Autism, Epilepsy and Type 1 Diabetes Blaaahhhh

     Sometimes Type 1 Diabetes gets in the way of Autism and Autism gets in the way of Type 1 Diabetes. Today, Epilepsy took center stage. I try to keep things in little buckets and only think about one thing at a time, but occasionally that does not work.
 
     Like today. Keira had a Neurologists appointment at 10:30 and Kailyn had a Diabetes Appointment at 11:30. Then, Keira has her ABA teacher come to the house every day at 12 noon.  I had to choose and Autism/Epilepsy won by default.  Kailyn has NEVER needed a referral to the Endocrinologist nor have we had to pay a copay, but apparently we now do. I learned this when I opened a bill from her last visit on Saturday. Maybe too many children with Type 1 Diabetes are going to the Doctor so they can get their medicine and supplies to LIVE.  So, they decided to crack down on that. I mean really, a documented Type 1 Diabetic NEEDS a referral to get info on how to live and prescriptions to keep her alive? SERIOUSLY?

     The Neurologist appointment was normal. We talked about her seizures, looked at a recent video I took and talked about medication to keep the seizure monsters out of her brain.  Then came the news that her genetic deletion has now been linked to Epilepsy. She is no longer considered a Child with Benign Epilepsy. Now, she is considered to have Early Onset Epilepsy. All because of this gene mutation. I have to admit, I am taking it hard. Benign means she would outgrow it. Early onset means it is with her for life. I can't find much info on it either, which is frustrating.

     However, I am trying to take it with a grain of salt knowing that the research on the deletion is in its early stages.  And frankly, Doctors DO NOT know everything. It is a science. If they knew everything they would be able to tell us what the heck was going on! In my opinion, she has a form of Developmental Delay/Epilepsy that does not have a name yet. We go to Children's Hospital Boston in April (I have had this appointment since December) for a second opinion from an Epileptimologist that specializes in child development. They are ranked #1 in the nation. She may say the same thing, she may not. But, at least we are doing all we can to help our child meet her fullest potential in life.

It's Feeding Tube Awareness Week and I Love a Tubie!!

     Just about every disability or illness has a week, a day or a month now and feeding via G-tube is not excluded. I Love A Tubie is the slogan for the online support group for people with children with G-tubes. Without these tubes people like my little Keira would not be alive. I am so happy I live during a day of modern technology. Looking from the outside you would never know that Keira is fed via G-tube. She gets 24 ozs of pedisure a day. She also eats and drinks regular food. We have tried to wean her twice, but this last time seizures started again .I can't remember why it did not work out the first time? Sometimes the details get lost in my brain.  She got a G-tube when she was diagnosed with failure to thrive due to having seizures every time she ate. She would drink her bottle as fast as she could to get enough nutrition to keep herself alive. So here is a montage they put together showing different families living with G-tubes.

 

And here is my little Tubie Right After getting the G-Tube in Oct of 2011

Nov of 2012

Make a video - it's fun, easy and free!
www.onetruemedia.com

PHEW!!

White rabbit, white rabbit, white rabbit!!! (superstitious good luck stuff) Yesterday was a day for the record books. The day started off rough, rough, rough, and ended rough. But, we made it through. I can happily report that my kids went off to school without a hitch this morning. A new routine has been implemented to make things go more smoothly. Sometimes things need to get shaken up! 
Anyway, today is the first day of Keira's official 10 hours a week of being in the 0-3 ABA program. She will have a teacher with her 4 days a week in our home. Mon-Thurs. During what was formerly known as her nap time.(This should be interesting) I am letting her have a little free time right now because she is going to get tired out with the constant one on one teaching. ABA is the only scientifically proven way that effectively teaches kids with Autism, but I think it can be used with kids that have other developmental delays as well. Her previous therapists do not believe in it and we did not click because of this. I know it works because Sam has already benefited from it. He was diagnosed with moderate Autism at 3 and is now in a regular classroom without supports or Special Education. He is on the "Tier" program, but I predict that is where he will stay. He is at grade level in all subjects now.
This is my hope for Keira in five years. I opened my blog back up to hopefully document her progress from my prospective. She has different challenges than Sam (Epilepsy and G-tube feeding), but hopefully we can find a way to tackle those issues in the future. Early intervention is the key and I plan to provide as much of it as I can for her. Hopefully, I will get to hear her say momma to me sometime soon!

ps: They canceled. Her teacher has a stomach virus.

"I wonder if 2011 will be boring?"

These were the words out of my husbands mouth last night. I paused for a minute and wondered what boring meant and thought to myself: "Oh, he meant no major anythings!"   My answer: "If we look at the last 3 years the percentages are not on our side. Lets hope for normal, whatever that is?"

Bad major things the last three years (............. means I'm not telling you! lol)

Autism Diagnosis
Type 1 Diabetes Diagnosis
......................
......................
Gall bladder surgery
Unplanned Pregnancy (Such a blessing that I could not imagine life without)
.......................
.......................
----------------
Birth of our third and last child, which led to....
Pulmonary Embolism and DVT. Good chance of dying.
Recovery of the above PE and DVT (So much pain)
Infantile Epilepsy
Trips to Boston
Failure to Thrive
G-Tube Surgery
Weight Gain (Me)

Good things:

My husband: He is healthy (as far as I know) continues to be able to provide for us, is a great father and my rock. Things get rough, but we always make it through it.

My children: Sam has made improvements by leaps and bounds. No one would know he was diagnosed with plain Moderate Autism 3 years ago.  His report card was a pleasant surprise!! We are getting use to life with Type 1 Diabetes. We would rather Kailyn not to have to deal with this, but she is thriving in and out of school. Keira: The fact that she was born!! I can not imagine life without her. She is so much fun, an easy baby besides the whole epilepsy thing, and just pure joy!! Just as recently as 3 weeks ago was the last time we saw a seizure and she is now in the THRIVING category. Gaining new skills every day. We got the all clear after an upper GI yesterday to get her therapy to try and get rid of the G-Tube. We hope to see continued Physical development.

My Extended Family: We could not have made it through the above without them. We love them very much and are thankful for EVERYTHING that they have done for us.

Here's to a non-chaotic and Happy New Year!!! :)

-Kristen

Keira saying spider, trying hand movements, saying all done and momma! Huge Developments!!

I am holding my breath that this is the beginning of more to come!!!  Notice her saying spider, momma and all done. It does not have to be said correctly for it to be counted as a word.  She also tries to do the hand movements and screams at me when I stop usually, but this was not caught on the video. :)  This all took place around 1am because her teeth are hurting. You can see her put her fingers in her mouth too.




PS: No seizures still except for when she was sick with a very high fever!!  Starting Stage 1 baby food, but she refuses to drink using any sort of cup or bottle.

On a hunch

Call it mother's intuition or just a gut feeling. I decided that the Zonisamide was not helping Keira's seizures.  Her seizures are triggered by sleep (among other things) and the Z med is not only known for making kids sleepy, but for making them have more trouble thinking/concentrating.  I got Seth on board and we slowly titrated her down to zero. Her last dose of  Z was on Tuesday and the last seizure we saw was on Tuesday so far. I am knocking on some serious cyber wood. I have been hesitant to say anything only to have them return the next day. BUT, I DO want to say something!! She has had a few random days without seizures, but none were consecutive!! This is 4 days without any noticable seizure activity.
We have seen a few other developments and go to the Neurologist on Monday.  She is only on Depakene 3x's a day now. Still a hard core drug for her little body, but she has made great strides since her surgery on October 20.  The most notable being her chubby little cheeks.

One of those normal beautiful fall days (at least for us)

When the kids play outside while your Mother in law (Thanks Grammie) rakes the leaves in your yard because your husband is on call and was up all night.  He did help, but looked like he was going to fall over doing so.

When you are still staining the deck because it is a project you did not realize would take so long. I have one side to go and it WILL get done tomorrow. Along with the raking as long as Seth does not get called out again.

When your baby crawls around in the leaves with delight. Exploring the world of fall that she has not gotten to do before because she just started to crawl and pull up to her knees on to things. This all started once she got the G-Tube.

When your kids talk your head off non stop about what they are going to name their horse when they get one. Blue Jeans like Hannah Montana (of course) I did not listen to all of the details. I probably owe her a horse knowing Kailyn. She works out deals with me and I am not fully listening all the time. She Does. Not. Stop. Talking.

When you send your 12 month old inside to get her 100 calorie G-Tube feed at 3 so she does not lose energy and she protests. (a good thing)

When you send your 8 year old Type 1 Diabetic in to get her Insulin Pump infusion set changed because it has been 2 days and it has to be done every two days.

When it is overly warm for fall and you feel good doing the mundane task of staining the deck in the sun because you can drown the sounds of the world out (whining kids) with your ipod music.

When your husband makes Trader Joe's pizza for dinner and it tastes soooo good. Especially the Buffalo chicken one.  I need to put that on the must buy every time list. ;)

"Where's the Beep?"

We now have two pumps in the family. An insulin pump and a feeding tube pump. Both beep at various times and sometimes even at the same time.  I find myself saying quite often, "Is that you or Keira beeping Kailyn?"  If Kailyn beeps, it could be because she is doing various things with her pump. Whether it be testing, bolusing, eating,  has a low reservoir or low battery.
If Keira beeps, it is usually because she has no formula left or has a kink in her tubing. Kinks in her tubing are the most annoying part of the whole thing right now. We are SOOO happy she is not having seizures with eating and drinking anymore, but she moves around a lot and by the end of the day the tubing is quite a mess and she beeps constantly. I even showed Kailyn how to pause, untangle and restart so I don't have to get up so much. LOL  Hopefully we can move on to bolusing during the day soon so she can roam free.  She is supposed to wear her cute little back pack on her, but it is about a 3rd of her weight, so instead I just let her drag it when she doing her little army crawl. I need to get a picture or video. It is so cute. :)

Cheerleading

Was a hit
There were at least over 50 girls there.
She was still begging to show me the cheers she had learned as she walked up the stairs to bed.
Gorham does not have any teams for her age and they are thinking
of making one next year and she was begging me about it.
So watch out everyone!! She will want to cheer for you and has two weeks
until the next practice to get those cheers down!! 
She is recovering from a sinus infection (when Kailyn is miserable, we all get to be) and her blood glucose numbers have been really high.  They are doing testing at school, which she does not seem to mind, but I am curious how she does when she is high and producing trace amounts of ketones. In the past she has not done well at all.

I cut Sam's hair again today. It came out ok as usual (lol) and we need to buy scissors so I can fix it up before picture day next week.;)  I figured out that he is actually learning in school.
He has memorized some sight words. So YAY for learning.  He misses some work when he is pulled out for Title One for Math and Reading, but I do it with him at home.   He loves spelling words on his buzz lightyear game every night before bed after we read. I hope it is helping him with letter recognition.  It will be interesting to see where he stands when we go to conferences at the end of this month. If he is way behind we will be requesting testing for Special Education. He still has is Autism dx.

Keira did three things today that made me feel so much better and melted my heart.  She gave me one of her sloppy kisses again (my Mom calls them cave kisses) AND a high five.  Her motor planning is definitely off, but it IS there. She can not consistently give high fives, but she knows how to do it and can when her body will let her.  I know that she understands what I say, but it seems like her body can't do it. Sometimes she even shakes her head no (like no, I am not doing it or can't do it) She was also army crawling all over the place today.  Something I have not seen in over a week.  All of this despite the fact that she has a miserable cold.  Her seizures have disappeared when she is drowsy/sleepy, which is also a change from last week.  So sort of progress. As a friend has said "deep breaths".  She has appointments for independent evaluations for speech, OT and PT with CDS and a private therapy group for this month and for a feeding clinic at Maine Med. This all happened today. This on top of her big appointment next Tuesday. Can you say "head spinning"? 

Seth wonders why I am always so tired at night. I really don't like giving him a play by play of my day and we just talk about highlights or whatever else is on our minds.  When he asks again I think I will ask him to look at my blog. (I don't think he ever has) Maybe he will get it then?? ;)