Let's Talk!

With Rett syndrome, communication is tricky.  I know that most girls Abby's age are talking or texting for much of the day.  She's a teenager now and teenagers are social creatures. 

Recently, I created a Prezi for her peers at school, to help them understand how to communicate with Abby.  Now that they "get" the basics of Abby101, they are asking to hang out with her and that has changed the dynamics of her school experience.

Although I still think regular brain function would be simplest, I'm excited about the new developments in eye-gaze technology!  Next week, Abby will go to her official assessment for an augmentative communication system.  It's been a long process with a lot of homework involved, but there is the potential for Abby to say things she could never express through traditional eye-gaze communication.  

Abby got to try out the new technology at the O.R.S.A. family conference last year.  What amazed me most was how quickly she could respond to the questions.  You get so used to the response delays, you can forget that the main problem is apraxia.

Beyond the possibilities for Abby and others on a personal level, this new technology is opening up renewed interest in scientific studies of communication and cognitive function. The world won't have to take our word for it anymore.  We will have proof.  These people with Rett syndrome are smart, they understand everything, and they have a lot to say!

Perpetual Puzzles

There is nothing logical about having a child with Rett syndrome. Most days present you with random, intractable puzzles. I'm so exhausted from Rett puzzles.

In other parts of my life I can work on fixing problems and feel like I've been helpful. I like puzzles.  I just got a 1000-piece jigsaw puzzle for Christmas and I can't wait to tackle it.  It will be challenging and it will take me a long time to complete, but I have confidence it can be done.  Sometimes, Rett syndrome leaves me with a complete lack of confidence.

Our latest Rett puzzle involves Abby's digestive system. Much of this fall has involved too many episodes of pain, often after eating. Through a series of tests and medication trials, we've narrowed it down to her stomach.  Abby had an upper GI scope done in November, revealing nodular gastritis, but biopsy results showed no infection. The test did confirm what we already knew:  Her stomach muscles don't move when they are supposed to.  Her digestive system gets stuck.  It's a Rett thing.  The Rett mutation interferes with proper functioning of the autonomic nervous system, among other things.

Abby's parasympathetic nervous system goes on strike often.  She spent Christmas Day and Boxing Day in agony. Her communication-by-eye-gaze can be amazingly accurate and there is no mistaking her pleas for help while she's wailing away in pain. I can't fully process that emotion of feeling utterly helpless and unable to console my child. 
Even though I'd like to give up all these Rett puzzles, we work away at them, together with the help of medical professionals and other Rett families.  We finally took Abby to the ER where she was given an enema and tested for gall stones.  The gastric cleansing seemed to jump-start her GI muscles and everything began to move normally again (for now...). We have a happy teenager this week.  We have a follow-up appointment with the paediatric gastroenterologist in January.  We'll continue to work the problem for this and all the symptoms that come our way.