Monday, September 3, 2012

Catching you up

While I have been updating this blog from time to time, I noticed that I have neglected a couple things in Elle's life.  The first thing is that Elle was approved by insurance to get her very own Kidwalk! 

We got to chose the features and the color we wanted.  We picked "raspberry" and it turned out so cute.   She still will only operate it by pushing it back, but it is good for her to be upright and practice.  She'll get it someday and in the meantime, it's good for her to know that she can get around with her legs, even if it is backwards (cause and effect). 
The other thing she has gotten for helping her walk are some braces.  The PT was really, really hesitant to prescribe them for her, but we decided to in the end since she curls her feet so much while standing.  They really just keep her feet straight and help support her ankles.  She only wears them when we practice standing and then I take them right off.  It turns out that they are a big help!  She seems to really like the extra support and is much more willing to stand for longer periods of time and she just seems to have more confidence.
 It was a beast finding shoes wide enough and still in a size small enough not to be an issue.  I went to some fancy stores and ended up finding the Converse at Target fit the bill nicely. 
Oh, and Scout was with us when we got to pick out the braces.  She insisted on pink-which was fine, then she absolutely insisted Elle get the horses for her strap decoration.  I resisted for a while, and was going to go with these pastel colored hearts, but after thinking about it for a bit, went with Scout's recommendation.  I figured that having Scout help pick them out was important.  Having her love and have a bit of pride in her sister's braces couldn't hurt, and Elle is becoming quite the horseback rider anyway.  Scout ended up being right- we love them.

Rob is into fly fishing as you may or may not know.  Online, in a round about way, he happened to stumble on knowledge of a Rett Syndrome fly fishing benefit happening in Idaho and contacted the guy in charge to see if there was anything he could do.  To make a long story short, Rob ended up going, he was one of three Rett dad's there, and Elle was featured in a poster made for the benefit dinner (as were the little girls of the other two dads there) and she was also made up into a card given to all the benefactors along with 20 or so other little girls.
 It was such a fortuitous thing he happened upon it, and he was able to make a lot of contacts and talk to some "higher ups" in the Rett Syndrome Foundation, and learn about an opportunity to get Elles into a study in Oakland among other things.  The consequences of this one little thing could turn out to be very far reaching and it is good for us to get involved in the Rett community- they have proven to be amazing people so far, very welcoming and hard workers about getting things done.   It's great to get some doors opened.  It's one of the greatest benefits of getting a diagnosis- we love that we have a community to belong to and  fall back on and ask questions to.  Even though Rett is a fairly devastating diagnosis, it's so nice to have a name to it, as opposed to just saying that she has some sort of genetic disorder.

I also just wanted to mention that she starts school in a few weeks!  YIKES.  We finished testing at Alpine School District last week and she fell in a grey category where we could actually choose to have her (just for education purposes) defined as either autistic or generally disabled.  I choose autistic, since the school we have her on the waiting list for (and really want) is an autistic preschool.  I figured that would only help our chances of getting in.  She was recommended for full time autistic preschool which means after she turns 3 (in about 3 weeks) she will be GOING TO FULL TIME SCHOOL!!  Mom is trying not to freak out about her baby being gone all day.  I don't just mean my youngest-- she is in so many ways still a little baby and it is really weird to think of having her be in school all day.  I know it is going to be so good for her and when she turns three, she ages out of Kids on the Move, so we won't have that anymore.  It's just hard for me to grasp and think about too hard.  I'll make it though-  I can do this.

Interestingly-- at her tests I found something out.  She was picking pictures out on a poster in front of her as the lady said them.  Stuff she knew anyway (and usually just with her eyes).  She gazed at shoes, an apple, and a cat when asked where they were.  Then the lady showed another page of pictures and kept naming stuff that just simply isn't in her life much, like a glass of milk and Elle ignored her.  At the end, I told her to try the horse, and she did and Elle reached up and swiped the horse!  She has been doing little things like that more and more the last few weeks and Rob and I are very excited.  I think she must be getting her little mind ready for school.  It's pretty exciting seeing the future of communicating with her and that she is starting to be ready to do it.

She is so sweet and content, so it honestly hasn't been much of an issue.  I am pretty good at just knowing what she needs when she seems to need something, but a higher form of communication fills me with great excitement!  It's going to be great. 


Anonymous said...

I had a dream the other night that Elle could walk. I hope those cute pink/raspberry contraptions help her out!

I can't believe that she'll be starting school. That just seems crazy. I hope they realize really fast how special and adorable she is. What if I became a teacher and went and taught her at that school?! The thought makes me happy.

I looked through all the pictures of the other Rett girls, and thought it was interesting how few physical abnormalities there are with this. It made the thought of finding a cure seem more plausible.

I love that she's learning to communicate! Those little pictures you had in Mexico just seem like such a great way to help her figure out her world.

Love this girl. If we come down sometime soon, you'll have to let her skip school so that we can hang out.


Anonymous said...

Also, that first pictures is FANTASTIC!!


Emily said...

My visiting teacher works as a teacher at the school that houses Giant Steps (the preschool she is going to -hopefully-) and she loves going into that classroom and visiting those kids. She does it a lot and a few weeks ago she was looking at Elle's sitting there happy and cute and she shook her head and goes, "they are going to LOVE her". Her therapists all just love her, so I think her new teachers will figure it out. I would guess that in a room full of autistic kids, she will be a nice, Zen presence. Also, if you come down, that school takes Mondays off, so if you make sure you're around for Monday, you'll get some good, quality elinor time.

Also- yeah, it's true, Rett doesnt include physical deformities, and there aren't many genetic abnormalities that have the thought of a cure on the horizon, but Rett does. Rob and I are perfectly fine and feel like isn't our biggest goal in life, but- more plausible and exciting is the chance of some great ways to manage the symptoms. If they figure out a way to help her control her hand movements so she can use them better, that would be an absolute dream. I would love to watch her be able to hold on to a toy for longer then 3 seconds or manage a fork well. Those such things are what we are striving for. And according to a doctor rob met last weekend, very possible in the future.

Marcus said...

Yay for her own kidwalk! Awesome! Those adorable legs in those striped socks are about the cutest thing ever! Glad she's doing well, I hope the school happens and it really helps her. Can you go in and volunteer to spend more time with her there? Just curious. Thanks for the updates.