Our journey through life with hemiplegic cerebral palsy and infantile spasms

Thursday, August 14, 2014

Holy smokes I've been slacking

Since we have some big stuff coming up for Karsen I figured I had the time to update my blog really quick. Yikes! I also notice it's been over two months! What can I say, we've been busy enjoying summer and enjoying a break from chaos.

Karsen is doing amazing. He's starting to run, which makes me super nervous because he ALWAYS falls when he does, but hearing him laugh uncontrollably as Karter and him play tag is the best noise in the world. I've been waiting for this moment, the time where Karter and Karsen can play like "normal" brothers. Even though Karsen can talk, he does a really good job of letting his older brother know if he doesn't like what he's doing. They've also started the true boy rough housing. I welcome it in our house, I grew up rough housing and still love doing it to this day. Some of my best memories are of me running away from my dad squealing down the hallway as I would hear "I'm going to get you!". And here I am, 20+ years later doing the same thing. Making memories, loving every minute. 

Karsen went to a two week summer camp that Karter's preschool puts on. It was chef themed and about the cutest thing you could see was my two boys with aprons and chef hats on. They both had so much fun, Karsen fit right into the routine of school, made me feel more confident in him starting preschool. Karsen's school started August 13th he hasn't gone yet though. I'll get into that later. 

We met with Karsen's new ENT to see if we needed to give Botox another shot or if there were any other options. After much research and discussion we ultimately decided to go forward with surgery and remove two of his salivary glands. I've always seems to take forever to get insurance to approve anything, so went went forward with the paper work and talk and researched. To my surprise insurance approved it three days later. So not even a week to process everything and we had a surgery date, I also expected it would take well over a month to get in. We're going in this coming Tuesday. It all fell into place which made me feel more comfortable with our decision. So because Karsen's surgery is so soon, and he can't be exposed to nasty germs before his procedure, we decided to hold off on preschool until he's recovered. Hopefully he'll get to start preschool with out wearing that darn puffy bib. 

We've introduce some of his constraint therapy here and there just to get him adjusted to his torture device (it really is). He's been doing amazing. He'll turn pages in a book with lefty and is starting to try to pick up toys and release them. I've been blown away by him, once again.

I've been reading this book called The Explosive Child. It's been really helpful on figuring out Karsen and his behavior. I'm only a little bit in but it's already helping. If you have a child with difficult behavior and you have no clue why, this is the book for you. 

Life if pretty good in the Williamson house. We are busy with work, school, soccer (yes, I'm coaching Karter's team), therapy appointments, MOPS (craft coordinator this year) and the usual doctors appointments but we are beyond blessed. 

Couldn't leave you with out a cute Karsen pic, so here's a few.

The torture device
Chef summer school (look at lefty)
Look, they do like each other... Sometimes ;-)






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