Wednesday, August 27, 2008

Day 3 HBOT

Last night followed a similar sleep pattern to the night before except Reagan did wake up for about 45min at 1am. Thankfully she fell back to sleep after I gave her a bottle; I was worried she might be up all night! Her HBOT session went well today. She was content and kicking around for most of it and then fell asleep right at the end. Still no noticible difference but it's really early and I wasn't really expecting to see anything at this point. Still a lot of seizures in the morning, although they really seem to lessen at the end of the day. I put a call into her neurologist. We're wanting to get her off the Ketogenic diet (since it hasn't helped her at all) now that we're already to the highest dose of the vigabatrin. I'm hoping to hear back from someone tomorrow. Karen, my stepmother, took Reagan swimming today (despite her broken arm...she does have a waterproof cast). I wouldn't say she liked it, but she tolerated it for a while. She's just had a case of the whinys all day today! And my patience has been wearing thin with it. This is when it's nice to have Mike around so I can just hand her off and go take a shower or something. But no such luck. Maybe this weekend. Actually, we found out today that the HBOT place is closed Monday for Labor Day. I'm pretty irritated by this...hello, we've come all the way from Houston for this and they are CLOSED?!?! I was not too happy about it. So that's going to throw everything out of whack too because she's supposed to get 5 sessions a week. We may end up having to double up on one day. I don't like the idea of that, but they swear it's perfectly OK to do. I don't know. So now we may end up going back to Houston this weekend (instead of Mike coming here) since Monday is a no go. We'll see. I'll close with a pool picture...Reagan had this look on her face nearly the whole time (like why don't you let me out of this thing)! Click on the picture to see it up's actually a pretty picture...I like the way the light shines on her face. (Oops! For some reason you couldn't click it to enlarge it...but I reloaded it and now it's fixed!!)


MichelleB said...

You are a wonderful, inspiring Mom. I am praying that the HBOT is the answer.

sara said...

We doubled up on the sessions for the last 10 days. So we got 20 sessions done in 10 days. I didn't see any negative side affects at all. They said he may be a little more tired but I didn't notice it. We just made sure he had a 3 hour break in between. He was only 22 months so also pretty young. Best wishes.