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"

Three weeks post g-tube surgery

It has been 3 weeks since Reagan had surgery for a fundoplication and g-tube and I am very happy to say that she is doing well!  We were released from the hospital on her 6th day and sent home with supplies and instructions.  The transition home was a little difficult but we have since got the hang of things.  She didn't seem to have much pain from the surgery once we were home and the only problem was some discomfort from lack of bowel movement and also having a lot of gas.  We are still tweaking her medicine to find the perfect dose to keep her comfortable.

She went back to school this week and it has been a smooth transition. She was ready to go back last week, which was 2 weeks after the surgery, but the school district was closed all last week due to the devastating wildfire in our community that left many families without homes.  We feel very fortunate that our house was not damaged and our hearts are heavy for those that lost all of their belongings.  But that is a separate post, back to Reagan.  I haven't weighed her since the surgery but I can see that she has gained weight and she also seems to feel better.  She is more alert and has better use of her hands already.  She will hold on to my hand while we walk to class in the morning, which is something that she lost in the early stages of Rett.

The only negative was that it took her some time (and she's still working on it) to get her balance back and feel confident in walking.  She is getting better every day though and we have resumed her private physical therapy sessions in hopes of speeding up the recovery.

I am very happy that we chose to have the g-tube surgery and I am no longer stressed about going into the Winter months and fearful of her getting sick, then losing several pounds that she can not afford to lose.

Here is a picture that my Mom took with her phone a couple of hours before surgery:

And smiles again 5 days later: