1 year post op!

Jailynn's hemispherectomy was over 1 year ago. February 5th, 2009 was her surgery date. Her last seizure was Feb. 24th, 2009 which we think was a result of the surgery trauma (that also happens to be my mother's birthday). So hopefully on the 25th of this month we can celebrate 1 year seizure free. As of the 21st of this month Jailynn will be completely done with Depakote Sprinkles. Then she will just has tegretol chewables for about 6 months and they we can try to wean those.
She has come so far in a year. This time last year she was not walking. She was still sedated and drugged up. Now she is running and thinks it is funny to run the other way when I call her. She is in school and loving it. She knows so many more words and loves to sing songs. She remembers every song! She loves to dance, play babies, barbies and play kitchen.

Unfortunately Jailynn hates snow and we have had 2 blizzards back to back and we are stuck inside bored.....

We are also trying to prepare her to be a big sister very soon...

Happy New Year

Jailynn is 10 months seizure free. We are praying that 2010 will bring us her 1 year seizure free mark and more, the end of all seizure medicines by the end of they year and tons of learning and progress! Hoping this is the year she learns to pull up to stand independently and climb stairs on her own safely.

We are also praying for a healthy birth of Jailynn's baby brother Camden in March/April.

Jailynn has made so much progress in 2009 and we cannot wait to see how much more will come.

One of her newest things is singing and dancing to "If You're Happy and You Know It". It is really cute when she does it. She also is loving to carry around one of her baby dolls now when she is not carrying around a little Minnie Mouse. She has started to develop the late two year old attitude. I heard most children get that at age three though anyway, so as far as that goes she is on schedule haha!

Merry Christmas

jailynn loved her presents. She still is not ready to understand the whole idea and concepts. She does know that Santa says HO HO HO and two lines from jingle bells. She says "merry tistmas"! She cannot say the c sound.

She was able to open gifts very well this year. She loved her gifts. She loves her barbie house and babydolls and stroller and crib for them.

She was very excited to see family members especially Pop-Pop!

Merry Christmas everyone

MerryChristmas!

These are pictures of Jailynn at the mall with Santa and a few I took of her in front of our tree. I used the ones I took as our Christmas card picture. Look how long her hair is! Oh and she loved Santa!

Right now we are watching the blizzard snow fall.

A few Pictures of Jailynn

Jailynn's her is growing nicely. We left some of her bangs long her last hair cut so they can be pulled back to cover her one bald spot were her incision lines met from the T shaped cuts from surgery. I can finally get most of her long bangs pulled back now.

She has been doing great wearing her glasses all day.

She is giving us a bit of trouble taking her depakote sprinkles. I keep having to hide it in different things like cheesecake and chocolate pudding.

She sees her neurologist Dec 21st, it is possible we can start a med wean. Not sure if he will want to wean tegratol tablets or depakote.

She has begun to notice outside christmas lights in the neighborhood and really likes them now. She says "lights, lights!"

Jailynn's Progress

We have Jailynn's first report card. Being only 3 it is not a regular report card with A's and B's but it is marked by skills, mastered emerging, and unsuccessful but tried.

We have notes from all of her therapists about her progress. Jailynn is making great progress in OT, PT, Speech and special education goals. She is getting better at socializing and playing with other children at school.

All of the behaviors we had went to behavioral therapy for have resolved even though we stopped therapy due to the time and missing school days.

A few days ago she said her longest utterance, "Oh Mommy, it's medicine time!" Jason and I were both thrilled. She mostly says two and sometimes 3 words per phrase.

On bad thing is she is getting really stubborn now about taking meds. Especially the depakote. Everyone has always been so impressed how good she was about letting me give her meds. She even sometimes refuses a gummy itamin, which tastes yummy.

She sees her neuro Dec 21st, possibly a med wean will start then.

Sick Jailynn

My poor little one was sent home early today for getting sick. She has had H1N1 and Flu shots but there are always other germs. I swear if there is a germ in a 20 mile radius this girl gets it. It has not been medically diagnosed but I know she has a weaker immune system. The medical issues never cease.