Monday, July 21, 2008

Rett Times

We have had a difficult time with Abby this last week. There are times when weeks and weeks can go by and she gets along just fine then Rett Syndrome seems to hit her a little harder. I wish I knew why and how this whole thing works but Rett Syndrome is totally unpredictable.
In the last week she has all but stopped eating and has lost 4 pounds since her last doctors visit 3 weeks ago. She wont even open her mouth and when she does she eats less than half of a usual serving or meal. She has been very clumbsy and at times has refused to walk at all.
A normal Abby will walk around the house and jabber all day and hit at her toys or follow me everywhere. Lately she seems very content to just lie on the couch.
I was gone last night and her Dad did say he was able to get her to finish a meal so I'm hoping we are coming out of this. It's happened before so I'm keeping my fingers crossed. She is still drinking her supplements so I am not overly worried that she isn't getting any nutrition. She did flirt alot with her Dad last night so that's a good sign.
I am a little worried about her teeth. Her grinding has gotten really bad. She doesn't grind her back teeth she grinds her front ones and the teeth on top next to her two front teeth are really ground down,one almost in half.
Well it sounds like she is finally awake for the day.
I'll let you know how she does.
Thanks for stopping by.


Avery said...

I hope things start to improve for abby. Avery has been living off yogurt,bananas, the occasional waffle and carnation instant breakfast for the past 2 weeks. She gags and chokes if I offer her anything else.

Brooklyn said...

Yes, oh how we hate those rett times. Ugh - I wish I could be right there to give you (and abby) a great big hug! Hang in there!

Terri said...

And I wish I could hug ya right back!

Brooklyn said...

Hey, I was thinking - I am working on our mailing list for Girl Power 2 Cure and would love to add you! All I need is:
Your address
Abby's birth date
you can email me at