Monday, March 31, 2008

EEG is tomorrow

And we're supposed to keep her up late to make sure she's extra tired tomorrow.

As you can see it's going well! Ha!

Saturday, March 29, 2008

saw my first rett girl today

There is one other girl in our small town with Rett Syndrome. I've been hearing about her - she's 10 or 11 and our OT works with her. We went to a birthday party today and apparently this other girl is the cousin of the birthday girl's mom. My first clue it was her was the hands - I'd been told they were stuck in the fetal position and I saw hers were.

I didn't even talk to her parents because I didn't know what to say. What I wanted to do was ask them what she was like when she was Riley's age. It's hard to relate, I guess. Riley is very different from this girl and who knows what she'll be like in 7-8 years.

It did make me feel a little better though. Lately I've been thinking about what it's going to be like after Riley isn't a cute little 2-3 year old anymore. But this other girl looked so sweet sitting in her mother's lap, and it didn't look strange to me at all to see her mom carry her out of the building. I have two other kids who are always on the go and never want to sit on mom's lap for too long so I guess one positive is I'll always have a little snuggler with Riley.

Monday, March 24, 2008

I can do it myself mom!

So proud of herself!

Tuesday, March 18, 2008

long time no post!

Not a whole lot going on around here. Riley still has her good days and her off days - one day she's walking all over the place and other days she won't unless we hold her hand. But I will say she has been happier lately and (knock on wood) sleeping great! Is it possible the regressive stage is ending? Please oh please? She has been looking skinnier though. We don't need her losing weight now!

Riley's Nana and Papa are here for 3 weeks and Nana takes Riley walking every day - Riley loves it!

Afterwards she was all worn out and fell asleep while Papa read her a book. Riley also loves being read to!

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!

Wednesday, March 12, 2008

called the neuro

Ok I called Riley's neurologist and she'll get an EEG done sometime in the near future. She had lots of slumping over episodes yesterday and none today that I've seen. It comes and goes but it'll still be nice to know what they are.

Her walking is also coming and going and it really sucks. Sunday morning she was walking all over the place (with us following close behind) and then Sunday afternoon and pretty much all the time since she just freezes when we stand her up and won't move. She'll walk if we're holding her hands but that's it. Except for once today when my mom brought her upstairs and set her down, she took off. But that's been it.

This appointment with Dr. Percy can't come fast enough. I want some answers to my questions from someone who knows more than what her neurologist seems to know.

Riley is CRABBY right now and it's making me crabby. I think it's early to bed tonight.

One picture - not the clearest but we went to the aquarium yesterday and Riley LOVED it! She sat right up and was just staring at the fish. Maybe we should build a house and make one of her walls a big fish tank. Ha, I wish.

Monday, March 10, 2008

my unique little girl?

I got a copy of Riley's mutation report today. I can't understand it at all but it does say this: This duplication mutation has not been reported in the RettBASE.

So basically there's not another kid like her? We always knew she was special. :)

we may have figured it out

The reason Riley is falling down more isn't from losing strength - it's from zoning out. I think. We'll have to talk to the physical therapist but it seems like that's what it is. She'll be standing (or sitting) there and just sort of slump over, or fall over. It lasts about 3 seconds and then she's back again. But it sucks and we can't let her just wander around the house like she used to because we never know when it's going to happen. Saturday it seemed to happen a lot, Sunday morning not at all. Then Sunday afternoon it happened a few times.

I also made an appointment at a therapy place 30 minutes away for Thursday afternoon. We'll see if she gets better physical therapy there than she is getting at home through EI.

Thursday, March 6, 2008

two reasons I'm glad we're moving

  1. Our Early Intervention here is a joke. The PT doesn't even live here and only comes up to our town twice a month. That's not enough for Riley, or many of the kids she sees. They don't have an OT and the speech therapist is only good if your child has trouble saying their r's or something like that. She has admitted she doesn't quite know how to work with kids with autism (or Rett Syndrome).
  2. Riley is currently getting ABA therapy and apparently they are raising their rates and the only reason I know this is because our therapist that comes to our house told me this morning. The director of the center rarely talks to me even though we are paying her what I feel is too much money as it is. Plus they haven't changed any of Riley's programs since getting the RS diagnosis and I really think they need to. But since our ABA therapist does a lot of PT work with Riley we'll keep her, but it makes me feel good that we're moving and should have access to more therapists or even students that could work with Riley.

Wednesdays mean...

OT with Amy! Our OT is so nice - she is pretty much a speech therapist, occupational therapist and physical therapist all in one. Riley is the only child Amy sees outside of school so we were lucky we found her through a friend of a friend. Yesterday she worked on having Riley push a button when she wanted more food and Riley did so well! She pressed the button all on her own several times, and then would immediately open her mouth for the yogurt. Plus an added bonus: Riley keeps her hand by the button and not in her mouth - yay!

We also did some swinging since it was so nice out - Riley loves to swing!

And then we practiced walking outside. Riley did so great on the uneven ground and only fell once but the grass is very forgiving so she didn't get hurt or cry.

Riley was nice enough to take her hand out of her mouth long enough for me to get a picture of her pretty smile.

And one more just because I think it's cute. :-)

Tuesday, March 4, 2008


A typical Riley pose with her finger in her mouth. Actually we're starting to put TWO fingers in the mouth. Where is that armbrace anyway?!?!?

Yelling at mean mommy for making her crawl

maybe a better day

Ok I know we can have a bad day one day, then a good day the next, then a bad day again. BUT today is better than yesterday. Riley crawled over to the trampoline and stood up on her own which she hasn't done much of lately. And so far she hasn't fallen once! But we haven't let her walk all that much either. Baby steps. I'd still like to find a walker she could use so we can let her walk without having to follow right behind her to make sure she doesn't fall. I contacted our EI lady who was supposed to get back to me but hasn't, of course. So for now I guess we'll just have to follow Miss Riley around!

I've also been busy calling people in Mississippi so we can start therapy right away when we get there. Moving is no fun but I am excited to get to a town that has more options!

Monday, March 3, 2008


Riley has been falling down a lot. I had really hoped she would stay walking and I'm afraid we're losing it. My mom said something about her falling a couple of times Saturday morning but she seemed ok Saturday night so I thought it was a fluke. Sunday she was really shaky and fell and hit her head pretty good. I was hoping it was because she was so tired from not sleeping the night before but she's the same today. Now we're too scared to even have her walk so I'm afraid she's not getting the practice she needs. I put a bike helmet on her and let her walk and she did for a good 10 minutes or so and then fell straight back again. Poor thing.

I called a pediatric therapy group in the next town over but they need a doctor's order so I'll call her doctor tomorrow and see what they can do. I feel like she needs to be seen by a physical therapist and her PT doesn't come back until next Friday. I can't wait that long.

Sunday, March 2, 2008

she sleeps

After being up much of the night Riley is finally sleeping. I fed her breakfast at 6:30 and then put her in the beanbag, covered her up and she konked out!