Tuesday, September 23, 2008

Things are pretty busy around here but we are content. The seizures seem to have decreased in intensity and frequency with the ACTH shots. I'm going to do another EEG tonight so when he sees Dr. Filloux (neurology) tomorrow we can make some decisions. The original plan was to stay on the ACTH until the seizures were gone and then taper off slowly for 6 weeks. I don't think they are completely gone so he may want us to continue on the current dose or increase a little before we start coming down. I think it's been easier to give him the shots knowing that he is improving some. He no longer does the left sided jerking that we videoed but he still wakes up and startles where both hands jerk up a little then relax.

Britt has had a cold for a week and because Charlie's immune system is depressed he got it too. His cry sounds hoarse, stuffy nose and goopy eye and he wants to be held a lot. He isn't interested in doing his exercises or swallowing his tastes of baby food. I can't blame him with a sore throat. I am impressed that he is able to cough and keep the gunk out of his lungs so far. :) When we left the hospital that was one of my biggest concerns.

Before he got sick this week he was doing great in therapy. He was starting to lift his head while on his tummy and didn't hate bearing weight on his arms. Big improvement in my eyes!

9 comments:

Jada Rose said...

Those ARE big improvements! Sorry he's sick! I HATE THAT RSV SEASON IS ALMOST HERE AGAIN!

Paige said...

Yea! I am so glad his seizures are getting better. I have heard from a reliable source that he has gained some weight too. I bet he is so cute. I hope you are enjoying that he wants to be held-even he will probably grow out of it soon! I am so impressed that he can lift his head and is starting to enjoy being on his tummy. He is improving so much. What a little trooper! I wish I could have made it up to see him, but hopefully I can in a couple of weeks.

Charlie Cooper said...

Your reliable source (mom) is correct. He has gained some weight with the medicine and has lots of fat rolls and super chubby cheeks. However according to the scale he has only gained a pound. It feels like more to me.

Angie said...

I still follow little Charlie's story! I am happy to hear the seizures are getting better! Poor little guy! Colds are terrible for adults, I hate to see little guys get them! I hope he gets feeling better soon!

Meghan said...

you guys are all doing so great! keep on keepin on.

Suz said...

Can we trade scales? I've some new creases and rolls but my scale reports bigger numbers.

So sad about the cold. Amazed that the bugs could survive the antibacterial assult that surrounds the little man. Happy about the good coughs and sucks. Coop is really one tough kid. When I think of his trials I am so sad. But when I am with him I feel peace and appreciate perspective.

You really are amazing parents. I know your lot is not easy but you couldn't do any more for your boys. Still praying.

Through the Looking Glass said...

Oooh, fat rolls? Why wasn't I notified? I live to bite baby fat rolls...

That is tremendous news about holding up his head and bearing weight on his arms! He has made such progress since he's been home; I guess it's only natural that he get the little-kid colds all the little kids are getting since school has started.

whitney said...

I love this news, minus the cold for Britt and Coop. Even if they seem like small things, it really is big, huh?

Harris Family said...

Angel,

Joel (the O.t.) said he gave you the bags. I am glad that they are the right size and you can use them. I am so glad that things are better with the shots. He is one cute boy!! I continue to love the blog. Thanks for sharing with all of us. We continue to pray for Charlie. He is one sweet boy.

Tamara

The Bountiful Family