Friday, September 30, 2011

Sitting tall

Rett Syndrome is generally documented as having four stages, of which the second is called regression or rapid destruction.  Sadly, watching my daughter slowly lose skills that she used to do with ease has become such a common occurrence that I sometimes don't realize that they are lost until months down the road.  And that was exactly what happened when it occurred to me earlier this year that Reagan can no longer sit by herself, unattended, like on the floor or in a bathtub.  

I have plenty of pictures of Reagan sitting on the floor and then poof, one day I realized that she can't anymore and I don't know when it stopped.  It seems like it has always been that way but the pictures provide proof that  she was once a good sitter.  I talked to her physical therapist and we agreed that it is not because she lacks the core muscle strength, so we are not really sure the reason.  She has to be constantly moving and if she is sitting, that means kicking her legs, this might be difficult to do when she is in a sitting position so she lays down so she can kick.  Who knows?!?  

But, a couple of weeks ago I put her in the bathtub in a sitting position, knowing that within seconds she would collapse backwards and start kicking her legs in the water.  But, she didn't.  I sat there and just stared at her as she sat so pretty and straight in the tub, splashing her arms in the water and smiling.  She sat there for about 10 minutes and I just continued to watch in awe.  I don't know what changed, other than her recent g-tube surgery and being more round thanks to the additional weight.  It is such a big deal that I took pictures when she was sitting on the floor with Lauren.  These pictures are to me a reminder to not give up as well as to not take small things for granted.

so proud!

Lauren and Reagan

Daddy teaching Lauren to sit "criss cross, applesauce"


  1. Wow. I do the same thing. I can't even remember what it was like when Abby crawled. She just stopped crawling when she started walking. It wasn't until we went to our first Rett clinic that we were asked if she could crawl. They tried to get her to-she couldn't. I didn't even know she had lost it. Ugh. It does make it all the more special when they get them back, though.

    It is wonderful that Reagan is sitting again. She looks beautiful! Way to go Reagan!