Wednesday, April 30, 2008

tomorrow is the big day!

We finally have our appointment tomorrow with Dr. Percy at the Rett Clinic in Birmingham! I have my "Rett" binder with my list of questions all ready to go. I can't wait to hear what he has to say.

My neighbor who is from Birmingham is coming with me and we're making a day and night of it so it should be a fun couple of days!

Monday, April 28, 2008

Birthday in pictures

Riley woke up bright and early like usual - all turned around in her bed! She sure likes to move around a lot at night. See her legs up in the air like that? This is why we moved her to a big girl bed - she's always doing that and got her legs caught in the crib bars too often!
Good Morning Birthday Girl!
Riley's favorite breakfast - Cheerios Oat Cluster Crunch
Playing with her Leapfrog Table - she still loves that thing!
The PT cancelled on us so we went for a walk instead
Then it was time for lunch and nap
After nap Ms. Allicia came to play! They did some walking...
And played with beans, how fun!

We went to a friend's house for dinner - chicken and grapes, yum!
Birthday Princess
Riley wasn't very happy when we sang Happy Birthday - maybe she wasn't impressed with the cake Addy and I made.
She loved the chocolate ice cream though!
After dinner she walked all over the place by herself - she was in heaven!

Friday, April 25, 2008

Happy Birthday Riley!!

New Baby Riley One

Thursday, April 24, 2008

favorite time of the day

Riley's favorite time has got to be bath time. She loves the water - all the more reason I hope to get her into aquatic therapy after we move. She also loves being wrapped up in her towel afterwards, she was all smiles and giggles last night! Music to my ears.

Here she is, on her last full day of being 2. I used to dread her 3rd birthday - it just seemed like the window of opportunity for getting her early intervention was closing. But now, not so much.

Tuesday, April 22, 2008

my baby is going to school!

And I'm so NERVOUS! She'll start Monday and go from 8:00-11:30 Monday-Thursday. A full day is 8:00-2:00 but I'd rather her come home after lunch and nap at home so I'm just sending her for half days.

She'll get 30 minutes 2x/week of OT, 30 minutes 2x/week of speech and 30 minutes 1x/week of PT. I had hoped for more PT but they insisted the teachers will carry out what the therapists are working on during the week, and she will not be carried around unless it's a fire drill or something. There are 3 teachers and at most 7 students which isn't too bad.

The three main areas I wanted addressed are getting her to make a choice from either pictures or some kind of communication device, having her pick things up with her hands to possibly regain some hand skills and to keep her on her feet so she doesn't completely lose the ability to walk. They're going to work on those things, among others.

Of course this is only going to be for 4 weeks until the school year is over and then we start all over again in Mississippi. But for now I'm feeling pretty good about it! My biggest problem is going to be getting everyone up and out the door by 7:45 -eek!

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!

Wednesday, April 16, 2008

yep, seizures

The neuro finally called back and rambled something about the EEG showing discharges on the left side. So he mailed me a prescription to try and now I've got to go get that filled.

It's going to be hard for me, starting this road of medication. I'm the type of person that rarely takes my kids to the doctor outside of their usual checkups. I think they've each been on one round of antibiotics and that's it. Actually I don't think Riley has ever had an antibiotic.

But we need to get these seizures under control, and hopefully her walking will improve after we do. It's gotten really bad again, she is so stiff and shaky when I put her down now.

Thursday, April 10, 2008

no news

Just a quick update so you don't think we disappeared off the face of the planet.

I still haven't heard anything about the EEG results. I called the neuro yesterday and they said it'll take a while because of where the test was being sent from. So who knows.

Riley is doing pretty good - except she may be getting sick. Times like these are when I get the most frustrated. She hurts or wants something and I have no idea what that is. Addy is getting a cold and says her throat hurts so maybe Riley has the same thing.

She isn't walking as much again. She was doing so much better and I felt ok letting her walk around the room by herself, and then a week and a half ago she started going backwards again. Now some days she does great and other days she freezes up every time I put her on her feet. I'm hoping to get some answers from the EEG and our appointment at the Rett clinic in a couple weeks.

We are looking at preschools in Mississippi right now. If we stay in the county where our apartment is she can start a week from Monday - that seems unreal to me! But they don't have a class for 3 year olds, they only do speech, OT and PT so she'd only go to school for 30-60 minutes at a time 3-4 afternoons each week. Seems almost pointless to me. We have an appointment with another school district tomorrow morning that I've heard is better for special needs kids. Their program is 7:30-12:30 Monday thru Friday anyway which is more what I was thinking.

I'm taking Riley in for a speech eval this afternoon - let's hope it's more productive than the last speech therapist she saw!