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.

Happy Easter!

Hope everyone had a great Easter!

Avery and Riley

This post is a bit late but better late than never! Riley Bleske and her family came to the beach for spring break so the girls got to see each other. It always amazes me just how much Avery and Riley look alike.

April is around the corner....

....and that means 2 things---Autism Awareness month and Dress Up 2 Cure! With all that is going on in my personal life, I didn't think I could extend myself and try and do a team BUT anyone who feels like giving should support Rett Syndrome research and Team Brooklyn! I'm sure anyone who has visited this blog in the past knows how very special that little girl and her mom are to me.
I know times are tough but every penny, every dollar adds up........it adds up to fund research that might one day CURE Rett Syndrome and give us our daughters back. That is something that I can't even begin to put a price on! I ask you, can you give up your morning latte, maybe pass on that late night pizza, skip a movie rental one week???? I challenge you to toss that change/cash in a jar and at the end of April put it towards a cause near and dear to all of us......Rett Syndrome research and our CURE!!!

Trains..

Dress up time.

Avery's cousin, Julia, came to play today. Julia loves playing dress-up and wanted Avery to play too. Then Cole got involved and was the King and was dancing with Julia...pure innocence.

MOM

music to a moms ears!