the other day, he had something on his switch to share with the class, and he kept interrupting by hitting it. The teacher said Jacob needs to tell us something and everyone listened :) It's funny because he is totally getting it lately. It's so exciting to see.

Here are some pictures of Jacob using his spoon. Thanks Trista for taking them for me!

I also added more on the photo page that Trista took for me of Jacob as the star student for the day :)

As I was downloading these pictures, I found some other funny ones that Michael took.

This one totally cracks me up! Look at Devin's eyes through the sunglasses!

Today, Jacob went to a birthday party for his friend Caeden :) It is so wonderful how he is included in so much. The kids were excited to see him there.

Hope everyone is having a great week!

Love, Karla

Wednesday, September 10, 2008 3:16 PM CDT

DRUM ROLL PLEASE! Hope you are all sitting down for this! Okay, that was a dumb request since I am guessing you are already sitting down and not standing next to your computer.

Guess what????? (NO I AM NOT PREGNANT!!!!)

Jacob is learning how to use a SPOON!!! He is holding it, trying to bring it to his mouth all by himself. He needs a little guidance, but he has a death grip on the sucker!!!
It is sooooo cool :) Once again, I am left smiling and AMAZED at how AMAZING he is!

Yesterday, Jacob, Devin and I went to speak at Viterbo once again. It is always fun to speak to future teachers, especially since teaching is still so near and dear to my heart and especially fun because I get to talk about my guy. I hope that by hearing his story others can learn about themselves and how they want to teach in the future.
Of course, Jacob had to be cute and sassy, two of his favorite things to do.

Jacob's 1st grade teacher is WONDERFUL. She takes so much time to make sure he is included in every possible way. She wants him in the classroom all the time and when he is taken out of the room for therapy or cathing or whatever, she wants him back right away. She asks me my opinion if I want things sent home that all the kids are getting, but don't necessarily pertain to Jacob because of his developmental age. She asked me today if I thought it was appropriate to have a friend chosen as Jacob's helper or if that was singling him out too much. Of course I thought this was an awesome idea. Not only does Jacob love having a friend close, but it helps the other kids get to know him better. She named it a hopping helper courtesy of Jacob's frog theme :)

Things like this make my heart just swell with happiness because Jacob belongs. He belongs at school, he belongs with friends his age, he belongs with all the wonderful people who take such awesome care of him while he is there. This is no small thing. It is huge. and I am so thrilled to have what we have found.

Jacob is the star student tomorrow. He was able to share his Froggy Gets Dressed story on tape with the class this week. He also got homework for math where he has to count things in the house. You want to know something funny? As I was looking through Jacob's school stuff, I saw the list of words the 1st graders are going to learn to read and write. I saw that the kids were taking spelling tests this week and that they have other homework to do to learn words, etc. and I thought to myself, "Boy am I glad Jacob doesn't have to do that!" LOL!!! Here I am glad that he can't read and write because it would mean extra homework! Okay, you might not find this all that funny, but I was hysterically laughing at myself over the simple thought of it all! I guess there is some benefits to all this! LOL

We are going to try having a rummage sale this weekend up at Lorraine's house. There were a few things left when the auction people cleared out of there and since it rained the weekend I was going to have one here, we thought we'd give it a shot. I am not counting on much since the last time we had one there it didn't bring too many customers, but we've got to try to get rid of the rest of the stuff so we can hopefully clean the house, sell it and be done with it.

Sunday is our 12th anniversary. We are hoping to maybe do something together that day, not sure what yet.

Hope everyone is having a good week.

Love, Karla

Monday, September 8, 2008 6:18 PM CDT

Hello everyone. This past week has been horrible. Some people we have felt close to have said some things both Dave and I are reeling from. It will never cease to amaze me how by simply having a special needs child, you somehow need to justify your needs, defend yourself, and are seen as demanding. You are told to relax, take care of yourself, and not to be too hard on yourself. Yet the very people who tell you this can often be the cause of your anxiety or pain, or whatever.

I'd really like to know what it means to take care of yourself. Most days, I spend from the minute I get up until my head hits my pillow at night thinking and planning and DOING. I even think in my sleep I swear. I have some time while the boys are in school to be physically alone, but yet I often need this time to make phone calls, do housework, coordinate his cares, etc. And with the way respite, homecare, and other issues have gone lately, it's really hard to truly take care of myself.

I am doing the best I can with what I am given.

Not only that, but there is just so much asking you can do before you become a pest or labeled as needy.

So anyways, this may not make a whole lot of sense. It's just what is weighing heavy on my mind right now. We are short on money with Dave being out of work and all the things having a sophomore involves, plus the beginning of school in general. If anyone sees a money tree, please point me the way.

I will leave you with a very cute picture of my homeboy!

Love, Karla

Thursday, September 4, 2008 1:33 PM CDT

Happy to say that school is going well.

My sophomore with wet hair! I can't possibly be old enough to have a SOPHOMORE!

Michael informed me I only had 3 chances to get good pictures of him. LOL

My 4th grade boy! How did he get so old already?!?!?

And here is my "I'm not looking at the camera" 1st grader!

and my "I'll look at the camera, but not smile" 1st grader!

Jacob was very shy the first day, which is so funny to see. He was very happy to be at school though!

Jacob had to sign his name when he first got into his classroom :)

He was very tired around 11 and as soon as he was done being cathed, he took a nice nap before lunch.

He had a very fun rest of the day. Mom went home to have some quiet time! lol

Michael and Devin were out skateboarding after school. They are so funny to watch.

Yesterday, my mom came to visit for the day. Even us grown ups need their mama every now and then!

Hope everyone is having a great week. I am enjoying some quiet times around the house where I can actually get some things done.

Love, Karla

Friday, August 29, 2008 8:45 PM CDT

Hello everyone! Can't say my week has really gotten any better. Jacob's labs came back a little crazy. His clotting factor isn't great and he is anemic. One of his seizure meds came back high, which I suspect is the cause, but no one is ready to say for sure that is it just yet. He will have repeat labs on Wed before school. Hopefully that won't take too long given the fact it will be the 2nd day of school and I have an appt that morning too. Lab was able to get blood on the 2nd try the other day, so Robin definitely wins an award for that one! It's nice to have familiar people work with Jacob. I had Robin's son in my Head Start years ago :)

Jacob has been in a very happy mood. Here's a list of some things that have made him laugh hysterically today:

-the boys talking about something and he just had to laugh along

-turning the shower on

-the water tickling him in the armpits

-pouring water down the drain

-listening to the stories Miss Trista taped for him

-listening to the dog play with her toy

-watching Barney (it does it everytime!)

He brings a smile to my face so many times during the day. This morning, I went to get him up and he said, "Na na!" for mama, like he was so excited to see me. I gave him some new cereal to try this morning, and he was so stinkin' cute totally enjoying it. These are the things we get to enjoy every day. It's awesome.

We are also seeing a new side to Jacob.....the "I don't want to eat that" side. He is starting to get picky about what he wants. In fact, you can't give him the same thing two days in a row or even every other day. He won't even touch it. Like sorry, can't do it. LOL

Just a few more days until school starts. I think we are officially ready minus a few papers to still fill out. Jacob is so excited everytime we talk about it. He gives a big squeal :)

Hope everyone has a great holiday weekend.

Love, Karla

Wednesday, August 27, 2008 7:01 PM CDT

I know it's been a while since I came on here to post. Frankly, it feels like we have been on a treadmill lately, not really getting anywhere and getting very tired in the process. The auction did not go well. We put all that hard work in for nothing basically. I could say more, but nothing nice would be said. All I can say is that I will never put my children through what Dave and I have been put through.

We went to the Lion's Camp this weekend for our yearly Wisconsin DeafBlind Family Weekend. It was wonderful as always. The kids had a wonderful time. Jacob totally remembered where he was :) He giggled so cute as soon as he got into the cabin. He loves spending so much time outside. It was so nice seeing many of the families we have gotten to know so well over the years. Here are some pictures to share. I will have more when Sarah sends me the pictures she took....HINT HINT!

Our family by the lion!

Jacob by the lion!

Listening to tunes outside the cabin

Watching Barney and snuggling with bubba :)

Jacob and his buddy Joey!

School pictures were yesterday for Devin and Jacob. Jacob was next to impossible...either you saw the top of his head, no smile, or a smile so big you could barely see his eyes. We finally settled with one that was okay. Tonight was open house. We dropped off all the school supplies, which is so nice. Jacob had a huge bag I put up in the special ed room too! I think he is ready to go back to school. He was pretty smiley when his teacher was talking to him :)

We are relooking at nursing options once again. The 2 night a week help we were getting just quit because of his school schedule. The other agency we use is going to see what they can provide in the morning. Next week is only 2 days, so I really don't think that will be as much as what we really need. It really shouldn't be this difficult, but for some reason it always is.

Jacob went in to the doctor today for labs. He is getting bruises in odd places. Some of his numbers were off a little, so we are going to figure out what to do once his neurologist reviews the results as well. Hopefully it isn't something too troublesome.

Hope everyone is having a much better week than I am.

Love, Karla

Monday, August 18, 2008 5:02 PM CDT

Hello everyone! Devin just left to go bike riding with our pastor and his wife. Devin has repeatedly told me how many hours and minutes were left before he was leaving. He was just a little excited. LOL

Jacob went to his friend Jess's birthday party this weekend. Here he is with his buddy!

Another day of cleaning for Dave today and another day closer until this is all over with. I truly can't wait until it is done. Thursday can't come fast enough.

On Friday, we are heading to Lion's Camp for the Wisconsin DeafBlind family weekend. This is the 4th year we have gone. We look forward to this all year. I am meeting with a possible respite provider tomorrow in hope that she will be able to come with us this weekend. It would be a nice way to train her in since we will still be there, yet she will have the responsibility of taking him to the activities while we are in trainings.

I have the funniest video to share with you. Jacob was watching iCarly with Devin and started laughing so hard at one of the commercials where this little claymation guy burps. Thank goodness for DVR. We were able to rewind it many times so he could laugh over and over.

Hope everyone is having a great week!

Love, Karla

Thursday, August 14, 2008 8:54 PM CDT

Hello everyone! If you didn't get to see the birthday party update and the cute videos and pictures that went with it, you better check them out!

Jacob has been doing okay. He's kind of in a "I don't want to eat and you can make me" kind of mood lately. His urine has been thick, concentrated, and low in volume. I am working on the fluids, but they don't always go over as good as I'd like. Jacob had his yearly physical today and the doctor wasn't all that concerned about it. She reassured me that the real world and the ideal world aren't always the same thing and that I know what's best. Sometimes I question when I am told he "should" have this much fluid or he "should" be doing this or that, but it doesn't work that way. Like I've said before, it's the constant mathematical equations that are running through my head that get very old very fast. Jacob's pediatrician is so wonderful though at supporting me and everything we do.

Jacob weighed in at 45 1/2 lbs today, which is 2 lbs less than when he left the hospital, and he is 42 1/2 inches. He is basically following the same path my other two did. :)

We are in a countdown to the auction now. Dave spent all day yesterday at his mom's house cleaning. I went up there today and we threw an enormous amount of stuff away. We finished Dave's old room, which was very rewarding. It feels like we are getting somewhere anyway. Tomorrow, the auction staff will come back and do some more setting up. They will also be bringing a garbage truck to pick up all the trash. It is extremely overwhelming for Dave to be responsible for all of this. I really feel for him and the position he is in. He loves his mom and wants to do what is right, but at the same time, there is just SOOOOO much stuff. It's unreal. If you could, please say a prayer for Dave's peace of mind. It's been very hard on him. It can be very emotional finding things that belonged to his dad, who died 15 years ago. We find many reminders of him everytime we are there. It's hard to even explain, but it is hard stuff.

A very special person to me, Jan, took Michael and Devin to the movie today. Afterwards, they went to Chuck E Cheese, played games, and ate. The boys had such a wonderful time. They were gone the whole time we were cleaning, so it turned out perfect.

Hope everyone is having a wonderful week!

Love, Karla

Monday, August 11, 2008 10:29 PM CDT

Jacob had a wonderful birthday. On Friday, he had a bowling party with his friends. He was so stinkin' cute when he heard their voices. He just giggled. He basically spent all night laughing and smiling. I really think he wondered why and where his friends from school went, so he was thrilled to see them. The bowling alley had a ramp which he used. His friend Maysa brought a special bowling ball for Jacob without holes that her uncle used to use for Special Olympics. It was so much fun seeing him being just one of the kids :) Two of his friends, Zachary and Adam would push Jacob up to the ramp for his turn. It makes me so happy to see him so loved.

After bowling, we had hotdogs, chips and pop. Jacob was eating and spilled some chips on the floor. Tristan was sitting next to him and this is what he said:

He is so funny!

The kids helped Jacob open his presents, then it was time to go home. We stayed and bowled one more game as a family. It was a very fun day.

Saturday was his party with family and friends. Jacob had another great day. He was so funny when it was time for cake. He gets so shy when we sing happy birthday to him :)

Jacob hasn't been feeling the greatest today. He slept really late this morning and took a long nap this afternoon. He is barely eating and threw up tonight. Not sure what is going on. Hopefully it is nothing serious.

Thank you so much for all the birthday wishes for Jacob!
Make sure to check ut his new pictures!

Love, Karla

Friday, August 8, 2008 0:33 AM CDT

Happy Birthday to the most wonderful 6 year old ever! Time is such a funny thing....the first couple years seemed long and the last few years have flown by. I simply cannot believe 6 years have past since Jacob was born. We tried for 2 previous weeks to deliver him, but the third week was the charm. Jacob came into this world screaming. His daddy went to be with him right away. I had a beautiful picture of my boy within minutes taped to the drape as they closed my incision.

Jacob was welcomed into the family by those who came to be with us that day and welcomed into the Lord's family through baptism. After his baptism, which our pastor led, Jacob was taken to St Mary's NICU. I was sent to my room upstairs at Methodist. Dave went to be with Jacob and I was able to watch him on a monitor in the room.

The next days were spent healing, visiting my miracle, and spending time with family and friends who surrounded us.

While there are many sad and scary moments surrounding Jacob's birth that will forever make my heart ache in ways which surprise me every year, there is the other part of me which knows just what a celebration this truly is. Jacob has far surpassed any expectations set by man. Instead, he is doing the work the Lord chose for him to do, regardless of any disabilities or barriers which may hold him down. My boy spirit soars in ways most of us will never personally experience. I feel so incredibly blessed to have been chosen to be his mama....

And now a little trip down memory lane...

Sunday, August 3, 2008 10:36 PM CDT

No matter how much time has past, that stupid thing called grief likes to creep up and show it's ugly face. Something I hear, see, talk about, or think about, suddenly comes in and overwhelms me. I honestly was having a really good day, and then suddenly I was just so sad about what could have been with Jacob. Like I said, it can be the simplest things that starts that chain reaction. This time, it was school supplies, Jacob's birthday party plans, and a thought about another child Jacob's age who is 6 and doing all the things that 6 year olds do. And when it suddenly overwhelmed me was when I was cathing him for the night and flushing his bladder. The thought came to me, why should I be doing this right now? And then I saw the smile on my boy's face. I know why I am doing it....for him. But the reality of what is and what isn't, hurts like hell sometimes.

There are so many worries on my mind tonight. They are too many to go into right now, but mostly involve cares for Jacob that need to be done in a timely matter this week. I just ask that you pray for me to let these worries go and let God take care of them the way they need to be taken care of.

Our new cat has totally settled in. He is absolutely wonderful and so cuddly. It's so weird to see him literally walk in here and be fine instantly. He is so funny when he lays on your lap, he doesn't want you to go anywhere and seems very offended if you think about getting up. It's quite amusing.

Devin spent part of the day with a family from our church. Dave and I have been feeling bad for Devin since he often just goes along with what's happening here, which means he hasn't had much fun this summer. Michael has been able to spend time with his cousins and Dad this summer, but Devin basically has been hanging out with me. While I try the best I can to do stuff with both of the boys separate from Jacob, this has been a busy last few months. We are hoping Devin has a couple more fun outings with people from our church before school starts.

Speaking of school, Michael has orientation this week. Devin and Jacob got their paperwork in the mail yesterday. They will have open house and school pictures at the end of the month. Summer is definitely winding down.

Hope everyone is having a great weekend.

Love, Karla

Saturday, August 2, 2008 12:28 PM CDT

Hello! All is well here. We have a new member to our family. We adopted a cat from the humane society, so now Cooper has a friend. The boys named the cat Oliver. He looks a lot like Cooper in body size, even a little bigger, and has long hair as well. He is a really pretty tan/orange and white. He adjusted to the house within a couple hours, which normally doesn't happen. He is extemely friendly and loving, just like Cooper.

On our way to visit the humane society on Thursday, I tripped and fell....alright, now that you are done laughing, you can listen to the rest! They had "fixed" part of the sidewalk and left a little lip sticking up that I caught my foot on. Let's just say, I am still hurtin'. I went into the clinic to have me hand x-rayed because I was sure it was broken. I got a huge chunk of my skin scraped on my hand and on my elbow. I even had to have my mother's ring cut off because my hand was swelling. It looks better now with some bruising, but it is not broken. I woke up yesterday feeling sore in places I never thought possible.

We are getting closer to Dave's mom's auction. We have already got an offer on the house, but it came in really low, so Dave made a counter offer. No news on that yet. He has most of the house cleaned out now. It's been a huge, grueling experience. We will be so glad when it is all done.

Jacob is doing great. I think we have finally reached the top of the mountain in his recovery from this surgery and starting to go down the other side. I think he will be right on track for starting school in Sept. You know the best part? We haven't seen ONE seizure since surgery! Because he couldn't take the Depakote sprinkles when he wasn't eating prior to and following surgery, he was switched to IV Depakote first and then onto the liquid again. It made a big difference for some reason and he hasn't had any seizures since!

Hope everyone is having a great weekend!

Love, Karla

Thursday, July 31, 2008 9:14 AM CDT

Good morning! The mission is complete! Thank you Aimee for finding the frog picks for Jacob's cake! His cake is going to be cute. It is a pond with cattails and lily pads. The frogs will sit on the lily pads.

Yesterday, the nurse came to help with Jacob, so in order to keep my sanity in place since she drives me absolutely crazy, the 4 of us went out to find Jacob's birthday presents. It is not an easy feat finding something for him. We've gotten to the point that there really isn't much he needs and definitely nothing he really wants. We did buy him a MP3 player with video so that we can download music and movies onto it. That is his big present. Since the ear buds just don't stay in his ears, we found some cool headphones with interchangeable colors for the sides, one being lime green of course! Michael and Devin had grand ideas of buying Jacob this IPod or MP3 player and then giving Jacob theirs for his birthday since he doesn't really need anything too cool. Kids! The boys both found something for him as well. It's nice having their opinions on what they want to give him!

We have nursing two nights a week to help with showering, bowel care, cathing, meds, and bedtime routine. Justin came again last night. Jacob is still so shy with him. We did have two major breakthroughs though! Jacob actually ate his supper last night while he was here. He did bury his face in between each bite, but he actually ate! AND Jacob actually talked to me with Justin in the room! It was the first time he really heard his voice! Jacob is such a goof with someone new and more so with men. It's so weird for me to see him so shy! At the same time, it's neat to see him having such a variety of emotions.

It's so darn cute talking to Jacob about his birthday. He is all smiles. It's even cuter when you sing happy birthday to him. I just love how much he understands....it totally blows me away every day. God is so good.

Love, Karla

Tuesday, July 29, 2008 11:39 AM CDT

MISSION COMPLETE! Thanks Aimee!!!

This is my new mission! I want six of them on his birthday cake, but DQ is charging $1 each. They are sold online but then you have to pay shipping. If you can find these picks in a store somewhere, let me know!

Good morning! I had a wonderful weekend away. I headed to Fond du Lac Friday afternoon. I had to stop at an outlet mall on the way, but didn't find anything too exciting. Once I got to where my hotel was, I noticed a mall across the street, so I headed over there. There was a movie theater next to the mall, so I went to see Stepbrothers. Talk about hilarious...very gross humor, but hilarious! After the movie, I headed back to the hotel for the night.

Saturday, I spoke to a group of teachers taking a class to become vision therapists. I really, really enjoy this. I would love to do more and hope some day to speak at conferences, etc.

After I spoke, I headed to the OshKosh Outlet. That one is wonderful! Talk about a shopper's dream. I found so much since they were having a sidewalk sale. Jacob really did not need anymore clothes, but I couldn't help it LOL

I spent a lot of time there, then headed back for supper and to relax at the hotel. I had such a wonderful day.

Sunday, I went back to have lunch with some of the staff of the Wisconsin DeafBlind. We are looking forward to the Family Weekend in August at Lion's Camp. This will be our 4th year going. As the president of our family group, I've been helping plan this year.

I headed home in the afternoon and came home just in time for supper. I had such a great time getting away by myself. Dave handled everything here just fine.

Jacob is doing pretty good. Cathing is going well. He isn't having so much mucous everytime we cath him, which has helped ease my mind. His eating has continued to get better. Fluid volumes are a little better. We are trying to find a nice balance between going back to his schedule we follow during the school days and not giving him too much that his bladder gets so full before his next cathing since we still need to give him some fluid over a period of hours to make up for what he isn't able to tolerate. It's frustrating sometimes because I never even thought about this stuff with my other two, but yet Jacob is such a series of numbers.....how many ozs or mls he's had in fluids, how much he's had in his bladder, how much meds he needs, how much he weighs, etc. It gets a little ridiculous.

Anyway, I hope everyone had a wonderful weekend. Thanks for all the support we've received. You are the best!

Love, Karla

Wednesday, July 23, 2008 6:03 PM CDT

Hello everyone! Things are continuing to go alright here. Jacob has very smelly urine today, which more than likely means he has something brewing, but unless he is sick, we aren't going to treat it. That's a hard one for me to swallow, but we don't want to overtreat him and then have him resistant to antibiotics. I know his bladder had to be fixed, but when you use bowel to do this, there is no way to make the bowel sterile, so therefore he will always have bacteria. Oh well...I am done thinking about it.

Something cool to share....I am going away by myself this weekend! I was asked to talk at a class for those studying to work with the blind and visually impaired, so I thought it was a perfect opportunity to get away for the weekend. At first I was going to take the family with, but to heck with them! LOL!!! I haven't gone away by myself ever I don't think!

Jacob has a male aide that comes twice a week at night to help with his cares. He is a very nice guy and does a great job with him. The agency he is with allows him to cath and do bowel cares, which the other agency we use refuses to do, even though they provide this for another client. Anyway, Jacob is not into guys taking care of him. There is a guy that subbed a lot in the CDS classroom at school and Jacob refused to talk to him and worse yet, smile at him. Well, he is doing the same thing here with his aide. He won't smile, talk, nothing. He holds his hand behind his neck and hides his face. What a weirdo. LOL

Tomorrow we have my least favorite aide coming. I specifically asked for her not to come anymore, but she was scheduled anyway. I'll let Dave deal with her. LOL!!!

Okay, I had to share this picture....it cracks me up! Michael took a picture of him talking and talking and talking!

There are some new pictures in the photo section too!

Love, Karla

Sunday, July 20, 2008 6:57 PM CDT

Hello! I totally forgot to share something really cool! I saw a REAL frog in my frog garden! It surprised me and all night I kept telling the boys, "I saw a frog in my frog garden!" just to annoy the heck out of them. I am still trying to figure out why the stupid black cloth stuff you put down to keep out the weeds, which has a 15 year guarantee lasted all of 15 days before major weeds grew through it. Yeah, that was another thing that didn't get done when I was gone....not only were my flowers dead, the weeds were everywhere.

Jacob is doing fairly well. We are not advancing in his fluids much at all. He will start to cough and gag if we try the normal 6 oz flushes he used to get. We can do 4 oz flushes and he barely makes it. We have noticed there is a lot of behavior behind it too. He gags just to see what you will do, especially when you put him into his wheelchair. He got in trouble yesterday for doing it when it was very obvious he was doing it on purpose. Little brat! LOL

Not much else new. We are making plans for his birthday coming up. Hard to believe he will be 6!

Love, Karla

Thursday, July 17, 2008 9:52 PM CDT

Things are settling into a routine around here, not necessarily free of chaos by any means, but at least we are cathing every 3 hours this week. There just doesn't seem to be enough hours in the day to get everything done that I need/want to do.

Jacob's birthday is coming up soon! It was time for my annual what he needs or wants for his birthday. And once again this year the answer was nothing really. It's kinda sad that he doesn't get all excited like his brothers do or understand the whole concept, but I do talk about it every day with him and he of course is very excited about the Happy Birthday song! :)

Because it's so hard to find anything for him, I decided to head to Target and Walmart and make wish lists for him. He also has a trust to help with his expenses that people can put money in, so I think that is basically what I will recommend to people.

Jacob has really developed some skills lately. Everytime people talk to him, he wants to reach out and touch them. He has been known to reach WAYYYYY over to reach someone! Tonight when I was getting him ready for bed, I wasn't paying attention to him for a second and he reached way across his body and touched me. :) It is such a tender thing to see him trying to move himself to reach out to someone. I love it.

The other thing developing is his attitude and opinions on what he wants. He had a cheese sandwich one night and the next night I decided to make him a grilled cheese sandwich. Let's just say Jacob didn't want anything to do with the same kind of food TWO days in a row! LOL

I was getting Jacob up from his nap and asked if he wanted some crackers. I put him in his high chair and thought about the blueberries I had in the fridge, so I thought I'd give him a few of those first. He must be able to see good enough to know the difference because he sure was offended I gave him blueberries instead of crackers! So I said, FINE and gave him his darn crackers! LOL

Keep the prayers coming for us. We are still hoping and praying Dave gets a job soon. Times are rough.

Love, Karla

Monday, July 14, 2008 10:46 PM CDT

Today I felt like I had pretty much reached the end of my rope. Not sure exactly why, as today was not much different than any other day over the past week. It just was a culmination of many things I think. We are hoping for more nursing care. Jacob is scheduled for 2 nights of help right now, Mon and Wed. We were originally told we would have coverage mornings and evenings basically all week. Things changed....yes in a matter of one week...there is a shortage of help, and so no matter how much I might feel I need, it's not a matter of that. It's what help is available. The thing is as a parent, you often get the feeling like you should just shut up and accept it because you never want to be labeled as a pest, obnoxious, a whiner, etc etc. No matter what you say or want to say, the other party is always ready with a reply that somehow explains their point of view, defending themselves or others, etc. It makes me wonder exactly what I should be saying or feeling or if it is best to just shut up. Sometimes you just want someone to acknowledge your feelings and share in them. You know there aren't necessarily any answers or solutions, you just need to feel validated. I know this may not make a lot of sense. But to some it may.

Dave is also busy working on getting his mom's house ready for auction. While this needs to be done, it has my emotions split as well. I'd love to be able to help him and get it done. I'd also love to have him focusing on us and not on his mom's house. I'd love to have someone to share some of this task with, but he is the only one in the family to do it. We have been tag teaming the cathing at night, so that is helping. I still am so stinkin' tired. I am one who needs a set amount of sleep. It's kinda like having a permanent newborn in the house.

Amongst all of this, we have had some very amazing things happen to us, people showing they care in small and big ways, and blessings I just can't even begin to understand. Thank you to all of you who have been a part of these blessings....you know who you are!!!

Love, Karla

Sunday, July 13, 2008 7:56 AM CDT

Hi everyone! I am surviving here. The middle of the night cathings are the hardest since I am not one who likes to get up in the middle of the night, but we only have a couple more of those to go. Then it will be every 3 hours.

Yesterday, Jacob woke up very crabby, crying, and out of sorts. I knew something wasn't quite right. A nurse friend of ours from church was over helping me since Dave was busy working on his mom's house (the auction is in August!) and we noticed that his urine was cloudy and funky smelling. So after a couple phone calls, I brought a sample in to the lab. Now because he has a bladder augmentation with bowel in his bladder, 9 times out of 10 it will show that there is bacteria in his urine, so when I get a call back saying it was positive, I called Mayo to let them know. Of course the resident on call didn't know us from a hole in the ground and started doing the normal symptomatic checklist.
His list included the following:
-fever (nope)
-acting differently than his normal behavior (yep)

My list consisted of the following:
-lack of fever since we never can rely on it anyway
-cloudy urine
-smelly urine
-crying which he rarely does
- slight tenderness when I cathed him
-increase in urine
-vomiting

Of course, he was quick to point out like any fool does that a UTI does not necessarily cause an increase in urine or vomiting, and the lack of the fever is also questionable. So this ever so smart mama points out that E.V.E.R.Y.T.I.M.E he has had a UTI, he has had the above symptoms and that he has obviously had A LOT of them or we wouldn't have been having the stupid bladder augmentation to start with!!!! So over the course of our discussion, I am reminded over and over that he will always have bacteria in his urine, we are looking more for a symptomatic infection, blah blah blah blah blah blah. At which time I am now at the pharmacy, picking up his antibiotic that the local doctor has called in. I continue to voice my concern that this surgery was supposed to help this whole UTI problem and that maybe, just maybe the last round of antibiotics didn't clear the enterococcus completely, even those Tuesdays labs showed nothing. So we shall see what the susceptibilities show at 48 hours and what this is all about. I am already thinking about what I need to talk to the urology nurse about, because I can guarantee the above conversation is going to be repeated. Now trust me, I know my kid. Unfortunately, he can't tell me exactly what he is feeling, so I could be wrong in my assessment yesterday, but I doubt it. He wasn't feeling right. I hate playing the UTI game. It's truly my least fun game to play.

Speaking of games. I have thought of a new idea for the Olympic games.....puke bucket races. The goal is to see which sibling can run the fastest to get a puke bucket BEFORE his or her brother or sister pukes. Currently, I think Devin would win the gold medal on that one.

I want to thank all of you beautiful people out there for all you kind words, prayers cards, meals, and gift cards, which have helped us out so much. This has been a very trying time with Jacob's issues, Dave not having a job right now, and two other boys needing love and attention too. Thanks!

Love, Karla

Wednesday, July 9, 2008 10:00 PM CDT

Please tell me this will get easier. Or that my nerves will withstand this. Anything to make me feel better. This irrigating and cathing is something else. Every two hours. And once at night. It's been one day and I am ready for it to get better. Today was a lot of irrigating since he just was not draining his bladder at all. That alone is a sign of no good. The only way I could get anything out was by aspirating it, which is also not the best way to do it. And to top it all off, Jacob's tract started bleeding. UGH UGH UGH. I talked to the urology resident and he agreed that because it is such a small catheter, the mucous is just not coming out the way it should. So now it is time to flush and flush and for me to get sick hoping nothing is wrong.

I will say my sister is awesome. Thank you so much for the wonderful email....

I know I have to do this so I will. I just wish for once that things would just go right without all these extra complications added in. That is what gets me so sick...

Anyway, for your viewing pleasure, here is Devin with his own suprapubic catheter! LOL

Love, Karla

Tuesday, July 8, 2008 10:10 PM CDT

Jacob had his post op appt at Mayo today. His suprapubic tube which was emptying his bladder was taken out. That should close up on its own within a day or two. If it is leaking at all by Thursday, the urologist wants us to put a foley in so it can finish healing. We need to cath him every 2 hours for the first week plus at least once during the night, every 3 hours for the next week, and then go to every 4 hours. It will take some getting used to cathing more frequently. We also need to irrigate his bladder at night to clean out the mucous. We will always have to do this to make sure his new bladder functions properly. All of these precautions will help prevent his bladder from rupturing. I was getting nervous and worried about it tonight the first time I irrigated his bladder. Not much return when I put the saline in, but once I pulled some of it out, it started flowing. It's a little nauseating knowing things could go wrong. I'm sure I will get used to it eventually just like everything else.

His MACE on the other hand is going really well. That tube came out today too. Every night, we will pass a catheter into his belly button and flush it with water to clean him out. That doesn't worry me as much as the thought of his bladder rupturing. The nice thing is there is no nerve endings in the appendix that they used for his MACE so he didn't even care that we were putting it into his belly button.

After his appt today, we went to see his nurse, PT, and physical medicine doctor. Jacob's left leg is really swollen. The doctor felt it was from surgery and laying in bed. Because of his spina bifida, he doesn't have the normal "pump" circulating fluid within his legs. Hopefully it will resolve in a few days.

When we were all done at the clinic, we went to a local park to feed the geese. The boys had so much fun and were a little freaked out when the geese started following them. Michael took some cool pictures, so I will try to share those when we upload them. It was such a beautiful day with a nice breeze. Jacob just absolutely loves being outside with the wind blowing through his curls. He giggled so cute when the geese started honking. It's so much fun just watching him and marveling at all the things he finds so much joy in.

Time to close and cath one more time before bed. Hope everyone is having a great week!

Love, Karla

Monday, July 7, 2008 11:24 AM CDT

What happens when you spend 24 days in the hospital....

All the hard work you put into planting flowers is useless because they are now dead.

The boys frog is now dead, despite Dave feeding it. Obviously he didn't notice the carcass of a frog in the terrarium.

You go to the Walmart in Rochester and when you come back home, you try to find something you just KNOW was right there, and realize you're in a different store!

Somehow the "bed" became comfortable this time and I could actually sleep!

I think it helped that the doctors and nurses were so quiet when they came into the room and I didn't have anyone putting on all the lights at 6:00 in the morning like last time!

Somehow a whole month is gone! Time is so different in the hospital than it is at home.

You are thankful for all the care Jacob got in the hospital and let Jacob take the lead for when he was ready to come home. :)

He was so happy to be going home!

Everything has been going really well. We are getting used to Jacob's new routine. The MACE is working great. We put him on the toilet and use a gravity bag with water to flush him out. Yesterday was the first day he didn't poop until we used his MACE. That is our goal :) We are hoping to eventually get him into big boy underwear!

Tomorrow we go back to Rochester for his post op appt. He will get his tubes out. The suprapubic one, which has been draining his bladder, is looking really red and yucky around the stitches. We will then start cathing him normally and flush his bladder at night to make sure the mucus the bowel part of his new bladder produces is cleaned out. I will try to update after our day tomorrow.

Nothing else too exciting going on. Hope everyone had a great 4th!

Love, Karla

Thursday, July 3, 2008 10:58 PM CDT

We are home! It always takes a while to get going, mostly because of meds. I swear Mayo uses antibiotics that are never used anywhere else. After a while of getting things sorted out, we were headed home. Dave is meeting a pharmacist now in some sort of drug drop. LOL

Of course, Jacob just had to throw up as soon as we put him in his wheelchair. He threw up on the way to Rochester 24 days ago, so I guess it is fair turn in some sort of sick way.

We were able to get our nightly routine in just fine. I had lots of supplies to put away, meds to give, and his MACE to flush. I was able to hang a bag of water to flush the MACE, which is much easier than pushing water through with a syringe. Jacob was much more thrilled being back on his commode than the big comfy couch style of commode at the hospital. He sat in the bathroom listening to his Froggy stories while he pooped :)

Not quite sure what this weekend will bring....hopefully some peace and quiet!!!

Love, Karla

Tuesday, July 1, 2008 8:11 PM CDT

We are going HOME! I will update tonight!

Hello everyone. We are taking steps toward home. With so many med changes, hospital rules on meds, etc his schedule was a little different than what we do at home, so we have been trying to follow his home schedule. This seems to have helped somewhat today. We are still seeing some gagging, even threw up once, but otherwise, it was a little better than yesterday. This IV fluids have been discontinued for right now so we can run water overnight to make up for what he missed during the day. If this goes well and it doesn't set him off vomiting, we are going home Thursday more than likely.

Jacob went outside today. He thought he was going home. He was laughing so hard as we got to the elevator and laughed the whole time we were outside. When we came back to our room, he cried and whined for about 10 minutes. Okay, tell me this boy doesn't understand stuff? Pretty powerful reminder of just how much he comprehends.

Wednesday update:

I didn't get to actually post yesterday because we were so busy getting everything straight for the night and then the boys and I watched a movie.

Jacob did wonderfully yesterday getting in his fluids. We are back to our normal schedule which I think helped a lot. The plan is to make up any fluids he has missed by running his pump with water or pedialyte at night.

The resident came in today to let me know his hemoglobin was still down and labs would be drawn again today. Jacob might need a blood transfusion this afternoon. This is most likely caused from the antibiotic used to treat his UTI. Good news is his white count went from 21,000 bacteria to 4.4. His C-Diff also came back negative, so I think we have gotten rid of the infections.

Jacob is so super sassy and silly in here. Everything you ask the answer is no and he laughs all the time. It's so nice to see him so happy.

We really hate to ask this, but besides us being in the hospital for so long, our family has other factors we are very concerned over right now. Because of the economy, Dave has lost his job he had for 10 years and after trying aother job which just didn't work out, is now looking for work once again. At this time, I just don't feel I can return to work with all Jacob has going on. If any of you would be willing to help out in any way when we get home, either by providing meals, gas or grocery gift cards, or any other means of help, we'd really appreciate it.

Hope everyone is having a great week.

Love, Karla

Monday, June 30, 2008 4:37 PM CDT

Hello everyone. I am starting to feel that one day is the same as the next and the next and the next.....Jacob is still throwing up if he gets anything over 2.5-3 oz. He threw up last night and again this morning. Drinking from a cup isn't working so hot, so we have given most of the milk through his tube. That is also only a fraction of what he normally gets. So far today he has kept down 12 ounces total of the 40/day that he needs. We are trying to get the meds back to a schedule that is more like home. With meds discontinued now because of his bladder being repaired and new ones started for his infections, things were a little messed up. Not sure that will help with his fluids at all, but we are going to see. I just hate not knowing what is going on with all the vomiting. No one has any real ideas.

We were moved to a different room on Saturday. This one is smaller in someways and set up differently. Don't think I totally like it as much as the old one. So many kids had gone home, that they closed one hallway. Of course today that hallway was opened again.

The boys are here, somewhat bored because Jacob is on isolation, meaning they can't go to the playroom. They have the Playstation in the room now and have improved their wheelchair skills by going up and down the hall. LOL

Nothing else new to report. Please keep the thoughts and prayers coming our way!

Love, Karla

Sunday, June 29, 2008 11:05 AM CDT

Hello everyone! I am getting very tired of caringbridge somehow not saving info when I post! I had written a whole post yesterday, changed graphics and everything. UGH

Anyway.....Jacob is about the same. He is up to 2-3 ounce flushes with meds. Yesterday we tried to get him to drink some milk after his lunch. He promptly threw up all his lunch. At suppertime, he drank some milk with his food, did really good getting 4 oz down and then when he got his meds and flush 1/2 hour later, he threw up his supper and milk. We'll have to see how today goes. We are hoping to get home this week.

Dave and the boys came up yesterday. The boys were so excited to tell me about Bible camp and had so many songs to sing. It was neat to share in their excitement. Dave's best friend Todd and his girlfriend Laurie also came up yesterday. It was nice to share some laughs and visit. We had to go to Walmart after they left to get The Spiderwick Chronicles. Devin has been counting the days until it came out and since he was at camp on Tuesday, he was driving us nuts about getting it.

Jacob has been doing this crazy laugh lately. We call it delirium! LOL

Hope everyone is having a great weekend!

Love, Karla

Thursday, June 26, 2008 9:30 PM CDT

It was an emotional night for me last night. The urology resident came in to say he was done at Mayo and moving to Boston today much to my surprise. The urologist is out of town and so we were to meet a new urologist today. It's hard when you have gotten used to someone, they know your child and the situation, and then you have to switch to someone else. On top of that, Jacob was so gaggy last night, could barely tolerate much volume with meds, and then ended up throwing up this morning after gagging for about an hour.

I hate having to make decisions on what to do. I am the type of person that likes to talk it through with someone, get their input and feelings, write out a plan I can see in black and white or at least is very outlined in my mind, and just generally know what we are going to do. Since he needs 40 oz a day, 20 in water and 20 in milk, we need to find a way to do that. Since feeding him pediasure at night has ended in puking more times than not, we are not going to do that. We instead are going to feed him food, which has been going well, then work on getting his water volume with meds. After that is relatively going well and at goal, then we will work on the other 20 oz a day, whether that is by mouth or by g-tube. That part doesn't matter as much because I know it will take him time to get back to drinking like he was. Thankfully we have the g-tube.

So many people have asked when are we going home, commented on how sick I must be of being here, or said I bet you can't wait until you go home, etc. And I realized something amongst all this....it's not about me. It's not about me wanting to go home, or getting sick of being here. It's about Jacob. It's about him being ready to go home. It's about him tolerating enough liquids to sustain him and not dehydrate him. It's not about me. And because of that, I appear settled in, used to the place, I'm able to smile and laugh, and simply passing each day enjoying Jacob. It might appear odd to those who can't wait to leave this place or complain because they have been here 2 days. It might appear odd to the nurses, doctors, and staff who often are asked by parents when can they leave. But like I said, it's not about me. Jacob is in the lead.

Today was another spa day. Jacob is pampered with a hairwash, scrub, and lotion. Such the life!

We had a busy day with visitors today. Our pastor and his wife came this morning and then took me out to lunch. This afternoon, Jacob's aide Trista and teacher Chris came to visit and we had supper together. Trista brought Aubri again, and she was so impressed with helping push Jacob in his chair when we went for a walk. How cute is this?

Thank you for all the wonderful guestbook entries and emails. They truly make our day!

Love, Karla

Thursday, June 26, 2008 9:30 PM CDT

Wednesday, June 25, 2008 5:14 PM CDT

That is our theme for the day! Jacob has C-Diff which means lots of diarrhea. So here we sit, all snuggly in the chair. I hear him filling his diaper, but not wanting to wake him, decided to sit here until he woke up. Then he pooped again. This time, I felt it running onto my legs and onto the floor. Let's just say that if someone's poop actually makes you have to get into the shower to clean up, it's not so cool! LOL

The PICC line looks a little swollen today, so there was an ultrasound done to check for a blood clot. I have not heard if anything was seen.

Infectious Disease came in today and discussed changing the antibiotic he is on for his UTI since the one he was on was not covering it. It was nice talking to this doctor and I thanked him for his support back when Jacob had meningitis as an infant. Three other doctors were telling us to let him die while this doctor told me that the only one who knew Jacob's potential was God and that Jacob would bring us more joy than we could have ever imagined. I have always hung on those words he shared with me in such an extremly trying time.

Jacob ate breakfast and lunch so far without throwing up, even though there was a lot of gagging. We will see how supper goes!

Love, Karla

Wednesday, June 25, 2008 5:14 PM CDT

Tuesday, June 24, 2008 9:26 PM CDT

Hello! Jacob was set to have a PICC line placed today. He wasn't taken down until shortly after noon. We finally got back to our room at 4:20. Everything went really well. The PICC line is in his upper right arm. For those of you who don't know what a PICC line is, it basically is a much sturdier IV that can stay in for much longer than a standard IV. It goes into a vein in the arm and threads upward until the tip basically ends by the heart. Jacob's is also stitched so it doesn't come out.

The plan is to go ahead and try to get Jacob eating (AGAIN!) Doesn't this sound familiar? As soon as Jacob is at a decent place nutritionwise, we will be able to go home.

Not only does Jacob have a UTI, he also C-Diff. He had this after the last surgery too. Basically what happens is that by giving antibiotics, the good bacteria also are affected and so there is an overgrowth of the bad bacteria.

Jacob is going up in volume with his MACE. After pooping all over the bed a couple nights ago, we now have a commode in the room so he can poop on there. It's working really well.

Not much else new to report. It's much quieter without Devin here with me! I am hoping Michael and Devin are having a great time at camp.

Love, Karla

Sunday, June 22, 2008 10:18 PM CDT

Okay...sorry for the delay! It's been a crazy last two days. Saturday began with lots of vomiting. In fact, anything and everything that went into his tummy came out. The resident was concerned that something was going on, so a CT was ordered. Since it was the weekend, we had to wait a while since the ER has precidence over the CT scan. In order to go to CT, we had to get contrast into Jacob. We all thought that was a rather funny joke since he had no IV and was throwing up. Somehow though, he actually tolerated 4 ounces in his tummy. One of the flight nurses came down to start an IV. She got one in, but was concerned it wasn't going to last long. It flushed okay until he got to the CT of course, at which time it was useless. The resident was there for the CT and luckily it did not show any evidence of bowel obstruction. Jacob came back to the room and a few minutes later we were sent back to CT to check his shunt. The resident had sat down to figure out what else might be going on and remembered he had a shunt. Everything checked out fine with that too. A neurosurgery resident came in to talk to us and couldn't find his shunt without me showing him. He talked about not wanting to tap it and introduce possible bacteria and I thought, yeah, stay away from it since you obviously don't even know where the shunt is!

It was important to run some blood tests, so lab had to come and try to draw blood. They were able to get a little and then it clotted off. Backup was called in and this woman magically got so much blood out of him, it was ridiculously easy. Go figure. The resident wanted his tummy to rest overnight, so we hooked his G-tube to drainage.

This morning, the resident came in to let us know Jacob's white count was way up and he was growing enterococcus from the urine which was taken the other day. He was started on antibiotics. We discussed getting a PICC line placed. In fact, Jacob was scheduled to get one tonight. Since we were waiting, the resident asked if the PICC team could place one under general sedation in the procedure room. After a lot of going back and forth, the team came with an amazing tech who got an IV in the first try in a place no one has ever even looked before. Jacob is now getting pedialyte and IV fluids! Not sure if a PICC line is still going to happen tomorrow or not. We will see what tomorrow brings.

Dave came up yesterday for the weekend. My sister and family brought Michael back today and visited for a while. Dave then took the kids to bible camp. They both were very excited and will have a great time I am sure. Lauren just loved having Michael stay with them. She cried when Michael left today. It was so sweet.

I have been busy watching the video on demand they have here. I have been seen a lot of movies I have never even heard of. It's been a great way to pass time, especially since Jacob took a 5 hour nap this afternoon!

Hope everyone has had a great weekend. Thank you for signing the guestbook.

Love, Karla

Sunday, June 22, 2008 10:18 PM CDT

Friday, June 20, 2008 10:51 PM CDT

Last night and into the early hours of this morning, we attended Pukefest 2008. Needless to say, the idea of running pediasure at 60 cc/hour wasn't something Jacob necessarily wanted to take part in.

Today was a relatively okay day minus the puking and the fever that decided to pop up during Jacob's nurse's lunch break. While she was gone, Jacob became flushed and lethargic. Dr Kramer and Dr Routh walked in right when this started. The nurse covering lunchbreak came in and took his temp. The doctors wanted him watched carefully. Thankfully his fever went down. He did have a chest x-ray done and some urine sent to lab. No news on that yet.

Jacob spent some time smiling and laughing today, especially at Devin playing with his Hulk guys. He always gets a kick out of the spittin' thing boys do when they play. He ate okay today. Not great, but not too bad. Not a whole lot of progress in that area yet.

That's about all for today. Hope everyone has a wonderful weekend.

Love, Karla

Friday, June 20, 2008 10:51 PM CDT

Thursday, June 19, 2008 9:07 PM CDT

I'll start with the wonderful adventures down "no IV access" lane. Yep, Jacob officially has no access at this point. We had the best of the best in here trying to get an IV without luck. Hopefully over time, he will heal enough and those sites will be able to be used again, but for now, there is nothing. We thought we'd have to get a PICC line placed, but since he tolerated the pedialyte at a higher rate last night and today, he didn't need one. He was close to a liter short yesterday, so fluids were much needed. Lab would not leave the issue alone however, and somehow found a very small vein to draw blood from. I was very close to throwing everyone out of the room, then they got it. It's so hard sometimes being the mama...knowing it's necessary, but also knowing that enough is enough.

Today, Jacob got washed up and out to the playroom TWICE! Here he is enjoying his ride in the wagon down to the playroom.

And a little video of him being super sassy!

He had a very good day overall. I think he seems to be in good spirits, awake a lot more, and starting to eat a little better. We are nowhere near his normal eating, but it will just take time. Here he is enjoying some chocolate pudding and Barney :)

Today we had a surprise visit from Grandma! My sister-in-law was in Rochester for appts and so she and my nephew's wife also stopped by today.

Devin and I continue to find ways to enjoy our days here. He is such a goof. He is currently sporting some tape on two of his fingers since he "slammed them in the closet door and sprained them." Yeah, it's a scam to see how many people he can get to feel sorry for him! LOL

The urology resident and I had some more discussions about care of his bladder. I've been flushing his bowels at night. Tomorrow we go up in volume, so we shall see how much he likes that! Or maybe how much mom and the nurse like that!

The nurses were much better today after the whole forgetting his Tylenol yesterday. Everyone has been wonderful, there are just some times I need to speak up. We are lucky to have such wonderful care, relatively close to home.

Love, Karla

Wednesday, June 18, 2008 11:49 AM CDT

Sorry I didn't write anything yesterday. The day kinda got away from me.

Dr Kramer, the urology resident Dr Routh, and Sue the nurse came by yesterday morning. Sue went over some of the cares I will need to do with the MACE and his bladder now that there is a piece of bowel in it. It seems pretty straight forward, but something that needs some planning and getting used to. It shouldn't be bad at all though.

I also talked in length to the discharge planner about nursing when we get home. There are a lot of pieces to it that need to be worked through. There are different issues surrounding it, but I am just not going there right now.

Jacob has been trying to get used to eating again. He is excited to take some bites, but tires out really easily and isn't even close to his normal diet. This morning, I was talking to his 2 nurses. The one was asking what was holding him up from going home, if it was just eating. I was like "WHAT?!?!: He just had major surgery not even a week ago!!! The doctor said it would be about 10 days. Yesterday, he thought maybe Friday, but then discharge planning said to wait until Mon. Honestly, whenever JACOB is ready we will leave. And how the heck is he suppose to sustain himself with eating if he can't hold much in his tummy, we have no IV access, and they discontinued his feeding pump. That is being added again after what just happened...This morning he had cereal. He ate pretty good. One of the nurses came in to give meds (his 2 nurses were busy) and he promptly puked up his whole breakfast, meds etc. Then his 2 nurses came in to tell me the meds were reordered. Jacob has been crying when you touch his g-tube or put the extension in. I was trying to talk to them about it and say hey, he obviously isn't where he should be. I also said he NEEDS to have Tylenol every 4 hours. He is fussing when the 4 hours are up. The nurse said, well he looks so good I don't always think about him needing it until it comes on so fast. Okay, mind you Jacob had the same 2 nurses yesterday and I told them all day yesterday that they needed to stay with a 4 hour schedule of Tylenol. Why TWO of them can't remember it is beyond me. I am going to have to talk to the doctor about this. There is no reason for forgetting.

Jacob got outside for a little while yesterday. He seemed to love the sunshine. Devin was splashing him with water from the fountain which Jacob thought was hilarious. The gowns Jacob has been wearing are courtesy of my mom. Aren't they cute????

Devin has too much time on his hands!

Devin and I tucked Jacob in last night and headed out to see Incredible Hulk. It was a really good movie. We went to Walmart on the way back to the hospital for a few things and came back to find Jacob sleeping. That was until Devin started playing with his Incredible Hulk figures...then all we heard was a lot of giggles. :)

We will see what the rest of the day brings.

Love, Karla

Wednesday, June 18, 2008 11:49 AM CDT

Monday, June 16, 2008 9:11 PM CDT

Another day has gone by. Jacob was able to have 2 popsicles today. He was too cute eating them. He is way past licking....he had to bite it :) He is sporting some red lips now.

We lost the IV in his foot yesterday ( I think...can't really remember anymore! LOL) and the one in his hand today. He is now being poked for the 4th time trying to find one. This has been going on since 5:00....it is now after 9:00. We went through 2 IV techs and now the flight nurse is in here. She has tried twice. Let's just say one of his veins in his right foot is shaped like a number 3. Not the best shape to thread an IV in. We are so close to not needing one, but honestly, I can't see him being able to drink enough right now to keep up with his fluids and he has stupid sprinkles for one of his meds, so he has to have it in IV form until he can eat enough to take them. Needless to say, not sure what we will do about the IV.

I was very blessed with a wonderful visit from my friends Diane and Mary today. They came up and visited, then we went to a rummage sale in the hospital (yes, I did pick the right week for him to be admitted! LOL) and then out to lunch across the street. The nice thing is they have outside seating, so it was nice to be in the sunshine a little. Good conversation and a nice distraction from the hospital room for a little while.

Devin spent a lot of time in the playroom today. He also went for a walk with one of the child life staff. They have been so good to him. He went to the gift shop tonight and bought them something. It totally warms my heart to see him so giving and appreciative.

Jacob is doing about the same been awake some and sleeping a lot. We are getting lots of smiles, even a few laughs, and lots of sassy no's. He can be so charming. LOL

Here is a smile for ya!

And the glassy-eyed, drooling look when he was getting chest PT. He loves the vibration!

Thanks so much for the guestbook entries and emails. It helps to know so many people are thinking of us, especially all of Jacob's school staff who we miss so much already!

Love, Karla

Sunday, June 15, 2008 11:49 AM CDT

Devin and Jacob played Chutes and Ladders today with Jane from Child Life!

Hello and Happy Father's Day! Jacob is having a relatively good day. He is busy pooping a lot, listening to music, and sleeping. We are seeing more and more of his eyeballs for longer periods of time though. He had blood drawn this AM. We thought we'd be smart and draw it off the second IV in his foot. Well it promptly clotted off and so it was taken out. I went to throw laundry in and let Dave be in charge of the ever lovely finding a vein, and wouldn't you know it, but they found one on the first try and got enough for their sample.

The urologists feel he is doing very well for this stage in recovery. Tomorrow, we will start some of our teaching on how to use the new MACE. He will also be able to start some ice chips or whatever.

Jacob is still being super stubborn about coughing. He coughed his morning and was so extremely mad at himself for doing it. It was rather funny actually. Like one snuck out and he didn't want it to! He is getting chest PT 4 times a day and this has helped tremendously in not having to take another trip down memory lane into the PICU.

Nothing more too exciting going on. I am catching up on some movies I haven't seen on the Video on Demand Mayo has here. It's pretty awesome!

Thanks for all the well wishes!

Love, Karla

Sunday, June 15, 2008 11:49 AM CDT

Saturday, June 14, 2008 2:52 PM CDT

We have seen more smiles and jabbering. He is very sleepy, but when he is awake for a few minutes, we are getting some responses from him. He is missing school so much. It is funny...I can't talk about school without him whining. The biggest whines come from mentioning Miss Trista, so we had to call her today so Jakey could talk to her. He smiled the entire conversation. :) It goes to prove just how important the special people in his life really are.

We had some movement today, that is in the bowel dept! He has pooped 3 times today. The kind that requires a complete bed change. Obviously even though a piece of his bowel was used for the bladder patch, things are working! That was one of my biggest fears with this surgery since I know so many kids with GI issues.

Jacob is listening to his Greg and Steve CD from Miss Chris. Thanks for making it for him Chris! He loves it :)

Jacob had a visit from our special friend Dr Nickels today. She definitely agreed that not breathing after surgery is not the time or place to show his independence or control over the situation. He's having some issues with very few breaths/minute today and not taking deep breaths. Normally he should be 20-30/minute, but he is falling down to 5 or 6/minute at times. I think he has to cough and well, you know how much he loves to do that. He has had chest PT a few times already, with 2 coughs so far. Nothing too alarming but something to watch nonetheless.

Devin and I got out for a few hours today to the mall and to a couple rummage sales. We got a good deal on the Bath and Body Works foaming soap. I LOVE the sweet pea soap and so do all the nurses that come in, so I stocked up! We also got Dave his Father's Day gift. It was nice to get some fresh air and have a little break while Daddy was on duty. They need to have someone in his room at all times with the stunts he likes to pull. Now I am wishing I had gotten some ice cream or chocolate while we were out....LOL

Here are some pictures.

Hope everyone is having a great weekend. Thanks for all the notes in the guestbook!

Love, Karla

Saturday, June 14, 2008 2:52 PM CDT

Friday, June 13, 2008 3:25 PM CDT

Jacob has moved out of the PICU. After he settled in for the night, things seemed to get better. In fact, both of us slept through the night. Actually Jacob has been sleeping since surgery except for the episodes of not breathing. That is until we moved back onto the floor and I turned on his music. It was the funny thing. He was in a dead sleep and the second he heard his music from home, he woke up with wide eyes. We saw a couple of small smiles and sassy britches shook his head no a couple times. We even heard his sweet voice again. This all lasted about 5 minutes total, but it's a start.

Here is a statue of Michael, waiting for surgery to be over.

Devin was doing mouth care for Jacob.

Do you like Devin's new nipples?!?!?!? LOL He was having a really hard time yesterday after seeing Jacob crashing over and over, so child life did some training with him and gave him a bagful of hospital stuff.

Michael went back with my mom yesterday and is staying at my sister's. Michael and Matt should have a great time together. They have been wanting to spend time like this together for a long time. Devin is here keeping busy with the playroom, Wii, Playstation, Nintendo, crafts etc etc that the hospital has. It's nice to have such a great child life here.

The new info for the room is at the bottom of the page.

Love, Karla

Thursday, June 12, 2008 10:08 PM CDT

I have no idea why my entries keep disappearing! They will be on here for a while and then go back to a previous update! Anyway, Jacob has had a really rough time after surgery. He quit breathing in recovery for 4 seconds until the nurse bagged him. He is now in the PICU. He stopped breathing quite a few times in here and has been bagged to get his sats back to normal. He has dipped down to 17 quite a few times and will stay there for a little while before finally taking a deep breath. He has blow by oxygen on. He has gotten pain medication, which I think has helped a lot. His foley catheter hasn't really produced much output, but the super pubic catheter, which is going into his bladder, has been putting out a lot more, mostly blood of course. He is resting pretty well right now. Hopefully he will behave himself and will only need one night here, then go back to the regular floor. Like always, Jacob has his own way of doing things.

Love, Karla

Thursday, June 12, 2008 10:08 PM CDT

Thursday, June 12, 2008 9:37 AM CDT

Jacob was brought to the surgical floor this morning at 6:30 AM. We had the nurse and anesthesiologists come and talk to us, then he went the the OR at 8:00. It was so cute....we prayed with him many times and when I asked him to fold his hands, he put his left hand on his right :*)

We are still waiting to hear about how things are going. Continue to look for updates below!

10:00 AM update
Surgery started at 9:15.

10:20 update- everything is going well.

11:20 Everything is going well.

12:20 Half way done.

1:20- starting to close up

1:50- surgery is complete!

2:30 update: Doctor Kramer came to talk to us. Everything went very well. His bladder was 4-5 times thicker than it should have been, so the decision to operate was definitely the right one. He took a huge piece of his intestine to make a patch for his bladder. He also took his appendix to use for the MACE procedure. That stoma/hole will be right below the belly button. There is a tube in his bladder and through the skin right now. That will be removed in 3 weeks along with the tube in his MACE. The one in his bladder will close and heal while the MACE will remain open. We will use that stoma to flush his bowels. We are still waiting now, at 3:30 for Jacob to get out of recovery.

Thursday, June 12, 2008 9:37 AM CDT

Jacob was brought to the surgical floor this morning at 6:30 AM. We had the nurse and anesthesiologists come and talk to us, then he went the the OR at 8:00. It was so cute....we prayed with him many times and when I asked him to fold his hands, he put his left hand on his right :*)

We are still waiting to hear about how things are going. Continue to look for updates below!

10:00 AM update
Surgery started at 9:15.

10:20 update- everything is going well.

11:20 Everything is going well.

12:20 Half way done.

1:20- starting to close up

1:50- surgery is complete!

2:30 update: Doctor Kramer came to talk to us. Everything went very well. His bladder was 4-5 inches thicker than it should have been, so the decision to operate was definitely the right one. He took a huge piece of his intestine to make a patch for his bladder. He also took his appendix to use for the MACE procedure. That stoma/hole will be right below the belly button. There is a tube in his bladder and through the skin right now. That will be removed in 3 weeks along with the tube in his MACE. The one in his bladder will close and heal while the MACE will remain open. We will use that stoma to flush his bowels. We are still waiting now, at 3:30 for Jacob to get out of recovery.

Wednesday, June 11, 2008 6:47 AM CDT

Good morning. The poop capades started last night with tons of diaper changes throughout the night and early morning. Jacob had a little gagging at first, but with venting and stopping the GoLytely (that somehow just sounds so wrong to me!) for a little while, we prevented major puking. The nurse only woke me up once to ask a question which I thought was pretty thoughtful given that some really don't care if they wake you up or not. He was changed every hour and has a very sore bottom now, but we are definitely making progress in the bowel cleaning out department!

We had a nice day yesterday, getting settled in and basically hanging out until things started to literally move. The IV team came in and got an IV on the first try without even a cry from the boy. Believe me, I took down his name. So Chad better be ready for me to call on him next time Jacob needs an IV! LOL

Miss Trista, Jacob's aide from school, stopped by last night with her daughter to visit. We had a great time talking and laughing. Aubri is too darn cute and entertained us. Here she is checking out Jacob's wheelchair. Notice how she HAD to put her cup in his cupholder!

Jacob was super quiet until just as Trista was ready to leave, then he wouldn't stop talking!

Here's Jacob talking to Trista and whining because she had to leave!

I think today will be relatively the same as yesterday. Tomorrow morning he will head to surgery. Not sure yet what time. The urology resident stopped by yesterday and made me feel much better about surgery. He did say that Jacob's pressure was better, but still a little high/borderline so I was happy to hear that. It's just so hard sometimes knowing you are doing what is right. The urologist did agree with me that Jacob is SO not straight foreword in anything.

Hope everyone is having a great day.

Love, Karla

Sunday, June 8, 2008 6:35 PM CDT

Monday update!

I didn't want to take Sunday's update off yet in case some of you didn't get to see his pictures and read about his latest adventures.

Today, Jacob had his urodynamic study to check the pressure in his bladder. It has improved greatly. That is good news. However, this is where the confusion comes. The surgery would help increase the size of his bladder. This in turn would help with the pressure in his bladder. However the meds have done that without the surgery. The surgery would also help with the reflux. The spinal surgery helped that somewhat in that it went from a Grade 5 reflux to Grade 1. Now we look at the fact that he is still having UTIs. Cathing should have stopped those from happening. Obviously it didn't. So why is he having UTIs and what do we do? Well, after weighing pros and cons, the urologist feels a bladder augmentation would still be a good idea. He will also do a MACE procedure for his bowel cares. Now comes the nausea part....I am just not sure what to think of any of it. I am not sure if I am scared of the unknown, of the point that everyone says this is a BIG surgery, of something going majorly wrong, of doing this and it just adds more worry and stress, or all of the above. Is my fear and worry telling me this isn't a good idea or is it reminding me that Jacob has major medical issues that sometimes I'd rather forget about? I am getting sick to my stomach just thinking about it.....please pray for me that I have a settled heart when it comes to this next big step.

Oh and to add another bit of excitement to our day, Jacob is not getting admitted until the morning so we are staying at a hotel. I didn't pack most of his meds because he wouldn't need them. Luckily I grabbed extra catheters. UGH. Regardless it has been a relatively quiet night hanging out here with the boys. I will update tomorrow with more details.

Karla

What a stormy, yucky weekend! It stormed so hard last night, it knocked the power out for almost 2 hours. It thundered so hard, that it literally shook the house. One time, it hurt in my chest, it shook so hard!

Despite all the excitement outside, the boys found plenty to do. They were all involved in playing WWE wrestling.

Even Jacob had to get into the action!

And here he is being extremely cute as always!

We are all packed and ready to go. In all my analness, I made sure the clothes were all washed and put away, house cleaned, floors mopped and vacuumed. We can start a wager on just how horrible it will look when I come back. Guaranteed on that one. Let's just say Dave's idea on clean and mine are two totally different things.

We plan on leaving in the morning, starting the day with tests and ending with being admitted for the most super poop blaster of them all. That should bring about some real entertainment. I will update more than likely tomorrow with our room number and any other exciting info.

Friday was the last day of school. Michael is now a SOPHOMORE, Devin a 4th grader, and Jacob a 1st grader :*) Jacob had his Kindergarten graduation.

Here is Jakey getting his diploma. :)

And answering Mrs Klinge if he wanted to be a 1st grader. You can see the smile underneath :)

Sporting his diploma.

And another picture with his Kindergarten teacher. There was an assembly in the morning with a baseball theme. The school always has such awesome activities for the kids.

It's weird to think Jacob's going to be in 1st grade. I look back at his Kindergarten year and it reminds me of All I Ever Really Needed to Know I Learned in Kindergarten
by Robert Fulghum. This is my own version....

All I Ever Really Needed to Know I Learned When my Son with Disabilities was in Kindergarten
by Karla Schroeder

Most of what I need to know about how to live life, what is the right thing to do, and how to simply be, I learned when my son with disabilities was in Kindergarten. It was in that room that many lessons where learned and it wasn't just the ABCs and 123's.

These are the things I learned:

-Kids are very accepting, any negativity is a learned behavior.

-Kids are more aware of the similarities than the differences.

-Some of the best smiles and belly laughs come when your friends sing you the ABC's and count by 1's, 5's and 10's.

-Work is much more fun when a friend encourages you than when an adult does.

-Special needs equipment and toys are very intriguing and often much more fun than the other things in the classroom.

-If all the kids can explore these things, they aren't seen as some sacred piece of equipment or toy, but rather something that helps my son learn.

-There is nothing "wrong" with my son. He is "Just Jacob" and wonderful just the way he is.

-Wheelchairs are awfully cool and very fun to push! Lists often need to be made on just who is going to have a turn this time.

-The special education/resource room is an awesome place filled with really cool stuff to play with, especially when shared with friends.

-Friends are the biggest cheerleaders, show amazing compassion, and give the best hugs!

-Friends know your favorite color, favorite animal, favorite songs, and the things that make you laugh the hardest!

-It's amazing how one child can be known and loved by everyone in the school from the lunch ladies, to the janitors, to the nurses, teachers, aides, office staff, and kids in all grades.

-The incredible joy in being invited to birthday parties even though you can 't play the same way your friends do.

-The even sweeter joy in knowing your friends just want you there, and that the fact you can't play the same way they do isn't even considered when you were invited.

-Even when you are allergic to both lunch choices, the lunch ladies make you something really yummy for lunch!

-Being one of the kids first is much more important than the complexities it takes to actually make that happen. No matter how it needs to be adapted, planned, or how many people it takes to make it happen, being a kid first is priority.

-There is nothing sweeter than just being......being a kid not a disability, being a friend, being included, being wanted, being loved....simply belonging...

Love, Karla

Wednesday, June 4, 2008 1:55 PM CDT

Hello everyone! Pictures of the F.R.O.G. garden are on the photo page! It turned out really cute. The pictures don't do it justice, but you get the idea.

Jacob's cultures came back with something growing I have never heard of, so I quickly forgot the name of it. He loves his bacteria I guess...can't stick with just one you know! LOL He was put on some antibiotics and will hopefully be treated before his surgery.

I am in the "getting ready to stay in the hospital" mode. I am trying to pack, get bills paid, update my computer and cellphone with necessary email addresses and phone numbers, and update all of Jacob's med lists and medical info I like to share with the medical staff. So far, so good.

Here's some random thoughts from the week.....

The mosquitoes are horrendous around here! The boys and I get bit so easily, while Dave never gets bit. I guess we are just sweeter than him. Devin said to me, "Mom, why did God make mosquitoes?" I told him that was a very good question! Devin said, "Well when I get to heaven that is the FIRST thing I am going to ask Him!" LOL!!!

I was picking up Michael's birthday pictures at JcPenneys yesterday and the photographer was asking a lady on the phone if her son was crawling yet. I got lost in thought wondering what I would have felt if someone had ever asked me that or if I was just so quick to make sure they knew he was disabled first? Anyway, I must have really been lost in thought because another photographer was trying to get my attention to help me, but didn't want to scare me. It was kind of a weird thing to think back to him being little again....

Jacob is deciding every now and then not to want to drink his milk. He totally turns his head away with a sassy look on his face and will say "ah da!" Nice. Such an attitude!

Another child in Jacob's special ed room screams really loud sometimes. Jacob has been so sensitive to it lately and cries in the most scared cry ever. It takes a long time to calm him down. Last night I was talking about it to him and how he was scared, etc. He was so serious looking. I asked if he likes when the child screams and he shook his head NO really emphatically!

Today Jacob is swimming at the water park! I hope he is having a great time! Hopefully I will have some pictures to share!

Love, Karla

Sunday, June 1, 2008 8:10 PM CDT

Keep on swimming, swimming, swimming.....

Jacob as a UTI. Obviously, the surgery is definitely needed. And obviously the two of us are so connected it isn't even funny. How is it that I can tell something is going on with the slightest of clues? It amazes me. I brought urine in on Wed because I knew he had something brewing. Tests showed it was negative. Mom knew it was positive. And so we waited until this morning he was feverish, throwing up, and definitely sick.

We are always faced with the dilemma on the weekends if we should go to the local walk in or head to Rochester where they know him better. We decided to go to the clinic here and I couldn't have been happier though with the walk in doctor we had today. Not only did he talk to Jacob and tell him what he was going to do, but he praised him and treated me like I knew what I was talking about! Because the doctors and nurses here don't always see kids with the extent of complications that Jacob has, they don't always understand when I come in with a urine sample or know the things that I know. Anyway, I thanked the doctor for treating us so kindly and for accepting that I do know what I am talking about when it comes to Jacob. He said that there are times parents come in there for every little thing hysterical, yet I obviously knew what the he** I was talking about! And thanked me for cathing him, etc. Jacob got a shot of rocephin and will see the pediatrician tomorrow. Not sure if she will give him another shot until susceptibilities come back or what. We need to get this one treated so he can have his surgery next week.

The final week of school is here! It's hard to believe, yet it feels like Sept was SOOOO long ago! It's weird to think that he was ever in preschool to start with. I am so glad we took him out of preschool and put him into Kindergarten instead. The other day, I was thinking that I won't have a Kindergartener anymore. Devin being the smart aleck that he is, said, "He'll be in 1st grade, then 2nd grade, then 3rd grade....!" Darn kid!

Hope everyone had a wonderful weekend!

Love, Karla

Thursday, May 29, 2008 4:44 PM CDT

Hello everyone! It is a very gloomy day outside. It looks like it could start storming anytime now.

We are definitely winding down on the school year. The kids will be out on Friday, June 6th. A group of us with DeafBlind children are going to get together on Saturday the 7th and take a cruise on the Mississippi River. It should be fun! We had plans of doing this a few weekends ago, but it didn't work out, so we are going to try again. It is always fun getting together with other families. On Monday the 9th, we will head to Rochester to begin bowel prep. At least we are going to have a nice weekend before leaving.

Jacob went golfing yesterday. He had a great time. Next week, he is going to a water park for the day. The school nurse and he will be busy floating down the lazy river :) The adaptive PE teacher is so wonderful about planning such fun activities for the kids.

We have had a couple breakthroughs with getting Jacob to answer more or yes instead of the constant whining when he wants something. It's always so cool to see him make those connections. And of course he thinks he is cool too!

Not much else new here. We will have to start thinking about packing and getting things lined up for when Jacob is hospitalized. There's always so much to take care of and think about, so it's best if I start early. Michael will be spending some time with my sister. My nephew is so excited he is coming since they are the same age. Devin will probably stay with me. Dave will only get a couple days off, so I will be doing it on my own except for the weekends. I've had some friends promise to come for visits too which will be nice. We are looking at 7-10 days of hospitalization at least following surgery. Hopefully Jacob behaves himself this time.

Hope everyone is having a great week!

Love, Karla

Tuesday, May 27, 2008 7:29 AM CDT

Just call me Superwoman

Sometimes I feel like I should be donning a cape because it is obviously supposed to fit on me. However, this mama doesn't want the stinkin cape. Somehow when I am doing something outside of just caring for the kids and the house, such as yard work, paperwork and emails for my 2 positions I hold with special needs families, or actually doing something for myself, I am still supposed to be able to do it all. Imagine making Jacob his supper and going out to work on the frog garden a little more, only to come back into the house an hour later and he is sitting in the dark dining room still feeding himself while his father is enjoying watching tv. I guess some people are clueless to the surroundings. Like I said, I am Superwoman. Because not only did I finish feeding Jacob, clean him up, get him ready for bed, have him puke his supper back up, and have to listen to a hungry cat meowing, I helped the other two boys with supper and bedtime routine and got Jacob's stuff ready for school tomorrow. And wouldn't you know that the once clean house doesn't even resemble the house I cleaned yesterday. Somehow the male species has no idea that what comes out of a cupboard really DOES go back into it or that dirty dishes can go into the dishwasher. Novel concept. My weekend was made complete by not only having to wash our own clothes but by being expected to wash someone else's too. Let me just say that was NOT my job.....I'll leave it at that.

We did have a fairly nice weekend despite my cape getting in the way. We grilled out, went to a graduation party, and the kids got to go on the slip 'n slide which has been bugging them since the snow melted, I swear.

Jacob has turned into a complete whine machine which adds so much joy (NOT!) to our days. He really needs to learn some words to help out in his daily whining. If we say the right thing that he wants he lets us know, but sometimes it's not that easy to guess.

Jacob has also turned into a bookworm! He loves listening to stories on tape. He listened to 4 last night and whined everytime they were done. I did get him to sign in his modified way for more, so that was a good start. He listens so intently it's funny to watch him.

Today Jacob is celebrating his birthday at school. I am going to pick up some ice cream sandwiches and bring them in. I think the kids will enjoy that.

Hope everyone had a great Memorial Day weekend.

Love, Karla

Friday, May 23, 2008 7:33 PM CDT

Hello everyone! We are finally enjoying many consecutive days of beautiful weather! We are attempting to get our frog garden completed. Sometimes I wonder why the heck I start something when I have lots of other things to do around the house, etc, but then again, it will be so cute when it is done. Michael bought me a very cute frog for Mother's Day to add to my garden. I don't know how much of a garden it technically is going to be since there won't be a lot of flowers in it, mostly frogs!

Jacob has had a wonderful week at school. Tuesday, he went with me to the high school for a presentation in a health class. This is the 3rd time I have done this for this teacher's class, and I enjoy it everytime. I had to bring Jacob's DVD player because he has been SOOOOO whiny lately. It drives me insane. He wants to talk so much and tell me what he wants, but the only way he knows how to do that right now is by whining. It's been the theme to the week. At PT this week, he whined so much just to get her to start counting. When we asked him if he wanted to count, he would smile or say YEAH! He obviously knows what he wants, it's getting out.

Not much planned for this weekend. Sometimes those are the best kind :)

Hope everyone is having a great week. I am off to play a game with the boys. Gotta love a great rummage sale find.

Love, Karla

Saturday, May 17, 2008 3:42 PM CDT

Another week gone and another closer to the end of school.....and Jacob's surgery. I realized that my lack of updates has meant I haven't shared a lot of what's been going on around here lately!

Jacob had his Kindergarten Music Program and of course he was the cutest darn kid up there! He smiled and smiled and smiled and smiled with every song. (Never mind the freaky eyes, the lighting is always weird for programs and no matter what I do, I can't get the red eye to take that away.)

It was so darn bittersweet to have my Kindergarten boy in the program.

He played an instrument for 2 songs and held a fishy sign for a song.

He thought he was pretty darn cool. Trista held him on her lap, so he was level with the other kids. She also helped him with all the arm movements which he was fabulous at!

Such progress :)

We had Jacob's annual IEP. Everyone is very impressed with his transition into Kindergarten. He is doing so well being there full days and working with so many different people. Everyone had to agree that his social skills are definitely his biggest strength. With the desire to communicate so great, we are going to take the next step with his auditory scanning and began using a mini Auggie. He will listen to the choices he is given and decides what he wants. Right now, he is starting with picking foods he enjoys. It is a process and he is in the very early stages of understanding it, but I think he will definitely learn. He has already gone through the first 5-6 stages of auditory scanning, so he is definitely "teachable." I just love this kid so much :)

Jacob went to a birthday party two weeks ago and again this week. He has been asked to 3 birthday parties this year :*) Here he is with his buddy Izaak.

I felt so bad for Izaak's family because just before the party started, his little sister had a seizure and went by ambulance to the hospital. His aunt, along with all the rest of us moms helped with the party so Izaak could still have a wonderful birthday!

It has been a very busy time with field trips. Jacob has gone bowling and swimming again, which is always FUN. He also went to the farm with his Kindergarten class.

Okay, I know that farms stink, but DANG, this farm was really bad. Needless to say, I had to Febreeze his wheelchair!

Jacob's friends are so incredible with him. I noticed how so many of them had to come and "check in" with him every now and then...with a touch or to stop and talk to him. Isn't this sweet?

Both Devin and Michael have had their birthdays. I now have a 15 year old and a 9 year old. WOW. Michael's birthday was May 15, so this year was his golden birthday. Devin had a rollerskating party with friends a few weekends ago and Michael had friends over last night. I don't think a whole lot of sleeping actually happened.

Medically, Jacob is doing pretty well. He is almost done with his antibiotics for strep. We are continuing going to PT to help stretch him. He loves seeing Stacey and now whines until she starts counting to him with each stretch. LOL We don't have any plans for Mayo this month. June 9th will come soon enough!

One more incredibly cute picture to share with you of my niece Lauren.....it should be called, "Who's been sitting in MY chair?!?!?"

Love, Karla

Sunday, May 11, 2008 5:46 PM CDT

Since I was a little girl, I always wanted to be a mom. I played with dolls for years, I loved anything and everything about babies, and wanted to work with kids when I grew up. In my perfect plans, I always dreamt of having 4 kids....a boy, a girl, a girl, and a boy. Obviously those dreams didn't come true.

I became a mom for the first time at age 21. Just 14 1/2 short months later, I became a single mom. I wasn't about to let a divorce change my plans, and so I continued on, sometimes with just a few dollars to my name, and graduated from college with a degree in elementary education/early childhood.

A couple months later, just after starting my first teaching job, I married Dave. When we decided to start trying for a baby, we realized that both of us had fertility issues. After 19 months and many infertility procedures, we were blessed with a positive pregnancy test. I was sure I was having a girl....remember the boy girl scenerio in my mind? Well, Devin was definitely not a girl! All the things that I didn't get to do the first time around became so much more important to me. I had natural childbirth, nursed, had a job so we could actually afford things for him.

And then came the day when I became pregnant all on my own. Talk about the biggest shock of all! And even though I knew I was pregnant, I never could wrap my mind around it. I thought maybe when I had the ultrasound it would become more real. And besides, this just HAD to be a girl this time! Imagine our complete gut-wrenching shock when not only did we find out it was another boy, but that something was seriously wrong with him. The few seconds of disappointment because I wasn't having a girl turned into feelings of shame for even caring about that in the first place....we were dealing with something so much more serious than the sex of the baby.

In my wildest dreams, I never would have thought I'd ever experience what I have....single parenthood, infertility, and serious medical issues. I have done things and seen things I never thought I could handle. I have strayed way off the path of my perfect dream. But God has led me on a different path He chose for me. Sometimes I may not understand it, sometimes I totally want to disagree with it, sometimes I mourn it, but mostly I lovingly embrace it. Afterall, I wouldn't have a Michael John, a Devin Wayne, and a Jacob David that I love beyond measure had my plan been the one God chose for me.

As for the girl? Well, I'll just have to wait until my boys give me a daughter-in-law :)

Happy Mother's Day to all you wonderful mothers I have met along my own journey into motherhood. You all deserve the best.....

Love, Karla

Tuesday, May 6, 2008 6:30 PM CDT

Sorry it's been so long since I wrote. As the school year winds down, we are in the midst of field trips and school events. Jacob went to a greenhouse/nursery last week to see all the flowers. Devin went to Norskadalen, which is a Norwegian heritage center, as part of a unit they were studying on the pioneer years. Michael was preparing for Confirmation on Sunday, so we had a potluck on Wednesday night. Sunday was Michael's big day. It was a very service and very special day for him. We had lots of family and friends at the church and to the house afterwards. I had made a slideshow set to My Wish by Rascall Flatts for him and also gave him the scrapbook of his first year and a scrapbook of his faith journey in the church. Michael was very surprised and it was nice to be able to share with everyone.

Today, Jacob had a field trip to see Greg and Steve in concert and then to the park for lunch afterwards. He had a very good time, but was super sleepy towards the end. We wore him out I guess with all that dancing! He loves music so much and had a smile on his face the whole time. :)

We started PT last week as well to help stretch his right pectoral muscle. He is really tight in there still from his surgery and would often cry getting his shirt on and off. After just 3 days, we have already seen lots of progress. The thought is that it could have possibly come from the positioning during surgery which caused the tightening of that muscle. Jacob, of course, has charmed the pants off of the PT. I used to see her when Jacob was a baby, so she was more than willing to work with him.

Jacob's really started to get mad lately when his food is gone and he wants more or when you tell him that he is done. This afternoon we stopped to get some meds. He was eating the rest of his chips from lunch and when they were all gone, he started crying. If that wasn't bad enough, I then washed his face, which was the surefire clue to him that he was definitely done eating. Well, he started screaming/crying then. It was so hilarious to see him get so mad. It's also so exciting to see so many connections being made and the normal temper tantrums coming out at such appropriate times. I love it.

After a beautiful spring day, it is now storming. And of course it started pouring just as we needed to get out of the van into house. I think that is some sort of law or something....I guess when it rains, it pours.....

Love, Karla

Thursday, April 24, 2008 10:06 PM CDT

Hello everyone! First of all, my mood is much better. Thanks for letting me vent here. It's just so frustrating sometimes when you are told to take care of yourself and there are really no good answers to that in all reality. Just take it day by day and realize the He has the control in this situation, not someone who crosses our path with difficulties and uncertainties over Jacob's needs. I have to keep reminding myself that....not that I forget, but some days I just can't take any more.

Today's MRI went wonderfully. We don't know the results of it yet. That will be sent to us by the neurosurgeon. My sister Sandi came to be with me today. It always helps to have someone there, but extra special when it was my sister. We always somehow seem to have fun no matter what the circumstance. In fact, when I went to get Jacob's clothes from the locker, the nurse said she'd come in and visit with my sister while I was gone. I think it surprises people when you are talkative and friendly in these situations. To me, it's better than sitting there all worried and crying. When there is something to worry or cry about, I do, but sometimes you just have to realize that this is the life we have been given with Jacob and no matter where we are, we are going to enjoy it.

Jacob went to sleep very easily and seemed to wake up in good spirits. One of the forms I had to fill out asked about any special needs, so I added on there about his vision and how he needs you to explain things to him before you do it. This time, it meant all the difference in the world to have him told before they put the mask on, etc. It was a nice experience. The cath team also were called in to cath him. Whoever it is that comes, always knows Jacob, so we have to visit a while. They are my favorite part of the hospital.

Jacob also had his wheelchair adjusted today. I tell ya, that kid can grow! It was just a short while ago that we had a new seat put on and adjusted, but our seating people are so awesome. I just love how friendly and helpful they are.

We hit the mall before coming home. Jacob stayed awake the whole time, munching on his crackers, and didn't sleep on the way home either. You'd think he'd be tired. Well, that is what usually happens after anesthesia, but not for him obviously! LOL

Tomorrow the lucky guy gets to go swimming. The student teacher is not coming this time. She's going to the dentist. I guess the dentist must have looked more glamorous than the chance of cracking her head open again.

Please keep our sweet Maya in your thoughts and prayers. She has been in the hospital for a week now with an infection.

Love, Karla

Tuesday, April 22, 2008 10:01 PM CDT

I had plans of updating yesterday, but thought I'd spare you my mood. Well, today isn't any better, so I'll share it with you anyway.

Remember the plan to qualify Jacob for private duty nursing? Yeah...that's gone well. So well in fact, that the ball was totally dropped on it and no one has even started the process of getting a prior authorization. Nice. And of course no one is to blame. Of course not. Why would they be? I can just get prior auth on my own I guess.

And to make it even better, I get contacted by both home care and respite to update his care plan. Yeah...respite that he hasn't had since November and probably never will have again since we have no nursing to cath him while he is there and home care which won't give meds or cath him. I know it is their protocol, but sometimes it pisses me off that I have to spend my time telling them all about his meds, his cathing schedule, his doctor appts and yet the things that I need them to do to "help" out, they won't. Whatever.

I am told that his cathing, bowel care, and meds fall under skilled nursing and unless the RN in charge wants to put her license under scrutiny, they can't do any of those things. It doesn't take a rocket scientist to figure out he obviously needs an RN or LPN for his care then, but obviously it is the opinion that he won't qualify. WTH? If you can't do what is needed because it is skilled care, then you better figure out something else...but once again, that is no one's problem or concern.

I've been asked numerous times when I am getting the mesh sling for the lift so it can be used in the shower. Well, once again, not something I have control over, but somehow home care has to go on and on about how I NEED to have one. One of the aides came in the other day and started talking about the shower. I told her if she asked where the mesh sling was and how I needed one, I was going to have to punch her in the mouth. Yep. That actually came out of my mouth and boy did it feel good to say it.

It just all pisses me off. We've been sitting here waiting for the prior auth and yet no one has even started one. Why? Because I need to sign a release to do so. And how can I do that if one is not sent to me and the person doesn't have my number or do I have theirs. Nice.

To add to my lovely mood, my computer that was working yesterday is no longer working and I can only imagine how long it will take to be fixed this time. Yes, it's been in before. TWICE. The last time it came back and they didn't bother to tell me it was done. They called me I guess. When I checked the caller ID, no one had ever called. So I am on the one the kids use the most. I quickly changed the homepage from MySpace. Sorry Michael.

Dave decided to clip the dog's nails tonight before a vet visit tomorrow (lucky me gets to do that too!) and the dog jumped, therefore causing blood, lots of blood. And wouldn't you know it conveniently happened when Dave was supposed to be putting Jacob to bed. So much for my night off. It's nice when I have to work from the minute I wake up to the minute I go to bed while some people get to relax. We'll leave it at that.

Tomorrow is a new day. Hope it is better than the last few. Bear with me.

Love, Karla

Friday, April 18, 2008 7:46 AM CDT

All I can say is WOW....I can't even begin to thank all of you for the wonderful guestbook entries. Your words have lifted me up and show me once again just how amazing all of you are. I am so extremely lucky to have so many people who love Jacob and our family. If it wasn't for all of you, there is no way we could have made it this far. Please know that.

I think that Audrey (who is a health aide at Jacob's school) said it so perfect when she said I just want someone to say something. And I am guilty of that too...sometimes it is so hard to know WHAT to say. I experience a weird phenomenon every time Jacob goes through issues....I just want to talk and talk about it and figure it out outloud. I know other special needs moms can relate. It's just like all that is running through my head just has to somehow come out. And most of it might not make a lot of sense, but I just have to get it out.

So to answer the question....my biggest fear is that something will go wrong. Actually it is more about what Jacob's crazy body will do this time that makes absolutely no sense to anyone and will somehow cause the phrase, "I have never seen this happen before" to come out of their mouths. Or the things that aren't supposed to happen happening. He is famous for these. And so the list of what we need to do this time is starting....stay in the PICU a little longer post op, keep the O2 monitor on him longer, start chest PT right away, don't count on a fever as an indicator of something wrong, and pain control needs to be more consistent and not placed on the mama's shoulders. I am also nervous about messing with the bowel since he has had good motility overall, and I just know too many kids who don't have good motility to not want anything to be messed up there. I know the doctor doing the surgery is great at what he does, but he is a very matter of fact, no small talk going on there, so it's different than the normal chit chat that also goes on with Jacob's other doctors.

School has been going great. He just absolutely loves everything about it. Lunch has been a big hit for him lately I guess. He just does so well feeding himself. I love the lunch ladies. Today was an allergy filled lunch, he's allergic to eggs and nuts, and so one of the lunch ladies asked what Jacob wanted today....pizza, chicken patty, or a grilled cheese. Now there is always the string cheese/yogurt option or I could bring a cold lunch, BUT the lunch ladies just love him so much, they go out of their way to make sure he gets something good to eat :) It's above and beyond, but just another reason I love his school so much.

Jacob's music program is coming up soon. I guess he laughs at one song in particular. I am sure I am going to be a blubbering mess watching him. I just love how much he is included. The other day, I went to leave and asked Jacob to smile for me. About 3 kids all chimed in at the same time, "He's ALWAYS smiling!" It was cute!

Jacob will have his MRI next Thursday to check his syrinx and spinal cord where it was untethered. If he is awake enough, we are going to also get his wheelchair adjusted in the afternoon. He just isn't sitting right in it at all lately.

I was supposed to have a rummage sale today, but it is raining like crazy here. Tomorrow probably won't be any better. Our neighborhood has a sale every year and since we are kinda out in the country, not many people come out here unless the whole neighborhood has one. So my living room is packed with all the things I want to sell! And since we don't have a garage, we are out of luck.

Hope everyone is having a great week and once again, THANK YOU for all your support!

Love, Karla

Sunday, April 13, 2008 12:50 PM CDT

Hello everyone. We have found out more information about Jacob's surgery. He will have a urodynamic study done on June 9th and then be admitted for bowel prep. He will have his surgery on June 12th. We will discuss on the 9th whether he will have the MACE procedure done. If he does, he is going to be having 4 surgerical procedures all together in one day.

We are feeling a little overwhelmed by the whole thing. Not because we haven't been down the surgery road before. Not because we don't realize this is needed. And not because we aren't used to the whole hospital scene. It's more because of the reality of it all. Sure, I know that these things happen with spina bifida. I've read the books, I've heard stories, I listen to what the doctors have said at appointments. But there is always that part of you when you get through an appt or test and pass with flying colors that makes you feel like, "Things are going okay right now." It's when the things you have read about or heard about actually start happening and you think, "So THAT'S what it means!" or "THAT'S why it happens!" and you say, "Oh crap." It's the mama heart that hurts and the mama heart that asks why this had to happen in the first place. Not that I'd change Jacob for the world. It's just a two edged sword.

It really bummed me out when I've checked the guestbook and have seen little response to our news. I understand that you may read this and not know us personally, maybe you have never signed, and I know that I am not always the best at signing other guestbooks. It just really helps to see some support in writing sometimes. And no, this isn't a plea to have everyone of you feeling guilty you didn't sign. Just know that these things are hard every time they happen. You don't get used to it just because you have gone through it before. You don't stop needing to vent or have a shoulder to cry on or someone to listen to you for the millionth time.

And it doesn't just end with me and Jacob. Devin wants to go to Bible Camp this summer and wouldn't you know that the first thing he said is, "I don't want to go when Jacob has his surgery." It is in all of our minds and hearts.

We've had a pretty nice weekend, minus the snow and cold weather. Michael's sister spent the weekend with us, so that has been fun. Devin and Jennifer are 2 months apart in age and get along so well. It's nice to have a girl around here too!

On Friday, Jacob went swimming. He had a great time, but the student teacher sure didn't.....she was carrying Jacob to the pool and slipped, cracked her head open and needed some staples. Thankfully Jacob wasn't hurt. Jacob's aide felt horrible of course.

I'll leave you with an adorable picture of Jacob working on the computer at school.

Thursday, April 10, 2008 4:24 PM CDT

I'm finally getting around to posting....the news was worse than we thought it would be. Not only does he need the surgery to fix his ureters and reimplant them into his bladder, he now needs a bladder augmentation where they will take a piece of his intestine to use for the bladder wall, making his bladder bigger. The reflux seemed to have improved, but the pressure in his bladder is way too high. His bladder is oddly shaped and there is a thickening in it. All of this is part of a neurogenic bladder which is part of spina bifida. If we do not do this surgery, he will go into renal failure, need dialysis, and a kidney transplant.

We are also going to discuss if we should go ahead and do a procedure in which he'd have a tube placed on his abdomen to help clean out his bowels easier than the old fashioned up the butt way. There is also a procedure they often do at the same time as this surgery where he could be cathed from another tube or stoma on his abdomen. We should hear from the urologist tomorrow if he is going to want to do either or both of these at the same time as the augmentation.

We will have another urodynamic study on June 9th to check the pressures in his bladder in case they have magically changed after increasing his ditropan yesterday, and then proceed with surgery on the 10th if they haven't. The doctor really has no faith that this med change will help, but in the interim, it's best to try. If he has another UTI, the plan to wait until June may rapidly change. He doesn't want to mess around.

It's not like I am clueless to the fact that spina bifida comes with a lot of issues. But right now, it just really sucks. This is going to be another major surgery with risks and a long recovery. There is a lot of pain that comes with this surgery with all that is involved with it.
We will be discussing pain control in depth and also initiating chest PT right away so that we aren't dealing with the issues we did in January with his spinal detethering surgery.

We saw the neurosurgeon yesterday. He said I did a great job with the incision on his back since it healed so well. I thought that was pretty awesome because most surgeons would say that THEY did a good job stitching him up! LOL Jacob is having an MRI on the 24th of April to check the syrinx and if it has gotten smaller, bigger, or stayed the same. The neurosurgeon will send me a letter with the results so I don't need to make another trip.

Wouldn't you know that the little booger didn't have ONE of his seizures for the EEG yesterday? NOPE. He fell asleep easily and everything and when he woke up, there wasn't a stinkin seizure. However, in the afternoon when he snoozed for a little while, he woke up with very intense seizures. Go figure. The good news though is that he is not having seizures as he sleeps. The neurologist increased one of his seizure meds, so we will see what happens. Here are some pictures of EEG Boy!

He was telling the tech a big story!

"Do I REALLY need to wear this thing?!?!?!"

Jacob is so good natured for these things. He didn't even fuss at all with all the messing around they have to do.

Jacob's shoulder x-ray looked fine. The physical medicine doctor said his pectoral muscle seems to be really tight, and we could do some PT to work on loosening this up.

The pediatric floor at Mayo was remodeled this past year into the 4 ecosystems of Minnesota. So of course I had to take his picture next to the frogs on the wall.

When we were doing the urodynamic study, there was a nurse from another clinic watching the procedure. The nice thing about having someone else there is that the person doing the procedure often gives details about what and why they are doing what they are doing, which is always fun to listen to. During the set up of the test, the tech made some comment about kids with SB have mega rectums because of their neurogenic bowels and lack of sphinter control. So I was joking that Jacob has a new super hero name "Mega Rectum Boy!" Okay, with all that's is going on, I just had to have a little fun.

Devin went to school today only to go straight to the nurse. He has a bad cold, but I think the fact that he heard me talking to the aide about Jacob's upcoming surgery didn't help any. As I went past the lunch room, the lunch lady gave me the heads up that Devin came through, got his breakfast, and that he went straight to the nurse's office. Needless to say, Devin spent the day at home. Amongst some conversation, he said I "deceived" him because I hadn't told him it was a "major" surgery. Such big words for a kid to be using! And so we had a talk about that I did tell him he was having surgery and just like the last one, it is going to be a big one. This whole thing is so complex sometimes, I just can't even believe the dynamics of it. I just don't even know what else to say about it.

Anyway......tomorrow is swim day, so I am sure Jacob will be excited. I think he will even stay awake for it this time! LOL

Between speech and adapted tech, they are working on getting Jacob to use a new auditory scanning device called the mini Auggie. They are going to start having him choose which food he wants based on familiar and favorite foods. I am anxious to see where he can go with this!

Hope everyone is having a good week. I'd love to hear from you.

Love, Karla

Tuesday, April 8, 2008 11:21 AM CDT

I tell ya....I am a walking accident. Not only did I step on a nail last week, last night I got some OxiClean in my eye! The instructions on the container said to flush for 15 minutes and call a physician immediately. Nice. So I rinsed it a while and then called Poison Control. I had to rinse it another 15 minutes and keep my contacts out. It feels a little sore today, but it's not red anymore. If there is some weird way to hurt myself, leave it to me to find it.

Jacob had his class picture today. His kindergarten teacher told the photographer that her main goal was to have Jacob looking up for the picture. Jacob mostly likes to look down and chew on his fingers, so it was quite the feat, but the kids were WONDERFUL at cooperating and having to smile and look at the photographer until Jacob was ready, not just once, but over and over. Chris, Jacob's special ed teacher, suggested singing to him and finally, with a great round of the ABC's, we got a good smile and his head up! It's times like that which kinda choke me up. It's so wonderful that his teachers CARE enough that Jacob looks good....it's just so cool. I can't even really put it into words.

I suppose I should finish packing so I can get moving here soon. Jacob will have an x-ray today at 4:00 and then we are done for the day. After we are done, I think we will head out to some of our favorite places and then kick back in the hotel for the night. I will let you all know how his appts go!

Love, Karla

Saturday, April 5, 2008 9:59 PM CDT

UPDATE: BOWLING PICTURES WERE ADDED! THANKS CHRIS!

Hello everyone!

Spring decided to visit us today! It was so nice outside. The boys played outside for a long time. Even Jacob was outside in his stander for about an hour. Devin and I got busy on our frog garden. And no, it is not REAL frogs! LOL After I wrote that the other day, I thought I better clarify. We have a bunch of FAKE frogs that you buy from the garden section of the store! LOL We are going to plant flowers too once the ground actually thaws all the way! We did get the area cleaned out pretty good and all our frogs in place.

Jacob went bowling this week with this special needs class. They have a ramp with a switch to send the ball down the lane. They will be going again in a couple weeks. Here are some pictures!

Jacob hits the blue switch on his tray to make the bowling ball roll!

He looks a little ticked off in this picture! What were you doing to him Trista? LOL!!!!

Sometimes Jacob does something and I wonder if it's just a one time deal or a "fluke" and then when he does it again, it surprises me. And even then sometimes it takes a few times to really convince me. Well, Jacob has started this thing when we go to the store. Whenever we walk past the toys, he whines. He wants to play with something. So today, we go to Walmart and as soon as the boys mention they wanted to look at the toys, Jacob starts whining! So not only does he understand when he is next to them, now he knows when someone even talks about them! The really funny part though is that he won't play with his toys at home hardly ever but take him to the store, then he will!

Tuesday we leave for Rochester. Jacob will have an x-ray late in the afternoon. Wednesday, we will start early with an EEG to check his seizure activity, continue on with a VCUG and urodynamic study to check his reflux into his kidney, and see the neurosurgeon for follow up after his untethering, the neurologist, physical medicine dr, and the urologist. We will be deciding about bladder surgery that day too. I am hoping to stay at the hotel connected to the clinic so we can just walk over in the morning. It will be bad enough getting up early the way it is. I hate having EEGs because I have to keep him up late and wake him up early so he can fall asleep for the test. Needless to say, that means mom doesn't get much sleep either! Devin is going to stay over with Chris, Jacob's CD teacher. He will have such a great time!

Hope everyone is having a great weekend! I'd love to hear from you!

Love, Karla

Wednesday, April 2, 2008 5:16 PM CDT

It definitely was April's Fool Day yesterday. In fact, it should have been April Fool's Week. I swear, if one thing goes wrong, they all go wrong. Monday, I brought the van in to be repaired from my little run in with a trailer on an icy day. So I figured, hey, we still have the other van with the lift, so I will go pick that up from the place we have been trying to sell it for us. Well, wouldn't you know, there was no power to it at all. Obviously they did a "great" job starting it occasionally this winter. After getting a jump, I go home and it doesn't start again in time to pick up the kids from school. In fact, it hasn't run at all. So we have been using Dave's vehicle and leaving his wheelchair at school. The van should be ready tomorrow. But then again it was supposed to be ready today. UGH

To make this morning even better than yesterday's when the van wouldn't start and the nurse showed up late, we didn't have any nursing this morning, so we were on our own trying to get out the door early enough for Dave to get to work and the kids to school. As I went to jump in the Blazer, my foot decided to find the lovely pile of wood full of nails that just happened to be left buried under the snow from our remodel. Yep, the same boards that Devin stepped on! So now we have 2 down, 2 more to go in our family to require a tetanus shot from stepping on those boards. Way to go!

Devin and Jacob had their teacher conferences tonight. They are both doing very well in school. Everyone is so pleased that Jacob has started coloring. We are looking at some options for comunicating more and also discussed the need for the Hoyer lift at school too. He's just getting so heavy! Devin is reading ahead of his grade level and is doing very well in all subjects. He likes to entertain his teachers too I think.

The snow is pretty much gone now, well except for a few patches in our yard. The neighbors' yards look good, but obviously either the sun doesn't shine as much over our yard or we got a lot more snow! LOL Devin and I have plans for making a frog garden. We have found some frogs to go in it already. Now we just need the ground to thaw out a little so we can get started on it. It should be cute!

Michael and Jacob have this thing together. It cracks me up. Jacob talks and talks and talks and talks to him. They go back and forth forever. Michael crawled into bed with him the other night and shared his shades with Jakey :)

Hope everyone is having a great week!

Love, Karla

Sunday, March 30, 2008 1:21 PM CDT

Hello everyone! We are having a good weekend, especially since garage sales started this weekend! YEAH! Yesterday, Holly and I went out for a while in the morning and even got a chance to eat lunch before needing to head home. It was nice having some girl time. And we found a lot of cool stuff which is always a bonus!

Jacob's UTI seems to have cleared just as quickly as it came. I am still sitting here amazed at that fact since that has never happened before. But who am I to wonder too much. I'm just thankful it is on it's way out! April 9th can't come soon enough. We will meet with the urologist after a number of tests and hopefully will figure out if and when he will have surgery on his bladder. I am really curious what the neurologist is going to think about the increase in seiures he is having. It's been pretty intense in the morning.

This morning, our family had a pretty awesome experience. We were asked to talk to a group of 8th graders during Sunday School at a local church. I think the message was a good one for the kids. Plus, it was fun for Michael and Devin to play pool in the youth room afterwards!

Here are some more pictures to share! Jacob's special needs teacher is so awesome about sending pictures to me!

Jacob was holding the Easter Bunny!

Jacob swimming with his aide Trista. Do you notice something funny about the picture? He is SLEEPING in the pool! LOL

And Devin with his crazy hat on for Dr Suess Day.

Not much else new! Hope everyone is having a great weekend! Leave me a note to let me know you were here!

Love, Karla

Thursday, March 27, 2008 9:56 PM CDT

Hello everyone! We found out Jacob is growing pseudomonas. The funny thing is this time he didn't end up being sick and requiring a hospital stay! In fact, he was only sick on Monday, and woke up Tuesday happy as can be. Knowing he had a UTI and wondering if he was only feeling good because he had just woken up, I questioned if I should send him to school. I ended up sending him since he wasn't running a fever and seemed to be feeling okay, with instructions to call me if he started feeling yucky, but he stayed all day and has not felt sick at all this time!

We found out this week that Jacob will have x-rays and an MRI to check why it hurts so much getting him dressed and why he is so slumped over in his chair still after almost 3 most post-op. The doctor is concerned it is the syrinx causing problems. I don't want to even think about that one. I am glad they are looking into it though. He just isn't totally himself yet.

Today, I was a guest speaker at a local college. It is always fun sharing Jacob's story with others. Jacob was laughing a couple times at something he was amused with and spent most of the time eating his crackers. Everyone got to witness the lovely scream when I took his coat off and on. I tell ya....something isn't right.

If you didn't get a chance to check out the pictures from the weekend, click on the journal history. They are too cute to miss :)

Love, Karla

Monday, March 24, 2008 10:51 PM CDT

Hello everyone! We had a very nice Easter visiting with family at my sister's house. My niece Lauren gets cuter every day! Devin and Lauren played so much. Devin is convinced we should be able to adopt a girl too. LOL Lauren is so gentle to Jacob...it's just amazing that a 17 month old can be so sensitive to a child with special needs. And believe me, she is usually a wild child, so that is saying a lot! Here are some adorable pictures of Jacob and Lauren. Jacob had some goldfish and Lauren just had to check them out, even helped feed him a couple while helping herself to some too! :)

Whatcha got there Jakey?

Let me see those!

Hey Mom! Jakey's got some goldfish!

Can I have some?

Here Jakey, I'll help ya!

Last week, Devin made a clubhouse out of blankets and chairs. He asked Jacob to come in with him. Jacob LOVED it! We have always included Jacob in things like this, but once again we were reminded how he is a KID first before his disability. He screamed when we took him out!

Jacob didn't really sleep last night and either did we. When I cathed him this morning, I knew why he was crying so much. Yep, another UTI. I brought urine in this morning and hopefully we will find out soon what bug is growing so we can treat it. It's been about 5 months, so that's pretty good, but like always, I hate having him sick. I just wish he could catch a break here. This has been his worse year yet I think.

Love, Karla

Monday, March 17, 2008 6:53 PM CDT

Hello everyone! I just realized it has almost been a week since I updated! Jacob's week pretty much consisted of one thing.....SLEEP. He spent most of his school days sleeping or trying to sleep and would sleep when he got home. A couple times he would come home and be awake and stay awake until midnight, and then proceed to sleep in school the next day. One day he came home, fell asleep and only woke long enough to cath and then go back to sleep until morning. You know it was bad when he fell asleep in the pool, his favorite place! We are really not sure what all the sleeping was about except that we restarted his Neurontin on the dose he was on before the taper and the fact that he has a cold.

Thursday was a very delightful day. Why I ever assumed that I could go into the clinic close to his school, get his blood drawn and be out of there within 1/2 hour of school starting is beyond me. After trying twice, the lab sent him to his pediatrician's office. I will say I appreciate the fact that they knew better than poking him more than that. And so off we went. At this point, another ped was called in to do an arterial draw since it is getting so hard to get any blood. Of course, it couldn't just be over though! No.....his blood had to clot. SOOOOOO......we sent the blood we did get to the lab and waited to hear if it was okay or if we needed more. And we did. So he had a heel poke at that point since they needed just a little more and we waited again for some results. The neurologist is out of town right now, so hopefully we will hear from her on what she wants to do about the results. His liver enzymes were slightly elevated and the Depakote levels came back as elevated too.

This weekend, we headed off for Stevens Point for the Wisconsin Center for the Blind and Visually Impaired preschool conference. This is our last year to attend this one. It's always nice to visit with other families and learn a bunch of new things. We had such a great time.

The boys are so excited that tomorrow is their last day before spring break. As Devin says, "It's kinda like tomorrow is Friday!" Jacob had a good day at school today with just one real nap, so hopefully with a few days off, he will be totally back to himself.

Hope everyone has a blessed Holy Week. It's hard to believe Easter is on Sunday already! About half the snow has melted and we are starting to see lots of brown grass, so I know spring has to be around the corner soon!

Love, Karla

Tuesday, March 11, 2008 5:56 PM CDT

Hello everyone! Not a whole lot new around here, so I am not sure how interesting this journal entry will be! Jacob has continued to whine and fuss. After talking to the neurologist this AM, we decided to start the Neurontin again. He just seems like he's uncomfortable and irritated, so that makes me think it's the whole nerve thing still. Plus, we do believe that since he's having more intense seizures, the Neurontin was helping those as well.

We are getting a trough level for his seizure meds on Thursday. Hopefully we will know whether he is metabolizing those at the correct levels or if we need to adjust his meds even farther. The mornings are the worse for him, or actually anytime he just wakes up. Most times you can deal with them because they are so short lived, but lately, they are getting more intense and he is struggling a little while it is happening.

Jacob has a cold too, which makes him pretty miserable and gaggy. I brought him into the clinic yesterday just to make sure there weren't any infections brewing too, but everything looked fine. It's so hard sometimes with him not being able to blow him nose. It would be nice just to get that all out!

I still have no word on respite care and the whole cathing issue. We are waiting to see if another agency would be able to come in and cath. We are also waiting to see if he qualifies for private duty nursing. His homecare hasn't been able to give him more than 3 mornings of care, which really sucks since it's hard to get him ready in time with only 1 hour of help. Plus, they can't help with half of his cares because of their rules and regulations! I am so frustrated about this whole thing. I hate when people tell me how I need to take care of myself or when these agencies are available, but yet you have to deal with the whole BS that goes along with it and you still don't get the help that would actually be HELPFUl! I could say a whole lot more, but none of it would be too nice right now.

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

Love, Karla

Friday, March 7, 2008 6:43 PM CST

Hello everyone! It's been a fairly decent, dare I say QUIET week around here. We had only a few appts this week and overall, I had lots of time during the day for myself which was awesome! So you wonder what I've been doing with my time???? Michael's golden birthday is coming up on the 15th of May, so I have been busy making a scrapbook of his 1st year. So far, I have gotten up to his baptism when he was almost 3 months old, so I have a ways to go, but have actually averaged about 3-4 pages a day, so it's going well. It's strange to look back at pictures sometimes. He was such an extremely cute baby (of course!) It's neat to see so many of the same expressions still on my 14 year old baby! And I was also still married to Michael's dad, so that's weird too, seeing our apartment, etc. Anyway, it's been really cool to do these pages, and since it is my first real attempt at scrapbooking, I think I am doing pretty good!

We are hearing an obnoxious amount of whining in our house lately, and no it isn't from Dave (LOL!) but from Jacob AKA whiney pants. I am not sure if it is behavior, pain, trying to tell us what he wants, or a combination of all three. Whatever it is, it can be extremely annoying. Jacob is almost off his Neurontin, so I am not sure if that is what the problem is. He is also having an increase in seizures. Not sure if they are related?

I got a call today from the Spina Bifida/CP scheduler. We are going back to Mayo in April for an EEG, follow-up with neuro and PMR, a urodynamic study and VCUG for his bladder/kidney reflux issues, and a visit with the urologist to review the results and more than likely schedule bladder surgery. We will also see neurosurgery to see how he has healed from his surgery in Jan, which really surprised me since I was told they did not want to see him for follow-up. There will be a lot of tests and discussions made that day, so once again, we are looking at a busy, complicated day. I think the older he gets, this is going to be happening more and more.

Jacob has also started something else new. It's called complaining about what Mom has made him for supper! Sounds like a perfectly normal behavior huh???? LOL He started screaming the other night when I put food in front of him. Kinda like, "I DON'T LIKE THAT!" without tasting it. Sounds familiar yet? Yeah, so after making him taste it, he loved it, but GEESH! So tonight, he starts eating, then when I asked him if he wanted another bite, fully expecting him to open his mouth, he shook his head no and absolutely refused to take a bite. Nice. It's funny to see him acting so appropriately sometimes. Just not what I ever expected.

And talking about something I never expected......Jacob's classroom makes books and then sends them home with a different child every night, so we can read what the kids wrote. They had been talking about the post office, so they made a book called, "Never Mail a _______" and the kids had to fill in the blank and draw a picture. Well, here I am, reading the book and got to a page with some scribbling on it. Well much to my WONDERFUL surprise it was JACOB'S!!! His very first page in a book that he made all by himself! And so I sat there bawling like a big baby. To totally understand where my emotions were coming from, you have to know that in my wildest dreams, I never imagined a day where he'd be able to hold a marker on his own, nonetheless COLOR and then to have such wonderful teachers and aides who work so hard with him and put his drawing in the book just like everyone else's!!! That is amazing. My boy who was "supposed" to be completely non-responsive is coloring and is part of a classroom. Yeah....you'd cry too :*)

Love, Karla

Monday, March 3, 2008 10:17 PM CST

Despite the smile and no matter what the book says, this Sam I Am does NOT like green eggs and ham!

Well, he might actually like eggs, but eggs don't like him. And usually he loves diced ham, but obviously once the hat is on, he no longer will eat them. As you have probably gathered, it was Dr Suess Day at school and wouldn't you know it, but that same brat that took the last cinnamon roll the other day in the lunchroom, took the last serving of green eggs and ham today. Devin was a little upset that I didn't get him to school earlier! And so being the nice Mom that I am, I was going to make green eggs and ham tonight for him, but he changed his mind once he saw the other things I bought at the grocery store today, so Jacob was stuck with the ham. The more I look at the pictures, the grosser it looks. Kinda looks like celery. It is diced ham, really it is. LOL

And now for the long awaited pictures....my budding artist :)

Just look at the concentration required to create! He has been coloring every day. In fact, today the art teacher was surprised and asked when he started coloring! That is kinda how Jacob works.

I have to smile at Jacob's new trick. He loves to say, "SHH!" It rather funny. He does it a lot at very appropriate times, like when his aide Trista brings him into the room during rest time. Or when someone sings to him that he doesn't want to listen to! Or when he is being too loud, he'll SHH himself. It's sooooo cute how he does it. I will try to tape it and get it on here.

Jacob took a field trip to the post office on Friday, and since he has a PO box, the kids got to open it and help him open his mail! And lucky us had a couple packages in there too, one being this adorable frog blanket from our caringbridge friend Sandy!

Isn't that CUTE?!?!?!

Devin was sick on Thursday and Michael and Dave have been sick the last two days. Hopefully they have kept their germs to themselves and Jacob and I don't get sick. We heard some good news and some not so good news this last week. Good news is that Michael's issue he went to the urgent care for is fine. He saw a specialist and no surgery is needed. The not so good news is that Dave has the beginning stages of diabetes. He has started meds and is seeing a specialist tomorrow. His mom and many relatives on both sides of the family have it, plus the whole weight factor probably doesn't help any. So, changes are ahead.

We so need for spring to arrive around here. This morning we woke up to ICE....everywhere. And wouldn't you know it, we are out of salt for the ramp! Luckily, I found some sand to use so that Jacob and I didn't skate our way out to the van. I really need sun and warmer weather. Now.

Hope everyone had a great weekend!

Love, Karla

Wednesday, February 27, 2008 9:02 PM CST

Hello everyone! No, I haven't forgotten about updating, it's just been weird around here. Between appts for all three boys and trying to get things back in order and caught up around the house, we've been busy.

Monday was Spina Bifida/CP Clinic. Everyone was very pleased with how he was doing considering where he was a couple weeks ago. He has some stiffness in his neck we are trying to loosen up, which of course he does not like. But I found with a little ABC song, he'll do it. Orthopedics was very pleased with how his foot turned out. He hadn't seen it since getting his cast off this fall.

Neuro increased one med because of weight gain. He is right around 45 lbs now. He has grown so much this year! Even with the increase, we have noticed many more seizures this week, and not just when he is waking up either. They are always noise associated, but usually it is just within the first 1/2 hour of waking up. Not sure what to make of them. He was also super tired today at school, but then again, he wouldn't go to sleep much last night. The funny thing is he would cry and carry on and then when I came in there, he'd start talking to me! Nice turning off the tears buddy! So needless to say, that trick didn't last long.

We had to hurry back from Rochester on Monday so Jacob could go to the birthday party! It was so awesome to hear the kids scream JACOB'S HERE! He was so excited about the party. It was so nice visiting with the other parents too. I can honestly say I have never felt so comfortable in a social situation with "normal" kids.... it didn't matter that he wasn't able to do all the things the other kids were doing because he was having fun in the way he enjoys things! He was laughing so hard at the kids in the playplace and when one of the dads sneezed. I was just really nice to feel included and accepted. Here are some pictures with the birthday boy Tristan :)

How sweet and tender is this?!?!?!?

And one with Tristan and Gavin. I had to laugh because Jacob wouldn't keep his head up, so Tristan held it for him. LOL

I'll leave ya with a very exciting FIRST! Jacob colored his very first picture all by himself!!! He held the marker in his hand and used this mouth to steady the marker and move it back and forth. I am waiting for Jacob's teacher to send the pics to me, but meanwhile you can enjoy the finished product!

How cool is that????

Love, Karla

Tuesday, February 19, 2008 12:16 AM CST

NEWS FLASH!!!

I HATE WINTER! This cold and snow is driving me crazy! We are in for 20-40 below with windchills for tonight and tomorrow. UGH UGH UGH

Okay, now back to Jakey :) I think overall, things are progressing fairly well. His nerve pain seems to be less and less each day. There are things we do that will cause more pain than others, so we are trying to adjust those things to make it easier on him. I think his bottom still hurts a lot, but one great thing is the C-Diff came back negative!

The whole pooping thing is still a struggle in the sense that we want his bottom to heal, but without cleaning him out well, he cries from a tummyache. Sunday morning, we were trying to get Jacob ready for church to only start crying about the whole poopin' thing, so as he sat on the potty, I sat and cried with him. It was then that I decided on my motto for the day:

"I'd like to know who forged my name, because I DID NOT sign up for this!"

Aren't somedays like that? Personally, I was in the mood to hunt down the person who forged my name. There are many, many things I have conditioned myself to not think much about. But listening to my boy crying and not being about to make things better just isn't one thing I can get used to.

We finally made it to church and wouldn't you know it, the sermon was about being called to GO follow GOD. Many times, the people chosen were the most unlikely people to follow Him. So I guess, who am I to question "WHY ME?" It should be more like "Why NOT me?" And if God is the one who forged my name, I suppose I really should hunt him down and continue to follow His lead.

Yesterday, I was so sick. I haven't been sick like that in forever. Somehow, I drove the boys to school and then crawled under the covers and slept for most of the day. I'd wake for a while and then go right back to sleep. I am feeling much better this morning thankfully. And the house and kids were relatively still in one piece, so that is good!

I hope everyone is having a great week! We have some appts for the boys this week and then next Monday is Jacob's Spina Bifida/CP clinic. We will hopefully get some better answers for his knee then. It still looks rather nasty.

Love, Karla

Saturday, February 16, 2008 9:47 AM CST

Sunday update: We are back home with special bandages and cream. We will be calling physical medicine in the morning to figure out how to heal this ulcer. We also have stool samples being cultured for C-Diff. We did one sample in the ER, only to get a call just before getting on the interstate that they needed another one since it couldn't be placed in the solution the first one was in. So around we turned and finally got home around 12:30 AM this morning.

Saturday evening update: Guess where we are? No, this is not some sick joke.....we are in Rochester in the ER. I guess we don't have nothing better to do! Jacob got a huge blister on his knee last Saturday. It has not healed at all. Today, when we came home from being out for a while, his knee had been bleeding through the dressing and on his pants. It looks horrible. I called the hospital and they need to see him. I hope it isn't much more than just caring for it, giving us some dressings, etc. But the fact that he has spina bifida and horrible healing with pressure sores makes me wonder how easy this thing is going to ever heal. Plus add on the fact that we think he still has C-Diff. We are waiting forever in the ER since it is packed. Lucky for me I have my laptop and remember the access code to their wireless! LOL I will let you know what happens.

Good morning! Sorry for the lack of updates. I have good intentions every day, but for some reason I never get around to it.

Well, Jacob is getting more and more like himself again. In fact, the whining is in FULL FORCE. It can be rather annoying actually. This morning, Jacob was wanting to get up and carrying ON AND ON to the point I was ready to leave him in the room when his whole body started shaking from trying to MAKE himself cry. How pathetic is that??? Obviously Dad is getting sick of it too because I am listening to a rendition of the Itsy Bitsy Spider that goes something like this: Why do I have to entertain you all the time? It's getting rather sickening doing this all the time. I am getting tired of singing lots of songs so stop your pathetic whining before I start to puke.
I think Dave could have a recording contract, don't you?

The drama, drama, drama continues. We have been reminded again that the whole cathing thing isn't probably going to work at the respite house. One of my option could be to go over and cath him myself. Obviously this wouldn't be much of a break if I am doing this! So anyway, it looks like we will be going back to the drawboard for respite. Our social worker is wonderful, so I am not upset with her, it's just the stupid system. And frankly it gets old.

We did get the Hoyer Advance lift yesterday. Jacob is not sure what he thinks of it, Dave is having fun with the new toy, and I'm excited too, but me being stubborn hates that it came about because of the complaints by the nursing agency. Not that we don't need it. We do. But when you get lectured over why your son who is under the technical weight limit still needs it because he is so "awkward" to carry, it gets old. Okay...I got that out of my system.
LOL And of course Devin had to try out a ride in the lift. Does that surprise you?

We obviously missed the clinic/hospital so much that we had to take a trip there last night. Not for Jacob though, but for Michael. He was having some pain and so we took a detour in between supper and the movie. As we were waiting, Devin was giving us a countdown on how many minutes it was until the movie started and then how many minutes it was since it started. We decided to have fun while we were there and were laughing about this or that. The receptionist commented on how good it was to hear laughter in the waiting room instead of somber faces. I told her we were so used to it and since it had been a whole week since we were in the hospital/clinic, we were having withdrawals. Dave said he thought it was a great way to spend another weekend. It was a good thing we went in because it looks like Michael will have to have follow up with a specialist and possible surgery for the cause of his pain.

Since we missed the first showing of the movie, we decided to go to the late movie. We saw the Spiderwick Chronicles. It was SOOO good! We were the only one in the theater which was weird, but it was nice that we could talk outloud about it during the movie. Dave and I both realized how important it is to make these memories with the kids, even though it was late and we could have easily gone home after the clinic. And we also realized how lucky we are that Jacob is so cooperative. He sat and played his switch over and over and laughed. It was great.

School has been going very well. He enjoyed Valentine's Day and all his treats. The kids have been so excited that he is back. All the teachers missed him so much too, I can tell :)

Here are some pictures of his first week back!

The new swing in his classroom!

Absolute CUTENESS!

And now for the tear jerking moment of the week!

JACOB GOT INVITED TO HIS FIRST BIRTHDAY PARTY!!!!

Love, Karla

Tuesday, February 12, 2008 12:14 PM CST

Hello everyone! Jacob made his big debut back to school yesterday. He was excited, but very SHY! He did very well until mid morning, when he needed a little swing and a little nap before lunch. The afternoon went fine until he had to do some work, which resulted in another trip back to the resource room for another swing. Not sure if the pain was actually pain or the thought of working was painful. We will know if he does it again, who's fooling who! LOL

We are trying to get back into a routine around here. Of course that isn't as easy as it seems. Give me a week, and things should be caught up. We are trying to get back to our nursing care in the morning. Of course, that too needs to involve drama over not having a hoyer lift yet, worrying about getting themselves wet while giving him a shower, etc etc.

The boys are also trying to adjust. All of this craziness involved with Jacob's care directly affects them so much. Michael and I have both talked to his guidance counselor about all the stresses he goes through. Devin is missing his old school and having some issues with other kids. It's so hard being the mama sometimes. It breaks my heart knowing they are hurting too. I think it's hard to understand and deal with as an adult. Imagine being a kid.
We will adjust and overcome. We always do.

I am really getting sick of winter and snow and COLD! I REALLY need that vacation I was talking about. Any takers? LOL!

Love, Karla

Friday, February 8, 2008 8:11 PM CST

We are home:)

Yesterday, we started off with a CT to check for kidney stones. Thankfully that was clear. Next, Jacob had therapy and his wheelchair adjusted. His legs look so long now! They will also be making him a new seat. We had some time before the next appt, so we headed to GI to see if there were any openings. The doctor took us right in. We found out that Jacob has a large fissure in his rectum which is causing some of the obvious pain. She reviewed his test results, and recommended we do another test which was mentioned on one of the reports. We had that scheduled for Monday, but after discussion today, we decided to cancel it since the CT showed what we needed to see. We followed up with neurology, who reviewed things and felt that there were many things that probably contributed to all this pain and felt that whatever they were, things were starting to subside. We changed one med to help with possible stomach upset. I am not that thrilled about it, but we will do what we need to do I suppose!!!

Jacob had therapy this morning and a visit with the physical medicine doctor. We increased his Neurontin and also worked on ways to lift him, sit him up, and put on his clothes without so much pain. It all sounds very simplistic, but when your child cries in pain from even the simplest things, it's nice to have people work with you to figure out how to do it without pain. I can't thank the the therapists enough for all their help. Our doctors, nurse, reception staff, and therapists are amazing. They totally understood that this was not Jacob and did what they could to make sense of what was going on.

I am exhausted. It's always hard to pack up a couple weeks worth of stuff and settle back into the home routine. I will update more tomorrow.

Happy 5 1/2 years old Jakey!!!

Love, Karla

Wednesday, February 6, 2008 9:53 PM CST

Good evening everyone! I am actually writing this before midnight this time! LOL

Today had it's ups and downs. Getting out of bed this morning was once again a very pain process. Once he was in his chair, he was still very stiff and not so happy. I gave him some toast to eat, but he didn't touch very much. Once we got to the clinic for therapy, he decided he wanted the toast. I imformed him that he had had plenty of time to eat it before, that he'd have to wait until he was done with therapy. Let me just tell you, he didn't like that answer all that well. It's funny seeing him be a brat. It truly is. He really didn't want much do to with OT today. In fact, at one point he very clearly told Julie nigh night when asked if he wanted to do something else. Once again, it is rather funny seeing him be a brat.

After OT, we had a little break. We ended up meeting one of our caringbridge friends and sat and talked for awhile! It was so nice meeting you Sandy and your mom and dad! Jacob was very shy at first, but then started warming up a little at the end. We headed off to lunch and then came back for PT. He was in a much better mood and seemed to like the game where he rolled on a therapy ball and knocked over the rainstick. In fact, we heard some pretty awesome belly laughs.

After therapy, we were able to visit with Deb, our nurse, for a while and then headed off to try to hit a couple stores again. I have my favorites here in Rochester, and so I figure if I do one or two a night, it's not overdoing it for him and I can get out for a while. Devin is beyond thrilled that I found him some Ben 10 valentines. I have to find something for Michael too....you know so it's "fair."

Tonight, there was a house dinner put on by a girl scout troop. One of the leaders was with anesthesia the other day when he had his MRI! She recognized him right away, and we had such a nice visit.

It amazes me that Jacob has such an impact on people. I don't know if this will ever stop amazing me. It reminds me of a shared connectiveness, one of God's ways of reassuring me of his presence...in knowing that Jacob is a valuable child of God. There are so many who love him, care for him, pray for him. and value him. It makes my heart so happy.

Tomorrow is the CT scan to check for kidney stones, along with therapy and a wheelchair tune up. He will see the neurologist in the afternoon, as well as attempt to get in to see GI if there are any cancellations.

Thanks for all your thoughts and prayers.

Love, Karla

Wednesday, February 6, 2008 0:34 AM CST

Hello everyone. Getting up this morning was quite the feat. Jacob was really crying after getting up, but he settled down enough to eat his breakfast after I held him. It wasn't long and he needed to lay back down. When it was time to leave for therapy, there was a lot of crying and fussing, all the way to the clinic. Ann saw a lot of the crying too and besides getting him to poop, it was a pretty low key appt. I am beginning to think a lot of his problem is in his tummy too. He is being treated for C-Diff, an infection in the colon, but he has been so touchy on his feeding tube site and not liking when I put anything into the tube.

After therapy, I thought I'd do some normal stuff, trying to get him used to real life again, so we went to the mall. Let's just say, it was not my idea of fun. After screaming or fussing the entire time we were there and attempting to sit down to eat, I asked for my food to go and we left. Once he was back here and laying down, he was fine. Put Barney in and he was happy. Kathy, one of his OT's happened to be here visiting another family and so she offered to sit with him so I could go out for a while. I ended up going shopping a little....actually more looking than shopping, but it was nice to get out by myself.

I am hoping things progress back to normal for us soon. I hate seeing him cry like that. But then he is acting normal the rest of the time. My mind is just full from thinking too much so maybe I'll try not to think so much. I'll let you know how that one turns out. LOL

Thanks for all the messages today. I really appreciate all the support. This week has been hard since it was not planned. I don't feel like I have all the things I'd like to have here, like more clothes, diapers, bibs for Jacob, etc. I had to fill some meds here for Jacob since I am low on a few. The real kicker is that I didn't have enough catheters for him. The hospital gave us some, but the clinic will only give us two. When I went to the Mayo Store, they won't take our insurance, so I could buy the catheters at $2.00 each and the catheters they are offering are not the right ones. They are the ones that gave him blood clots last time. So, it looks like we will have to punt and figure something out. UGH

Oh that is right, I was going to stop thinking so hard. See how well that worked out????

Love, Karla

Tuesday, February 5, 2008 0:44 AM CST

I thought I better get on here and update again. We are staying at the Ronald McDonald House for the week. Jacob saw the neurologist and PT today. He will have therapy every day this week, as well as a CT scan to check for kidney stone(s) in case that was part of the problem. The bone scan had shown just how much urine was in his bladder and also uptake into the right ureter and kidney. Even a BONE scan shows how bad his kidney reflux is! There was concern by the person reading the scan of possible blockage somewhere, however it did improve once we started cathing him. Jacob will also see neuro and physical medicine again at the end of the week.

Overall, I think his pain has gotten much better. He is more himself. BUT there is just something that doesn't sit right with me, and I am not sure what it is. He is still crying about 1/2 the time when he is picked up or moved. Then the other part of the day, we is fine. It is rather pick and choose when it will happen. He did sit in his wheelchair a lot today and was fine. But then when he is ready to get out, you better do it right now. And he is sitting with a really rounded back in it. SOOOO that is another thing to work on, plus he will see the seating people to see if his chair needs adjusting too.

I am so happy to have such wonderful people here who care for Jacob. It's just really hard sometimes to be the mama and figure out what's going on.

It would really help me to hear from all of you reading this site. It's been a really long month. Thanks for all your support.

Love, Karla

Sunday, February 3, 2008 11:30 PM CST

Jacob was discharged today. He was in a lot less pain, but of course as soon as we got here at the Ronald McDonald House he was screaming. It probably didn't help that we had to wait in line at the pharmacy FOREVER for meds that were already ordered long ago. I don't think I will ever figure out that pharmacy! Anyway, he had had enough by the time we got here and laid down for the rest of the night. He is on a few new meds which I am trying to figure out when to give one of them since it can't be given with antacids or vitamins. Therefore the 3 times a day I need to give it will need to be adjusted since the 3 times I now give meds, he is already getting antacids AND vitamins!

The boys are in their glory staying here. They have raided the treats, watched movies, and played too many games already. It always feel like home when we are here. Tomorrow is Bingo, which everyone is excited about.

Monday, I will be contacting the clinic for follow up visits. He definitely needs to be seen by those who know him best and get some therapy hopefully too!

Hope everyone is having a great weekend. Please continue to keep Jacob in your prayers for pain relief and Kindergarten days SOON!

Love, Karla

Friday, February 1, 2008 8:34 PM CST

Sorry it has taken so long to update, but it has been one heck of a day. The morning started with a bone scan. Jacob went down to have dye injected first and then had to go back 2 hours later for the actual scan. Of course, everything looked fine. No inflammation, no fractures, nothing. Which is GREAT news! It just still leaves us with no explanation for the pain.

After many discussions between our Mayo doctors that have seen him every month to every 3 months since birth and the doctors on service at the hospital this week, I am feeling like we are on a little better track toward finding out what is wrong. A big part of me thinks it is nerve pain because of how and when it happens. Of course all we can do is try and guess what is the best thing to do. After a very nice discussion between myself and one of the doctors, I also feel like everyone knows my stand and determination in this.

The PT came in late this afternoon to work with him. The first attempt at sitting up was not good. The second one resulted in him sitting up and actually smiling at songs being sung. After that, he transitioned into the wheelchair and went for a walk. I was impressed. The best part though is that 3 weeks after surgery, we finally saw him kicking his leg again in excitement! He had some leg movement during his exam on Monday, but otherwise there really hasn't been any meaningful movement.

Later tonight, he spent some time on my lap as well and didn't cry as much as he has. The PT showed me another way to pick him up and it seemed to lessen the crying and pain somewhat. It felt so nice to hold him again. That is the part that has been so hard on me.

Hopefully these two good attempts at moving will continue. It looks like we will at least be here through part of the day tomorrow and from there, we may be discharged. It is possible that I will stay the weekend here in Rochester and go to the clinic on Monday for Jacob to see his doctors there if that is the case. It all depends on how he is doing. I am hoping if this is nerve pain, that the Neurontin he is on is starting to kick in soon.

I want to thank everyone for all the support and for a couple very special phone calls and emails from some pretty awesome people. You know who you are. I hope everyone has a wonderful weekend.

Love, Karla

Thursday, January 31, 2008 11:59 AM CST

Well, some results have been coming in and discussions are happening. The MRI showed accumulation of spinal fluid in the lumbar area where the untethering took place. The syrinx and shunt placed in it looked fine. The ventricles are unchanged, so he is not being overshunted. The fluid accumulation could mean there is a spinal leak. One way to know this would be a spinal headache 1/2-1 hour after sitting up. We are having Jacob sit up in bed without us touching him, just raising the head of the bed and so far, he is fine with it being up. The surgeon questioned if some of it might be learned behavior-he knows it is going to hurt, so he cries. While I know he is getting to be a drama king at times, I'd think that overtime, the pain would decrease and he wouldn't still be screaming the same amount now as he has since surgery.

The neurologist came and helped me try to pinpoint where the pain was coming from. It appears to be in his sacrum (lowest part of the spine) and his pelvic structure, plus the side where the fluid has accumulated. He wants to do a bone scan or series of x rays to figure out if there is inflammation, a fracture, or possible infection. There isn't any other sign of infection, so hopefully that is not the case. Orthopedics will probably be involved.

Which leads me to my next AAAAHHHHHHH! Pediatric service comes in and says that as far as they are concerned, there is nothing that appears to be an emergency. He can go home and do these tests outpatient. While I understand that logic to some degree, I also have a child who cries everytime I move him, pick him up, hold him. This has not changed. My son who loves his mama's touch more than air can't stand for me to hold him. I just don't know.....

So here we sit. I told the doctor I want the scans done and the pain management team will be coming to talk. We don't have to agree with the discharge suggestion. The other thing is it's hard for his regular doctors from the clinic to be too involved with the doctors on service at the hospital because it becomes an issue of who is in charge, who's telling who what to do, etc. You get the idea.

I need a vacation. Anyone willing to send me on one?

Love, Karla

Wednesday, January 30, 2008 11:02 AM CST

1:45 PM update

Jacob came back to the room around 12:30 PM. He was awake and very talkative. The positioning was once again painful and the little turkey won't cough because it might hurt, so he is refusing to cough and wincing instead. If he'd just cough and get it over with, but no. He's too stubborn. Respiratory therapy will be coming to do some chest PT.

Jacob has also developed a lovely rash which started on his left hand last night, and by morning it has on both arms and hands. After the MRI, he came back with the rash on his feet too. We are thinking he is having a reaction to the Flagyl. We also found out he has a UTI brewing and so he started some Rocephin too. Talk about a lot of excitement.

Dr Kuntz, Jacob's neuro, called today and wanted to know how we are doing. His nurse also stopped by for a visit. Hopefully tonight Dave will come up for a visit and to bring some more stuff for me. Did I tell you that I only packed for one day? Miss Prepared was living in the land of denial. I was hoping for an appt and to go home or if I did have to stay, I'd just have Dave come up. Well the weather had other plans yesterday, so hopefully tonight, he'll be able to come.

I will let you know when I hear more.

Love, Karla

Good morning. We were woke up this morning to the good news that there was an opening for the MRI, so he got in this morning around 8:30. He had to bring snuggle blankey with and even was given a Beanie Baby frog for the trip by the nurse. Everyone in anesthesia remembered him from his surgery, so that was nice! He was very comfortable with these ladies and even reached up to touch the anethesiologist's face. Did you know they have scents they spray on the mask to make it more fun for kids? He chose bubblegum :)

On the way to the MRI, we ran into the neurosurgeon and his nurse. He was concerned over what has been happening and assured me that when he closed the spinal cord, everything went really well, but you just never know when it comes to spina bifida. There is a chance of overshunting too. Of course, I hear the lovely, "We just normally don't see this!" phrase. I told them that Jacob likes to do things others normally don't do. It's not all that fun having a child who misbehaves you know! LOL

Anyway, the neurosurgeon said it will be a very complicated, long process of figuring this whole thing out. The neurologist came in and also said the same thing. He said if things look okay with the spine and brain, we may have to look at other possibilities.... infection in the bones or joints, inflammation, etc. Let's pray there is an easy answer...or at least one they can fix.

I am trying to keep myself from thinking too much about all of this. It's not worth it to get too far ahead of myself. Please pray for peace in my heart and mind as well.

I found out an interesting fact. You know the whole curly haired mop thing my boy has got goin' on? The seizure med Depakote/Valproic Acid that he is on causes curly hair. While Jacob had curly hair prior to starting his med, it has really gotten curly since being on the med. It also causes hair loss, which he has, but we started him on a multivitamin to help that issue. Isn't that wild?

I will update today when I know more. I am still waiting for him to come back from the MRI.

Love, Karla

Tuesday, January 29, 2008 8:55 PM CST

Hello everyone. We spent the day hanging out, since the MRI schedule was full. He will have his MRI tomorrow at 1:30 PM.

So far, he has had urine, blood, and stool cultured. They are all pending, but the initial observations of the stool shows he has C-Diff. This can be a not so nice infection in the colon, which explains his bloating and not wanting us to touch his tummy, attach his G-Tube, etc. He has started Flagyl, an antibiotic, for the problem.

Jacob spent most of the day sleeping. He has spent time smiling at people who come in though. In fact, he has totally charmed the whole cath team. They all think he is beyond cute.

Thanks for all the prayers coming our way. We really appreciate it!

Love, Karla

Monday, January 28, 2008 5:27 PM CST

We're back...in the hospital. Jacob has just not gotten any better with the whole crying thing. If you move him, he screams. He cannot tolerate the sitting up motion at all. I called the clinic today and got him in to see the neurologist and physical medicine doctors. Both were very concerned. He had an x-ray of his stomach to make sure he wasn't constipated since he also has been very distended,etc. That looked fine, but lots of air in his tummy.

Neurology ordered an MRI for tomorrow to check his brain and spine for the cause of all this pain. There is a high likelihood that he may be overshunted. He will be sedated for the MRI. The neurosurgeon will be contacted about the results as well and depending on the results, Jacob may be headed back to surgery.

Right now, the doctors are working on pain control, cathing and getting a urine sample, and checking his stool for possible infection or virus.

Keep the prayers coming! Our boy just never follows the normal course of anything and so once again we sit and wonder what is going on.

Love, Karla

Friday, January 25, 2008 7:53 PM CST

Hello everyone! Jacob seems to be happier overall and back to himself a little more, but the pain when we move him is still the same. He anticipates it so much that he gets himself all worked up with how much it is going to hurt before we even touch him. It doesn't seem that the pain meds are necessarily even helping with that. I am sure his back muscles are pulling or are painful, even though the incision is basically healed. He is also crying out sometimes too, which is hard to hear.

Tomight has been a little bit more interesting. When I went to cath him, he was screaming, so I began to play "WHICH HOLE IS CAUSING PAIN?!?!?!?" I vented his g-tube and the 2:00 pediasure came back out at me. So then I begin playing the "WHAT THE HECK IS THAT ALL ABOUT?!?!?!?! game. I haven't given him pediasure in a couple days, so I wonder if it just isn't agreeing with him. But then again Dave and Devin had an upset stomach this week. And then there is the fact that the pain med he is on slows down motility in the stomach. I really wish just once when Jacob has something going on, there weren't a million possibilities of what and how and why.

After checking the tube, I decide to use the super poop blaster, with great success. You can tell just how much Devin loves Jacob because while all this is going on, Devin climbs across the bed to snuggle him while we are waiting for results. I warn him not to get too close to one spot because of the poop and his response was a cheerful "I know!" and he goes on singing to Jacob.

After these two options were successful checked, we cathed him and ended up getting a lot of urine plus a very wet diaper. Which leads me to my next gripe.

While we were in the hospital, Jacob was wetting his diapers A LOT. Mind you, he is on oxybutynin and shouldn't have wet diapers because it is a continence medication. Bladder scans and cathing were not always getting much urine, and then the next time, he'd have a wet diaper plus a lot of urine cathed. Anyway, I made the comment to the neurosurgeon that he was wetting more on his own, which was a very truthful comment, plus verified by the cath team and nurses when they weighed his diapers. Well, in a letter from the neurosurgeon to the pediatrician, he made the comment that mom noted he was wetting more on his own, which he was skeptical about, but observed by mom nonetheless. What the heck??? It was not just noted by me, but discussed by all the nurses and cath team! I tell ya...I hate the mom says comments.

And not to leave you hanging, we still don't know what all this crying and carrying on is about tonight. We are assuming he might have gotten the bug from Dave and Devin and his tummy is hurting.

Yesterday, Jacob made a visit to school! There were Hawaiian dancers there, so we thought it would be an enjoyable time to visit. He seemed to like it a lot and even got some hugs from his friends when it was over. He started getting very sleepy right in the middle of the hugs. LOL We stayed with Devin to watch it again with his class. And once again, he had a fan club of kids coming over to see how he was doing.

The kids had a day off from school today. Michael spent most of the day playing XBOX 360 and on the computer. I have had to fight him for my laptop more than once lately! He doesn't seem to like sitting at a desk on the computer anymore than I do!

Jacob spent most of the day watching Barney and taking naps. Then much to his dismay, I made him sit in his wheelchair. Listen to these complaints! Can you tell how much he loves sitting up right now?

Hope everyone has a wonderful weekend!

Love, Karla

Tuesday, January 22, 2008 9:26 PM CST

Hello everyone! We are doing much better today. Today is the first day Jacob stayed awake all day and ate 3, yes 3 meals!!!!

You can see part of his cheeseburger on his shoulder in this picture! LOL

I got lots of smiles and the FIRST giggle I've heard in almost 2 weeks. Jacob was very busy chewing his fingers again which is a good sign he is getting back to his normal self. How absolutely BEAUTIFUL is this face?!?!?!? And how WILD is his hair?!?!?!?!?

Jacob is still peeing and pooping okay on his own, plus I am cathing his normal urine output. Tonight, we had quite the poop fiasco which involved poop on the couch (thank God it was covered with a sheet!)the floor, my shirt and pants plus poop in his hair. I am still trying to figure out the poop in the hair thing! You know he did it up good when it required a shower.

We have follow up appts already. He will see neuro, physical medicine, OT and PT, and the orthopedic surgery Feb 25th and 26th. We were told neurosurgery didn't want to have a follow up, which I thought was odd. He will have a repeat VCUG and urodynamic study April 9th, at which time we will discuss with the urologist if he will need to have the bladder surgery. Let me just tell you, next surgery Jacob will start chest PT right away. I do not want to go down the collapsed lung or shall I say atelectasis route again. Never mind me....I am having fun with all these big medical words. Laminectomy is the other fun word I learned. I know....I need to get a life.

The pain seems to be getting better every day. He's so funny. You can tell he expects it to hurt so he starts crying BEFORE you even literally touch him to pick him up. All you have to do is tell him you are going to pick him up, and he starts crying. So I am not really sure how much it REALLY hurts because of his antics and the fact that he was full out crying and then heard his BINGO song and instantly started SMILING.

Not much else is happening here. I am hoping to start getting some nursing hours again now that we are back home. Hopefully it won't be too long and he can start back to school. I know he misses it terribly. He talked to his friends on the webcam today and he smiled and smiled about that. It just warms my heart beyond belief.

Disclaimer: For those of you who thought I actually SNIFFED his dressing when it came off, trust me I am not that disgusting! I was referring to my lovely passing out, trip to the ER experience I had after my mother-in-law's back surgery. I was so proud of myself for not making friends with the ER staff again as they tried to figure out how someone can pass out from the smell of tape!

Love, Karla

Sunday, January 20, 2008 10:21 PM CST

Hello everyone. So much for the Packers going to the Super Bowl. Dang.....it was good while it lasted. Jacob spent most of the game sleeping, but he looked cute anyway in his Packer jammies and blankie! Here he is smiling BEFORE they lost. LOL

A majority of his day is still spent sleeping, with a few hours of being awake. He seems to be fine until you move him and then he screams. I hope this stage of healing doesn't last too long. It is rather heartbreaking, and I find myself trying to convince him and I it's going to be okay.

Now that we are home and the hospital stay is behind us, I can share some random thoughts about a few details I didn't share at the time.

I am trying to figure out why neurosurgeon residents are always so good looking. Once they are "real" neurosurgeons, I don't think they are so cute, but dang, the residents are something else.

Why is it that these same residents feel that 6:00 AM is a great time to have some meaningful conversation about your son's condition. As if you truly can make sense of what you are saying or hearing. All you hope is that the drool from the night's sleep is wiped off your face and your hair isn't sticking up too much.

Speaking of sleep...I'd like to meet the people who actually make the "beds" parents are expected to sleep on. Do they really think they are even remotely in the bed category? I think each and every nurse, doctor, chaplain, cleaning lady, social worker, even the receptionists need to spend at least one full night sleeping on one of these beds. I'd be curious what would happen to the sleeping arrangements after this.

If you are so blessed to be able to sleep with your child if they so let you, make sure you put up the railings. Not for your child mind you, but for you. They save you from falling off the bed and making a complete idiot out of yourself. Not that I'd know or anything...just saying IN CASE. And make sure your butt doesn't hit the nurse call light numerous times in a row....Once again, not that I'd know or anything, but just IN CASE.

Also if your child decides that he will spare you the torture of sleeping on the "bed," and shares his bed with you, be prepared to contort your body around him and his paraphernalia and lose complete feeling and function in many parts of your body- your arms, neck, hands to name a few.

It is also amusing to me how just because the night nurses have to be awake for their shift, some seem to think you must also be awake. Why is it that everything seems so much louder when you are trying to sleep? I am also still trying to figure out why the cath team was called at 3:00 AM to empty Jacob's bladder. I guess they figured I was sleeping so hard on my luxurious bed that they didn't want to wake me to tell me the details.

Others however, can do miraculous things all night and never let you know they were there. I'd like to know how Jacob had an X RAY in the PICU, and I have absolutely NO recollection of this event. I do realize I was pretty tired after the night before's escapades, but wow...I am still shaking my head at that one.

Let's just say, if your whole family decides to spend the night in the PICU, chances are if you aren't the lucky winner of one of the two sleep rooms, you can expect to stay awake all night. Even though the "quiet" room is given as a seemingly wonderful alternative, please don't let this fool you. There are 3 couches in this room....one for papa bear, one for mama bear, and one for baby bear. All would be well and fine, except you throw teenager bear in there and mama bear gets booted to baby bear's couch and baby bear ends up on the coffee table. Why baby bear thought the coffee table was much more comfortable than the floor, who knows. Once again, you find your body contorted in many different positions because you just KNOW you have to sleep. Yeah right. To make this "quiet" room even more special, it is the proud owner of windows at the top of two walls, strategically placed so the nice florescent lights can shine in your face all.... night.... long.

We are lucky here in La Crosse to have a wonderful cafeteria in our local hospital. Just because they are an affiliate of Mayo, let's just say, the cooks obviously don't talk to one another. Big old Bertha, the not so nice, I don't think she has ever smiled cook, could definitely use some training in making food actually taste good. I find myself sticking to 2 things that are relatively safe....muffins and oatmeal. Why I decide to eat oatmeal there when I rarely eat it at home, is beyond me. Well, maybe it is because they have some good toppings for it. Yeah, that's it. There is one highlight though...the smoothie stand on the way out the door is mighty good. Just don't go there before 8:30 AM...the fruit isn't yet delivered for the day.

I must be really spoiled with my Dish Network and our daily line up of shows because I found absolutely nothing on TV the whole time I was there. I will say though the new video on demand they have is pretty cool. Now if I could just hack into the nurse's code to start the movies on my own, I'd be good. Well, then again I have to have something to keep them running into the room and earn their pay for the day.

You'd all be very proud of me that I:
A: looked at my son's incision the second the dressing came off.
B: smelled the tape that was on the dressing.
And C: didn't pass out from the sight and smell.
No stand ovations needed, just a round of applause will do.

I find that my patience gets smaller and smaller when it comes to blood draws and IVs. Why is it, that some staff can come right in and find a vein and boom, they're done. Then you've got these other yayhoos who stand there saying, "HMMMMMMMM" over and over...."I think I feel one RIGHT here!" while my son's screaming bloody murder. And if one more person says, "It's okay honey, I'm just looking at your hand/arm," and thinks he doesn't know exactly what that means, I am going to scream. He ain't stupid people! I am JUST looking and PAIN go hand in hand.

When I was left in the PICU treatment room with Jacob as we were having oh so much fun with his low sats, I found an amusing new game to play. It's called pulling the red nurse call button. See, most people might assume that this handy little button on the wall is much like a call light on your bed or remote. No, this button is much more than that. It's a really fun way to see how quickly nurses and doctors can respond to your child. Kinda like calling a code. Yeah, next time I think I will ask for the call light before they leave me alone with a very sick child. But the good thing to know is that I think everyone was in the room within maybe 5 seconds.

I find it interesting that the smell coming off the elevator, the sound of the automatic doors, the foot pump soap in the PICU, the toy cars and tractors being ridden down the halls, each room we have stayed in, the sight of baby sleepers, and so much more can cause me to slightly gasp as memories flood my mind. The halls and walls, the elevators and rooms all hold so many memories of days gone by...and yet I know they will hold memories of days to come. There are so many nauseating memories in that place, yet memories I can't really want to wash away either because by doing that, I'd wash away so much of what my son is...strength, love, hope. And I'd also wash away all the memories of relationships that have been formed and reformed and strengthened within those walls. Relationships I wouldn't want to change for anything in the world......

All these things were much a part of our stay this past week, yet the biggest part of our stay was YOU. Your love, support, caring, and strength is what helped carry me through. I am often told what a strong person I am, what a gift I am for loving Jacob the way I do, but honestly it is through the love and support of all of you and God that I am made strong. I would check the guestbook and be amazed at how many people were signing, letting me know that thoughts and prayers were being sent. I felt a love for our family who just wants to do the best thing for our amazing son and brother. It is so wonderful to consistently be reminded of God's grace through all of you. I truly mean it when I say THANK YOU.

Love, Karla

Saturday, January 19, 2008 7:27 PM CST

Hello! Jacob was very happy to be going home. When I told him we were going home, he smiled. When we got to the elevator, he was excited. When we got to the van, he was VERY excited! It cracks me up to see how much he understood what it meant. He sat up in his chair without crying the whole way home. His eyes were so big as he listened to his music. All week, all we have heard is "I DO" stories. On hthe way home He said, "NANA" for mama and "I LA!" for I love too.

Once we got home, I got him all settled on the couch. He slept pretty much the rest of the night. Devin had to snuggle too :)

Today, he has slept quite a bit, but got up to eat breakfast! He LOVES Frosted Mini Wheats, and you'd think he'd died and went to Heaven the way he was carrying on! It was so cute! He fell asleep for a long time after he ate. Here's his smilin' face though!

It was much harder coming home than I thought it would be. I think the emotions from the week have caught up to me. It doesn't help any that my husband and the boys were not so welcoming when I got here. I just wish sometimes that people understood what it is that I go through emotionally with Jacob. It's not easy. I hate to see him hurting. I hate that he has to go through all of the problems associated with his disabilities. I just want what is best for him and for him to be happy and painfree. Hopefully things will be better soon....

Love, Karla

Friday, January 18, 2008 1:06 PM CST

We are heading home today! Things continue to slowly get better. Oxygen sats were fine, lungs were finally clear today, so we will go home on antibiotics, pain meds, and his regular meds. We are hoping to have some PT and OT available at home until he can get back to school. He is still very tired and sore, but I think it will be good to get home and rest.

I will update more later once we settle in!

Love, Karla

Thursday, January 17, 2008 12:46 PM CST

It has been a crazy busy morning with doctors, cath team, OT, respiratory therapy, and nurses in here. Jacob is starting to feel much more like himself. He is jabbering more and even said Hi a few times this morning. He ate a few bites of breakfast this morning. He couldn't quite figure out how to get the toast to his mouth and was gagging at first, so he bent his head down to his toast. It didn't take too long and he figured out how to lift his arm, but it tired him out so much, he took an hour nap afterwards. He sat up in his chair for 15 minutes, which really tired him out too.

He got his oxygen off this morning. Since then has decided to drop his respiratory rate when he sleeps, but his sats are okay. We are trying some new leads on his chest to see if that makes a difference in case it's just not picking it up enough.

Some exciting news is that he is wetting his diaper on his own and pooping on his own too. We had very little residual urine yesterday and Tuesday afternoon. Today, it's been a little more residual, but also very wet diapers. It seems like there has already been some relief from detethering his cord.

His incisions looks wonderful. They are healing well and the steri-strips are coming off already.

We had a really nice visit last night with Jacob's special education teacher and aide. He tried so hard to be social, but would fall asleep mid sentence, just like he did for the school nurses! He is so cute.

They brought Devin with so it was nice seeing him too. He took my camera and said he wanted to take a picture, so all of us were posing, until he turned it around and took this picture of himself instead! LOL

Please continue to pray for Jacob's daily improvement. We can feel your prayers and love carrying us along.

Love, Karla

Wednesday, January 16, 2008 9:13 AM CST

2:40 PM update Jacob moved to the regular peds floor at 1:00, just as Pastor Glenn came for a visit. He is in Room 3-144 and the phone number is 507-287-4411. This is our 4th room. I swear this boy likes to see the sites!!!

I just got a call from Jacob's Kindergarten class. They sang him a song and counted by 5's. Here is Jacob's response to their singing:

Good morning. Jacob is showing some good signs of his personality coming back! He is chatting, " I DO" this morning, in between some crying and funky hiccuping breathing. He is still needing scheduled pain meds and blow by oxygen. It seems like the breathing is labored when the meds wear off. The respiratory therapist just came in and did some chest PT. His lungs are sounding clear THANK GOD! I think we are getting over this hurdle. There was even talk about moving him back to the regular floor if this continues today.

We started some PT and OT yesterday. I am hoping that we can get him back to at least sitting in his wheelchair without pain. We are going to try sitting him up today.

Last night, we had a visit from one of my family advisory committee friends. There was a meeting last night, so she stopped by. Jacob's school nurse and aide stopped by last night too. He tried SO hard to be social with them. He loves them so much. He'd talk a little and fall right asleep, wake up like he remembered they were there and try to talk again, and then fall asleep. It was rather funny to see. Finally the sleep one and he was out for the rest of the night. Last night was the first night he actually looked relaxed while he slept, which is a good thing.

Here are pictures from last night.

And two from this morning:

As you can tell, he isn't yet himself, but we are getting a little closer.

Love, Karla

Tuesday, January 15, 2008 1:41 PM CST

Hello everyone. This journal has been a long one in the making. Jacob continued to maintain his sats while on bi-pap throughout the night and into the day. They just started a trial of putting him on blow by oxygen to see if that will help keep his sats up. They did quite a bit of deep suctioning to clean out his lungs and have used a tool to help vibrate junk loose from his lungs. He will probably start using a vest which will also help loosen things up.

We did hear some jabbering from Jacob. When I told him Daddy was coming, he cried real tears, then jabbered to Dad when he got here. He sure loves his daddy :)

He has spent most of the day sleeping comfortably. For the first time he has let me touch him without screaming.

Here he was last night:

And this afternoon with his blow by while the nurse listened to his lungs.

He still is kinda spacey looking overall, but now at 3:30 he had a 10-15 minute burst of energy watching Barney and showing some half smiles. I know my smiley boy is in there. I think it helped that they switched his pain meds to something a little less sedating. He is now back to sleep and seems to be resting more comfortably.

Dave and the boys headed back home so they can go to school and work tomorrow. My mom and stepdad came today too, which was nice.

I am completely amazed and feel so surrounded by all your love, thoughts and prayers. 5 1/2 years ago when when we first found out about Jacob's conditions and then in the years since his birth, severe brain damage diagnosis and meningitis, all along I hoped and prayed that there would be others who loved him and saw him as the wonder child that he is....not the child who is unable to do so many things other kids his age can do but the Jacob God intended him to be. I so desired the acceptance of others for this beautiful son of mine. I prayed that if I were to take this journey with Jacob, that I would have people who supported us as a family and myself as his mother. I prayed that Jacob would have people who surrounded him with love. It's not easy when things go "wrong" or things are "different" than what many of us know raising our kids. I feel so blessed to be in so many communities, church, school, family, online friends, that care so deeply for Jacob. The way school has rallied around Jacob and our family today just truly leaves me breathless. I can't even begin to tell you all just how much it means to me, because words truly do not suffice.

Love, Karla

Monday, January 14, 2008 9:53 AM CST

Update: 10:30 PM Jacob is now on bi-cap in the PICU. He was breathing really funny tonight a few times, so I asked to check his sats. They were 45. He was unable to hold his sats up, so they put oxygen on him and brought him to CT. His right lung is collapsed and he has pneumonia too. Dave and the boys are here now.

Karla

UPDATE 9pm!!!!!!!!!!
Karla just called and wanted to let everyone know that Jacob is being transfered to the PICU. He was having trouble breathing and his Sats had dropped significantly. They said his lung is collapsed and the plan is to deep suction and start CPAP. I'll update as I know more. Please pray for Jacob and for the rest of the family. Dave is on his way to get Devin now and they'll be on there way up there soon.

It's 4:20 PM here and nothing has really changed. However the one time I heard his beautiful voice was because I asked him about SCHOOL. It makes me want to cry just thinking about it....the one thing he loves SOOO much is what made him talk today. It shows me just how much he is loved at school and how much he enjoys it there. He has been listening to his CD's and books on tape from school and doing a lot of sleeping.

Physical medicine came by and talked about his pain. He is still not tolerating touch at all, so we are going to start neurontin which can help with nerve pain. It is very possible that the nerves are very sensitive right now because of the surgery.

The swelling is still there, but we stopped IV fluids, so hopefully that will solve that problem. Mr. I LOVE to EAT is averaging 2 bites today, with the 2nd bite sitting in his mouth as he sleeps. Not too safe.

The sitting in his wheelchair did not totally fly with him, in fact he was extremely pissed off that I would even consider putting him into a chair. The screams were alternated with little naps and then he'd wake up, to scream again.

I cannot say thank you enough for all the wonderful guestbook entries, phone calls, and emails. If you called and I didn't answer, it's because my cellphone only works in a few given spots in this room or in the hallway. You can always call me in the room too.

Lots of love,
Karla

Good morning. We are seeing a lot of the same things around here....crying everytime he is moved, sleeping, crying again. The neurosurgeon is concerned that he is responding like this because by day 3 he should still have some pain or discomfort, but not to the degree he is. I know he doesn't feel good when I can't touch him very much without him crying. He is getting pain meds regularly, so it isn't that they are neglecting that piece. And he must be getting some pain relief in order to sleep, but things are not getting better in my opinion.

He is third spacing fluid now too. His arm and foot are swollen, along with his face. His bandage came off his back this morning. He sure has 2 long incisions!!! His catheter came out this morning too and will have go back to the 4 times/day cathing. He decided to poop, so we had a mess to clean up. I held him while his bed was changed and he held his breath until he was a nice dusky shade from pain obviously. Dr Driscoll in physical medicine and our nurse Deb are coming to discuss these issues today.

I am going to get him up and work on breakfast now. We will see how he tolerates it. We are supposed to push it a little.

The toddler in the room across from us coded this morning. I heard the nurse scream for help and people came running. Her mom was sobbing and after they got her stabilized again, her dad came back with breakfast and coffee, unaware of what happened. I feel so bad for them...

Thanks again for all the support. I can feel your support giving me strength!

Love, Karla

Sunday, January 13, 2008 8:15 PM CST

Sorry I haven't written before now. First off, I want to thank everyone for signing the guestbook, all the phone calls, visits, emails, thoughts and prayers. I really appreciate it.

Jacob has received morphine which took him through the night and into today very sleepy. He has times when he cries out in pain, especially when you move him, but otherwise he is asleep. When he is awake, the lights are on, but no one is home. I have never seen him so nonresponsive in his expression. He had about a 10 minute burst where he was a little more alert and himself, but then he fell asleep. He is eating very little, just a few bites of his food. He seems to have the desire to eat, but tires very quickly once he starts. This is how he looked most of the day.

We noticed that after receiving some tylenol with codeine tonight, he was very red and flushed, along with a swollen arm and foot. Guess we aren't trying that one again!

We had some visitors today which helped the day go quickly. Dave went home tonight. It was so nice to have the two of us together with Jacob. Michael was with his dad and Devin has been staying with Holly. I am so lucky to have such a wonderful friend to help out with Devin, getting him on and off the bus, even when she has her own hands full.

Today, I had someone ask me how it felt to have so many people surrounding Jacob and I tell ya.....I feel so blessed to know that so many people love him and our family. We have such a huge support system, ready to help at any time...and the crazy thing is we have met them in so many different ways. It shows me just how awesome God is.

Tomorrow, Jacob's bandage will come off. Physical medicine will also come by for a visit and hopefully start some therapy and/or ideas on how to work toward getting him more comfortable, moving more, and actually let us position him so he can tolerate the 1 1/2 hour trip home when the time comes.

Hope everyone had a great weekend!

Love, Karla

Saturday, January 12, 2008 11:51 AM CST

7:30 update: Jacob finally fell asleep this afternoon with some pain control. He still is having so much pain if we touch him and even more if we think about moving him. He gets fussy and cries out, then falls asleep, and repeats the process all over again. He did eat a few bites for lunch and supper. We started some morphine to hopefully help some as well. In the couple times he was awake for more than a few minutes, this is about the best look we got from him.

Good morning! Well, I should actually say I don't know how good it technically has been and it is definitely finally morning....almost noon actually! Yeah....let's just say that the beautiful picture you saw last night of my son sleeping did not last long. In fact, after being up for a little while, he fell back to sleep at 10:30, 11:00 and then decided 11:30 was a good time to wake back up again. And he was/is in a lot of pain. He'd sleep for 5-10 minutes and wake up again screaming. I also believe that the PICU has no intention of having parents actually sleeping there because (for all of you who have been at St Mary's) if you think the couch on the peds floor is bad, you haven't experienced anything until you try to sleep on the PICU couch. The recliner became my friend and I'd sleep 10 minutes along with Jacob. So finally at 5:00, the nurse asked if we needed anything and I said SLEEP!

At 5:30 AM, we were awaken again being asked to move to the regular peds floor because there was another child coming in that was very sick and the PICU was completely full. So in 10 minutes flat, we were moved and in our new room. We are in 3-155, and the phone # is 507-287-4434.

At 6:00 the neurosurgeon's resident came in and then the neurosurgeon came in at 7:45. He apologized immensely for him being in pain and I found myself saying it was okay....that is how nice this man is. Jacob is still not able to move his legs at all and has not moved his arms much at all. We are waiting to see if some of the neuro function comes back. The surgeon did not feel he did more damage so we wait to see if he can move his legs again.

Jacob is just absolutely miserable. We increased his pain meds and still he is so sore. You cannot move him or barely touch him. I am worried about him getting too stiff so we attempt to change positions with little luck. He ate 1/2 slice of toast this morning and a couple bites of an ice cream shake.

We ask that you pray for pain control and some restful sleep for him today. I have never seen him like this.

Love, Karla

Friday, January 11, 2008 11:02 AM CST

Friday evening update: Jacob decided to cause a little excitement around here when he got back to the room. He decided to quit breathing and his oxygen saturations went down to 21 and then to 35 which is where the nurse recorded it. The nurse had to bag him to get his sats back up. He's had blow by oxygen on ever since, but is satting normally now. His urine output is pretty low, blood sugars are a little high, but overall, nothing to worry about.

This is how Jacob spent most of the day.

He has been awake twice. Once to eat ice cream and another time to watch Barney. It was quite funny the first time he woke up....I was asking him if he wanted nummies while he was sleeping. The eyes popped open and he started whining. He ate a whole ice cream cup.

We had a nice visit from Warren, the chaplain, and from our neurologist friend Dr Nickels. Thanks also to all of you who called or emailed. I appreciate your support more than you know!!! I am feeling fairly comfortable about the whole thing given the fact that the neurosurgeon was much more human (did I say that outloud?!?!?!?) than the one we had before. We will see what the tomorrow brings!

One more picture....he came back with this heart on his hand.

The nurse in the OR felt so bad that she couldn't get an IV in his hand, so she made a heart bandage.

1:20 update- Talked to the surgeon. The surgery went fine. The surgeon untethered his cord. He did see some nerve roots which he was careful to leave intact. Even though the spina bifida obviously have affected him, there is a chance those nerve roots control something. There was a medium amount of scar tissue there. Another incision was done in the thorasic area to drain his syrinx. He inserted a tube into this area in hopes to keep it draining correctly and not accumulating. He felt that the syrinx was all one, and not divided into separated areas. We are now waiting for Jacob to come back into the room. We will work on pain control and eventually eating his regular diet before he is able to come home.

12:40 update- Jacob got into recovery at 12:15. Pretty long surgery. We are hoping to hear in a few minutes that the surgeon is ready to talk to us.

We had to be here at 6:15 this morning. It was about 6:30 by the time we actually got up to the surgery floor and after 7:00 before they brought us back. We have opted to use the versed and tylenol for getting him drowsy prior to going back. He is at such a place with his development, that he gets scared when he doesn't quite know what is going on. They will be detethering his cord and draining the syrinx, so there will be two incisions. Here's some pics of the boy before he went back :)

The first incision was cut at 9:10 and at 11:00 they were starting to close the 2nd incision. We wait now to have him wake up in recovery, or if we are lucky, he will come right up here to the PICU.

Our room number is 3-540 and the phone number is
507-287-4304. We are not supposed to have the cell phone on in the PICU, but I haven't turned it off yet. I know....I am misbehaving already!

More updates to come!

Karla

Thursday, January 3, 2008 4:40 PM CST

Hello everyone! The kids went back to school yesterday. Jacob was so excited. He squealed and said "I LA!" (I love) when I told him he was going back to school. He had a wonderful day both yesterday and today. He now has his own calendar, weather chart, and morning message board thanks to his aide. This will give what they are doing much more meaning. Trista is also adapting some of Jacob's books so he has his own copy when the teacher is reading. It's wonderful how much everyone wants to do what's best for him!

Painting has been the theme around the house the last few days! I got Jacob's room all painted since the remodel is basically done. Check it out! Does it scream WOW or what????

The painter came today to paint the bathroom and dining room. It is looking awesome. I will take pictures once everything is done and back on the walls.

Next week's surgery is coming up fast! We will go on Thursday for 2 appts, one with the plastic surgeon and one with the neurologist. Jacob has been having lots of seizures in the morning. We will stay over and need to be at the hospital bright and early I am sure! I am going to start packing and making more arrangements this coming weekend/week, but so far things seem to be falling into place. We are hoping to have a webcam set up so the kids in Jacob's class can still talk to him throughout his recovery. Wouldn't that be cool?

Hope everyone is having a great week! Not much else going on here....just the same old stuff!

Love, Karla

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