"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
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Gall bladder surgery
Unplanned Pregnancy (Such a blessing that I could not imagine life without)
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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.

Some Serious Christmas Preparations

Our house is decorated. Thanks to the kids. I have decided it is a kid themed Christmas and they did the decorating. (with a little direction from me ;) )We have chains linked all the way around the living room, in the playroom, Sam's room and Kailyn/Keira's room. Paintings hung in different areas too. The kids went with their grandparents to get the 'real' tree that we put on our porch and decorate for the birds today. We would have done the traditional Gingerbread house, but I decided to quit that tradition. It is way too hard to count the carbs and little fingers like to steal the candy off of the house at random times.  That was part of the fun (at least in my opinion). Last year was a mess with blood sugars out of control.  We will move back to sugar cookies (probably the precut kind) ;)
I have all the presents, stocking stuffers, wrapping paper and the cards are made. Now we just need to wrap the presents, send those card and for Christmas to come. I am usually doing all of this at the last minute, but I want to be prepared this year. "Expect the unexpected"  Kailyn was shocked I was letting them put the tree up right after Thanksgiving. She said, "I did not think you would really say yes!" lol  A lot of my time when the kids are in school goes into therapy and Doctors appointments for Keira so it will be a nice load lifted off my shoulders when everything is done. Hopefully, Grammie will make us one of her beautiful wreaths again this year ;)
What do I want for Christmas?  Tranquility for Seth and I. Joy for my children.

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. :)

Adventures in.... What the heck is going on here seizures?

We rushed to Children's Hosptial Boston on Friday Morning because Keira is starting to not meet milestones and her seizures are increasing and evolving.  These symptoms all pointed to Infantile Spasms. If they are infantile spasms time is of the essence and you DO NOT fool around. They admitted her to do a 24 hour EEG.  I have been told this is the #1 hospital for child neurology/ epilepsy in the country if not in the entire world.  People come from all over the globe to go there for an opinion. 
We left the next day with good news and bad news.  We were told that her seizures were clonic (not myoclonic), but the Epilepsy specialist did not seem convincing. The major problem with Keira's seizures is that they are very rare. The other problem is that Neurology is not an exact science and every Epilepsy specialist will have a different opinion on what track to take. I think he wants to wait for the MD with more experience to give more info and decide the course of medication.  He was convinced they were not Infantile Spasms (which is a good thing), but also told us that other seizures can cause delays.   He said to start services locally, call our regular Neurologist to get med changes and to work with the other Children's Hospital Epilepsy Specialist to come up with a plan.  He did not want to step on anyones toes and add meds that may change in a month. We meet with the other specialist in Boston on Nov 9.  So close, yet so far away.
Our local pediatrician called this am and has already called in a referral for an eating clinic at Maine Medical Center. Keira will chew now, but now swallow. She is not gaining weight and has lost a little bit.  She also made a  referral to a Physical Therapy and Occupational Therapy clinic for an evaluation.
I feel good that we are doing all that we can to make sure that she can develop normally.  Anxious to hear what Mr. Expert has to say.
Thrilled that Keira is still the happy go lucky, easiest baby in the world. (besides seizures ;) ) 
Here are a few pics of our stay in Boston and video of what her seizures look like now are on youtube. Let me know if you would like the link.

Daddy Reading Pat the Bunny

The EEG machine with Audio and Video recording. You can see the little picture of her in the upper right hand corner. The squiggles are the activity being recorded in her brain.

Our view of Boston if you looked left.

The sign that says not to swear Daddy.  I also was recorded because I ended up crawling into the crib and slept with her because the cot was like sleeping on the floor.