History

Wednesday, November 26, 2008 12:17 AM CST

Hi everyone. Sorry it's been so long between updates. Jessi is still in kindergarten. It's been a bumpy ride, but mostly she has done really well.

We are still having lots of behavioral issues, but we're hoping to get that figured out when she goes to see the neuropsych people next month.

Other than that, she is doing well and so is Grace. Jessi was Hannah Montana for Halloween because she "wants to be a rock star". Too funny.

Wednesday, May 21, 2008 3:53 PM CDT

Sorry it has been SO long between updates. I don't even know where to start!

We did the Step Forward to Cure Tuberous Sclerosis walk last weekend and we had a great time. My aunt Jane tandem jumped out of an airplane in support against sexual assault that same day also and that was AMAZING. She is such an inspiration to the women in our family, she has such incredible strength.

Jessi is going to regular kindergarden! I can hardly believe it. She will be in regular classes and will be in adaptive phy-ed. She will be able to leave class and sit in the special ed room next door if she gets overwhelmed, but other than that she'll be with the other kids.

She also got her ears pierced. I told her it would feel like a big pinch, and demonstrated. She got them pierced, ran to me and threw her arms around me and kept repeating " That DID NOT feel like a big pinch!" But then later told the check out later "It just felt like a big pinch". What a kid!

She is doing really well. She is (knock on wood) POTTY TRAINED! She is doing so well with that I am SO proud of her! Her language is just continuing to grow by leaps and bounds and she just amazes me every day.

She has been seizure free for over 6 months now. Sometimes I look at her and wonder, and then am just at peace with that if she is having any 'little' seizures, they aren't affecting her.

I look and her and try to remember that little girl before her surgery and I can't even believe it's the same girl. We will be ETERNALLY grateful to Dr. Frost, Dr. Dunn, and all the nurses and therapists, and social workers on 7940!

They gave us this little girl that inside, just waiting to be let out! There's no stopping her now!

Thursday, March 27, 2008 6:12 PM CDT

Jessi's friend Caroline has received her angel wings. Caroline Ruby Vetter passed away last night at 6:15PM at the age of 5 1/2, surrounded by her family at home. While we are happy for her suffering to be over, we pray for her family now in this time of unimaginable grief. I found this poem, and I wanted to share it for Abigail and all ther other mothers who have lost children.

Mommy please don't be sad,
I miss you so much too.
It's beautiful here,
but I worry a lot about you.
I sleep with angels watching me...
there is only love up here.
I am never lonely or afraid
because God is so very near.
I walk with Jesus every day,
He is very kind and loving.
Don't worry Mom, He holds my hand
when we cross a golden street.
I never cry or hurt myself,
I see Grandpa every day.
I play and laugh and sing a lot
and I hear you when you pray.
Please Mommy, don't be mad at God,
you see He loves me too.
And even though you are not with me,
I am really still with you.

~Author Unknown

Tuesday, March 4, 2008 3:56 PM CST

UPDATE:
I just wanted to put a word in for all of you to pray for our friend caroline. She is not doing well, and this family needs all the prayer they can get.

Caroline was Jessi's roommate on one of her hospital stays.
This is her website:
www.caringbridge.org/visit/carolineruby

Quick update before I start work.

Jessi is doing GREAT at her new school! She's blending with the other kids, and listening really well.

The big news however is she is pooping on the potty! I made her a big posterboard chart and she gets a sticker when she poops on the potty, and she gets to pick a prize from her prize bucket. She picked out the prizes for the bucket. She has pooped on the potty every day since Friday and twice on monday!

And she is doing her chores that I made a chart for her to do. She is doing GREAT with that too.

And her dad got her to take a shower last week! So, when she came home on Friday night, she took one Friday, Saturday, and Sunday at my house!

She is just doing so great right now. I hope it continues.

WAY TO GO JESSI!!!!!!

Monday, February 11, 2008 7:24 PM CST

I'll update on more later, but

JESSI LOST HER FIRST TOOTH TODAY!

PS. Miss Grace is selling Girl Scout cookies for $3.75 a box. We don't collect money until the cookies come.

Her goal is to sell 120 boxes. Hint, hint.

Wednesday, January 9, 2008 8:24 PM CST

Hey All-

Things are going well here. Jessi's speech continues to grow by leaps and bounds. She talks like a 'little adult' a lot of the time in her cute little sing songy voice.

Her teacher and I discussed potty training today and we are going to hit the 'big girl' underwear hard and clean up the messes as we go. Neither of us think she'll quit peeing in her pants if she keeps wearing the pull ups, so we're going to try and show her how not fun it is to have pee all over yourself and the floor.

Tomorrow, I'm going to tour two choices for Jessi to transition to the B before C program which is a 4 year old kindergarten. We are going to try to put her in there next month as a 'test run' to see how she does with other kids. If she does well, then the plan will be to try and send her to kindergarten next year.

So everyone keep your fingers crossed!

On the seizure front, so far so good. Knock on wood.

Jessi's latest thing is 'When I'm 5 I'm going to wear big girl underwear and take a shower'(She's terrified of the shower).

So we'll see how all that goes.

Lots of big changes coming up for our girl. Pray for us all to keep our sanity, and that Miss Jessi can make it through all these changes and continue to impress us!

Monday, November 26, 2007 7:00 PM CST

Hi all-

Sorry so long between updates again. It's crazy over here. I'm back to work and going to school. The kids are spending more time with their dad, which is helpful. And they seem to be enjoying it, which is even better :-)

Jessi is doing well. She's so smart, and the things she says just amaze me sometimes. But on the potty training front, she's a puzzle. It's very frustrating. She knows what to do, but refuses to do it as far as No.2 is concerned. I'm trying everything I can think of, but so far no consistent luck.

I just hope she gets this down before kindergarten. I don't want her to have any more problems socially than she needs to have.

So, keep praying for her on that one.

Grace got glasses! She's a little near-sighted, has astigmatism, and has a slight red-green deficiency.

That's the news here.

Wednesday, September 12, 2007 11:02 PM CDT

Hi everyone, sorry for the long time between updates. Even as I'm typing, it's one-handed. I had rotator cuff surgery again last month, so I've been able to be home with the girls which is awesome. I need to give a big 'WE LOVE YOU AND THANK YOU SO MUCH GRANDMA LORI!!!!!!!!!'

I'd also like to thank Grandpa Kevin and Grandma Jan, Grandpa John and Grandma Nadine for helping out so much since I've had the surgery. You guys have made our lives a lot easier and thanks so much!

Ok, so we moved into our new house, which is very nice. It's right across the street from Grace's new school, so she loves that. Her favorite thing right now? HOT LUNCH every day. Jeez, the things kids get excited about :-) Jessi is doing well now with the move. She was upset the first few days, but she's doing great now. It's her 'brown and white house' now.

Jessi started school this week and is LOVING IT! She couldn't wait to get back to 'Quarter Chestnut' (Korger Chestnut) and informed me that she lives there :-)

Jessi still has quite a few behavioral issues, and I still wonder about seizures, but other than that she is just doing fantastic. She's acting like she's in the terrible 3's, lots of sass and talking back, which can be frustrating since she really doesn't grasp that it's really NOT ok to talk to people like that all the time for now reason.

On the potty-training front, we are still plugging away. She does do really well staying dry a lot of the time, but then she'll have her days. She still does not like to poop on the potty, but she'll do that way more for Grace than for me. Apparently Grace has the magic touch.

Other than that, we're just hanging in here, enjoying our new house, and I'm loving that I can be home even though I'm in pain. I feel really lucky to get to stay home with them at this age.

Take care!

Wednesday, July 25, 2007 4:14 PM CDT

Sorry so long between updates.

Jessi is having a hard time this summer. She's not in school, one of her therapists quit so there are gaps in her schedule, Grace is in California for 10 days, and we're moving. So A LOT of changes.

She's been doing A LOT of hitting, biting, kicking, screaming, and stuff like that. So, it's been frustrating. I just wish I knew a lot of the time what was frustrating her so much. It's hard to feel helpless, knowing all you can do are what you know works. And to just listen to her and try to help.

I got to go up last week and 'celebrate' with the other 7940 moms. It was a few of our birthdays so we all met up at the Cheesecake factory in Minnesota.

It was so great seeing all of these people who 'get it' like no else possibly can. To be able to talk so freely and know they understand. To understand the little things that mean so much, and the frustrations no one else can get. To be able to listen to others and give and get advice.

And to see these moms that have been through so much and stare at them in awe of how they just get through the days. These are the most amazing group of women I have ever had the privelege to get to know. They are truly inspiring.

Jessi is getting all ready to be a flower girl in a wedding, and she is SO cute in her dress. She is very excited about this :-)

She hasn't had anymore big seizures, which is great. I'm still wondering if she's having more little ones, just based on her increase in bad behavior and a few other little changes I've seen. But we see Dr. Frost next month, so I'll ask him about it.

Other than that, we're all hanging in there. I'm done with school for a month. So, hopefully we'll have some summertime fun!

Monday, June 18, 2007 10:03 PM CDT

Please pray and send your hearts out to the family of a little girl named Jess. We have only met her and her family briefly, but she is in the beloved family of 7940.

She has lost her battle with the seizure monster, and will be joining our Lord in heaven. Please stop in to their site and offer your support.

www.caringbridge.org/nd/jessmarie

It just makes you so terrified as a mother, to know that these things really happen. You can think things are going along just fine, and you never know what's going to happen. A part of me buried deep inside is always terrified that Jessi will be lost to us again with the seizure monster.

Jessi had two tonic clonic seizures yesterday while we were at the fair. It scared me, and it snapped me right back into the reality that the possibility of relapse still exists.

But you have to realize that we have no control over that and that you just have to enjoy the time you have. It's so easy to do that with Jessi. She is such a bright, beautiful child. The pure joy and happiness she brings to everyone is worth all that we've all gone through to get here.

As her Grandma Lori recently said, she is OUR MIRACLE.

Monday, May 21, 2007 4:34 PM CDT

OK-

So much to update. We had the Step Forward to Cure Tuberous Sclerosis walk on May 12. We were on Miss Kylie's team, which tied with Mary's team for first place! That was pretty neat. Jessi did great there, and it was fun to see some of the people again.

Jessi also saw the cardiologist, and we will be going ahead with the heart catheterization to fix the PDA in her heart. It'll be an in and out procedure.

Her left ventricle is experiencing some volume overload that is on the very top of the high side of 'normal'. So, her heart is holding more blood there than it should, so we need to get it fixed before it becomes a problem.

Jessi is using the potty some, but also peeing on the floor. So, it's a pretty up and down situation but at least she's going again!

She also got a new Dora bike with training wheels and she can PEDAL IT!!!! She just learned how to pedal a tricyle las month and now she's pedaling the two-wheeler!

She's doing so awesome overall. We had a wedding this weekend and my dad mentioned how great it was to actually see her PLAYING with other kids. And he's right. She NEVER would have attempted it before, and now at least she tries in her own Jessi way. I'm so proud of her!

Sarah

Thursday, April 12, 2007 10:35 PM CDT

Update**
We got Jessi's MRI results back, they came back 'stable' which is excellent! She does have some subpendymal nodules, but none are yet big enough to be called giant cells. However, her renal ultrasound did not come back as well. Last year she had a few cysts or angiomyolipomas on her right kidney only. This year she has them scattered all over both of her kidneys. They aren't causing her any harm now, we'll just have to watch them in the future.

Jessi had her birthday party with her friends from her early childhood class. It was SO WELL! I was suprised. The kids were all so cute together and they did awesome. It was fun seeing her have somewhat of a 'normal' birthday party.

She LOVED being the birthday girl. She and I went out for pie and all the waitresses came over and sang Happy Birthday and she thought that was so cool.
_______________________________________
We had Jessi's IEP meeting this week. Jessi will go back to Roxie's class next year and they'll help get her ready for kindergarten. They think the school district here will have a school equipped for her needs, which will be a special education department that can take her out throughout the day just to 'cool off' and get back to regular class.

All her teachers had exciting things to say about her. She's just so different every day, you never know what you're going to get. A real adventure :-)

One day they said she came through the door and said "And I AM NOT taking a shower" and another day she said "I do not like blueberries" just out of the blue. What a nut.

She's progressing nicely in OT and PT when she chooses, they are going to continue to work on fine motor and gross motor, and helping her to complete tasks with minimal assistance, which is still a big problem. She still needs A LOT of cueing and physical help to keep on task.

The MOST EXCITING news was her speech evaluation. Her use of speech still needs improvement as far as expressing herself and using it functionally. BUT they tested her Expressive(spoken) and Receptive(Understanding) speech.

She scored a 90 in Expressive and an 89 in Receptive. Normal is 100, but anywhere from 85-115 is ok. So SHE IS NORMAL IN AN AREA!!!!!!!!!!!!!!!!!!!!!!! That is just crazy and exciting and makes me just want to jump for joy. Thinking of how she was not so long ago, and where she is now is so unbelievable I dont' think anyone would believe if they didnt' know her.

I and my mother would like to do something for the surgeon that performed her surgery because to us, she was sent straight from God. Jessi would still be that bright child stuck in that horrible state if it wasn't for her. What Dr. Dunn did for Jessi is nothing short of a miracle. I want Jessi to know what she did for her. So we'll have to think of a creative way to do that.

Jessi had her check up MRI of the brain and CT scan of her kidneys today. We don't have any info yet. I'll call Dr. Frost tomorrow, and hopefully hear sometime in the near future what the pictures showed. Fingers crossed for no new developments there.

Jessi was too funny. The scan was over an hour late, and she was SO good in the room. Grace sat up in the bed with her and they read books and watched a little Dora.

Then they gave her the IV, she DID NOT CRY. Not a peep, she sat there making jokes with them trying to make them laugh. She told them she was going to be 42 on her birthday.

When they took her onto the bed to go to the MRI, she looked at me and smiled and said "I'm going to go have some therapy". TOO FUNNY! The nurses and the doctor were chuckling with that one.

She did great with sedation and woke right up and was really funny then too. They gave her a popsicle, and she kept missing her mouth with it, and even licked her finger once instead of the popsicle. And she was just smiling and acting goofy.

Then we went to Denny's and she and Grace got "Space Ship" cups, and that was pretty cool for her. They had this 'magic' stuff to put in the drink and it turned Jessi's red and Grace's purple.

Grandma Lori came with us too, which was awesome. Made the trip much more manageable and a lot more fun.

Please keep Grace and Jessi's cousin Eric in your prayers. He is not quite a month old and had to have surgery this week. So, please pray for him and also our friends Caroline, Zoey, Mary, and Kylie.

Thursday, March 8, 2007 3:46 PM CST

Jessi is doing really well overall. Her communication is excellent. She's not doing well at the potty training. She has decided she doesn't want to do it much anymore. And she's developed a fear of the running water from the bathtub, which is also odd.

She did have a small seizure last weekend, but nothing else.

She's still not liking meat very well, but we had a cute thing happen. We were eating turkey roast, and I asked Jessi if she wanted to eat her turkey and she said "No turkey". A few minutes later Grace puts her fork in Jessi's face and says "Jessi you want some watermelon?" Jessi said yes and ate the turkey, and started calling it "watermelon turkey".

What a kid.

Saturday, January 13, 2007 0:02 AM CST

Things are getting back to normal around here. Both girls had colds. Grace is over hers, and Jessi is in the tail end of hers.

Jessi has been having a pretty rough week. A lot of crying, screaming, hitting, biting, spitting, and pulling hair. I'm not sure what's up. I'm thinking it has to do with her being sick, so we'll see what happens when she feels better. She even cried getting ON the bus today, that NEVER happens. She loves the bus.

Things will get a little busier next week. I start school again, but luckily I was able to work my schedule around the kids' schedules for the most part. I've been extremely lucky with that the past 2 1/2 years.

I'll be going to school nonstop now until next December, but then I'll get a little break and I'll be an LPN. That'll be a nice change for all of us. A little more income, and a little more normal schedule.

But, we're doing really well considering how much we have going on. I've been very lucky to be able to work and go to school and not spend very much time at all away from them.

Grace is doing really well in school. She's bringing home lots of A's on her math and phonics. Jessi is doing well also. Her teacher says she does AWESOME at school.

And Jessi got approved to get Occupational Services once a week from Spot's House, which is where she used to get Birth to Three services. We had to go through another evaluation process, and they usually don't go through right away, but she got it on the second try.

So that's really good. Jessi gets OT at school, but it's not individual, it's with a group of kids. So, this will be great to help regulate her sensory system on that day. And we get to go to Spot's house and they have this awesome room with stairs, a slide, a trampoline, a little car, this big circle tunnel, and Jessi's favorite, a little trapeze she can swing on.

Hope all is well with you all. Thanks for checking in on us :-)

Monday, December 25, 2006 9:47 PM CST

Merry Christmas everyone! We hope you all had a great holiday weekend. We sure did!

Saturday we went exchanged gifts with Dawn, Bailey, and Aidan, and went to Grandpa Kevin and Grandma Jan's house for supper and did a gift exchange there with Uncle Kurt, Aunt Lisa, baby Jacob, Aunt Missy, Uncle Scott, and their kids, Aunt Kimmie, and Great Grandma.

Sunday we went to McDonald's playland with Grandma Lori, and had supper with her at Outback Steakhouse, and then went back to her and Granpa Ray's hotel room and went swimming. With waterslides and all. The kids had a blast. Then we went back to the room and opened a few gifts.

Then this morning, the girls and I had our Christmas. Grace got the gumball machine she wanted from Santa, and Jessi got a Fairytale Dora doll from Santa. They both got the Disney Princess Talking Kitchen as well.

Then we opened presents with Grandma Lori and Grandpa Ray, and headed over to my Aunt Jane's house for Christmas with all of them. Jessi had a hard time there, as there were a lot of people.

So we came home, and Jessi took a nap. While she was doing that, Grace worked on putting the Talking Kitchen together. And then it was play, play, play all night.

Check out the new pics in the book!!!

Tuesday, December 19, 2006 8:23 PM CST

Things have been a little crazy around here. The girls have been busy with school and therapy and visiting their dad. And I've just changed jobs and finished school for this semester. So, hopefully things will settle down for a few weeks now.

Jessi is doing great in school. She's up and down with the potty training. It'll come. When SHE decides she wants it to stick all the time.

She still is not wanting to eat a lot of meat. But that's ok. We eat lots of peanut butter and eggs instead.

We've been doing TONS of Christmas baking. The kids helped me make Divinity, Seafoam, Meringues, Russian Teacakes, Chocolate Covered Cherries, Fudge, Gingerbread men, and Sugar Cookies. Whew! They "helped" as much as you'd expect, but they had fun.

Hope you all have a great Christmas and New Year. We'll be busy around here with a bunch of family get togethers.

Monday, November 13, 2006 10:41 PM CST

Hi everyone!

Jessi is doing AWESOME!!!! No seizures to report. Her communication is really starting to develop. She's making so much sense, and making complete sentences a lot.

Her aggression is tapering off again, and when she does get mad, she has a reason and is pretty easily calmed down.

Her teacher said she does AWESOME at school. That she rarely melts down, and if she does all they do is rub her back and count to 5 and resume their activity. GOOD JOB!

OK....the exciting news.

JESSI HAS BEEN DRY FOR 4 DAYS INCLUDING OVERNIGHT!!!!!!!!!

*Fingers crossed*, but I think she's finally got it. Took lots of HARD work with the schedule, but she's getting there. Now we just have to teach her to TELL US she has to go. But she's holding it and not peeing her pants.

WAY TO GO JESSI!!!!!!!!!!!!!!!

Monday, October 30, 2006 10:55 PM CST

Update Wed. Nov. 1st

Happy Birthday Grandpa Kevin! We'll bring you your present this weekend :-)

Jessi saw Dr. Frost today and he said she's doing great! No surprise to us.

She doesn't have to go back until spring, when she will have an MRI, CT scan of her kidneys, and bloodwork.

Great news!

Jessi saw Dr. Lee at the Dermatologic Sugery and Laser Center at the University of Minnesota today. He said her angiofibromas are still quite mild, and that he would recommend coming back in two years. If she develops any on her forehead, or they start coming in aggressively to bring her in next year.

So, she may have the laser surgery done then. TWO YEARS! Whew, one less thing to worry about.

Potty training is hit and miss. It's like all her other skills, she perfects it, then decides she doesn't want to do it, and then she does it again :-)

So, we started a potty chart with stickers. Every time she goes potty, she gets a sticker, and every time she's dry overnight she gets a sticker AND a prize. That's working pretty well. She's gone 2-5 times a day on the potty since we started that.

And Grace has a behavior/chores chart. Her behavior sticker is for listening. If she gets 14 days in a row she gets to pick a fun activty for us to do(movie, arcade, rollerskating,etc.) She also has three chores a day: make her bed, put her clothes in the laundry, and feed/water cash(he's got one of those automatic food dispensers). If she does all three all week long she gets a $1.

She's doing great with it! She does all three first thing in the morning. She says "aren't I being good Mommy? I'm going to help you all the time".

And Grace had a few weeks where she was having a hard time in school, but she's doing AWESOME again! She brought home a Phonics test with a 96nd her latest math drills she got three 12/12 and one 10/12, and she just didn't finish in the minute time on that one. And her Math test she brought home today she had a 100 on the oral and a 100 on the written!! WAY TO GO GRACE!!!!

And Jessi repeats EVERYTHING Grace says. Grace will say "Mom I did it!" and Jessi will say either "Mom I did it!" or "Mom I did it too!" What a nut.

We're all set for trick or treating tomorrow. Sarah B. is coming with us and we're set to hit up Dr. Wolter as usual this year. And we'll stop and see Grandma and Grandpa Henderson too. Jessi is Princess Jasmine, and Grace is Ariel the Little Mermaid. I'll be sure to post pictures.

As you can see, we're busy. I'm in the middle of school. I start my program classes next semester, so I'm that much closer to being done :-) I've been lucky to be able to work my school schedule around not having to be away from the kids for long periods. Hopefully that continues.

Our little friend Kylie finally took some INDEPENDENT step this month! Way to go Kylie!

Wednesday, October 4, 2006 6:59 PM CDT

The justice system failed the girls today. But we are NOT done fighting. The next step will be easier to accomplish.

Those girls have been through so much, and they deserve as happy of a life as we can give them.

And Jessi had another grand mal seizure today. That's all she needed now.

That's all I can do. Protect them, and love them, and do everything in my power to let them know that I BELIEVE THEM. And I will always fight for them.

For all of you who have "normal" families, hug your kids a little tighter tonight and thank God that your children are safe. And that you don't have to worry about the sort of things that are going on here.

Protect them, cherish them, and ALWAYS, ALWAYS, believe them. Even when the other people they love choose not to.

Friday, September 22, 2006 10:56 PM CDT

Things are still crazy around here. We're settling into a nice routine though, so that's helping Jessi out.

The exciting news is her aggressive behavior has almost completely disappeared since she's been home! The therapists have been so excited and writing in her book how she is doing SO much better. None on the hitting for no reason, and she is not hitting when she's mad either.

She's doing great. She keeps saying "I love you Momma". It's so cute.

Grace is such an extraordinary girl as well. She's been through a lot, and she's so strong and brave as well. And she's SO smart. She's doing well in school so far, and loves her new teacher Mrs. Hagen.

The day before yesterday day we made peanut butter playdough, not knowing it had to refrigerate overnight. Oh well, we ate some to "try it" anyway :-)

We went to Action City today with our neighbors and the girls had tons of fun. They played the arcade games, rode the Go Karts, and climbed the rock wall. They both did better than I did on that :-)

I'm so thankful we have such great people living next door to us. They have certainly been lifesavers for us during really difficult times, and just on those days that you just need to talk to someone. Thanks guys!

Saturday, September 16, 2006 10:17 PM CDT

Jessi pooped on the potty again today! YEAH JESSI!! Potty training is still pretty inconsistent, and you have to take her, she won't tell you very often, but it's going :-)

We went to Chippewa Ford today because they were having this ChildSafe event. It was VERY worthwhile. I got a great digital photo of each girl, a personal information journal for each girl, a CD that they made of each girl to capture their mannerisms and voices on tape, and a DNA kit which I performed today. So that way if ANYONE tries to take the girls, the cops will be on them like THAT. Very reassurring.

I don't have an ulcer, but they still don't know what's wrong with me. I did get a deer today on opening day of bowhunting though! A four-point buck.

Jessi and Grace thought is was really neat. Jessi kept calling it "Mama's deer", and Grace wants to go back tomorrow and help Grandpa Kevin cut up the meat.

It was really a great stress reliever to get out into the woods and then to shoot the deer. That helped my stress level a lot today :-)

Thanks for checking in!

Wednesday, September 13, 2006 9:38 PM CDT

All is in complete disarray around here. Please pray that this mess will be sorted out and the truth will be found and that the girls lives will settle down. I don't know what to pray for anymore.

Grace is a mess, Jessi is a mess, and I was in the ER Monday night and have an ulcer. Life doesn't get much better does it?

On a good note, both girls are liking school. Jessi did really well on her first day. She loves her teacher Roxie and her aide Mary, who is MY cousin. Pretty neat.

Monday, August 14, 2006 8:49 PM CDT

Update***
Jessi POOPED on the potty today at her Dad's house! Good job Jessi!!

But on a REALLY sad note, I found out today Jessi's therapist Tina is leaving us Thursday. I just can't believe it!

She is SO great with Jessi and has done SO much really great stuff in helping us "figure Jessi out".

It just makes me sick, but I understand why she's leaving.

Jessi is doing great overall.

We started potty training last a week ago Saturday, and she's doing great! We started every hour, and now we're working towards every two hours. The ultimate goal will be to train her to only go 3-4 times a day hopefully.

It's different training her, but it's kind of fun. It actually makes me feel useful. She doesnt' really understand not to go in her pants, but with the repition of the schedule, she's understanding that FOR SURE she's supposed to pee on the potty. She's going on the potty here 5-7 times a day!! That's amazing!

When she goes she says "That's PEE!!!!!!!" and gets so excited. It's hilarious. She loves wearing her pullups, and today we bought something she LOVES:

DORA BIG GIRL UNDERWEAR!!! I let her wear them alone tonight, and then we put her diaper on for overnight and had to put Dora on OVER them :-)

I'm so proud of her, she's doing great. She just picks things up SO fast when she's ready.

So, I took her to get a "present" for peeing on the potty. It's hard because she doesn't really understand that it's a "reward", but at least she liked the thing she picked.

She was on a TOTAL Dora kick today. Dora underwear, Dora shoes, and her present she picked was a Dora photo/scrap/sticker book.

She LOVES Dora! And she knows A TON of Spanish because of her and she knows what the words mean in English too! She's just too smart.

But of course, I'm no biased at all :-)

No news on the seizure front. And no news is GREAT news.

Sunday, August 6, 2006 9:08 PM CDT

JESSI PEED ON THE POTTY TWICE TODAY!!!!!!!!!!!!!!!

We started training harder this weekend, going every two hours on Saturday. That didn't work, so we tried every hour today. I caught her at 1:20pm and again at 5pm!

She was SO excited.

She did wet her pants twice also, but hey she PEED ON THE POTTY!

WAY TO GO JESSI!!!!!!!!

Grace was totally in on the process too :-) Sitting with us in the bathroom and jumping up and down with us after she peed. She's a GREAT big sister!

Friday, July 28, 2006 10:29 PM CDT

Jessi has been having a really hard time lately. She has been having a ton of trouble asking for help and getting frustrated SO easily. So she's back to hitting, biting, screaming, hair pulling, throwing herself, etc.

This is the worst we've ever seen her. Her therapists told me they've never seen her this bad, and they aren't sure how to stop it.

Before she used to do it when she was frustrated, and she wasn't really trying to hurt anyone. Now, we agree that she's actually trying to hurt people when she's doing it. She was even hitting the neighbor kids the other day, and usually she just ignores them. That's scary, and we're trying to figure out where that came from so we can nip it right away.

She also had a fever this week of 103.6 and had her first seizure in three months during the night. That was really disappointing.

She is doing really well feeding herself though. She's doing better at playing with Grace and participating in activities with us. And also she's doing a better job coloring, painting, and we used glitter glue the other day and smeared it all over some paper. She and Grace both did that.

It was cute. I dated them and hung them on the wall with our new sign that I bought in Hayward. It says:
"WE MAY NOT HAVE IT ALL TOGETHER, BUT TOGETHER WE HAVE IT ALL."

I think that sums us up quite nicely. There's a lot of love in this house, and who could ask for more :-)

Monday, July 10, 2006 9:01 PM CDT

Jessi has been doing really well lately, overall. She's talking so much, and I haven't seen any seizures. She's just so funny :-)

No news on the potty training front. Still just not getting it, but that's ok.

GRACE LOST HER FIRST TOOTH TODAY! She pulled it out all by herself after some coaxing.

AND she rode her bike WITHOUT training wheels for the first time on Saturday! Way to go Grace!

We've spent most of the last four days outside with our neighbor friends Bailey, Aidan, and Brooklyn. They are having tons of fun. It's so great to have neighbors that you trust and kids that get along so well :-)

It's been a fun summer!

Thursday, July 6, 2006 4:38 PM CDT

Yesterday was a very sad day. Another little girl who spent a lot of time on the Epilepsy Unit, McKenna, lost her battle with Alper's disease. McKenna was only 15 months old, and her brother Drew died less than one year ago from the same horrible disease.

Please pray for this family. I cannot even imagine the grief they must feel.

Saturday, June 17, 2006 3:19 PM CDT

UPDATE* I would just like to ask you all to please pray for Grace. She is having a lot of behavioral problems right now. She's having issues about sleeping in her room, even though she now shares with Jessi. She gets hysterical and violent, and tonight she ran away to the neighbor's house. I am really scared for her, and have talked with her doctor and am stuck on what to do for her. I worry for her safety, and for Jessi's.

Hi All-

Sorry so long between updates. Jessi is doing better since we upped her meds. She's talking A LOT and starting to make more and more sense in her own way :-)

She is still having issues with pulling her hair out and slamming her head, so she's been wearing her helmet sometimes to help with that.

Other than that, we've just been busy. Mommy's taking a CNA class, so the kids are getting to visit with their Grandmas and Grandpas when they aren't with their Dad. So, they've been having fun.

That and playing with Bailey and Aidan from next door. So, needless to say, we've kept ourselves plenty busy so far this summer. I can hardly wait for school to start :-)

I forgot how much work it can be to have BOTH of them home. But it's fun!

Tuesday, May 23, 2006 6:19 PM CDT

Over the weekend, my mom took us to the Lodge at Cedar Creek in Wausau, which in an indoor waterpark hotel. The girls LOVED it. My cousin Michelle and her boyfriend Joe came with us. THANKS GUYS! The girls ended up having such a good time.

Jessi particularly ended up loving the large beaver walking around at story time. They had a bedtime story with milk and cookies downstairs in the lobby for all the kids. They had their pjs on and listened to three stories and then had milk and cookies. That was pretty neat.

So, we came home and Monday Jessi came home with a note that there was Pink Eye in her classroom. So, of course this morning Jessi woke up with BOTH eyes crusted shut. So, I kept her home and called the doctor. And by this afternoon I had it also, and I don't know if Grace does, but we're treating her too. JEEPERS.

So, that's it for now, a house full of Pink Eye :-)

Tuesday, May 16, 2006 6:48 PM CDT

A little update. They had thought Jessi had a couple of "episodes" at school where she turned white, but I talked with the Dr.'s office and they decided if they were seizures they would continue and eventually we would see them to decide what we thought.

So, two mornings ago Jessi woke up screaming and soaking wet with urine. Her clothes were completely soaked as was her bed. And yesterday the therapist came up to get me to tell me that she saw Jessi have a seizure. Jessi had been crying all afternoon with her, and then got really quiet. She turned her head to the right and it tilted down, her right arm lifted and her arm and shoulder began shaking and her eyes rolled around. This all lasted 30 seconds or a little longer and then Jessi came out of it and wanted comfort.

So, I called the Dr.'s office again and they thought the school episodes may have been postictal, meaning the school missed the actual seizures, but saw the after effects. So we upped her Lyrica(Pregabalin) to 2x a day to see if that helps.

So, that stinks.

ALSO, Jessi has four therapists that see her: Alison, Nicole, Julie, and Tina. Alison, Nicole, and Julie are all graduating and as of yesterday ALL THREE OF THEM ARE LEAVING. And to add icing to the cake Tina told us today that she was dropping her clients because they have her doing so much office work. So Jessi lost her ENTIRE team. Can you imagine that? We asked if that has ever happened to a kid before and they said no. It would be a disaster!

As much change as she's already dealing with and on top of it she'd have to get used to an ENTIRE new team of therapists?!

I was a nervous wreck. About 15 minutes ago, I got an email from Tina saying that she has requested(and was ok'd) to stay with Jessi for the length of her therapy with IDS!!!!! WHAT A RELIEF!!!!!! So, she'll have to have some new people, but her "favorite" will still be here.

THANK YOU SO MUCH TINA!

Sunday, May 14, 2006 3:07 PM CDT

Happy Mother's Day!

I am so thankful, especially this year, to be blessed with the two wonderful girls that I have. There is nothing on this Earth that I wouldn't do for them, and I love them more than words can even express.

Jessi, you have made me into a much stronger and responsible person that I ever was before. I still make mistakes, but you have made me so much more than I was before.

Grace, you are my first-born, and you only experience that love once in a lifetime. I didn't know for sure if I had it in me to care for a child, but I was proven wrong the second you entered this world.

You two are my universe, and my reason to go on and succeed in this life. Even if I make mistakes, know that I love you both so much and I want you to have the happy lives that you deserve.

To my mother, I love you more than words can say. You are so unconditionally supportive and loving to me. I can only hope that I turn out to be half the mother that you are. With all the mistakes and stupid decicions that I have made in my life, and the hurt I must have put you through, you never once turned your back on me. All you've ever done is support everything that I do and everything that I am, and I am eternally grateful for that.

To the other families that I know and have met, you all mean so much to me. In the same regard, I know I have hurt some of you with my decisions, and I am more sorry for that than I can say. But I am so grateful to you that you have not judged me, but loved me anyway. That's what real love and frienship is about, to be able to look beyond yourself and your own hurt to help others through their own. Not many people can do that, or feel the need to, and the fact that I have so many people in my life who do not judge me, or second-guess me, I feel truly blessed. You are the people I need and that I will always to my best to prove that I'm worthy of that love and friendship.

Thank you all so much, and Happy Mother's Day.

Monday, May 8, 2006 9:46 PM CDT

Jessi's doing pretty well. She's having a fair amount of self injury behavior, but she's got a lot of new stuff going on in her life.

She is talking SO much and a lot of it is starting to make sense! She and Grace are playing together more, which is great.

She really seems to want to be a part of things around here. She helped me vacuum today, and when Grace and I were playing on the floor, she had to get in the middle of it, even if it took getting right in my face and grabbing it with her hands to make sure she had my attention :-)

Check out the new pics, they're cute :-)

Monday, May 8, 2006 9:46 PM CDT

Saturday, April 29, 2006 4:03 PM CDT

*Udate 5-1-06

Jessi did the funniest stuff today. She kept saying things that made SO MUCH SENSE! She was carrying around this little pony and she put it on the table, and she said "Get up there pony", and then said "I help pony". And she shook her head up and down to the floor and then looked at me and said "Clap your HAIR". What a nut :-)

She also did 3 SOMERSAULTS right in a row on the living room floor! Right out of the blue! I didn't even know she could DO somersaults.

Well, the kids had fun this week at their dads. They both came home happy. Jessi of course couldn't tell me any stories about what they did, but Grace filled me in on their new "bug" game. So, that's great that they had a good time.

The girls and I went to the movie "The Wild" last night and then to Pizza Hut to use their "Book-It" coupons after. Jessi got a Book-It coupon from school too! So, Grace thought that was neat.

And I took them to their new weekend daycare this morning. It's nice because it's a lady's house, and Grace and Jessi are the only two she has on the weekend. Jessi went right into the playroom, and so did Grace. They hardly took time to tell me goodbye, they were having a good time.

I really liked the lady. I had told her when I visited last week about the autism, and her other needs to prepare her. Well, when I got there today she had questions for me, and had looked up a bunch of information on all this stuff.

THAT was a great sign. Nothing will get you on my good side faster than doing something to try to UNDERSTAND Jessi, rather than just see her and her behaviors as a problem. What a relief. I haven't crossed that many people, including people in our circle, who have taken the time to research and learn about Jessi's conditions.

So, that's the news for this week.

Have a great weekend everyone!

Tuesday, April 25, 2006 10:18 PM CDT

Grace and Jessi are having their first overnight at their Daddy's new house today! I'll bet they are having a good time.

Check out the new pictures of the girls having some fun today. It was a nice day to be outside.

Tuesday, April 18, 2006 1:36 PM CDT

IT WAS THE FIRST DAY OF SCHOOL!!!!!!!!

She started LAUGHING when I put her backpack on this morning, and only cried when I had to take it off to put her coat on :-) Then she was happy again.

She got on the BUS at 6:45a.m. and she couldn't get on fast enough. She loved it! She hopped right in her seat, and off they went. NO problems, no crying, nothing. What a kid :-)

Kate(her teacher) said she actually did really well today, which is awesome. They played with the water table, and Jessi learned a lot about how the day works today. They have a nice little "picture" book that has just about any handy card you could need to transition her.

For example, when it was time to go home, they were outside for recess and Jessi wasn't ready to leave. So Kate showed her the card for "all done" and she was fine. She went with me to get her backpack and looked for "mama car".

So, then we came come and went for a wagon ride all around the neighborhood. We walked past Gracie's school but she wasn't outside. Then we came home and watched Dora, and played with her new Dora bubbles and her new Magna Doodle. Then we had to play "get you" for a while and read some books. By the time we did all that and had lunch, it was time for Julie to be here at 1:15!

It's only 1:40 and I'm exhausted :-) But it's been a GREAT day! I'm so proud of her!

Monday, April 17, 2006 10:39 AM CDT

Jessi is THREE!!!!!!!!!!!!

Wow, how the last year has flown by. And to think that at this time last year she was having BRAIN SURGERY is just incredible! What a miracle she is!

We could never have imagined what an enormous amount of progress she would have made since then. Way to go Jessi!!!

And she starts SCHOOL tomorrow! WOW!!! I think Mommy is having a much harder time with that than Jessi :-)

Jessi got lots of cool presents for her birthday, and is certainly a spoiled little girl. She's really enjoying Dora the Explorer, Strawberry Shortcake, Care Bears, and Thomas the Tank Engine.

Thanks for checking in on Jessi!

Friday, April 7, 2006 3:37 PM CDT

Jessi's had a bit of a rougher time with therapy lately. Other than that, she's doing well. She's starting to put together sentences.

If she wants something and you prompt her with "I", she'll say "I want ____", which is SO AWESOME!!! And then she tells me "Thanks, Momma". It's too funny.

Jessi and Grace's cousins Micah, Josiah, and Noah are here, and she's liking that.

Jessi is doing better in daycare as well.

And we had our IEP meeting on Wednesday and that went great! I think we have a good start on a plan for her education. The final paperwork won't be finished until sometime next week, after any changes or additions are added.

But she has to get on the bus at 6:45AM! Just for the rest of this year, then next year she'll go later. She goes this year from 7:30am to 10:30am. Her teacher is SO awesome, and her teacher for this year is our cousin! How neat is that!

Please keep praying for Kylie, Mary, Zoey, and McKenna, they all need it.

Saturday, April 1, 2006 1:24 AM CST

Jessi had a sort of "on/off" day today. She would do well for a while, and then go a little nuts, and then back again.

Today Jessi did something for the FIRST TIME.
SHE WENT TO THE MOVIE THEATER AND SAT THROUGH AN ENTIRE MOVIE!!!!!!!!!!!! WAY TO GO JESSI!!!!!!!!!

Jessi, Gracie, and I went to see "Ice Age 2", and I kept Jessi in the stroller, which she loved, and talked to her and fed her some snacks. She sat the whole time watching the movie, and I just had to take her out for the last 5-10 minutes!!!! I was SO proud of her!

And Miss Grace got her report card yesterday and she did AWESOME! Her teacher said her Reading comprehension is AWESOME! And she's the youngest in the class!

She got TWO "E"s for EXCELLENT, and the rest were all S+, S, and one S-(in writing, her handwriting isnt' as neat as the older kids). SO SHE DID GREAT!

So we had a good day. Jessi and I bummed around in Eau Claire this morning trying to find her some pants that fit. Either her jeans fit her in the waist and are too short, or they are just the right length and too big in the waist. SKINNY kid.

Then the movie at 5pm was sold out, so we bought tickets for the 6pm, and headed over to Grace's favorite restaurant the China Buffet and had dinner. Then we headed back to the movie and then home to bed.

Jessi was really excited when we were making a big deal out of what a "big girl" and how "great" she was in the movie theater. It was nice to see her proud of herself. And she SHOULD be, that was just amazing!

Tuesday, March 28, 2006 9:06 PM CST

Hello everyone-

Jessi is doing pretty great for the most part. Since coming off the Neurontin, I think her speech has improved. At least, I think she's trying to learn to use it more appropriately now.

I have noticed A LOT of parroting though, Miss Repeat she is. EVERYTHING we say she repeats. But, then I hear it later, sometimes appropriate, sometimes not. But, hey she's trying!

She has been doing LOTS of laughing and playing. We had our little neighbor, Bailey over to play today, and she didn't really play with her, but she did sit next to her on the couch. And when I asked her where Bailey was she pointed to her and laughed and said "Bailey". But, she decided to take her pretzel bowl over to her chair and sit by herself. Oh well, it's progress!

Jessi's doing great in daycare. They said she's starting to talk much more, and be tolerant of the other kids. I think it's a good experience for her, though it's hard to take them to daycare. At least I know they're having a good time, and it's kind of fun to pick them up at night and having them both give me sleepy smiles and hugs. I LOVE that.

Please pray for our friends Kylie, McKenna, Zoey, Caroline, and Mary as they all continue to struggle. And pray for their families as well. We've been so blessed to be able to get to know some of these families. We'd all be lost without each other.

Saturday, March 18, 2006 4:26 PM CST

We're settled back in. Jessi had a hard time with therapy the first day, getting back into her routine. But, she's ok now. Back to "normal" for her. :-)

I notice the older she gets, the more "difficult" it gets to explain things to her. When she was younger and couldn't really communicate, she would self injure herself for LACK of communication skills. Now that she can communicate, if you don't give her what she wants THEN she self injures.

It's kind of like "you told me to do this, and now I finally figured out how to use the words, and you aren't giving it to me?" She doesn't understand why she can't have it, since she came up with the right "words" for it. I don't know if you understand what I'm saying, but it kind of doubles up on the frustration.

She can certainly just be 2 and naughty sometimes, but she also doesn't understand a lot of the "rules" that everyone else lives by. She'll get it though.

She's doing quite a bit of crying and self injury stuff, and she picked up another one of the "classic" autism habits. I thought perhaps we'd escape it, but lately I've been finding evidence of it all over the house.

She's lining things up, like toys. Legos, cars, animals, balls, etc. She even color codes the legos. It's kind of funny, kind of not. You just gotta look at the light side of it I guess. It's depressing because it's another autistic behavior, but it's cute because what 2 year old color codes their legos?

Jessi Christine Andreo, that's who :-)

Tuesday, March 14, 2006 5:37 PM CST

Jessi's home!!! Dr. Frost said things look good, we're off of Neurontin, back down to three meds. So, we'll see what happens.

Jessi was VERY happy to be home! And to see her sister Gracie!!!

Please pray for our friend Kylie, as they have been on 7940 for over THREE weeks. That family, Kylie, Ava, Maria, Neil, and their loved ones could use a MUCH needed break.

They have certainly helped us out a tremendous amount. Kylie is a lucky kiddo :-)

Tuesday, March 14, 2006 8:37 AM CST

We're breaking out of this place!!!!

Waiting for Jessi's wires to come off and then we are out of here!

Not a wasted trip, we did get her off of Neurontin, and got her Autism Reevaluation done with the doctor we liked. Still not a lot of answers about seizures. I guess the good news is they aren't showing up on EEG, so they aren't very severe if they are seizures. Which they still could be. That IS frustrating let me tell you.

But, she's SO ready to go home. So, here we go!

Wednesday, March 8, 2006 2:58 PM CST

Update 4 Saturday*
Dr. Dickens said none of the episodes yesterday were seizures either. So, that's good and bad. Nothing else new to report.

Update 3*
No seizures FOR SURE yet. I asked about a couple more episodes, but think I'm grasping at straws. In the meantime, Jessi has decided to go on a hunger strike. She's spitting or refusing pretty much ALL her food since lunch time. So, it could be a LONG day.
_______________________________________Update 2*
Still no seizures. Going completely off of the Neurontin over the weekend. Will be here probably until Monday or Tuesday. We told Dr. Frost that we need to be gone by Tuesday, even if she doesn't have any seizures, and he sound ok with that. Will update if any seizures occur.
_____________________________________
Update*
No seizures as of yet. He IS seeing epileptic activity between seizures, which is new. That had gone away after the surgery. So that's a bummer.

We also met with a patient care coordinator who will help us remember when we need all her routine testing done like MRIs, kidney ultrasounds. vision tests, etc.

She's going to most likely have a kidney ulstrasound and was checked out by the cardiologist today.

The cardiologist said that her PDA needs to be taken care of in the next year or she could develop endocarditis, which is VERY bad.

Other than that, nothing new.
_____________________________________

She got a new stroller ordered today! A really cool purple one with raspberry accessories that she can use to ride the school bus! It has attachments so that they can strap her in on the bus. VERY cool.

No seizures yet. She is almost weaned off of the Neurontin.

And here is the short version of her Autism Evaluation results.

CARS(Childhood Autism Rating Scale)-45, which places her still in the "Severely Autistic" range.

Expressive Speech-23 months

Receptive Speech-22 months

Adaptive Funtioning(includes daily living and social skills)-score of 67-last time it was 60.

The only score that DID NOT improve in the adaptive funtioning was her social skills-she still scored between 1-11 months.

IQ test-82, the normal range is 85-120, so she's just below average.

So the Dr. is recommending continued IDS, Speech, and PT, and increased OT to three times a week. She said that she is the textbook case of autism, and that she will always most likely fall somewhere on the spectrum. I knew this in my gut, but it was a little hard to hear.

But the fact that she can speak will GREATLY help her in the future. Dr. Minter said there has been SO much great improvement, that we are greatly improving her potential for the future. She still sees major communication problems as far as actually having a conversation with Jessi, like asking her a question or telling her something, or just even trying to play with her. Something gets lost in the "you to her". SHE knows what she wants to say, but it YOU start the converstion instead of her, it's harder for her.

So, that's what we know. It was how I suspected, and I will learn to listen to my instincts someday instead of the people around me who don't know Jessi at all.

As Dr. Minter said "Just because she can talk doesn't mean she's cured" and "She may look at your eyes, but it's like she's looking right through you most of the time".

But there's hope, with all this progress.

Tuesday, March 7, 2006 11:21 AM CST

Update* Talked with Dr. Mentor, who did Jessi's Autism Reevaluation, and we are going to be finishing it up tomorrow and discussing the results. She is VERY excited by the improvements, but feels she has improved so much because of the In-Home therapy and that this is extremely important. She also said that yes she is doing very well, but she does most definitely still have autism. We'll decide what specific diagnosis tomorrow.

No more seizures to report. She's doing well. Gracie came to visit, and found a friend she knew. Our friend Kylie who's here had a friend come to visit her that we knew as well from Kylie's birthday party this year.

So Gracie's playing the playroom with her friend, and Jessi's snuggling with Grandma now.
---------------------------------------

Well, good and bad news. The episode we questioned yesterday as seizure activity, Dr. Frost felt WAS NOT a seizure. That's good. Also, we are in the process of finding a mobility stroller, since she's getting too big for the regular stroller. The insurance should pay for that which is great since they are like $500 or more.

Also, the Autism reevaluation will be done while we're here! THANK YOU DR. FROST! So,we don't have to come back next month or have a different doctor. Jessi will be evaluated by the same Dr. who evaluated her before the surgery, which I think is great.

On the bad side, Dr. Frost doesn't want us to leave until they have seen a few seizures. SO, I hate to hope for seizures, but PLEASE come quickly so she can go home!

Also, Dr. Frost cut her Neurontin as promised. He wants to phase that out because of adding the Pregabalin. He also doesn't really know why her attitude has changed so much since the 2 grand mals in February. So, the waiting continues....

Monday, March 6, 2006 8:43 PM CST

Jessi is in room 7946 for now. Our roommates are very nice. We got lucky twice in a row now with those :-)

Only one seizure that I saw today, but I was only with her this evening. So, nothing new or exciting to report.

Our friend Kylie is still here and having a lot of seizures. Please pray for them so they can all go home. They've been here a very long time.

Thanks to Eileen and Maria for the supper out tonight. It's so great to have met other moms going through the same issues.

Wednesday, March 1, 2006 9:57 AM CST

Jessi is doing pretty good. She is really not having much for seizures that I have seen. There may be a small one here or there, but other than that she's fine. She hasn't had any grand mal seizures since Applebees at the beginning of February.

I do wonder if there is some subclinical activity going on, especially at night. She is pretty fussy, but that also could be due to meds.

We'll see how this week goes.

Monday, February 13, 2006 8:12 PM CST

Things are hectic around here. I'll update when we're settled more. Jessi is pretty fussy right now. We'll be going back to the hospital March 6, for more testing to see what they want to do with her.

We also got a our first kitty. His name is "Cash", we adopted him from the Humane Associaton and he is WONDERFUL! The first day he was home, he started immediately following the kids and I around, and he ADORES Jessi. Even though one of the first things she did was yank a bunch of hair out of his back, and lay on him. He is so great with them, we got REALLY lucky.

Monday, February 13, 2006 8:12 PM CST

Sunday, February 5, 2006 1:43 PM CST

Well-

Sometime in the next couple of weeks Jessi is going back in for more video EEG monitoring. Dr. Frost re-looked over her EEG twice from our last stay, and did say that the "little" episodes don't show up as seizures, BUT he found some generalized seizures called atonic seizures. I didn't even notice her doing them!

SO, needless to say we are more than a little angry with the OTHER Dr. for not catching those. So, she has to have more monitoring, and possibly they will want to complete her Corpus Callosotomy, which means surgery. And they also made mention of "possible future surgeries". I don't know what that means, but you can bet I'll be asking him.

In the meantime, Jessi is starting a new drug tomorrow called Pregbalin, and will supposedly come off of the Neurontin. We'll see how that goes. Our little friends Mary and Kylie have both tried this as well, so we'll see.

Other than that, Jessi is REALLY fussy, and is a little hard to deal with right now. You're just not sure what's going to set her off. AND she figured out how to unlock and open the front door. THANK GOODNESS she didn't go out, she just stood there looking. So, we'll be getting a new safety device for the doors to keep her in :-)

Friday, January 27, 2006 9:01 PM CST

The upping of the Mysoline left us with a VERY crank kid, so we had to go back down. She's still not back to her normal self.

They are discussing other options for her, and we'll see what we can do. They agree that her "episodes" were and are seizures, "subclinical", meaning they aren't always picked up by scalp EEG.

Her school meeting went great! Feeling much better about that.

Gracie got her report card, and she did AWESOME! She had one S- (in writing, but she's the youngest), eight S, and NINE S+! The youngest in the class is "above average" in NINE areas!! WAY TO GO GRACIE!!!!!

Thursday, January 19, 2006 1:57 PM CST

UPDATE 2** Talked with Dr. Frost's nurse Carol, and we're upping her night time dose of Mysoline. If she persists over the weekend, we'll have to go and see Dr. Frost next week. I HOPE NOT. Carol said too this is NOT supposed to happen because she had the corpus callostomy. They only cut 2/3 of the connection, so it is possible, but it still stinks.

UPDATE** Jessi had three "episodes" this morning. The first one was a staring one, noted by her therapist. Not sure if that was one. The second, she stared off to the right and was "flicking" her fingers open and shut, with her arm raised.

THe third she rolled her eyes back and around and was shaking. THAT was definitely one.

Waiting for a callback from the doctor's office.

Jessi had a little seizure this morning. We then went to Applebee's and were in the bathroom washing her hands. She started screaming like she was terrified so I took her out of the bathroom thinking she was scared. As soon as I got her out, she stiffened and then started shaking.

She had a tonic clonic (grand mal) seizure. It only lasted 15-20 seconds, but she IS NOT supposed to have those because she had the corpus callosomoty.

So, she's tired now, and kind of grumpy. The doctor is deciding what to do. But, this makes me highly suspicious that those little "episodes" that they told me were not seizures, were. I told the nurse that, and she'll pass it on. All the "little" ones she had pre-surgery they had told me weren't either, until they had her hooked up to the grid. Then they WERE shown to be seizures.

SO, I don't know what we're doing. I'll keep you updated.

Wednesday, January 11, 2006 10:57 PM CST

Well-

Dr. Paulson, the founder of IDS Jessi's therapy, came out today for a home visit. It was very rushed as he had 9 appointments. He didn't say a whole lot, but I think he thinks she's doing well. He talked quite a bit with our Birth to Three Coordinator, Patty, who was also there about the transition from Birth to Three to school. That's going to be a pretty big step, so they were discussing it quite a bit.

Jessi is doing quite a bit more self-injury again, mostly in the form of hitting herself and biting herself, though she still bangs her head on things a lot too. If you can catch it early, you can get her to stop, but if not, it can get pretty ugly.

Other than that, she's still talking up a storm. So, that is GREAT!

Sunday, January 8, 2006 3:46 PM CST

Just felt in the mood to post a couple of poems here. There are SO many great ones to remind us of our BLESSINGS, not our burdens. And this page is also great to be able to write and make a record for BOTH of our children. Because Grace gets "lost" in this mess a lot of the time, and I want her to know that we love her SO much, and we're so proud of her. She takes a back seat a lot, and I want to pass on how great she is :-) She is SO smart, she's already reading and doing just awesome in school, dance, and AWANA(youth group). She's just a GREAT kid.

When God gave us our children, Jessi was blessed to get a big sister as great as Grace. No one loves and protects her more than Grace. And Grace is wise and patient beyond her years, of which we are SO proud. I can't even describe how much we love them both.

Please continue to pray for Jessi, Kylie, Mary, Zoey, Caroline, Joseph, and all our other little kiddos out there.

Special Children

God gave this child to you to guide,
to love, to walk through life beside.
A little child, so full of charms,
to fill a pair of loving arms.
God picked you out because He knew
how safe His child would be with you.

- Author Unknown

My child has some special needs,
but that's part of God's design.
I just need to remember
that God's will is best, not mine.

My child is not a burden,
she's a blessing from above.
Sometimes we face a struggle,
but our lives are filled with love.

Put Jesus at the center,
and forget your selfish ways.
The Lord will surely bless you,
and will help you through your days.

- Beth Lohse

Friday, January 6, 2006 10:50 AM CST

Hi All-

Well, we found out after I talked with the OT and Birth to Three Coordinator that we're all on the same page as far as Jessi starting school in April after she turns three.

We have a meeting set up with the OT, ST, PT, Birth to Three Coordinator, The IDS(in-home therapy) staff, and the staff from the school Jessi will attend, Korger Chestnut. It's an early education program that runs 4 days a week, most likely the 7:30-11:30am program. She can ride the bus if we choose to do so. We'll see how that goes. Probably will just because we have to get Gracie to school too. I think Jessi would like the bus.

Anyway, they are coming out on January 25 for this meeting. WE'll discuss what we want to happen with her at school. What her problems are, etc. Then the Birth to THree staff will do another set of developmental tests on her to see exactly where she's at. The Korger Chestnut staff will come and observe from time to time, and then after that we'll have an IEP meeting.

IEP is Individualized Education Plan. This will SPECIFICALLY say what Jessi will be getting for schooling, and her therapy needs. She can get OT, PT, and Speech at school if she's eligible, as well as getting those things at Spot's HOuse, which is where we get them from now. The
difference is that they can't come to the house anymore after she turns 3, I'll have to take her there. It's over by the hospital.

On top of school and OUT of the house therapy, she'll still have to have AT LEAST 20 hours a week of the in-home therapy. So our entire lives will be filled with this. Crystal, you're gonna have to tell me how you manage all that :-)

So, this is all exciting, and scary, and disappointing all rolled into one. I'm SO excited that she's doing so awesome, but it's hard to know that she needs all these other things. It's hard not to feel a little useless. And it's hard not to be selfish in thinking I wish I could get rid of all these people and just enjoy her. We've NEVER really gotten to do that. But, this isn't about what's best for US, it's what's best for her. And how can you argue with results right?

It's hard not knowing how she's going to be. BUT, this school is going to help her socially SO much I think. She's doing awesome with adults,she always has, but she needs help with other kids. She also needs help being able to sit and participate in activities.

You might think, Hey she's only 2, almost 3, it's normal not to sit. Yeah, that's true, but think about a little kid coloring, or participating in a Sunday School activity. She can't do that with a lot of other kids. It's too much for her. SO, she's never be able to make it in school. THe teacher can't constantly sit on her to get her to sit still and pay attention. SO, that's a big part of what this school is for.

It'll be good I think. It'll just be hard to send her to school two years before I should have to. I don't know what I'm gonna do all day
:-)

Sarah

Sunday, January 1, 2006 4:28 PM CST

Jessi had a great time IN the water at Wisconsin Dells. The rest of the time she had a bit of a hard time. She is DEFINITELY going to love having therapy start up again tomorrow.

Thanks Grandma Lori and Grandpa Ray for taking the kids yesterday and giving us a break. We appeciate it.

It's starting to get easier to tell the difference between when Jessi is just being a two year old with the self injury behavior and when she's doing it due to the autism. That is a tremendous relief as far as discipline goes. We can finally start to tell when she needs "timeout" and it works when we use it.

Grace loves that too, of course, because Jessi gets into trouble for hitting and biting her.

One odd thing I'm going to ask the OT about is that all of a sudden, my kid who LOVED the potty even though she didn't know how to use it, is now suddenly TERRIFIED of it.
You ask her if she has to go to the potty and she starts screaming, throwing herself, or repeating "all done".

On a funny note, when we were on the shuttle bus Thursday going from the Waterpark back to the hotel, Jessi's singing "the wheels on the bus go round and round" in her own version. All of a sudden she gasps and says "It's a Brett Favre!" I have NO IDEA what she saw, but that was hilarious. WHAT A NUT!

Sarah

Tuesday, December 27, 2005 5:10 PM CST

Well, seizure-wise Jessi is doing well. As far as the autism goes, that's another story. She DID NOT do well for Christmas, and she's still dealing with the aftermath today. NOTHING we do is right. She's biting, hitting, slapping, licking, and slamming herself into things A LOT.

She'll be happy one second and doing those things the next. Today was our only day of therapy thi sweek, so that's NOT good. I hope she can settle herself down, as we leave for Wisconsin Dells with our family tomorrow.

Other than that, we had a pretty good time :-) She did open a couple of her presents, and the rest of us had an ok time when we weren't trying to calm her down.

Wednesday, December 21, 2005 7:39 PM CST

Jessi's doing fine, but I want you all to pray for our friend Zoey and her family.

Zoey had her hemispherectomy today, which means they took out an entire half of her brain. They are such as amazing family, and she is such an amazing little girl. Please pray that they will find their way through all of this. I cannot even imagine what it must be like.

These kids are absolutely amazing.

Friday, December 16, 2005 10:44 AM CST

WE'RE HOME! Jessi is playing in her room, and all is right with the world for the moment.

We're just going to enjoy this for the weekend, and then I'll give the "big update". I'll post her scores from her evals and things like that.

Thanks to all who called and have been thinking about Jessi.

Thursday, December 15, 2005 8:23 AM CST

Update 2**
Dr. Ritter DOES NOT think that these little things are seizures! He thinks she's tired and kind of just zoning out. GREAT NEWS! So he's not completely convinced. They did say that about her old "little" ones though too,and once they had put the grid in, they changed their mind. But, whatever this is isn't really affecting her, so I'm not going to aruge! He does think however that "40" day was in fact something. So, if she does that again he wants us to come in IMMEDIATELY to recored that. YEAH, what a relief!

Update**
Speech therapy came today and she gave me her "rough" diagnosis of where she is in speech.

Expressive (spoken) language-
She's between 22-24 months, so about 8-10 months behind yet. Kind of disappoiting. She does have "scattered skills" up to 30 months though, so that's promising.

Receptive(Understanding) language-
Still stuck in the 12-15 months range, but with scattered skills up to 21 months. So, she's still 17-20 months behind there. That stinking receptive just won't catch up!

No word yet on whether we're going home or not. We've heard it was the rumor, but "we all know how rumors go".

Ok-
Our favoirite nurse in the world, Scott, who we have again today came in this morning and said he heard a "rumor" that we might be going home today. That depends on a lot of things, like neuropsych getting up here quickly today for the autism eval.

KEEP YOUR FINGERS CROSSED. I can't tell if this is a good thing or a bad thing. Hopefully it means he's seen what he needs to see and wants us to get on out of here!

Wednesday, December 14, 2005 11:41 AM CST

Update 2**
This is FUNNY. My mom taught Jessi a new word and she is saying it ALL THE TIME. The word is "awesome". She says it plain as day. She was playing with the shape sorter and got all of them in and turned to me and said "awesome".
What a nut :-)

We have such a great roommate. Caroline, who's 3 and her mom Abigail. Once I get home, I'll upload the pictures and post them. Caroline is such a doll. It's so nice to have roommates that you like :-)

Update**
Jessi has had a few seizures today, so we'll see what Dr. Ritter has to say about them. She also has had Occupational Therapy and Physical Therapy evaluations. I'll post when we get the results.

Jessi is all hooked up to the EEG wires now. We are in room 7948. Our telephone number is 651-241-7921.

No seizures yet on EEG. I'll keep you all updated as we find things out. We're trying to get her Autism Evaluation redone while we're here as well so we don't have to come back for that.

We need to have it redone for her IEP for school. She starts Korger Chestnut school in April if she qualifies (she does).

Monday, December 12, 2005 4:12 PM CST

Jessi will be checking into the Peds Epilepsy Unit again on Wednesday. After no seizures Friday-Sunday, she's had 7 so far today. So, we're going to try and record some on EEG and see where they are coming from.

I'll keep you all updated as we find out what's going on.

Saturday, December 10, 2005 12:02 AM CST

Jessi is doing MUCH better! Wednesday she had 6 seizures, and Thursday she had 3 seizures. Yesterday she didn't have ANY that we saw! So great!

She did have a "meltdown" yesterday at China Buffet that lasted about 20-25 minutes. I had the therapists with me, so it was good for them to see. They were surprised that she didn't function better since she's been doing better at home. So it was good because we need to help her function in the outside world.

Tuesday, December 6, 2005 3:48 PM CST

Jessi has had 40 SEIZURES today. She was loaded with Diastat at 11:40am, and had 6 more at by 1pm. NOT GOOD.

We're still trying to figure out WHY and correct it. She may be going in for monitoring, we'll see. I'll keep you all updated as we figure this out.

It really stinks. She had to wear her helmet today, and she was such a trooper about it. She is such an awesome kid.

Thursday, December 1, 2005 7:32 PM CST

OFFICIAL REPORT FROM THE EEG: NORMAL!!!!!!!!!!!

Same as in May, NO epileptic activity between seizures! YEAH JESSI!!!!!

He does agree that it sounds like she is having seizures though, so we decided to up her Neurontin and draw her drug levels in 2 weeks. We'll go from there. We could have done nothing, but then we would have most likely ended up having to go up there and stay at the hospital again.

Jessi said "Dr. Frost" I think three times while we were there. She also starting identifying the letters on the side of this little school bus. Dr. Frost said "Well that's impressive". He was so "pleased" with her. He kept laughing and chuckling like he normally does around her. All the nurses came in and checked her out too.

We also visited our "friends", the nurses up on 7940 over in the hospital. They gave her a teddy bear and lots of love! She also got a little teddy bear from the EEG people, so she loaded up on the presents today!

She did awesome while we were gone. So, it was a good day all things considered. The first time we've left Dr. Frost's office feeling "settled". She may be having some seizures, but she's doing SO well how can we complain?

Thursday, November 24, 2005 4:36 PM CST

HAPPY THANKSGIVING!!!!!

We made our first "family" thanksgiving yesterday, and it turned out!!

Thinking of Thanksgiving this year, I think of how very much we really have to be thankful for. I could NEVER have imagined that in seven short months, Jessi would be as awesome as she is. I'm sitting here tearing up now thinking about my baby in the past year, how much she's grown and leaped. Praise God!

And Grace is such a blessing as well. We couldn't have asked for a better big sister for Jessi. It can't be easy to be the older one taking second place a lot of the time, and she is just such an awesome child, we are truly blessed.

And we're all healthy, and happy, and able to be with the ones we love. Who can ask for more?

Jessi is having some "little" seizures, but they aren't affecting her in any way that we can tell, so we're ok with it for now.

Please pray for our friends Kylie, Mary, and Zoey. They still need it as well. We'll be saying another prayer for them today as we think of how lucky and thankful WE are.

Friday, November 18, 2005 5:30 PM CST

Jessi is doing AWESOME!! She still has behavioral and self-injury issues, but those are even doing pretty well right now.

She can:
1. Count to 13.
2. Say most of her ABCs.
3. IDENTIFY ALL the letters.
4. Identify some of the numbers, shapes, and colors.
5. Knows most of her animal sounds.
6. Knows TONS of body parts.
7. Knows how old she is.
8. She can say TONS of words and phrases.
9. She is UNDERSTANDING so much more of what you say it's amazing!

She is just going so fast it's great. It'll probably slow down, but my goodness it's so much fun to watch her right now. New stuff every day!

Monday, November 7, 2005 6:54 PM CST

Jessi is doing MUCH better today, thanks to therapy starting up again today. She was SO happy to see Julie this morning. So, it's pretty obvious that's she's relying very heavily on her "schedule" to get her through the day.

She was having TONS of problems throwing herself on the floor all weekend. That seemed much better today too. So, further proof that these people are doing her a world of good.

Wednesday, November 2, 2005 10:18 PM CST

Jessi did great on Halloween! She went downtown with us to the businesses and trick or treated for a little over an hour. Then we went to see Dr. Wolter, and she impressed him by reading the letters on the Exit sign. He was so funny, because Jessi kept saying "y" instead of "x", so he said "looks like a y to me" and covered up part of the "x" to make it a "y". He just loves my kids, that's a great attribute in your doctor, I'd say.

She had a rough day today, and we think we figured out why. You'd think she'd be too young to really have that "rigid schedule" they talk about kids with autism having, but she's not. She KNOWS that the OT comes on Tuesdays, and she didn't come this week because she had a conference. She kept asking her daddy all day yesterday for "Jenny". She did the same today, and had a really hard time with transitions.

Jessi's days are the same every day, and that's what she knows. Departures from that schedule of 8-10 and 11-1 are hard for her. And Jenny the OT is her sensory "fix" for the week, so I really think that's why it affected her so much.

Other than that she's talking like you wouldn't believe and making sense. Of course she has "scripts" that go together.

Like for instance:
Jessi: Oh, what happened?
We repeat: Oh, what happened?
Jessi: It broke.
Jessi: It broken.

She said that about HERSELF yesterday, it was hilarious.

She does that with all kinds of stuff, certain phrases that go in a certain order, whether it makes sense to do it or not. That's common for autism, and will hopefully go away as she realizes how the words really work.

But she doesnt'learn anything gradually. I remember Grace learning the numbers and letters in chunks, NOT Jessi.

Jessi knows ALL the numbers to 10 and knows all the Letters AND can identify them! Some shapes and colors too! I don't know how she's doing it, as she won't do it when YOU try and teach her. She has her systems, and by goodness she is SO SMART!!!

WE ARE SO PROUD OF HER! I COULD NEVER IN MY WILDEST DREAMS HAVE IMAGINED HER DOING THIS WELL EVER, LET ALONE THIS SOON AFTER THE SURGERY!

THANKS TO ALL OF YOU WHO HAVE AND CONTINUE TO PRAY FOR HER! SHE TRULY IS A BLESSING AND AN INSPIRATION FOR ALL OF US!

Wednesday, October 26, 2005 9:44 PM CDT

Jessi had kind of a hard day today. I had the IDS therapist meet us in Eau Claire for a doctor's appt. today and they played in the waiting room while I had my appt. She did fine until it was time to leave, and she started throwing herself. She threw herself right into my face and gave me the start of a black eye.

Then we went to McDonald's Playland to work on her socialization, and that was up and down. She had a meltdown when we tried to put her in the high chair,another when she couldn't wear my shoes, another when we tried to get her to go into the playhouse. And a couple other little ones, followed by one when it was time to leave again. Lots of hitting, biting herself, pulling at her skin, etc.

Then we came home and she had PT/OT, and that did not go well. She threw herself and cried A LOT of the time they were here. They put her in a "cube" chair and gave her shaving cream to smear around, and put her weighted vest on and that seemed to work alright for a while.

Then the second IDS therapist came, and she did actually do ok with them. A couple little incidences, but she was mostly calm because they were in her room.

SO, not the greatest day, but we were out a lot, so that's to be expected I guess. It was a long day by 1 o'clock.

Monday, October 24, 2005 10:40 PM CDT

Jessi has been doing great! She's had a few seizures here and there, but her expressive speech has just EXPLODED! And she's starting to put some concepts together.

Her receptive language is still stuck where is was (around 12-15month) which is frustrating, but she's just doing so great. Her self-injury goes in spurts, and is mostly when she's frustrated by communication breakdowns.

She did great at Grace's birthday party. Her therapist, Tina, came and did an hour of therapy with her first, and stuck with her the first hour. Then my mom took her the second hour, and as long as she had that person with her, she did fine. Just a couple of little incidents that were easily redirected.

I'm not sure if we have to go to the hospital for an EEG or not. We have an appt. with Dr. Frost at the beginning of December, so if she continues like this, I'm ok with just an in-office EEG when we go then. So keep your fingers crossed!

Sarah

Monday, October 10, 2005 6:12 PM CDT

Jessi is doing pretty well. We think we saw a couple of seizures over the weekend, but nothing big. Her behavior continues to be a problem, getting worse as her speech improves. Go figure.

GREAT NEWS! Our friend Zoey is now having only 2-4 seizures a day, with no med changes, so they have decided to CANCEL her hemispherectomy surgery for the time being. They are just "going with the flow" and letting Zoey take the lead. So keep praying for them that they get a long time to enjoy with her.

Also keep praying for our friends Mary and Kylie, and our friends the Ruzicka's, who have a TON of stuff going on in their lives as well.

Thanks!

Friday, October 7, 2005 3:42 PM CDT

Jessi is doing pretty great! Her speech is coming along just amazingly. It's incredible. We have noticed the more she speaks, the more rigid she gets, and she's getting back to having some "scripted" speech. But for the most part HOLY COW!

She did a TON of self injury yesterday, but today is better. We may have seen a seizure this afternoon, but that's the only once since the last update, so that's great!

Please pray for Zoey, Mary, and Kylie, as they struggle with their seizures yet. Zoey is scheduled for her hemispherectomy on October 13th. Please pray especially for strength for that family.

Monday, September 26, 2005 6:04 PM CDT

Sorry so long since an update. Jessi will be going in for another overnight EEG in October sometime, just to see what's going on. We've been seeing a few seizures here and there, from BOTH sides. So we'd just be more comfortable knowing what's going on before we give her any more meds.

We went to Miss Kylie's 1st birthday party yesterday and had tons of fun!! We got to play with Kylie, Mary and a whole bunch of other kids! Your welcome Maria, it was our pleasure to come!!

Please say lots of prayers for both Kylie and Mary, who are still having problems with seizures. Those sweet girls need our thoughts and prayers.

Sunday, September 18, 2005 9:16 PM CDT

Well, Jeremy just told me that Jessi had a seizure yesterday that lasted about 4 minutes. It was a partial seizure from the right side, which is the side that wasnt' operated on. So that's not good. That would mean that both sides appear to be active with seizures.

Dang it.

Thursday, September 15, 2005 12:57 AM CDT

Jessi's doing fine, but I had to let you all know.

Our friends Maria, Neil, and Kylie have been awaiting Maria and Neil's genetic test results. Kylie has TSC1. Maria is pregnant with baby #2, so you can imagine their stress over this.

THE RESULTS WERE NEGATIVE!!!!!!!!!!

Tuesday, September 13, 2005 10:19 PM CDT

Jessi is doing really good. She's learning to use her words more and more every day. Same old with the behavior problems, but that's nothing new.

Jessi stayed overnight at Grandma Nadine's house last night, and I'm told she did great. She had therapy over there and everything today.

We're trying to enjoy the last few days of summer. I put the sprinkler on last night and let them run around in that for a while, and our neighbor girl, Bailey, who's 2 came over and played.

Please keep praying for our friends Mary, Kylie, and Zoey. They are all doing pretty well right now, but Mary's still having some seizure problems.

Pray for all my pregnant friends, Crystal and Nora.

And for my friend Jen, who had a GORGEOUS baby girl yesterday, Sophia Claire. WHAT A CUTIE!!! I'm still covered in that new baby smell.

CONGRATULATIONS JEN & RICH!

Monday, September 12, 2005 6:03 PM CDT

Jessi is doing very well. She's continuing trying to count and say the ABCs as well as trying to sing parts of songs.

She's still engaging in TONS of self-injury behavior, which really distracts from a lot of the good. But, we'll handle it.

It's so exciting how much she's learning!!!!

Wednesday, September 7, 2005 11:15 AM CDT

Oh my goodness, where to start. The seizures seem to be gone for now, so that's awesome.

She's still having some pretty bad behavioral issues, dangerous to herself and others now. We're trying to figure out what to do about them, but she really likes to body slam herself on hard surfaces, bite the skin off herself, slap herself in the face, etc. NOT GOOD.

Here's the really awesome news: JESSI CAN COUNT!!!!!!!
If you go through it with her, sometimes she'll join in and fill the missing numbers in all the way up to 10! We were floored. And do you know how she learned it? Not from us like Grace did, from her Leap Frog Learning Drum, so BIG THANKS to Granpa Kevin and Grandma Jan for that present :-)

She also will fill in the words to some of the songs she knows which include "Dora" (she'll fill in "let's go" and "oh man" and sing "hey hey" and "dora dora dora"), Twinkle Twinkle Little Star (she says "up up up" and "sky"), the Blues Clues Mail Song(she wails "MAIL" at the end), and Row Row Row Your Boat(she sing "row row row" and "merrily merrily"). HOW COOL IS THAT?

She is trying so hard to talk in sentences too. She will say something and it's all jumbled up, but sometimes we can decipher parts of "jessi talk". She repeats EVERYTHING.

Here's an example of the sentences and trying to put thoughts together. She brought me a train and a caboose and kept saying something I couldnt' understand. What she was saying was "car truck", she was trying to say car and truck. So I told her "a car and truck", so she started saying for the rest of the day "a car truck". AWESOME!!

And this morning, she looked at the picture of Grace on the fridge and said "grace" and then said "dine dine"(Grandma Nadine). Then she said "side" (outside), and later said "house". So I really think she first noticed that picture, knew it was Grandma's house, and then was telling me she wanted to go to Grandma's house. Maybe not, but I'll think so :-)

Friday, September 2, 2005 12:10 AM CDT

We talked to Dr. Frost's office today and they had me up
Jessi's Neurontin again. So instead of getting her off of
meds, we are upping them again. Boy, does this sound familliar.

If this doesn't work, or if she has any more, they want her to come in for an overnight EEG. NOOOO!!!!!!!!

Please pray that this works. We're pretty frustrated right now. The seizures are still SO much better, but we had hoped that maybe some miracle would keep them all the way gone.

Thursday, September 1, 2005 9:01 PM CDT

Well-

Jessi had a cluster of three seizures today, 5 minutes
apart. The first one lasted around a minute and the other
two were shorter. It's from the "surgery" side which is frustrating. I couldn't bring myself to call the doc today, but I will tomorrow.

On the upside, Grace started kindergarten today! She LOVED
it!! What a big girl. And Miss Jessi and I had an Awesome
time hanging out on our own. She seemed much more connected
to me.

Monday, August 29, 2005 3:50 PM CDT

Jessi's been doing pretty well. I'm not sure if she's having seizures or not. If she is, they are very short.
She's doing ok in therapy, kind of up and down. She did really well for a while today, and then she started bodyslamming herself on the hardwood floor and then on the concrete. She bodyslammed herself on my face yesterday, which felt really good.

She's also still having BIG TIME diarrhea problems, so Dr. Wolter said to try giving her Pepto Bismol 4 times a day for a couple days to see if that will help. If it doesn't we'll talk about what's next. A lot of kiddos with autism suffer from "leaky gut" syndrome, or something similar, and one of our friends has had at least one diarrhea diaper a day for the last 2 YEARS. FUN HUH?

Continue praying for Zoey, Kylie, Mary, and our new friend Ryan. Zoey and Kylie and doing pretty well, but Mary and Ryan are still having seizures.

Thanks!

Wednesday, August 24, 2005 11:14 AM CDT

Well, Jessi had a seizure last night. She woke up around 11:42pm, played for about 5 min. and then did the right-sided "goofy grin" with the staring. I tried slapping her face, yelling at her, waving toys in front of her face, NOTHING. It lasted not quite 30 seconds, and then she snapped back and decided to be wound up and play.

I had to give her some Melatonin to get her back to bed. SO, this means the seizures are coming from the left side again, and not the right. Good and bad I guess. This could mean the surgery didnt' "get it all". But, who knows.

I called the docs office and we're just going to watch her for now.

Monday, August 22, 2005 9:19 PM CDT

8/23 Update*
Please pray for our little friend Kahlan, who is having some problems right now that the doctors cannot figure out. Also keep praying for our friends Kylie, Mary, and Zoey. We also "met" a new non-TS friend today, Ryan. Please keep his family in your prayers as well.

Jessi did not have such a great day today in therapy. With both 2 hour sessions, the therapists spent the whole first hour just trying to get her to aknowledge their existence. She was less talkative, no attention span, just "in her world". That was disappointing, but I think the novelty has worn off, and she's just going to treat these people like everyone else.

LOTS of self injury today. Biting, hitting, scratching, and hitting others, which she doesn't usually do. She hit the therapist when she first got here and screamed and then started hitting herself.

She also started a new trick. She pulls on her fingers and toes really hard. And then she bends them all the way backwards and "snaps them" loose. I'm just waiting for her to break one, and those of you who know her know that it wouldn't even phase her. She touched the outside of the oven yesterday when it was hot, and NOTHING, no reaction at all.

On a good note, she did do well when we ran errands this afternoon, probably because she had about 5 HOURS of sensory time, being spun and tossed around and deep pressure.

We went to the Mexican restaurant here in town tonite and she did pretty well until the end, when she started her bloodcurdling scream where you think someone is trying to kill her. Obviously she was in sensory overload. SO we left and put her in the car seat.

I had Daddy take her shoes off and "viola" she started to calm down. THANK YOU to the Occupational Therapist for reminding me that taking away just one little bit of sensory input may help calm her down in that situation.

To explain, just taking away the "feeling" of the shoes on her feet was enough to calm her system back down. It's like the world around her spinning out of control and she doesn't know what's wrong OR how to stop it, so we have to figure it out for her. Sometimes it's so simple, and that's great.

Please continue to pray for our friends Mary, Kylie, and Zoey. Zoey is still seizure-free! Kylie, unfortunately, had her seizures return yesterday, she had 20 of them yesterday. And Miss Mary is having around 7-8 a day, so they may be going back to the hospital as well.

No seizures to report for Miss Jessi! PRAISE GOD!!!!!!!!!!

Saturday, August 20, 2005 0:00 AM CDT

Well, Jessi is having a harder time with her therapy. She still did well, but she's catching on to the fact that they are coming EVERY DAY. She's so funny. Her way to try and get rid of them is to go over onto her bed and lay down and say "sleep". Like she's trying to fool them.

But even that is SO HUGE. She NEVER would have put together laying down on her bed and the word "sleep" before the surgery. WAY TO GO JESSI!!!!!

I dont' think she's had any seizures lately. It's so hard to tell with these little ones. SO, if she is having any they don't seem to be affecting her.

We're attempting potty training, but I'm not convinced she's ready. She's really interested in the CONCEPT of it, but shows no physical signs of readiness. No dryness at night or naps, not caring when she's wet or dirty, but that's a sensory problem of being underreactive to that sort of stimuli.

And quite honestly, I could care less about potty training right now. We've got more important stuff to do :-)

Please keep praying for our friend Kylie and Zoey, and we would also like to add our friend Mary. Mary had surgery last Dec. and is now back to having just as many seizures as she was having before. So please keep them in their prayers as they try to find their way through this TS mess.

Good news to report is that Kylie and Zoey have been pretty much seizure-free for a little while! WAY TO GO GIRLIES!!!!!!!!!

Monday, August 15, 2005 6:18 PM CDT

Jessi had her first "full" day of IDS. She really did good! The therapists all said she used a lot of imitation and even used "help" sometimes and brought them things. She enjoyed singing with them and playing with balls and cars.

They thought she did great. She did get "frustrated" like she normally does, but was easily redirected.

We're awaiting a call back from Dr. Frost's office as we're having some gastrointestinal issues with Jessi that we're trying to figure out. If it's not one thing, it's the next right?

Please keep praying for Kylie and Zoey, and also our TS friend Mary. Mary is having quite a few seizures again too.

Sarah

Friday, August 12, 2005 4:57 PM CDT

Jessi had her first workshop with Integrated Development
Services today, which is her intensive in-home autism
therapy. It was great!

The therapists she'll be working with were awesome! Jessi
loves them. They sat on the floor, which was perfect since
Jessi loves to run in circles around people and have them
"chase" her. So she connected with them right away.

They are excited to start working with Jessi and noticed the
awesome changes in her since surgery. I asked them if they
thought she still would fit the criteria for autism, and
they said yes. So that's good and bad. It's good because
then we know she still needs the services, but bad because
we know she still needs the services :-) Know what I mean?

The next two weeks they will be in the house from 8-10 am
and 11-1pm, Monday through Friday, 20 hours a week. It
sounds like they will work up to the 35 hours slowly if
she needs it.

I'm really excited about this after seeing how Jessi reacted
to these people. Unfortunately she had two 10-15 second
seizures after they left. So, the excitement may cause
more seizures, but we'll have to wait and see.

We're so proud of Jessi. She is so amazing. To think she is
doing this well after all she's been through it just
amazing. Thanks to all of you who continue to pray for her,
we know that it works. And we know how blessed we are to
have been given two such wonderful girls!

Also, please keep praying for Zoey and Kylie. Kylie's seizures have returned, and Zoey will be having her
hemispherectomy probably next week.

Sarah

Friday, August 5, 2005 6:11 PM CDT

Jessi, Grace, and Mommy went to Como Park today and then went to visit our friend Zoey, and her Mommy Josie and Daddy Dan. From what Josie says, Zoey is doing pretty well seizure-wise, and will hopefully get to go home by Monday.

So, she'll get a break from the hospital before her hemispherectomy. Keep praying for Zoey! She was walking today better than she had for about a week, her dad said.

Jessi did ok while we were gone, but definitely had some overstimulation. She pulled at her face and lip on two different occasions until she drew blood and then smeared it all over her face. The screaming and whining from overstimulation don't bother me as much as the self injury.

She doesn't even realize she's doing it. She doesn't say anything, cry, NOTHING. She just does it and then all of a sudden there she is with blood all over the place and us looking for the cause. She was slapping herself in the face and mouth and biting her fingers a lot yesterday and today as well.

BUT, she did get to ride three rides at Como Park and she LOVED the one that was like teacups that spun around and around. Made ME sick, but not the girls. ANd they rode a car ride together WITHOUT me. That was the FIRST TIME she has ever ridden a ride without an adult.

WAY TO GO JESSI!!!!!!!!! She loved the animals. Every time we left one to go to another she would tell it "Bye-bye girl". Nutball.

Tuesday, August 2, 2005 5:11 PM CDT

Jessi is doing very well. No seizures that we can confirm.
She was acting a little "stary" today, but I'm not convinced it's seizures.

Her newest phrases that keeps repeating are "all done" and "shut door". She's so funny. She says "shut door" very appropriately, but then again she's obsessed with opening and shutting the doors. The "all done" she just says for everything.

Other than that, we're doing good. We have decided to put off her autism evaluation until next April, at the advice of the neuropsychologits at Dr. Frost's office. THey believe even if she does "recover" from her autism, with all that she's been through she needs to get these intensive inhome therapies to maximize her development.

So, not doctors until September when we see Dr. Frost *fingers crossed*.

Monday, August 1, 2005 0:43 AM CDT

Hello All-

We're back from vacation and getting back into normal life. Jessi did pretty well from what I can gather while we were away.

She is parroting up a storm, repeating all sorts of words. Now the trick is to teach her what they mean.

She spent about 45 min. this evening playing in the rocks telling them "Thank you". Nutball, she'll get it eventually.

Please continue praying for our friends Kylie and Zoey, as they are both still struggling. Zoey may be having her hemispherectomy this week, if Dr. Dunn (yep, that's Jessi's surgeon too) can do it. THis means that they will be taking out the ENTIRE left half of Zoey's brain. I can only thank God that JEssi "just has TS".

The girls and I are going to St.Paul on Aug.11 to take part in their STroll for Epilepsy per ZOey's mom Josie's request. THey are walking in honor of Zoey, and we're gonna go walk with with them.

Please continue the prayers, as we as well as the other families mentioned greatly appreciate it.

Tuesday, July 26, 2005 9:42 PM CDT

Jessi's been doing fairly well. No seizures that we can confirm. Her behavior has been somewhat improved.

We took a mini-vacation with the kids the last two days. Yesterday we went to Menomonie to Wakanda Waterpark. Today we went to LaCrosse and went to a Children's Museum and Chuck E Cheese. Jessi did AWESOME! She was able to run around like a wild woman and get all sorts of sensory input. It was good. She had a few overload moments, but MUCH better than we anticipated.

Please keep praying for our friends Kylie and Zoey, as they are both still struggling with their epilepsy.

Thanks so much.

Friday, July 22, 2005 2:50 PM CDT

Hello everyone. Jessi is doing pretty well. We all went out and played in the sprinkler I got for my birthday from Grandpa Kevin, so that's why the new picture :-)

I'm really updating today to ask all of you to say a lot of prayers for our friends Kylie and Zoey. Kylie is only 10 months old with TS and they are back in the hospital again to try and control her seizures. She had diastat 3 times during the day yesterday to no avail. So pray for her and her family, she's Jessi's friend.

And Zoey is a little girl we met while we were at the hospital, she does not have TS, but has Rasmussen's disease, which I think is probably worse. She has a long scary road ahead of her as well. They may be doing a hemispherectomy on her at some point to try to get her seizures to stop.

Zoey is in the hospital as well. As a matter of fact, Kylie and Zoey are roommates! So please pray for them as they are a part of our extended family. These kids are so precious and they could use all the help they could get.

Tuesday, July 19, 2005 9:40 AM CDT

GOOD NEWS ALL!!! We just got word this morning that Jessi is finally off the waiting list for the autism waiver. Which means that Miss Jessi will be able to start in intensive home therapy in August!!!!!!!!!!

YEAH!!!!!!!

Monday, July 18, 2005 8:01 PM CDT

Hello All.

Jessi stayed with my mom over the weekend and did great!
She had her same troubles with her sensory system, but
would bring her weighted vest to grandma and say "help".

She didn't have the greatest day today. She was very unregulated. Lots of things kept setting her off.

But, I think she was trying to ask me some questions today about some of her toys. It's a lot harder to decipher "Jessi talk" than it was to decipher Grace's, but hey at least she's TRYING.

No seizures that we saw over the weekend or today, so FINGERS CROSSED and lots of prayers please.

Wednesday, July 13, 2005 4:56 PM CDT

Well, we had to up Jessi's Neurontin again today. She had
about a 1 min. partial seizure in the car today. Immediately after she got very drowsy and fell asleep.

I dropped her off at her grandma's and took her out of the car and she was like dead weight in my arms. Now, for anyone that knows Jessi, she wakes up when you take her out. She stayed in the exact position I laid her in for over 2 hours.

Needless to say, frustrating. The nurse and Dr. Frost think that they are coming from the other side, but that hopefully medicine will work on these.

Friday, July 8, 2005 11:38 PM CDT

Hello all! Well we had a pretty good day. We had a playdate today at our TS friend Kylie and her mommy Maria's house. Our other TS friend Mary was there as well with her mommy Eileen. It was lots of fun, especially for Grace.

Jessi had a tough time adjusting there, so she was pretty fussy. That was frustrating. But after talking with the other mommies, I am very thankful that her behavioral and learning issues are our problems now instead of her epilepsy. I DO NOT miss the days that these guys are going through right now.

SO pray REALLY HARD for Miss Kylie and Miss Mary that those stupid seizures will be able to be controlled. And while we're at it, pray to keep the seizure monster away from Jessi as well:-)

Monday, July 4, 2005 9:02 PM CDT

Sorry it has been so long since an update! We are mostly finished moving now!!! YEAH!!!

BIG THANKS to Grandpa Kevin, his friend Larry, Granpa Al, Uncle Kurt, Uncle Scott, Grandma Lori, Grandpa Ray, and Grandma Nadine for all the help!!!!!

Jessi and Grace LOVE the new place, it's huge!!

I maybe think Jessi had about a 20 second seizure yesterday, but she's been doing AWESOME!!!

Her newest thing is picking up a doll or toy and holding it up by her neck and patting it saying "Aw baby". Then, there's a song that I have sang to her from Dumbo called "Baby of Mine" since she's been a baby and I use it a lot to calm her down during meltdowns. Well, now whe picks up the baby and says "Oh baby, baby of mine"!!

Too cute, I know it's just echolalia but still it's so funny to hear that many words come out of her mouth. And for her to know that she is supposed to do it to comfort the baby. THAT IS PRETEND PLAY!! She is doing better and better with speech AND understanding every day. She is having the polar opposite this week as last week.

We're going to enjoy her regulated sensory system while we can. She may turn back into "psycho" Jessi any time :-) But we love her anyway :-)

WAY TO GO JESSI!!!!!!!!!!!!!!!!!

Tuesday, June 28, 2005 3:49 PM CDT

Jessi had one seizure each day on Sunday and Monday.
So, we called the doctor yesterday and they decided to
up her Neurontin.

They're telling us not to be discouraged, so we're not going to be. She's still doing great, and one a day or
so is not a big deal. Hopefully we can catch them now.

The doctor thinks we take care of them now, so hopefully
they won't get worse.

Monday, June 20, 2005 5:16 PM CDT

6-23-05, Jessi had 2 seizures within 5 minutes yesterday. We were at the public swimming pool, so I'm sure it had to do with overstimulation. SO that stinks. They were not from the side they did the surgery on, as it was the left side of her body affected instead of the right, like before.

We went to the playground last night, and she wouldn't play with the other kids. She just sat in the sand running it through her hands. Then she'd get up on all fours and grind her hands across the sand. I had to physically put her up on the slide to get her to do any of the playground equipment at all. That was tough to see. A little girl tried to pick her up, and she didn't even aknowledge her at all. And after Jessi had had enough of it, she just started slapping at the girl, not even looking at her.

Then I made the mistake of going shopping by myself with them today. BIG MISTAKE. I forgot to bring her weighted vest, so 95 percent of the time she was either screaming, yelling "ouey, bite,no", or hitting, slapping, biting, or pinching herself. So she appeared to be a very naughty kid. THe only time she was ok was when we were in the car for a while.

It's really a slap in the face sometimes to realize that this surgery didn't "fix" her.

She still has TS, she still has autism, she still has epilepy, she still has developmental delays.

It's just so frustrating to see her slipping back into her own world again lately. SHe has some very clear moments when she's "with" you, but so much of the time she's in her own world and lets you in on her terms.

It's so hard not to be able to "talk" to her. I can't ask her what the puppy says and have a guarantee that she's going to even aknowledge my existence, or be able to pull from her brain the answer, even though she knows it.

I won't bore any of you with this, and I don't expect you to understand. Some people think, why can't we just enjoy her? I do, but I also have to be the one fighting for her, when others choose to see only the good and brush off the difficult. "Oh, she's 2", or "Oh but she's doing so well".
Yes she is, but she still needs us all to UNDERSTAND her.
She's so amazing and special, and can teach us all about so much. She won't respond to a lot of the "normal" approaches to discipline and other areas, such as potty-training.

My child is AMAZING, and her progress has been incredible. But, we're not done yet, and have a long way to go.

SO please, while I don't want you to underestimate my child,
don't overestimate her either. If you do, she may not get all the help she needs to reach her potential.

Friday, June 17, 2005 5:06 PM CDT

Just wanted to update quickly. Jessi is still doing well.
She's still pretty fussy a lot for no apparent reason, which is frustrating. Nothing seems to help, we just have to wait her out and keep clear of her.

On the upside, we went swimming at the pool here yesterday
and she LOVED it! She ran around and around yelling "mimimimimmi" which is her new stimming phrase. She says it a lot. She did that at the playland at the mall
yesterday too.

She wouldnt' play with the kids, but she played peekabo with
a strange adult. Go figure, this kid would go to ANY adult,
which is a double-edged sword.

But, she's still improving developmentally everyday, so who can complain? :-)

Saturday, June 11, 2005 4:19 PM CDT

Jessi is doing awesome still. I think she had three
"episodes" the day before yesterday, but they didnt'
seem to affect her.

They did upset her though. Just her arm was involved, it
would bend at the elbow and raise in the air. She knew
it was happening and she didn't like it. Two of the times
she looked at it and cried, but they only lasted about
10-15 seconds. I'm going to call the doctor Monday if
we see anymore.

But she is repeating all sorts of words and LOVES being
outside and playing. She loves it when Grace or Daddy pull
her in the wagon too :-)

Tuesday, June 7, 2005 5:17 PM CDT

Jessi is doing really well. She is still having some of
the same learning problems, but she is learning new words
daily, which is so exciting!

No seizures that I've seen for about a week. It's possible
that we've missed some, but they aren't appearing to hinder
her in any way regardless.

We're moving July 1st to a new place that is SO much nicer
than where we live now. The girls will have a big backyard,
and we'll be blocks away from Grace's school. So we're
all excited!

Thursday, June 2, 2005 5:03 PM CDT

Sorry so long for an update. We went on our first official
"Family Vacation" ever! We went to Wisconsin Dells for
2 days and Jessi LOVED IT!! She did so well, mostly I think
because we were outside a lot, and they weren't very busy
so she didn't have tons of people to deal with.

Grace and Jessi LOVED the animals, and Grace got to feed
some alligators and Jessi, Grace, and I got our picture
taken with an alligator. Jessi, Grace, Daddy, and Mommy
stayed at a hotel that had a mini waterpark in it, and
we went to a place called Storybook Gardens, where they
had a ton of animals to pet and feed.

We went to an aquarium too, where they got to feed like
trout and stuff. They loved it when the fish "jumped" to
get the food, I almost lost Jessi into the water a couple
times she was so excited.

She's still having some "episodes" but I don't feel like
they're really hurting at this point, so that's good.

It really feels so great to not have to worry about Jessi
so much in an "abnormal" way. We've really had a chance
to become somewhat more of a family since this surgery.

Thank you all for praying for her and our family. God has
most definitely heard the prayers and helped our girl
SO MUCH!!!

Saturday, May 28, 2005 11:58 AM CDT

We think Jessi is having some seizures. But I also think she's having a lot more
"zone outs" due to her autism. It's frustrating.

She had learned about 10 animal sounds, and knew them so well. NOw she's getting
them all mixed up and has forgotten a couple. She has her body parts all screwed up
and has completely forgotten her belly button. That's all she would do when we came home from the hospital. You'd say "Where's Jessi's belly button?" and she'd lift
up her shirt and say "dong", like ding dong door bell. Now, NOTHING, not even if I lift her shirt up for her.

So it's like a vicious recyling system. THe more she learns, the more she gets mixed up or loses. I pray that she will be able to overcome this one day. How frustrating it must be for her. I can't even imagine what it's like. Sometimes you can tell that she knows that she used to know how to do something, but now can't do it.

She can't do puzzles anymore or the shape sorter the way she used to. And that really frustrates her. She doesn't understand why she can't do it, and she gets frustrated so easily.

Hopefully with her continued ST, OT, and PT she'll make more great strides without losing in other areas. And hopefully the intensive in-home therapy will start next month.

Thursday, May 26, 2005 10:15 AM CDT

Jessi had a good day yesterday. She only had one of
her "episodes" which we do believe are probably seizures,
but after I talked to the nurse they said we can wait
to go up on medicine until we see an increase in them.

I just don't want her to go up on her meds unless
she has to, so hopefully there is no increase.

Jessi had her Speech assessment today and we got mixed
results. Her Expressive Language, which was at around
12 months before the surgery is now at 20-22 months!!
AMAZING!!

But her Receptive Language, or ability to understand
and decode the meaning of language, is still only
at 12-15 months. That's a bummer.

So she talks like a 2 year old and thinks like a 1 year
old.

She also has problems "recycling" words. She will focus
on one area, like animal sounds and learn them really
well, but then she mixes up or forgets other things
like body parts. They don't know if that will change
or not, so we just have to work on it.

Sunday, May 22, 2005 4:48 PM CDT

We did the Step Forward to Cure Tuberous Sclerosis walk
today and we raised $42,000!! Thanks to all who donated!

JEssi did really well and she was happy to hang out with
her TS friends Mary and Kylie. We met some new people
today, and another little kiddo who is going to have
surgery this month.

We also hung out with Jessi's nurses and she LOVED that.
She couldn't wait to get out of my arms to get into theirs.

We hung with Dr. Frost and Dr. Dunn too. Dr. Dunn did
Jessi's "post-op check" while we were chatting and said
she's doing awesome!!

We had lots of fun and we're pooped now.

Friday, May 20, 2005 3:13 PM CDT

Jessi seems to be doing better at home. We had a horrible day
when we went with my friend to Marshfield yesterday. So the problem
really seems to be that she is having a lot of trouble "dealing" with
the outside world. That is when her "autistic" behavior really is at its
worst.

No seizures that I've seen today, so hopefully those stay away. The
nurse thinks that they ARE seizures from the opposite side of her
brain. So, hopefully they stay gone.

Her PT evaluation came in the mail today, and put her about 40 percent
behind in gross motor skills. So at least ALL areas of her development
are improving, with the biggest improvement being speech. I will
let you know when that evaluation takes place next week. We're
excited to see where she scores out.

Jessi is still very happy, she's just having more trouble. As long as
we're home in "her" place, she's doing very well.

Wednesday, May 18, 2005 6:16 PM CDT

Today stunk, no better way to put it.

Jessi is acting completely different aside from that her
speech is still good. She is doing most of her "autistic"
behaviors. She's circling, ignoring, manipulating toys
over and over again, and eating inedible things. She
ate 1/4 a bar of soap today.

Then she managed to fall WITH HER HELMET ON with 3 adults
watching her and crack her forehead open on grandma's
fireplace. Which in turn earned her ANOTHER ER visit and
2 stitches.

To top all that off, we have absolutely NO DOUBT that
Jessi is having seizures from the other side of her
brain than the side they operated on. Jeremy saw it
start and got me to watch. She was holding her left arm
to her side but you could see her fingers twitching around
and at the end her left side of her mouth "snarled" and
then she started crying after. It lasted about 15 seconds.

WHEN IS ENOUGH ENOUGH???!!!!!!!

Tuesday, May 17, 2005 4:32 PM CDT

Jessi may be having seizures from the "other" side of her brain. I noticed
5 times today where her arm "shook" on the left side for about 10 seconds.

I called the Dr. and they acted like they thought they were seizures, but
I don't know. I hope not.

She was a little "off" today which is I suppose not a good sign. Her OT noted
that she was wondering more again and not as attentive.

Prayers please that this is not something new.

Saturday, May 14, 2005 4:20 PM CDT

Unfortunately, Jessi has had three seizures in the last
two days. This is a bummer, but we're waiting on bloodwork
to see if there will be any med changes.

The Dr. said the good news is that she has a "normal" EEG,
so that means the brain waves are only "bad" while she's having the seizure, instead of all the time, like before.

So that's a good thing. We went with Grandma Sue today to the Stroll for Epilepsy at Irvine Park today. We had fun walking in the rain! Thanks Grandma Sue!!

Friday, May 13, 2005 12:23 AM CDT

Jessi had her PT evaluation today and was found to
be at about a 16 month level in her gross motor skills.
She is going to come back in a couple of weeks to develop
a therapy plan for Jessi.

We are discussing whether to use braces with her or not,
since she thinks her biggest problem is ligament overelasticity. So, we'll have to decide on that. ANd also a muscle problem with her legs, which is why she cannot descend stairs on her own.

So, she is delayed in all areas, but catching up.

Tuesday, May 10, 2005 10:43 PM CDT

GREAT NEWS!!!!!!!!!!!!!!

JESSI IS NOT HAVING ANY SEIZURES AT ALL!!!!!!!!!!

HER EEG LOOKED "NORMAL" FOR THE FIRST TIME IN HER ENTIRE
LIFE!!!!!!!!!!!!! THERE IS NO SEIZURE ACTIVITY AT ALL!!!

Dr. Frost thinks the drooling is due to right-sided facial
weakness from the surgery, and that it will go away with
therapy.

She had a re-evaluation in OT today. In January she tested
at 10 months old in "grasp" and today she scored 20 months!!!!

And in "visual spatial" she tested at 9 months in January
and today she tested at 15 months!!!!

WAY TO GO JESSI!!!!!!!!

Sunday, May 8, 2005 10:06 AM CDT

Happy Mother's Day!

Jessi is doing very well these days. She's walking, talking, and getting into tons of 2 year old trouble :-)

She is learning very well how to use her temper and manipulation skills to try and get what she wants. DEFINITELY like a normal 2 year old.

I'm not sure if she's had any more seizures. It's very hard to tell, which is why she's having the EEG and appt. with Dr. Frost next week. The drooling is a little better,
but it's still there, so we'll see.

Wednesday, May 4, 2005 3:41 PM CDT

Jessi has to go to Dr. Frost's next Tuesday for an EEG
and check up due to some excessive drooling from the
right side of her mouth.

Hopefully it's nothing, but better safe than sorry.
We went to the park today and then to DQ for ice cream,
she LOVED that.

Wednesday, May 4, 2005 9:46 AM CDT

Jessi is doing very well. Her staples and her cast come
out tomorrow. That's exciting. Her learning has slowed a
little, but she learned yesterday that the owl says "Who Who"!!!

She's doing just great. I'm so happy I'm able to be home with her for a while now. She is lots of fun to play with, as Grace could tell you. They play "chase" together now, and Jessi plays WITH her. It's so exciting.

Thanks for all the prayers and well-wishes.

Sunday, May 1, 2005 3:24 PM CDT

Jessi is doing well. She has slowed down a bit since we
got home developmentally. I think there was just this
big burst, and now it's slowing.

She is a little more like her old self, so I'm not sure
about the autism diagnosis yet. She is definitely MUCH
better, but we'll see as time goes.

She is walking I think better than she did previous to the
surgery, which is AWESOME!!

Wednesday, April 27, 2005 11:00 AM CDT

JESSI WALKED!!!!!!!!! We were trying
all day with her, and tonight while
I was on the computer doing my
homework, Daddy brought her in here and showed me something.

SHE WALKED!!!! Still wobbly, but mostly
independently! She never ceases to amaze us! Thank you to all who've been praying for her, and thanks to God for giving us such beautiful and wonderful girls!

Miss Grace finished Awana tonight, which is her church youth group. She passed and will be moving on up to the next level next year! WAY TO GO GRACIE!

Tuesday, April 26, 2005 1:51 PM CDT

Jessi is going home sometime TODAY! YEAH JESSI!!

We are waiting on discharge and I have to go and pick
up her prescriptions.

Dr. Ritter said we have to be especially careful with
her for the next 4-6 weeks, because if she falls she
could seriously reinjure her head. So when walking, her
hand needs to be held at ALL TIMES.

Only bad news is that she can't walk right now. It made
me really nervous, but Dr. Ritter said it should come
back with some physical therapy. This happened because
of the Corpus Callosotomy. But, he did say it should
come back, but could take a while.

Jessi also is in great need of her occupational therapist.
She keeps saying "What's that?" over and over again like she's scared, and sometimes like she's in a panic.

For those of you who dont' know what Sensory Integration
Dysfunction is, you wouldnt' understand, but before the
surgery Jessi already had a hard time "dealing" with the
world. So imagine her now that her head is clearer and
all this information is coming in all around her, and
she just can't handle it. So we need the OT to work on
her Sensory problems.

But, she's happy we're going home.

Sunday, April 24, 2005 10:24 PM CDT

It's 10:30 at night and they have to try and put a new IV in because her old one blew.

The nurse told us it blew because she had her feet on the floor today and any time their kids here try to walk with an IV in the foot, they blow. So the nurse is pretty upset.

Jessi only had 2 more shots of antibiotic to get in through that IV and it could have come out. But now she has to get poked AGAIN.

Sunday, April 24, 2005 12:50 AM CDT

I hate to get ahead of ourselves, but IF Jessi starts
eating and drinking better, than she can go home
TOMORROW.

Dr. Frost said he is very impressed with how quickly
she has recovered. He said her speech baseline appears
to be all the way back and maybe even BETTER than before
surgery!

YEAH JESSI!!!!!!!!!!

Saturday, April 23, 2005 2:11 PM CDT

Jessi is doing AMAZING!!!!!!!!! She is talking up a
storm today!! She is much happier. It almost feels like
she knows something is different.

She keeps saying "What is that?" to EVERYTHING. It's just
awesome. Thanks to all of you who have been praying for
her, it is definitely working!!!

We could be going home Monday or Tuesday!!

Friday, April 22, 2005 5:07 PM CDT

JESSI JUST TALKED!!! 23 hours after
her tuber resection and corpus callosomoty surgeries!!!!!!!!!!
They told us she may not talk for a
few days, let alone less than 24
hours later!!!!!

Jessi had her tuber resection and corpus callosotomy
yesterday. It was supposed to take about 5 hours and
it took about 9 1/2. The tuber was quite larger than
they expected, but they were able to take IT ALL!!!

No seizure thus far. Jessi is NOT a happy girl. Can't
blame her though. We're all waiting not so patiently
for her to speak.

Wednesday, April 20, 2005 12:30 AM CDT

Jessi is having her surgery tomorrow. They got great
information and a couple of her regular seizures so far
today already.

She had the pre-op MRI as well this morning. They were
able to identify both her language area and her motor
area, and neither one are near the tuber!!!!

So that is EXCELLENT news!!!!!!!!!!!!!!!!

Tuesday, April 19, 2005 7:49 PM CDT

Dr. Frost gave us a shocker today. He says there is
a 90% chance that surgery will be THIS Thursday.

Wow, I'm not sure what I think about that. She hasn't
even really had any of her "big" seizures, so I'm not
sure we're agreeing to it being that soon. We'll
have to wait and see what happens tomorrow.

Monday, April 18, 2005 7:46 PM CDT

Well, we aren't going to do the stim testing today
since Jessi hasn't had any of her "big" seizures, so
we have to wait.

Her head is itching like CRAZY, so they're trying
different things to help that. She was seizing her
sock off yesterday and today they tell me. It was to
the point where we couldn't tell whether she was even
having one or not.

Those were her "little" seizures. Dr. Frost says he
has so many of those on record now that he probably
wont' be able to even get through all of them.

So, now we have to wait for the "big" ones.

Monday, April 18, 2005 10:09 AM CDT

Jessi had a ton of seizures over the weekend, and they
actually gave her an extra dose of meds this morning to
STOP them.

Dr. Frost came in and he is going to come back later and
have me help him watch the EEG and pick out the seizures on camera.

They are also going to do the first "Stim test" today, which means mapping where her motor and hopefully language areas are.

So basically, we are moving more quickly than planned, which is good! If the surgery date changes, I'll le you know.

Saturday, April 16, 2005 10:37 AM CDT

Jessi is doing better today. She is talking and sitting
up. She is still swollen and in pain, but the pain meds
are helping.

We found out yesterday that Jessi is having new kind of
seizure in her sleep called myoclonic seizures, which
are a generalized seizure. She didn't have these before
either.

They look like when you have a dream that you're falling
and you "jerk" your whole body awake. I didn't think they
were seizures, but Dr. Ritter went back and looked at the
EEG right away to check and said "Yes, they are seizures".
So that's a bummer.

She finally had one of her normal partial seizure this morning as well, so that's good. We also found out that
Dr. Dunn placed more "hardware" in her head than planned.

They were only going to put the grid in the left temporal
area, but she also put a strip in the right frontal area
AND the left parietal area because she saw "something she didn't like". But Dr. Dunn and Dr. Frost both came yesterday and were very upbeat and happy and thought she looked great.

Friday, April 15, 2005 10:45 AM CDT

Jessi now has the Grid in. The surgery took about 6 1/2 hours total. Jessi did fairly well last night. She was nauseous and gaggy and then threw up.

She was in the ICU last night, but we're up on the Epilpsy Unit now. She has a temp of 100.7 so they are doing a chest x-ray and a urine culture and some blood work to check for infection.

Her left eye is totally swollen shut and she is pretty miserable today. They're using all the pain meds they can.
We're in room 7944.

The cut on her head is much bigger than I thought it would
be. And there is an additional cut across the top of her
forehead, and 5 I think it is, burholes for the wires to
come through. And the orthopedist recast her arm in the
operating room as well, and her messed with her arm to
try and put it back in place better. So her fingers were really swollen as well.

So she's in a lot more pain today, but we're doing what we can. She is being a real trooper though.

Saturday, April 9, 2005 2:17 PM CDT

Happy Birthday party day!! We're having Jessi's
birthday party today since she'll be in the
hospital on her real birthday.

It was a long couple of days at the hospital
for the MRI and MSI, but we're home for a couple
days now and we're going to enjoy it.

Thanks so much to all of you who have prayed for
her and supported us.

Tuesday, April 5, 2005 10:06 PM CDT

DON'T FORGET TO SPONSOR US FOR THE STEP FORWARD TO CURE TUBEROUS SCLEROSIS WALK!

YOU CAN CONTACT ME VIA EMAIL OR GO TO:
www.justgiving.com/pfp/jessi and donate there also.

Jessi is all right. She's tired and whiny and has really
bad diaper rash. Don't know if the diaper rash has to do with the Mysoline or not.

She had a prolonged cluster yesterday that we had to give Diastat for and it still didnt' quit for another 6 minutes, so it was 11 minutes total. She had one other seizure last night, and just 1 seizure today.

So, not too bad. We leave Thursday for the MRI and MSI.

Sunday, April 3, 2005 7:14 PM CDT

Hi All-

No seizures today yet to report.

ON MAY 22ND, 2005 THERE IS GOING TO BE A "STEP FORWARD TO CURE TUBEROUS SCLEROSIS" WALKATHON AT COMO PARK PAVILLION IN ST.PAUL, MN.

I AM RAISING MONEY TO WALK FOR JESSI.

IF YOU'D LIKE TO DONATE YOU CAN EMAIL ME OR VISIT:

http://www.justgiving.com/pfp/jessi

YOU CAN DONATE THERE AS WELL. PLEASE HELP US RAISE MONEY AND AWARENESS ABOUT TUBEROUS SCLEROSIS SO OTHERS WON'T HAVE TO SUFFER.

Saturday, April 2, 2005 4:53 PM CST

Jessi is pretty fussy right now. We upped her Mysoline, so that probably has something to do with it.

She had another grand mal seizure tonight that lasted
5 minutes. So that really stinks.

BIG NEW! GRACE PASSED HER KINDERGARDEN SCREENING!!!!!!!
So she'll be 4 when she starts kindergarden. She is a smart cookie let me tell you.
But she'll be the first one to tell you that "Jessi's smart too." Leave it to a child to be wiser than the adults.

She can see past all Jessi's "stuff" and just see her sister. And Grace is right,
Jessi is a smart cookie too.

Thursday, March 31, 2005 10:03 AM CST

Jessi hasn't had anymore Grand Mal seizures, thank
goodness. They upped her Mysoline, and she's had
some of her regular clustering seizures as well
as quite of few of her partial seizures yesterday.

She had a GREAT speech therapy session this morning,
she said 13 words, either spontaneously or with prompting.
That is so COOL!!!!!

Monday, March 28, 2005 9:58 PM CST

Jessi had another grand mal seizure. She started up with the clustering first,
did the grand mal, then did some more clustering. She added saliva and junk coming out of her mouth on top of the convulsing, blue lips, and gagging. She screamed for
10 minutes straight afterwards and didnt' want anyone to touch her. Then she got tired and went to sleep.

So that was her second grand mal seizure today. So I think we can safely say this is how her seizures are going to present for a while. That poor baby.

Monday, March 28, 2005 3:04 PM CST

Jessi has been having a few more seizures over the last couple of days.
Today she had a grand mal seizure following her normal cluster seizure,
it lasted 30-1 minute. I was so hysterical I can't be sure. I was running around
trying to get the nurse on the phone, so it seemed like forever.

Her whole body was convulsing uncontrollably, her eyes were rolled back and fluttering, her lips were blue, and she was gagging through some of it.
I just put her on her side and let her do it, which is all we can do. The doc said
that it's just another form of generalized seizure, but has no idea why it would change like that since we haven't made any changes recently.

So, surgery HURRY UP!!!

Thursday, March 24, 2005 11:00 PM CST

Not such a great couple of days. She's still happy, but her seizures have changed again. Now it's just one really nasty BAM!!!!!!! drop. If she's standing up she completely hits the floor.

At Pizza Hut yesterday, she did the partial seizure, which is the goofy right-sided grin and then WHAM her head just slammed into the table like I've never seen before. Her head was swelled and red, and she had no idea she had done it. Which is because she goes unconscious when that happens. She also gets all read like she's not breathing right before the drop. I called the nurse just to tell her of the change in appearance again, and she said at this point they aren't going to change anything, which is fine unless she starts having a gazillion a day.

She did three of those today. So we had 3 seizure-free days, which is lot more than we've had in a LONG time.
SO, HURRY UP SURGERY!!!!!!!!!

Thursday, March 24, 2005 11:00 PM CST

Wednesday, March 23, 2005 10:51 AM CST

OH MY GOSH!!!!!!!!!

Mary Conroy, scheduler extraordinairre called this
morning with DATES!!!!!!!!!!!

She will have a history and physical with Kathy Mayer,
Dr. Dunn's nures at 2:30pm on Tues. April 12th, and will
see Dr. Frost at 3:30pm. Then on Wed. April 13th, she will
have an MRI at 7:30am.

THEN, Thurs. April 14th, 1 day before her birthday,
she will be admitted at 6:30am for Grid Placement surgery
with Dr. Dunn at 8:30am!

The MSI will be scheduled somewhere in the week PREVIOUS
to all of this.

I can't believe it. Happy, scared, excited, terrified.

Tuesday, March 22, 2005 11:29 PM CST

Jessi's feeling pretty good right now, still no
seizures that we have seen. So, hopefully all
stays calm until surgery.

Saturday, March 19, 2005 11:33 PM CST

Jessi is home. The doc said her pneumonia
is ALMOST gone, and she has another 10 days
worth of antiobiotic to take for the aspiration
into her lungs. She is having less seizures and
is on less meds than when she entered the
hospital.

Three weeks "fingers crossed" to surgery we
hope. We're excited and scared. This could
change everything, or change close to nothing.
The odds are in her favor though I think :-)

Friday, March 18, 2005 11:19 PM CST

Jessi is going home tomorrow!!!!!!!!!!!

Temp is gone, and so is croup and pneumonia.
She's having less seizures than when we came,
and is off of 3 meds.

She's now on Neurontin, Tranxene, and Mysoline.

Bring on the surgery.

Tuesday, March 15, 2005 3:47 PM CST

Jessi should be able to come home tomorrow. She's still sick, her
temp went back up to 102 something this morning, but I think I'll
just have Dr. Frost call our docs at home and warn them she may
need more nebulizer treatments.

He is also going to show us the PETscan results, and finally gave
a good answer about her tubers. The reason they kept saying it
was her "fronto-temporal area" is that there are THREE tubers there
that believe to be causing the seizures. They need to do the MSI and
the grid placement for these reasons. They want to make sure how many
of those 3 are really the culprits.

One is in her left frontal lobe and the other two are in her left temporal
lobe. So they may have to cut out all three. He said they are close together
though.

He wants to do the surgery sometime after he gets
back April 9th. He will do the MSI the day before
the grid placement.

And I called the insurance company and the
surgery is APPROVED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Oh my gosh!

Monday, March 14, 2005 5:50 PM CST

The doctor just called me to say that he does not think her eye-blinking
is a seizure. Which is good, but I'm kind of not so sure. But, he's the
expert. He said they didn't correlate with the EEG all the time, and that
even if they were seizures they looked to be starting in the same area.

Jessi's still got croup, which she's still getting nebulizer treatments for, and
is still in the hospital. Hopefully going home Wednesday.

The MSI FINALLY got approved, and the surgery may be approved within
a couple of days. So, he must have kicked some butt.

Saturday, March 12, 2005 10:42 PM CST

Today has been Jessi's worst day ever. She kept
having her "new seizures". She started at I think
it was 1pm, and they gave her Diastat twice, and it
still didn't quit, so they gave her a double dose
of one of her meds and they finally quit at around
2:30pm.

Then they started again at about 3:20pm and they gave
her Diastat again, and they stopped about 4:30pm.

Then she woke up from a long nap at 7pm and started
AGAIN. More Diastat, an extra dose of a med, and
starting a new med Mysoline later, she stopped at around
9:30pm.

The on-call doc got to see them and she actually did
some of her other normal seizures along with these,
so I'm thinking they are definitely something different.

They are weird, they come and no predictable interval
at all. So it stinks, and she has croup, so they are
giving her some meds for that, and using a nebulizer
as needed to help clear her airway. But that sounds
much better tonite.

Friday, March 11, 2005 3:31 PM CST

Jessi's probably going back on the EEG. She had another 5 min. cluster
of those weird eye scrunching seizures. And 3 of her regular clusters.
Dr. Frost had said this morning that if she had any more of those new
ones, he would hook her back up.

So that's not good. It could just be a variation of her regular, or from
her fever, or a new kind.

So, we'll see what he decides.

Thursday, March 10, 2005 2:38 PM CST

Okay, bad news. Jessi started having
these weird blinking episodes at about 5:30 this evening. I kind of wondered if they were seizures, but we thought no way. So I asked the nurse and she wasn't too concerned at first. By about 7:30 I was worried. She was like squeezing her eyes shut and kind of wimpering like she does with her other seizures so the nurse looked at her again and was thinking maybe yes. So she got another nurse and she thought they were too.

So we timed how many she was having and she was having at least 1-5 of them per minute. So they called Dr. Frost and he instructed to give Diastat as he said they were seizures.

So by the time she got Diastat, it had been almost 3 HOURS. I'm feeling terrible right now. He doesn't sound worried, but I'm wondering if we did anything to her by letting her go that long.

Okay, Jessi has multiple small cysts on her
right kidney, but none on her left at this
time.

She is also having a type of seizure
called atypical absence. It is a type
of generalized seizure. When they
explained them to me, I realized they
were talking about the brief seconds of
staring off into space that she's been
having since she was a baby that we
had been told WERE NOT seizures. But
they are. So, that stinks too. It doesn't change anything in her treatment though, so that's good.
So she's having complex partial, complex partial secondarily generalized to tonic, and atypical absence seizures.

The developmental Psychologist came today to
do the official Autism screening for Dr. Frost.
It came out worse than even I expected. Dr. Frost
thougth she was more PDD, but boy was he wrong.

As of now she has a "Moderate Autism" Diagnosis.
No PDD, no Spectrum just Autism.

She scored as follows:
Auditory Comprehension: 10 months
Expressive Language: 8 months
Motor Skills: 13 months
Daily Living Skills: 11 months
Socialization: 6 months
Communication: 6 months

They did the Childhood Autism Rating Scale (CARS)
and the range from mild to severe autism is 15-60,
and she scored 42. Which put her at moderate autism.

So, that stinks. But she is writing that there is
a ton of potential for her when the seizures and
meds are under better control. And is putting in
for them to double her therapy.

Tuesday, March 8, 2005 6:32 PM CST

OKay, Jessi only has 1 rhabdomyoma left. It's weird they said, because
its really long, but not wide. But, it's not blocking anything or doing any
harm. He's concerned about her PDA, but still said it should wait until
after the brain surgery, because that's the priority.

So, no results yet on the renal ultrasound, and the EKG is tomorrow.

Tuesday, March 8, 2005 3:31 PM CST

Well good news and bad news. Bad news is that her EEG looks "Horrible"
according to Dr. Frost. It's a mess with constant activity. So he said he's
got a plan of action. He's going to have them start the paperwork for
her surgery TODAY!! YEAH!!!!!

He took her off of Diamox last night, and will start taking her off the Keppra
I think tonight or tomorrow. The Tranxene he wants to wait on until
closer to surgery, because it will be difficult to take her off of that one.

She is having an Echocardiogram, 12 lead EKG, and a Renal Ultrasound
today. And tomorrow the Developmental Psychologist is coming to get
a pre-surgery eval. on her for her Autism Spectrum Diagnosis.

That's all I know for now.

Monday, March 7, 2005 8:46 PM CST

First day in the hospital. Dr. Frost is our doc!!
Yeah!! He came in right away when we got here, and
she had a seizure in front of him. He's going to take
away her Diamox tonight, and then start on the Keppra.
He is thinking about the Neurontin as well.

She had TEN seizures so far today. That is A LOT more
than what she has been having. She had been down to 1
or 2. So that's no good. But, Dr. Frost said that she
won't have to stay hooked up to EEG the whole time
she's here, because they've done enough of that to her.

She will most likely be having a kidney ultrasound while
she's here, because we got some interesting news today.
We had always been told that Jessi DID NOT have kidney
involvement. But Dr. Frost's nurse said they had a note
that said her first ultrasound said she didn't but her
second, done here, said she DID. So, we're going to
have to figure that one out. So, she may have cysts on
her kidneys.

They are also going to hook us up with a dermatologist
in Milwaukee who does the laser surgery. She's starting
to get the redness on her cheeks, so they want to get her
in early to have the best chance of catching it and
reducing it as much as possible.

Ok, that's it for now. I'll tell you more as we know.

Sunday, March 6, 2005 11:26 AM CST

Jessi's story was in the Leader Telegram today.
Thank you to Alyssa Waters for doing such a great j
ob on it! It's in the Chippewa Valley Section, or Section G.

Jessi's doing ok today. She's had one seizure so far
and it was pretty mild. We leave for Minnesota tomorrow
for Jessi's 5 or more day stay. I'll be bringing a couple of
copies of the paper with us to show Dr. Frost and the rest
of the staff in the Epilepsy Unit.

Saturday, March 5, 2005 6:36 PM CST

We got some encouraging news about Arianna today. Her vision is getting
better, though it's not back to normal yet. She can move her arms and legs,
but still cannot stand. They are worried about that. She is talking, knows
who everyone is, and played with a puzzle yesterday, so that is great.

She's still on some heavy drugs to keep the seizures away though. She
is also still in D.C. and they haven't transferred her to Cincinatti. We
may be getting more info today, so I'll post more if we do.

KEEP ON PRAYING!!! IT'S WORKING!!! This little angel is just bound
and determined to prove those mean old doctors wrong! GO ARIANNA!!!

Thursday, March 3, 2005 4:23 PM CST

Well there is good and bad news about Arianna. The good
news is that she is out of status and is off of the
ventilator. The bad news is that the doctors are telling Bridget that Arianna will not be the same little girl she was before this. She cannot see and she may not walk again.

Please continue praying for her and I'll continue updating as I hear things.

Jessi had one seizure so far today, but it was a long one.
So, we'll see. She goes into the hospital on Monday.

Jessi's story is running in the Eau Claire Leader Telegram
this Sunday, March 6. It will be in the "Chippewa Valley"
section. You can also view it online at www.leadertelgram.com.

Wednesday, March 2, 2005 5:17 PM CST

The latest update we have is that Arianna is still
in Washington D.C. They did get status stopped
sometime last night, not sure when. The info is
slowly trickling in. She is still on the ventilator
and has not opened her eyes. But she is squeezing fingers
so that's a good sign. They are going to try and take
her off the vent. shortly since her O2 levels are up.

They aren't sure when she'll be stable enough to fly
her to Cincinnati. That's all for now, will keep
updated.

Tuesday, March 1, 2005 3:27 PM CST

Arianna's mom Bridget emailed us from her phone. As of 1:30pm, Arianna
was still in status. She is still on a ventilator unable to breathe on her own.
They are transferring her to Washington D.C. and once they hopefully get
her stablized they are transferring her to the Cincinnati,OH Tuberous Sclerosis
clinic that they go to. I'll keep you updated as I know anything.

SO, Arianna has been continuously having a seizure for a little over 3 hours.

Tuesday, March 1, 2005 12:29 AM CST

I posted earlier today, so if you want to see that,
go to journal history. But I have something MUCH more
important to post about.

Another little TS girl we know from PA, Arianna, is
in the hospital RIGHT NOW in Status Epilepticus, meaning
she is having a seizures non-stop. They cannot get them
to stop, despite various emergency means. Arianna
is on a ventilator and NOT breathing on her own.

None of the hospitals in PA want to keep her, the
closest hospital that will take her is in Washington,
D.C., but she can't be transported until she's stablized.

PLEASE PRAY FOR THIS LITTLE GIRL. She has been through
so much as well. She is one THREE MONTHS OLER THAN JESSI.

This disease is horrible. This little girl had her seizures
fairly well under control. It just shows how unpredictable this type of thing can be.

Please pray for Arianna.

Tuesday, March 1, 2005 9:37 AM CST

Hi All-

It's been a while. Jessi had one of her medications
upped, and it helped her go down in seizures a little
bit, but they're slowly creeping back up again.

BUT, Jessi did something she hasn't done since she
was about a year old. And I remember that Neurontin,
the drug that we upped, had good cognitive effects on
her, so I'm hoping this isn't short lived.

I said "Jessi where's Mommy's nose?" and she pointed
to my nose and said "Nose"!!! She did eyes once too.
But nose she did on Sat., Sun., and today! YEAH JESSI!!!

Next Monday Jessi is going into the hospital for a
minimum of 5 days to get weaned off of 2-3 medications.
They need to do it there in case anything were to happen
to her going that quickly off the meds. Since we arent
having surgery until April at least, we need to have
room to do other things with meds, whether it's retrying
old ones or whatnot.

So, that'll be lots of fun. If anyone wants to come and
visit us, that would be nice. It gets really boring
and Jessi gets restless. She'll be hooked up to her
EEG wires again for all that time, so she can't leave
the Epilepsy Unit.

Friday, February 25, 2005 6:59 PM CST

Jessi's been acting strange today. She keeps doing these weird blinking
things with her eyes. At grandma's house, she woke up , had a really bad
seizure where her head kept literally slamming into the table, and then
did this weird stuff.

At grandma's though, she raised her arms up in the air, blinked her eyes,
eyes rolled back in her head, and her head was going back and forth.
Then she did the blinking thing and eyes kind of rolling a few more times.
I haven't seen it yet, but grandma taped it. Grandma called the on-call
doc who doesn't even know Jessi and he said he didn't think it was seizures.

It's always a good sign when after you tell the doctor that she has TS,
Epilepsy, and Autism he says "Does she have seizures every day?"
to which grandma replied "Yeah, 5-10 a day sometimes". Stupid, they
should NOT have an adult epileptologist on-call and expect them to care
for the pediatric patients they don't even know. He thought she was just
doing "normal" 2 year old stuff. Yep, pretty normal. So, I'll be calling Carol
on Monday. It hopefully wasn't a seizures, but maybe some "weird" autistic
behavior.

So, the reporter talked to Dr. Frost today and he told her compared to other
cases of TS, Jessi has a SEVERE case. Well, geez, he's never even told
us that. But, I guess that's good for people to know. Especially since you
wouldn't know by looking at her that there's anything wrong at all. The inside of
her body is a mess. Heart tumors, brain tumors, brain abnormalities, etc.

Wednesday, February 23, 2005 5:55 PM CST

Well, the insurance company has made an enemy. I was
informed today that the neurosurgeon is on vacation in
March, so her surgery cannot happen until April.

So they are robbing her of yet another birthday this year. And they STILL haven't even approved the MSI test yet.
I have the Leader Telegram coming out tomorrow to do a story on Jessi, and you can bet where the focus will lie.

Jessi has had a TERRIBLE day. She has had 7 clusters already, with a bunch of partial seizures thrown in. She had to have Diastat. Dr. Frost is going to call back tomorrow as he would like to take her inpatient to try and get her off of 2-3 of her meds. He also hopes to try and find SOMETHING that will help her until the surgery.

They called her FRAGILE. That word scares me more than anything. If ANYTHING happens to her because of the insurance company stalling, they will pay. I can promise you that.

Tuesday, February 22, 2005 9:55 PM CST

I got a call back today from the people at IDS, or Integrated Development
Services. They are an intensive home therapy agency that provides
services out of Madision to children with Autism diagnoses. They are coming
to visit us on March 18 to get to know Jessi a little bit. They will then
decide how much therapy and what type she needs. We won't be able
to get these services for months yet though due to the back-up in Madison
for the Autism Waiver.

Jessi has a new trick. She is able to get out of her playpen on her own.
Jeremy was home with her this weekend and he put her in her room, and
all of a sudden she comes trotting out. She's done it several times each
day since. It's funny, but no good. What a stinker.

Tuesday, February 22, 2005 0:20 AM CST

We are downing Jessi's Tranxene since she's pretty
unsteady and irritable. She's probably going to have
more seizures, but it's trade-off. At least she isn't
hurting herself running into everything and falling down.

No word yet on the tests. I am really upset with the
insurance company. The nurse told me it sounds like
they are just stalling things. So, at the advice of my
mother I wrote to 9 different media outlets, both newpapers and television. So, we'll see what happens.

People should know more about TS anyway, so what can it
hurt? And maybe the insurance will get their butts moving.

Sunday, February 20, 2005 1:01 PM CST

Jessi is doing alright. She didn't have a great day yesterday, she
was very unsteady and drunken. She only had 2 seizures though,
but one was pretty hard.

We got the report from the Speech Pathologist from Marshfield that
recommended the Austism Spectrum Diagnosis. She used two
different checklists and reports that check skills that a child should
have from birth to 9 months. Jessi is 22 months. She missed skills
on the first checklist in showing and bringing you something and
joint attention skills.

On the second checklist, which is more specialized she did the
following:

1.Imitation-She passed 2 of 3 areas.
2.Receptive Language-She passed 4 of 6 areas.
3.Expressive Language-She passed 6 of 8 areas.
4.Engagement/Co-Regulated Reciprocal Interactions/Pragmatics-
She only passed 3 of 11 areas.

The biggest problems are: No danger awareness, no stranger anxiety,
not proper imitation of facial expressions, not proper imitation consistently,
trouble differentiating between friendly and angry tone of voice, fascination with
hands, looks at my mouth while I"m speaking, but not others, unable to share engagement for 30 seconds, when she looks at you it is more of a stare look
versus an interactive look.

The therapist's final notes were:
Jessi's interest in people does not appear to be so much social as it is watching you.
Jessi is demonstrating some pretty severe engagement issues beyond what one
expects for tuberous sclerosis and more in keeping with what one sees on the
autism spectrum.
Receptive/Expressive language skills commensurate with that seen on the
autism spectrum.

Jessi needs intervention to focus on communication interaction, follow-up through
the Autism Clinic, Work out of the "More Than Words" book given to mother,
and like to reassess after her surgery.

So, that's the Speech person and I'll let you all know when I get reports from
the Occupational Therapist and Dr. Campbell. The Speech Pathologist had
been very hesitant to diagnose a kid with TS with Autism as well, but her
note on the engagement problems is what changed her mind. So, that's kind of
stinky, but what we thought too.

Remember, while she passed some of those tests, they were meant for
children at 9 MONTHS OF AGE. So she is over a year behind on all of these
things. But, with good potential with lots of one-on-one therapy.

Wednesday, February 16, 2005 11:48 PM CST

Jessi had 5 seizures today, so not so good.
She was very whiny and irritable. We went
to the McDonald's playland today, and she
DID NOT do well.

She would try and play on the floor by herself
and would last maybe 30 seconds at the max.,
and then cry and want to be picked up. She didn't
want to play with any of the kids. She just carried
a lego or her my little pony around and circled
around the room.

She tried climbing up into the tunnels, but didn't
really get too far. And wouldn't let me help her.
She also tried to escape twice, and would go up
to strangers to have them pick her up. So, that's
not good.

Someone could steal her very easily. She doesn't
have normal "stranger anxiety". The SP said that's
not good.

So, not a great day on the whole. But we did have
a few smiles, so it wasn't a total bad day.

Tuesday, February 15, 2005 5:43 PM CST

Dr. Campbell just called and we talked about the Autism Spectrum
diagnosis. She fully supports it, and will help us in any way she can.
She just wants Jessi to get all the help she can as well.

The plan is to see her again in 3 months, depending on when the
surgery takes place. Dr. Campbell also said she's interested to see
what happens withh ALL of this stuff after the surgery.

So, we're very lucky to have Dr. Campbell back with us again. She
spent 20 minutes on the phone with me tonight answering any questions
I had and talking about Jessi. It's great to have doctors who care about
your kids.

Tuesday, February 15, 2005 5:03 PM CST

Jessi's seizures are continuing to get a little bit worse. So
they decided to up her Tranxene dose another whole pill
in the afternoon.

We're awaiting Dr. Campbell to call back this week to discuss
Jessi's Autism Spectrum diagnosis, and what happens from
here.

We also could use some extra prayers that the insurance people
would get moving on Jessi's preauthorizations. They haven't even
approved her MSI test yet, which is a test she needs done BEFORE
than can even go about scheduling the surgery. This is taking a lot
longer than it was supposed to.

Friday, February 11, 2005 11:44 PM CST

Jessi is still having multiple seizures
every day. But she's doing ok.

I'll post more specifics later, but just
wanted to add that I changed the photos
in the album.

Wednesday, February 9, 2005 2:38 PM CST

Well-

It's been awhile since I posted. Seizures have
been up and down and we upped a med yesterday.

The big news is we went to Marshfield today to
see the Speech and Occupational Therapy people.
Here it is folks. They are telling Dr. Campbell
to officially diagnose her with Autism Spectrum
Disorder, which is Autism.

So, the good part of that is that she will be
able to get much more therapy. They both felt
she has very good potential for learning with
intense therapy.

They have very special criteria for diagnosing
these things, and they found her to be showing
signs in areas that even I hadn't really noticed.
I just was so used to her doing things, because
that's "Jessi".

So, a little sad, but now at least we know for
sure.

Thursday, February 3, 2005 1:01 AM CST

Got some good news today.

If any of you don't know, Jessi has problems
with auditory processing, which is if you
speak to her it takes her awhile to process
what you've said. A lot of the time she just
doesn't understand at all. She has the most
problems with questions.

So, what we've been working on is saying things
like "Where is mama?" or "Where is the clock?"
Clocks are her "thing". She can find them in
any room.

So today I asked her where the clock was and I
pointed to it and she pointed and said "Cock".
So I then right away said "Where is mama?"
and she turned to me, patted me on the chest,
and said "Mamamamama"! This is HUGE!!!!!!!!!!!

I couldn't get her to do it again, but to know
that just that one time she understood what we
said that quickly was amazing!!

She only had 3 seizures today, which is good.
But we haven't changed anything, so that just
goes to show that her seizures do whatever they
want to no matter what we do :-)

No new news about the surgery yet, but I'll let
you know when we do.

Sunday, January 30, 2005 7:37 PM CST

OK-

Bad news first. Jessi had 9 seizures yesterday.
Four of them occurred within 8 minutes last night
so we had to give her Diastat. She's had 5 seizures
so far today. So that's not good, and they are
back up to some of them being 2 minutes long or
more. She did have one today though that was only
30 seconds.

Ok, good news now. SHE IS TALKING TODAY!! She said
mama, dada, gapa, gama, clock, more, and amen. It
wasn't anything real consistent, but she was talking!!
And she's happy and giving hugs and kisses.

So this makes not much sense at all. More seizures
equals more talking? I don't care why she's happier
and talking more, I just hope we can keep it until
she gets to the surgery.

Friday, January 28, 2005 6:33 PM CST

We're back from Detroit with some good news.
The tuber in the left temporal lobe IS the one
that is causing her seizures.

That's what Dr. Chugani told us today when he
looked at the pics. He said he'll know more
after he fully analyzes them but that this
was very good news. He said he could see off the
bat four tubers and that there would probably be
more when he analyzed them. But still just the one
is the temporal lobe for seizure activity.

It appears to be very large, taking up a great portion
of the lobe, but he said he'd have to do the
calculations to be sure how big it actually is.

So we're back, we're tired, but we got good news.
According to Dr. Frost's office, surgery will be
scheduled for hopefully the end of February.

So, we will need help with people either staying with
Jessi in the hospital or taking care of Grace as
the surgery will be a 3-4 week process.

I will have to work some as will Jeremy, because we
can't afford not to.

Tuesday, January 25, 2005 9:58 PM CST

Quick Update-

We leave at 8 am for Detroit tomorrow, we'll be back on Friday.
This is for the long-awaited PETscan. Yeah!!!

Jessi got a few new hives today, 2 of them on her face. So
they are having me give her Benadryl to make her feel better.
So, she was definitely very allergic to the Lamictal.

She had 6 seizures yesterday, and 5 today. Shorter, but a little
different in appearance. But, she's much happier, and more
drunken. Oh well, hopefully this PETscan gets things moving.

Sunday, January 23, 2005 11:40 AM CST

In the midst of everything else going on, I forgot to say what
the biggest problem was. Dr. Frost retried the Lamictal at
a lower dose than what she had been on. She got one
dose yesterday.

This morning, she woke up with hives all over her legs and
starting on her back. So SHE IS allergic to the Lamictal.
That is why we're stuck again.

So she is definitely allergic if it only took one small dose
to bring on the hives.

Sunday, January 23, 2005 11:15 AM CST

Jessi is still in the hospital. Her seizures are getting worse. She
had 8 clusters yesterday and 2 so far today. The eye-rolling
started back up today again too.

Dr. Frost suggested three medicines that we have already used.
So, I don't know what's going to happen now. He told my mom
that we've pretty much gotten to the end of the medicines. Great.

Friday, January 21, 2005 7:58 PM CST

Jessi is actually doing better today of course.
She's only had 2 seizures that we know for sure.

Dr. Ritter said he's going to try and figure out
why she's so irritable, and what's going on.
Dr. Frost, who is our actual doc, is on for the
weekend, so we'll actually get to see him for
once :-)

Our friends Eileen and Mary Hable are going to
come and visit us tomorrow, so that will be fun.
Mary is a little girl who just had the surgery
Jessi will hopefully be having. Mary has TS as
well.

Also, there's a shindig here tomorrow for the
"Center Without Walll" which is an organization
here at the hospital that will be a TS clinic.
So, that's cool and very coincidental that we'll
be here to go to that. It will be a group of
docs that specialize in all the areas where you can
have problems with TS. Like neurologists, epileptologists,
cardiologists, dermatologists, and nephrologists.
People with TS can make appointments with these
people. It will be so great for those people who
don't have anyone who really knows about this
disease.

So, it's good to know Jessi's in good hands.
She's NOT in a good mood, she's very fussy and
mean right now. She hit Dr. Ritter and grabbed his
nose and latched on. So he knew she definitely is
not the same happy kiddo that she's been.

I'll keep you up as I find anything out.

Thursday, January 20, 2005 11:02 PM CST

Just a quick update. Things are not good right now.
Jessi was admitted again this evening to the
epilepsy unit in St. Paul. She appears to be having
very frequent "subtle" seizure activity that we
are only able to stop for a couple hours at a time.

It does stop on its own at night, which is strange.
So we're hoping they can give us some answers.

Jessi isn't sick anymore, so I'm thinking her rash
may very well have been from the Lamictal. She didn't
get the cough, sore throat, or hoarseness the rest of
us did. And her fever was much higher.

So, I'll let you all know as I find anything out.

Sunday, January 16, 2005 10:36 PM CST

I thought I was going to have good news to post
today, but I don't. Jessi didn't have any seizures
until 2:30 pm, but then they wouldn't stop. She
was having partial seizures every 2-3 minutes, with
some clustering thrown in. So I gave her some Diastat,
but 2 hours later she had a pretty bad clustering
seizure.

So, I called the on-call, Dr. Ritter, and he had
me give Jessi some more Diastat, and said that if
that didn't work we were going to have to go the
ER and get some IV meds. Thankfully, the seizures
stopped.

So, we'll see what happens tomorrow. No rash yet.

Friday, January 14, 2005 3:52 PM CST

Jessi is continuing to have clusters ranging from 2 minutes up to
5 minutes in length. She had 5 clusters yesterday, and 2 so far
today. She has been very sleepy and irritable today. We can't put
her down for more than a couple of minutes without her crying.

Carol called and said to decrease the Diamox over the weekend
and to start the Lamictal. She is going to call on Monday with a
plan to get her all the way off of the Diamox.

So we are now on rash watch. She is already a rash kid, and this
drug has as high as a 1 in 50 to 1 in 100 chance of a rash. This
rash can progress to something called Stevens-Johnson syndrome,
which can be potentially fatal if you don't stop the drug immediately.

The Lamictal also can interact with her Depakote, and cause the
drug levels to go higher and stuff like that. So we have to watch out
for an increase in side effects. And the Lamictal takes 6 weeks to
get it to the level where they believe it would be effective for her.

But you have to go that slowly because of the rash possibility.
So now we wait and see.

Tuesday, January 11, 2005 4:14 PM CST

Well-

Yesterday Jessi had 8 clusters of seizures. And
today so far she has had 5. Three of those clusters
were 5 minutes long. That is NOT good.

Carol called from Dr. Frost's office and they had
the surgery conference. The neurosurgeons decided
it would benefit Jessi more to do the Corpus Callosotomy at the same time as the Tuber
Resection. That is good news, because that means
they think there is enought evidence to suggest that
they can take that tuber out.

So, they are going to go ahead and try to get the
surgery scheduled now. That is HUGE since they
would usually wait until after the PETscan results
to do that. So that will stop us from wasting another
6-8 weeks waiting.

They also want to do a test called a MEG/MSI, which stands for magnetoencephalogram/magnetic source
imaging.

It's another test that they have in MN that
can help pinpoint the location of the tuber as well.
I remember from the TS conference last May that Dr.Dunn, the neurosurgeon, mentioned this test.

So, that is all good news, but I was disappointed that
it will be at least 2 months now. But it could be
longer if they weren't pushing it, so just trying
to be happy.

Carol is going to call back tomorrow after Dr. Frost
decides which med to put her on now. The Diamox is
officially a failure.

Jessi ended up with a seizure count of 6 today,
but she was in her room a lot, so it could have
been more.

So, I'll keep you all updated as I find out anything
more.

Sunday, January 9, 2005 8:59 PM CST

Jessi had 4 clusters of seizures yesterday, and 1 partial seizure.

Today she had 4 clusters of seizures also. She was pretty crabby
today. So I would say the Diamox isn't really working, since these
have all been pretty long clusters.

So, I'll call Carol in the morning and see what's going on with the
surgery conference.

Saturday, January 8, 2005 2:16 PM CST

Jessi had 6 clusters of seizures yesterday. They were all pretty
hard on her. She was pretty tired. But she was still a lot happier
yesterday which was nice. She just gets very whiny and wants
to be held all the time.

On a good note, Jessi seems to be taking to the PECS cards.
The Speech Therapist had us start with the card for "eat" and
the card for "more".

Yesterday, before each meal I put the "eat" card in front of her.
I asked her if she was ready to eat and pointed to the picture.
I then said "give mommy the card" and pointed to my palm.
I had to help her a couple times. Then after that I gave her
the card more "more" and asked her went through the same
process. She still requires assistance, and she's not real
consistent, but she's getting it!

Grace and I clapped and cheered and acted goofy, so of
course Jessi thought that was hilarious. So she started
clapping and laughing too. So she understands that giving
me the card is what she's supposed to do, so now we just
have to work on her knowing WHY giving me the card is
what she's supposed to do.

She'll get it.

Thursday, January 6, 2005 8:01 PM CST

Well-

We will be off the Gabatril completely on Monday.
I'm supposed to call on Monday and tell them if
I think the Diamox is working.

The Speech Therapist did an evaluation today,
and she was the same as 6 months ago. She actual
age is 21 months but her speech is at a 6-9 month
level with scattered skills up to her age. She gained
a couple of new things, but she also lost some of
the stuff she had before.

Dr. Frost's nurse was glad I told her this, since
it will work in our favor when they go to surgery
conference next week. It stinks that to help out the
surgery process she has to be a year behind in speech.

Jessi had 9 clusters of seizures and 4 partial
seizures yesterday. Today, I'm not sure yet.
Before I went to work she had had 4 clusters of
seizures.

The more I read up on the Corpus Callosotomy, the
more I hear that this WILL NOT elimate her seizures,
and that she may actually have MORE partial seizures.
BUT, that would be ok until we get to the other
surgery then.

The partial seizures won't hurt her like the generalized
ones have this far.

Tuesday, January 4, 2005 7:15 PM CST

Oh my goodness big news today! But first, they think the Gabatril
is making her worse, so they are starting her on a med called
Diamox, which isn't even a seizure med it's a high blood pressure
med. But for some reason it has helped TS kids. Then they are
going to take her off the Gabatril.

Okay, so on to the BIG news. Carol, his nurse, told me Dr. Frost
would like to present her case at surgery conference NEXT WEEK
for not the tuber resection but a surgery called corpus callosotomy.
I didn't even know this was an option. I knew what it was, but no
one mentioned it. I basically think it sounds like they are just trying
to make her seizures stay partial and stop them from generalizing
until we can do the other surgery.

A corpus callosotomy is where they cut the fibrous membrane between
the two hemispheres of the brain. It should stop her seizures at least
some of the time from going from partial to generalized. So she would
just have the goofy grin and staring and not also the head dropping and
eye-rolling.

We could be going in in 5-7 weeks, so they are hoping they would have
the PETscan results then and could go ahead and do the other surgery
then either in addition or instead of the CC.

We're excited and nervous, and afraid to get to hopeful. Carol is calling
back tomorrow and we are going to discuss this more. It's good news,
just sooner than expected.

Monday, January 3, 2005 3:30 PM CST

We finally recieved a PETscan date today!! It's scheduled for
January 27-28. So that's a relief.

Unfortunately, Jessi's seizures are getting worse I would say.
She is awaking numerous times during the night with what are
presumed to be seizures. And the last 3 days a new pattern
has emerged.

She is free of seizures in the morning until about 12:15-12:30pm,
and then they start about hourly on the clock the rest of the day.
And then throughout the night as well. So we are having a
VERY difficult time getting her to sleep, even though she is
exhausted. Every time she falls asleep she wakes back up soon
after and has another seizure.

So, I'm awaiting a call from the doc's office to see what we can do.

Thursday, December 30, 2004 5:17 PM CST

Well-

Jessi did some IMAGINARY PLAY today!!! YIPPEE!!
She played Peek-a-boo with her baby and tried
to "feed" her as well. That's really exciting,
I can't wait to tell her therapists!

She's only had 2 seizures today, but one of them
was a pretty long one. But it has been a good day on
the whole.

The PETscan should get scheduled on Monday and
we'll go from there.

Thursday, December 30, 2004 5:17 PM CST

Tuesday, December 28, 2004 3:49 PM CST

Jessi did fairly well over Christmas. I won't get into any specific things,
but there were a lot of seizures. There was also a more obvious difference
between her and her cousins. So yesterday I talked to Dr. Wolter, and
he is going to write a letter to Dr. Swink to have Jessi evaluated for
an autism spectrum disorder.

There are just too many things that are not quite right. There's something
wrong when the kid has no interest in opening her presents or following
her cousins around the waterpark and sliding down "with" them not next
to them, if you know what I mean. But the worst was when I walked down
the stairs to see the other three kids huddled around a little Elmo TV thing,
and Jessi was sitting a few feet away ignoring them playing with a bottle
of lotion.

She had 9 seizures Wednesday, 9 seizures Thursday, 8 on Friday,
7 on Saturday, 4 on Sunday, and 7 yesterday. There are 4 already today.

Sunday she only had 4 because she ended up with an "overdose" of
the Gabatril from upping the dosage too fast. She was "floppy" like falling
face first in her high chair, on the floor, etc. Very lethargic and acting strange.
So we had to down the dosage, which the nurse said really doesn't matter
since it's not working anyway.

So, we're still awaiting the PETscan, they are expecting a date any moment
now. ALL the paperwork is in, they just need the official OK to schedule it.
The doctor doesn't want to mess with her meds anymore before the PETscan
if we can help it, so hopefully that means they are trying to get her in soon.

I'll keep ya'll updated as I know anything else.

Monday, December 20, 2004 7:26 PM CST

Well-

We are upping her Gabatril more quickly than we anticipated, since she
is still having 5 or more seizures a day. So, we'll see how that goes.

Jessi's speech therapist said she's put Jessi at about a 15 month
level in Expressive speech, which means the words she says.

But she said she would score much lower in her Receptive speech,
which is what she understands and comprehends. So, we're making
some progress, but she just gets stuck.

She seems to not retain a lot of what you show her. The therapists
are working on all this in a team effort. We have chosen to work on
animals and animal sounds first. So the speech therapis, occupational
therapist, and her teacher all are working on the same things in different
ways.

The Speech therapist is also working on her oral input problems. She
has a little troubel eating because she feels the need to stuff her mouth,
and can't take little bites as well. So they have us working with a "chewy tube"
and another sort of gadget to try and get her to stop doing that. This will
also hopefully make her stop putting EVERYTHING in her mouth and
not eat sand and rocks.

The Occupational Therapist is working with her on all her other sensory
problems. This includes doing deep joint pressure squeezes and "brushing",
which Jessi really likes. They said Jessi has a big problem knowing where
her body is in space, so the therapy we do "grounds" her. This should
lead to less "circling" and spinning and allow her to be able to sit for
longer periods of time and concentrate.

The OT brings a kitchen timer, and sets it to 3 minutes, that's the goal.
3 minutes of sitting and playing with one thing. She has done it ONCE.
But, Great-Grandma Heffelfinger sent us these really cool blocks for
Christmas, and I've gotten her to sit at home with Grace and I and play
with them for more than three minutes a couple of times. Thanks Great-
Grandma and Grandpa!!

Sarah

Sunday, December 19, 2004 0:18 AM CST

Jessi started the Gabatril today, so we'll see how
that goes. She had 7 seizures today, but she was
still pretty happy.

She tried to build a tower with blocks today, and
she tried to copy me a little when I said Up and Down. So,
she's trying!

Sarah

Friday, December 17, 2004 7:12 PM CST

Well-

The tentative plan for Jessi is we are starting a new med called
Gabatril. It is very similar to the Neurontin, so we'll see how that
goes. Dr. Frost sounds like he pretty much thinks that we will
end up to do surgery.

He said that this drug may work even though the Neurontin didn't
because Jessi "didn't read the book" on how she's supposed to
react to these meds. The only other med he mentioned was
Lamictal, but there is a more common occurence of a rash and
it takes about 6 weeks for enough to be in her system to be
effective. He thought that we needed a quicker fix if we could
find one.

They are just perplexed by her I think. She had 11 seizures two
days ago, 6 yesterday, and only 1 prolonged one today. She
should be having more, since we stopped a med. So they don't
know what to think. She's just unpredictable that way.

It's good to hear they are all worried about her. It seems like they
are really working hard to try and help her.

Friday, December 17, 2004 12:00 AM CST

Well-

Insurance is fun. They are refusing to pay for two
of Jessi's hospital bills. I won't get into it, but
I have been assured by a medical assistance troubleshooter
that these will be paid.

And we found out the insurance won't pay for our plane
ticket to Detroit for the PETscan, but our county worker
found a place called Angel Flights, that will fly
us privately for free. So that's great!

Jessi had to have Diastat this morning due to a prolonged
seizure, but that's the only one today so far, so that's
good. She fell though after she had the Diastat, and got
a bloody lip. She's sleeping now, so hopefully she
wakes up in a good mood.

Wednesday, December 15, 2004 9:37 PM CST

Well-

Jessi does have a rash. It popped up in a couple
of other places. We aren't 100 percent sure it's
a drug rash, but better safe than sorry. The Zonegran
wasn't working anyway as she had 10 seizures again
today. So, we're supposed to call the doctor tomorrow
and tell him if it looks any better.

Ah the drama...

Wednesday, December 15, 2004 2:36 PM CST

Jessi's PETscan got APPROVED!!!! Now
we're on to scheduling.

Tuesday, December 14, 2004 4:56 PM CST

Well-

We thought she had an allergic reaction
to the Zonegran, which turned out to be
a false alarm. So, we'll see what happens tomorrow.

And I found out the insurance company DOES NOT have to make a decision within 20 days, it can take as long as it wants. SO please pray for a speedy decision on the PETscan preauthorization. We finally found someone who can go directly to the people working on Jessi's case to try and persuade them.

Sarah

Sunday, December 12, 2004 9:27 PM CST

On a great note-

Jessi climbed on the couch by herself today.
And she climbed up the slide and slid down
by herself for the first time. AND she listened
to my voice on the phone and laughed instead
of cried, and said MAMA to me on the phone
for the first time.

For those of you who don't know her that well,
these are HUGE accomplishments for her!
Keep praying that the Zonegran will work.

Sarah

Sunday, December 12, 2004 3:12 PM CST

Hi everyone-

We decided to make this page, to keep
everyone updated on Jessi's progress.
We thought thiswould be easier than
emailing you all the time. Jessi is doing
a little better today. She's only had
two clusters of seizures today. One was
3 minutes and the other was around 4
minutes. So maybe the Zonegran will
help a little bit :)

Thanks for all the prayers and well wishes,
we appreciate them.

Click here to go back to the main page.

----End of History----