Wednesday, August 13, 2008

Phone tag

Reagan slept well last night but for some reason decided to wake up at 6am this morning. I'm a little worn out...staying up past midnight every night to watch the Olympics is getting a little ridiculous!! It seems like I spent most of the day today on the phone. Barring any unforeseen circumstances (we do still need to run it by her neurologist and her ophthalmologist), we're planning on heading back to Austin and starting HBOT on Aug 25th. So I have had to reschedule quite a few doctors appts today (including the botox injections and hearing test). I still haven't heard back from Reagan's neurologist. Very strange. Maybe he's still not back in town? I left another message today. I'm curious about when he wants to do another EEG, especially since we're going to be in Austin. I did get a letter from Shriners today saying that they think (based on her application and the medical records that were sent to them) Reagan would not benefit from being seen at an orthopedic hospital. That's ridiculous. She definitely has issues that are orthopedic in nature, from her hypertonic/spastic legs to her popping hips, but how are they going to know any of this unless they actually examine her. So I put a call in to the applications dept; I'm hoping to appeal it. I also called her pediatrician and left a message asking her to submit a letter on Reagan's behalf. Hopefully we'll still be able to get her in there. She's been very good most of the day, she got a little whiny/fussy before she was supposed to go to OT but we were able to push it back an hour and she took a nap and woke up in a much better mood. She's been having some small recurrent clusters of seizures today (more than I've been seeing lately)...I'm not sure if it has anything to do with the increase or not. I'm just hoping she'll get adjust to it and they'll taper down. We need this medication to STOP the seizures...not just reduce them. At the same time, there's no doubt that she is feeling better on the vigabatrin, since starting it she has been much happier than ever before. It has truly been a blessing for us to have so many good days with her lately...after enduring so many months of colicky behavior, believe me we don't take anything for granted. Like I said before, it really gives me a glimpse into how good it will be (for all of us) once we get these seizures under control. Please continue to keep her in your prayers!!

2 comments:

Heather said...

I am really surprised by the Shriners thing,really surprised.Hopefully an appeal will turn that around.As for the slight increase,I think Reagan seems to put out an increase when her meds are kicked up.Listen to me,like I know or something.Sorry I didn't get back to you,life got crazy here. I will try and catch you in the morning.Prayers for a restful sleep for all and a decrease in seizures tomorrow.

Jennifer said...

I'm glad you're going forward with the appointment in Austin. Just to let you know, I will be in DC the week of August 25th (leave Monday come back Friday). xoxo