Friday, March 14, 2008

appointments and seizures

So Riley probably is having seizures. The PT was here this morning and saw one of her little episodes and said it looked a lot like what she's seen with other kids. Crap.

We have an EEG scheduled for April 1. I'm supposed to keep her up late, wake her up early and not let her fall asleep on the 2 hour ride there. Should be interesting!

I also took her to a PT/OT therapy place yesterday and it went pretty well. I'm taking her there just for PT but I really liked the OT and just thought the PT was ok. I asked her if she's ever worked with any Rett girls before and she said yes and looked all sad. I hate it when people make me feel like it's the worst possible thing. Way to be a downer. The OT said she's seen lots of girls with RS (not around here but where she used to work in another state) and she also said the only other girl they've seen around here lives in a group home because her parents walked out on her when she was young. So I guess if that's what you think about when you think of a girl with Rett Syndrome it is pretty sad.

Anyway. They worked with Riley for a while and Riley was pretty into it which was good. They want us to keep some toys at a lower level so she's forced to lean forward and not on her heels so much. So I brought the old Leapfrog Table out which was Riley's obsession for a long time and she still likes it! It's nice to see her interested in a toy!

Today the PT from EI came and I guess we'll keep both for now. We'll probably only be here another couple of months anyway. If that.

My mom is leaving today and my IL's are here for the next 3 weeks to help out. It's not the same as my mom but it'll definitely be nice to have the help!


Avery said...

erin, sorry to hear about the seizures. We go on the 27th for an EEG. Luckily my mom lives about 20 mins from the clinic so we can spend the night with her and she can help keep Aves awake in the car.

Why are you guys moving to MS?

Brooklyn said...

I agree with Carrie - bummer on the seizures. I am sure they will get them under control with medicine. I know that does not make it easier. I remeber keeping Brooklyn up - we had an hour drive and brought a portable DVD player and watched (and sang along) with the The Wiggles - the WHOLE way!
As far as the PT "knowing" Rett girls - remember - ALL the girls are different and there is so much more information on Rett now. I completely believe that the future for our girls is very different.
Hugs and Love from Indiana

Anonymous said...

Hi Erin,

Jessica sent the link to Riley's blog and I've been checking it every few days. I just wanted to let you know that you are all in my thoughts! I don't really know anything about Rett (yet) but from your postings it looks like you're doing everything you can to make a difference for her. She's very lucky to be surrounded by such a great family!