Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Friday, January 27, 2012

It's here!

After a year of waiting, Abby finally has her Eco2!  We are all so excited.  We were able to set it up last weekend with a mount that we are borrowing (until we get one of our own).  Abby has spent a lot of time exploring and having fun with it.  It has been a long time since she had the trial, so she's relearning where everything is on the device and figuring it out, which is going to be an ongoing process.  She's learning a new language using symbols and accession them with her eye gaze.  It's not simple, but she's smart and very motivated.  We know she can do it!

We're already learning a few new things about her.

1.  She's a bit of a hypochondriac.  "I don't feel well" and "I am not feeling well" are two of her favorite phrases, even when she is smiling and laughing.  Sometimes, it is followed by "that is silly", so I think she's just being funny.  The symbol is a little green face, which is pretty silly.  I can see why she keeps looking at it:) Funny girl.

2.  She wants a drink ALL the time.  She is getting her point across. "I feel thirsty", "I would like some juice", "I need a drink"

3.  It takes even longer for her to answer a question than I thought.  When she asks for something that I'm not sure she intended to say, I sometimes ask her if she meant to request it.  She might say that she needs to use the bathroom right after she just went.  It's really easy to say something on the device unintentionally, so I might ask her if she does need to use the restroom.  It is amazing how long it takes for her to answer.  She will look at yes and no, dwelling on each of them but not selecting them, looks away from the device completely, all before selecting her answer.  Darn apraxia.  I don't make a habit of asking her lots of questions for this reason-I don't want to stress her out.  Sometimes she won't even answer me at all, which is fine.  I'm learning so much about her by just listening to what she wants to say.  

4. She tells me "I like to go shopping" a lot.  This was news to me, but good to know.  I think we should do a little shopping this weekend to celebrate her passion.

And then there are those things that we already knew, but it's awesome that she can show us in a whole new way!

1. She likes the color pink, likes to go to school, and is five years old. She likes to tell me about it a lot.

2. She's funny.  Forever, I have been telling Abby to use her eyes to show me what she wants.  When she eats, she looks at the item that she wants.  So naturally, even with her computer, she still looks at the snack rather than the computer.  I don't want her to lose that, but I still model how she could request more food/drink with her talker.  Earlier today, she looked so closely at her juice box that she nearly knocked it over with her nose, then looked at the computer, then gives me a look like "I don't know how much more clear I could be right now".  Of course she looks at me over the top of her glasses, which is hilarious anyway.  She cracks me up.

I am so happy for her.  She lit up today when we brought it to school today for the first time.  They were just as excited, which also makes me happy.  I can't even tell you how great it was to leave her classroom with her talking to her teacher.  She was asking for a drink of water.  She was thirsty....and she could tell us!!  Amazing.

I found this news story to be so motivating.  This little girl with Rett Syndrome is using her eye gaze device to help sell Girl Scout cookies with the rest of her Troop.  How cool is that?  This is going to open lots of doors for miss Abby!

Thursday, January 5, 2012

Not again!

If you're going to have a cast, it might as well be pretty!  Abby was fit for a cast on her left wrist today.  Unfortunately, she had another fall that left her with a small buckle fracture in her wrist.  As it turns out, unsteadiness, non-existent safety reflexes, lack of hand function, and weak bones are not an ideal combination.  I haven't really had any good ideas from the doctors to prevent this from happening again, but we go to the Rett Clinic in a couple of weeks, so hopefully they can help us out.  It doesn't seem to be causing her much pain, though, and she is very pleased with all the attention that her new bling it getting her.

Just last week, Wes mentioned that he was going to ban the use of glitter in our house.  I might have used to excessively with the kids over the holidays...maybe.  But a ban on glitter??  That's crazy, especially with a 5-year-old girl in the house.  When the nurse asked if she wanted glitter on her cast, Abby laughed out loud.  Funny girl.  Everything is prettier with glitter.

Happy Christmas

Abby was very happy on Christmas morning.  Despite the seizures that were making her tired and the inability to play with toys that she would no doubt enjoy, and her inability to express herself vocally, she was happy.  Isn't that amazing?  I was so worried that she would be sad because she couldn't open presents or play with her toys, but that just wasn't the case.

I lost a lot of sleep over the past few weeks upset about the fact that Abby can't play with the toys that other girls her age can play with.  Shopping for Christmas should be fun, but its just so hard to find things that I think Abby would like, things that she can use her hands to play with, but that won't make her feel like a baby.  I left the toy store on the verge of tears with frustration more that once. It's been the same every year since her diagnosis...and birthdays.  Sometimes they are just reminders of what she would be doing had she not been born with Rett Syndrome.  Are parents of kids with special needs always haunted by the dreams they once had for their child?        

I am realizing now that, thankfully, this is my issue and not Abby's.  She was just as happy as any kid I have seen on Christmas morning.  No, she didn't tear open any packages, but she was laughing at her gifts and loving them just the same. She didn't say "Merry Christmas", but she lit up when we opened the gift that she made for us at school.  It is the same case with her birthday.  I stress about how to make it special for her with her limited ability to participate, but no matter what we do she always has a huge smile on her face.  Regardless of how we celebrate, she likes the attention from family and friends.  That's what really means something to her.  I'm sure she likes the gifts, too, but they don't mean as much to her as they do to other kids.  They can't really provide her a lot of entertainment.

I don't quite understand how it is that she isn't more frustrated than she is.  How can she not be upset that Logan talks nonstop and she just has to listen?  I don't understand, but I know that she is in a better place with her abilities than most of us.  She went through a phase a couple of years ago when she did get frustrated a lot more than she does now.  Losing the little hand use she had was tough.  Biting and yelling were the norm. But most of the time, she really seems to be wonderfully content.  Seeing her face all these challenges with a smile gives me strength.  If I could be a little more like her in the face of hardship, that would be a wonderful thing.