Sunday, March 22, 2009

Chuckles Update

Apologies once again for the long time in between updates.

Over the last little while we've been working with different combinations of meds, etc. As mentioned in a previous post, we started with the vitamin B12 shots. We actually started to see some positive results with the shots over the first couple of weeks, but in the last few weeks things have started deteriorating quickly. Charlie's seizures have dropped in frequency but increased in intensity. He's been having 2-3 Grand Mal seizures a day, more powerful and involved than we've ever before seen. These new seizures are accompanied by severe convulsions and in some cases he's not breathing for up to 30 seconds. After these seizures, which last between 30 seconds and 3 minutes, he is exhausted. He'll typically sleep between 2-4 hours after a seizure. People who have these types of seizures compare the physical exertion to running a marathon. They're pretty intense.

In the interest of trying to kick these, we've felt like we should step back from all the meds he's on and try to establish a baseline. It's been over a year since we've seen what the seizures are like without any meds in his system, so we've decided to go med-free for a week or so and see where we're we stand. From here, we're going to start playing with the meds one at a time to carefully gauge what sort of effect they are having on the seizures and the autism behaviors.

We'll keep you all posted.

Wednesday, March 4, 2009

These are a few of Chuck's favorite things

Charlie has a thing for enclosed places. He loves to get his blanket and snuggle down in a box or bucket or even on the floor inside his little playhouse.
We got him this swing for Christmas and Matt just got around to hanging it in the kid's room (being laid off has it's benefits!). Charlie LOVES it! He loves swinging and loves being all closed in so this swing is pretty much his dream come true. It couldn't have come at a better time because he's had a tough couple of weeks and it really soothes him to get in the swing and feel safe and cozy.

He loves getting in this bucket and drinking his medicine laced juice. (please pretend he isn't STILL using a bottle. Thanks)

He also likes to relax in this little plastic bin.

One of the only times we can get Charlie to hold still is when we lightly scratch his body. He completely freezes and gets little goose bumps all over his body.

He likes having his arms scratched so much that he will rotate them around to make sure you don't miss any spots. The cutest thing is when you do it to his tummy...every time we do it, his mouth will drop wide open and stay open until you stop.

He loves his daddy. He was so tired here and ready for bed but we couldn't put him down until he finished drinking the medicine in his bottle. He fell asleep leaning against Matt. So sweet.

Charlie loves to roughhouse with anyone who is willing. Good thing he has a big brother and Papa who enjoy it almost as much as him.

It's been a rocky road but we sure love this little guy and he's worth every bump!