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.

Monday, November 28, 2011

I know it's been a while...

I haven't had much time to blog lately, but I do have a few photos to share.  Abby has been doing well, just the usual Rett Syndrome stuff.  We are still playing the waiting game on her device, but we're getting closer.  We've increased her evening seizure meds quite a bit.  Time will tell if the increase stops her morning episodes.  We had a visit with our local neuro a few weeks ago and talked a lot about the current IGF-1 Trial.  It's so exciting that doctors (not in the RS loop) are excited and knowledgable about what it happening at Boston Children's.  He said that it's pretty "mind blowing"!   The possibilities give me chills.  

Abby is loving school, which is just wonderful.  The best part is that the feeling is mutual with all her teachers and friends.  They are crazy about her!  She has been welcomed with open arms by everyone.  I was so worried that she would have a hard time making friends, but that is just not a problem.  Everyone knows Abby.  Given the huge barriers that prevent people from being able to communicate Abby, I am so grateful for the special connections she is making at school. What a blessing!    

This is a photo from her first field trip.  She had a blast picking out a pumpkin and taking a hayride.   

Abby and Logan were my little Supers for Halloween.  Logan is addicted to sweets, so Halloween was just fantastic for him.  Abby did much better this year, walking a great deal around the neighborhood.  She, too, had her fair share of candy.  I had two choices this year regarding Abby and trick-or-treating.  If we pushed her in her chair, she could use a switch to say "trick-or-treat".  We have done that in the past, and she really likes it.  However, she also likes to walk (with help, of course) and that would allow her to go closer to the doors to get the candy herself.  In the end, we let her walk without the switch.  It wore her out, but I think she had fun.  

A couple of weeks ago, Abby participated in an annual fashion show organized by the center where she receives some of her therapies.  There were over 70 kiddos with special needs that participated in this year's show.  Strutting out on the stage in their new digs makes everyone smile.  It's a fun event.  Abby had two escorts that made her feel like a princess.  

I'm surprised I don't have any photos from Thanksgiving...not even one.  I guess I was too busy eating, and keeping up with kids, and then eating some more.  Anyhow, I hope you all had a very Happy Thanksgiving! We have the trees up and are gearing up for Christmas.  Logan keeps asking me if Jesus is going to be here for his birthday party.  I would love some help answering that one.  I have yet to give him a satisfactory answer to the whole "but where are the pilgrims now?" question.