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.

Thursday, April 14, 2011

How Abby is getting around these days

A few nights ago, we took Abby to the toy store to get some gift ideas. She always surprises me with her choices. I figured she would want either Strawberry Shortcake or Princess theme toys/party supplies. She has been loving them both lately. I was wrong, though. She consistently wanted Dora the Explorer and these little dogs. Funny.

We used her new harness, so her hands would be free to let us know what she was interested in. I am really liking this harness. I'm still afraid to let her walk independently, as she still has "melting" spells occasionally, and I just don't want her to fall and get hurt. We can hold her hand, but that puts a lot of strain on her arms if she suddenly loses her balance. She has broken both arms in the past year, so I like that the harness gives me the piece of mind that I can catch her if I need to, but she has the independence that she wants.

When she's walking very well, she wears this backpack.  It has a lightweight cushion stuffed in it.  Abby almost always falls backward, so this protects her head if she stiffens and falls.  There will be times when I still use this (maybe on carpet), but there are lots of times when the harness will be a better option.

"another birthday photo....really?"

And there are times when only her chair will get her from one point to the next.  We got great news yesterday.  Her Convaid Cruiser was finally ordered and should be here in the next week or so.  It is little different than the loaner that we are using now, and its going to be purple, which she will love.  

Abby has been a little all over the place with her mobility since last January.  Its nice to have some good options to keep her walking when she's up to it, and to wheel her around when she needs it.    

Wednesday, April 13, 2011

Happy Birthday Abby!

Today, we are celebrating Abby's fifth birthday! She is riding to school in style in her new glasses, with her chair adorned with balloons and streamers, and a tierra atop her head. There will be no mistaking that it is her birthday.  She is bringing cookies and treats to share with her classmates, and we'll be having pizza and cake this evening.  It's hard sometimes to plan what I think she might like to do on her birthday, but who can go wrong with balloons, tierras, pizza, and cake?
Happy 5th Birthday sweet girl!



Monday, April 4, 2011

Game Time!

Logan has been super excited about the NCAA Tournament, especially since his team was in the Final Four.  The game didn't start until nearly 9:00 on Saturday, so it was a late night for Logan and Abby, who are usually both in bed by 8:30 (in bed, not necessarily sleeping).


Despite our cheers, Kentucky lost by one point.  Bummer.  Logan watched the entire game, but Abby couldn't quite make it that long. 

Sunday, April 3, 2011

Ups and Downs

Today was a gorgeous day to go to the park.  As most of you can imagine, its a little difficult for Abby to play at the park.  Its a little difficult for me to respond to other little girls asking her to play.  Today, however, the sweetest little girl wanted her to play.  I told her that Abby would love to play, but that I would like to join them.  The little girl, Olivia, seemed okay with that idea.  We went on to play hide-and-seek, ring around the rosie, and racing down the slides.  I was Abby's hands and legs most of the time, of course.  She had a blast.  She knows that a playground is often just therapy, but today she had fun....laughing out loud fun.  This was the first time that another kid had been so "normal" with Abby.  She held her hand, talked to her, and laughed with her.  It would have been the perfect trip if I could stop the story now.  

As I get ready to get the girls on the swings, I hear Olivia's father calling her over.  I can't hardly believe what he told her.  He reprimanded her for playing with Abby.  "There's something wrong with her.  Can't you see she't not like the other kids?"  He was actually aggravated that his daughter picked Abby to play with, a child who clearly was not a suitable playmate.  I just couldn't believe it.  Despite her fathers comments, Olivia returned to the swing set, only to be yelled at again.  Unbelievable.  I don't think Abby heard any of this, as she was completely distracted by the other kids playing. Wes definitely did not hear it, which is also a good thing, as he would most likely be behind bars right now.  

I wish I could say that I confronted the man.  But I didn't.  I may have, but the lump in my throat prevented it.  It was a good thing I wore sunglasses because I was a mess.  It was just such a shock that someone would be mad that their child was playing with Abby.  And he said there was something WRONG with her!  Who says that?  I still just can't hardly believe it.  I wish I had said something.  I don't know what it would have been, though, in front of Abby.  Maybe I'm naive, but I have never thought that any parent that would not want their kid to play with her.

I'm starting to think of a few things that I could have said to him now.....