Botox Evaluation at CHOP

We had our big appointment yesterday at CHOP. Jason took the day off to go with us -- I am so glad he has the opportunity to do this when these major appointments come up. We left the house around 8:00 am and made pretty good time to Philly (even stopping for Starbucks 1/2 way there). I love the hospital campus, it's nice (well we've only seen one part of it called the Seashore House)...the parking garage is located just steps away and the building is pretty easy to navigate.

We saw Dr. Drake a doctor of Physical Medicine for the Botox evaluation. He was so, so nice and Jack liked him too! He looked at Jack's muscles and examined his range of motion and even had Jack walk with a walker in his bare feet. He thinks Jack is a perfect candidate for Botox and feels he will do quite well with the injections. Jack will get 10 different areas injected. 3 places on each leg and 4 areas on his right arm. He will be sedated for the procedure and we will most likely end up spending several hours at the hospital until it's all done. The actual injections take only minutes to do, but they have to be very precise and actually use electrodes to be sure they are in the right muscle. It sounds very thorough.

I am so excited -- I have read so many good experiences about Botox and how well it works for kids with CP. The doctor thinks Jack will really be able to "take off" walking at first with his walker and then independently!!!!!!

Sometimes when I am rocking Jack to sleep I imagine the day he takes his first steps. I've even had dreams of Jack walking and when I wake up I am left happy and somewhat sad at the same time. It feels so good to know there's so much out there to help kids like Jack. With school, botox, and a new house waiting for us life certainly isn't boring over here!

Jack had a hard time going to sleep last night and when he started crying I went to rock him a little and noticed he felt a little warm. I thought it was just hot in his room and didn't think much of it. He still didn't settle and Jason went in to sit with him for a while and we noticed Jack's nose was running like a faucet! I took his temperature and it was 99.3 which isn't terrible but still above normal. We gave him a little medicine and he finally went to sleep. Today his nose continues to run and he's got a cough and a slight fever. He's acting a little under the weather too. I hope it passes quickly, I will update when I can.