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, March 24, 2011

Under the weather

Unfortunately, Abby and Logan both have the flu.  Wes has shingles, so when they got a fever I assumed they both were getting chickenpox.  I was surprised when they tested positive for the flu.  I think we caught it early, as the only symptoms they are having are fevers and tiredness.  They are looking pretty pitiful, though.  Logan is too tired to tell Abby to stop patting his head and Abby is happy to be relaxing at home. Logan has actually used Abby as a pillow when they are watching cartoons, which she thinks is hilarious.  Hopefully, the flu will pass in a few days.  Until then, we will keep watching cartoons all day in our pajamas....which isn't a terrible way to spend the day.    

Thursday, March 17, 2011


I would define Abby's good days as days when she has the most control of her body.  They are not the days when she smiles or laughs the most, or days when she breaths well and moves well.  They are days when she does all these things on purpose.

Its difficult for someone not familiar with Abby to distinguish between a smile and a grimace, a "funny" laugh and a hysteric laugh.  We saw the first laugh that was not really a laugh with Abby when she was about two.  We gave her a medication for allergies that made her act crazy.  It made her laugh uncontrollably.  It was funny for a few minutes, then Wes and I realized that she wasn't having fun.  It wasn't a "funny" laugh, it was a "what the heck is going on and why can't I stop laughing" laugh.  She had a laugh like this last night, for nearly an hour.  It was funny at first, and then we went in her room and could see she wasn't in control.  Abby cried in therapy today when she had to use her stomach muscles.  She laughed so much last night her tummy is sore. Crazy.

I hate it when she's not in control of herself.

Losing control for Abby could mean that she can't swallow, bear weight, breath regularly, maintain eye contact, or do just about anything else.  Some of it is probably related to anxiety, but all of it is related in one way or another to Rett.  Isn't is always? There are times when Abby is so in control.  I ask her a question and she promptly uses her eye gaze to answer.  It's so wonderful.  At these times she can eat, walk, and communicate better. Other times, when I give her choices, I can tell she isn't able to maintain her gaze on the symbol.  She has too much going on with her breathing and grinding and patting and who knows what else.  She can't stand, let alone walk.

Its frustrating for me, not knowing what to expect from her from one minute to the next.  I can't imagine how frustrating it must be for her.

Have I said today that we really need a treatment or CURE for this?

Wednesday, March 2, 2011

So the last time I posted about seizures I was very frustrated about how long it was taking for Abby to respond to the increase in her seizure medicine.  Well, it took nearly 10 days, but they seem to be back under control.  In hindsight, that makes sense, but when she has a rough day of seizure activity, I get frazzled and very impatient. I'm trying to relax and enjoy the good news.  She doesn't have scoliosis and she isn't having seizures (right now).  And on top of it, she was really "with it" today with her motor planning.  We walked up the stairs, and she raised her leg about 10 times.  She didn't just do it one stair climb, but every time we went up the steps!  She also did awesome bearing weight on her arms tonight.  She stayed on all 4's for several seconds before attempting to sit.  Wow.  There's more.  When we went outside, she walked around our big circle holding my hand.  Sometimes she doesn't have the endurance to finish, but not today.  I know it takes a lot of work for Abby, and I can tell that she is happy with herself when she gets her body to do what she wants it to do.  So proud of that little girl!

No Scoliosis!

Abby went to the orthopaedist today to have an x-ray of her spine.  Doesn't it look great? For now, that is one thing that we don't have to mess with.  What a relief!

We are going to have to continue strengthening and stretching to help prevent any curve from developing.  She does lean to one side, which could become a structural problem rather than a postural problem, but for now, there's no scoliosis.  Yay!