Monday, April 21, 2008

one little picture and updates

I haven't used my camera much lately but I think posts can get sort of boring without pictures so here's one of Riley with my friend Jessica in Mississippi. Riley had trouble adjusting to the time change (Eastern to Central) so her day usually started at about 6:00 and then she'd end up taking a little snooze on the couch mid-morning.
The meeting with the speech therapist was great! She was so nice and actually gave me hope that Riley might be able to form some words from the sounds she's making now. It's so discouraging when people take her diagnosis and basically give up. Unfortunately the occupational therapist from the same therapy group was like that - she said she'd try working on some hand skills but "we'd see how that went". Well if you don't keep practicing with her of course she's never going to regain any skills! So anyway, I'm excited for her to start speech therapy there this summer, at least.
Our meeting with the Madison County schools also went really well. They have a building dedicated to the special needs kids and there is a max of 3 students to 1 teacher but the ratio is most often 2 to 1. Plus with kids being taken out for other therapies during the day I think Riley will get plenty of 1-on-1 time there. We're looking at houses in Madison County and she'll hopefully start school in August.
I took Riley in to get her blood drawn Friday for her baseline liver test so she can start Depakene. I also got the prescription filled but I'm going to wait until our appointment at the Rett Clinic to start it. It's only a week and a half away now. Whenever I google that medication all I see is possible fatal liver failure, especially in chidren under 3. Too scary to think about.
Tomorrow is Riley's IEP meeting with the preschool here which I am totally unprepared for but she's only going to be there for 3-4 weeks anyway so I'm just looking at it as a practice IEP meeting. :) I figured if anything she can start getting speech, OT and PT for free! This Friday is her birthday and she will be signed out of Early Intervention for good!


Brooklyn said...

Awww she is just SO cute!
Any big birthday plans this week?

You will have to let me know how the IEP meeting goes, you are lucky to get a "practice" one!

Brooklyn's is coming up soon - we are visiting the preschool next Tuesday. It is only 2 hours long each day and it is one teacher for 8 kids - with 2 aides.....I am not sure how I feel about it.

Mom to 3 girls said...

Found your site from Avery's. I have a 4 year old with Rett who has made progress over the past year in just about every area. Don't give up on her! And don't let the therapists. Look until you find one who believes in her. Feel free to e-mail me if you'd like.
Take care,
Shelley, Lauren's mom

Avery said...

just remember you are riley's biggest advocate. It is your right to demand whatever services you think that she needs. They will try to give you the least amount of services/therapy but just stand your ground! And really, IEP meetings arent really all that scary!