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.

Sunday, November 7, 2010

Thankful for uneventful days

Today was an uneventful day, and I'm thankful for that.  Abby didn't do anything that made me call the doctor, search the internet, or read through our Rett Handbook.  I didn't feel the need to stare at the monitor while she slept or keep an eye on her lips to see if they were a tint of blue.  She roamed around the basement without assistance for the first time in a long time, which is so great.  She swallowed well most of the day and was in a pretty good mood.  

Last week it was a seizure one day, blue lips a couple of times for a few days, eyes rolling in the back of her head one day. There were the usual melting spells and periods when she wouldn't swallow.  She walked okay one minute, but wouldn't even stand up the next.  It was not the best week.  She stayed home from school so that I could monitor what was up with her breathing.  I am thinking she was having small seizures triggered by breath holding.  

I'm still not used to it.  I call the doctor and try to get some answers.  Why are her lips blue when she's not seizing and seems to be breathing somewhat normally?  Is her breath holding causing seizures?  Why would her eyes roll back?  Why would she have a seizure out of the blue when she hasn't had one in 8 months?  What should we do?  

Abby's pediatrician is consulting with her neurologist and a pulmonologist, but I already know what the conclusion will be.  She has Rett Syndrome.

One day I might get used to it, but I'm not there yet.  I know all of the above are common in RS.  I know there is very little, if anything, that can be done about it.  It just doesn't seem like that should be the case, I guess.




  1. cheers for uneventful days and I hope the rest of the week goes the same way!

  2. oh, ann marie. i'm so sorry. so glad for uneventful days too. love your sentence, "...but I already know what the conclusion will be. She has Rett Syndrome." so true. and there should be something we can do about it! one day.