Thursday, April 22, 2010

Rett Syndrome sucks!

Avery has been so stable for so long that I started to allow myself to believe that regression was over. Well it wasn't. Her walking has gotten increasingly worse. She's stiff, rigid and unstable. I begged her neurologist to try medicine to see if it would help. No such luck, in fact it gave her horrible stomach pains. So back to square one.

At the moment, Avery is on 4 medicines daily. Some twice a day. On top of that she is underweight and with every centimeter taller is falling that much more off the growth curve. We have come to the point in this horrible Rett journey that a decision had to be made to give Avery every opportunity to be the best Avery she could be. So on June 16 she will be going into the hospital to have a feeding tube placed. They will also be doing a procedure that will help with reflux. The part that has me the most upset is that because we found out that her stomach empties very slowly she will need an additional part to her surgery. This additional step will require her to stay in the hospital 7 days (at the minimum) and only IV fluids and dextrose for 5 of the those days. I know that in the long run this is going to be an awesome thing for her but no mother ever wants to see her child suffer.