Last week Andrew and I had a mini vacation planned around his aptmt at the Blue Bird Circle Rett Center in Houston. We visited a Granny (my aunt), and our sweet friend Stephanie in Kingwood. I wasn't sure how Andrew would do as I usually don't travel across the state without Felt or a grandparent. Andrew did well and I now know that we can plan more trips without any problems. In the past we dealt with lots of screaming and tantrums that we couldn't figure out and now we aren't dealing with those on a daily basis- so good times! During the trip Andrew did very well with potty training and stayed dry until we got to a gas station. He knew he wouldn't be able to sit on the potty comfortably at those times so he would look at me when we got in the stall and pee in his pullup so that I could quickly change him. Pretty smart!
We had a good visit with Dr. Neul and he spent 2 hours with just us. What a terrific doctor!! He discussed any concerns we had. He gave me lots of information. Some of the things I remeber now are the talk about Lexapro- an anxitey med that Andrew has been on for several months. It was originally given to him for sleeping, to help keep him asleep but really doesn't work as he gets up at five every morning. Dr. Neul said that many girls are on this med and they are unsure if it helps with their breathing and or with their rigidity. I haven't noticed it helping with either and it seems as though Andrew's hyperventilating is getting worse. He is panting a lot starting at five in the morning and it is starting to worry me. I know that if he passes out he will come to but the thought of it scares me. Dr. Neul felt like the episode I described as a seizure may have been a Rett Tremor- something that the girls do when they are in and out of sleep. He also said that we need to be massaging Andrew's fingers daily because he is crossing them when wrining his hands and eventually they could stiffen to always be crossened at rest. He encouraged us regarding a communication device for Andrew and said that he thinks the school district is silly for saying he isn't ready. As for weight and height- Andrew really hasn't gained any weight or height. A big disappointment! I really thought he had and we worked hard on it but I guess he lost what we thought he gained,. And he is only a centimeter taller. With this syndrome they have difficulty growing and their hands and feet become small. Andrew's feet stopped growing in January of 2008. It really worried me at the time but when we began to look at the possibility of Rett Syndrome it all made sense. I guess I never realized that his hands would stop growing as well. Back to square one and this time we are looking at nutritional supplements.
This past weekend Andrew got to play at his Nonnie and Dandy's house while I visited with some old coworkers from Dallas. The ladies and I drove around the hill country and went to several vineyards for wine tasting. It was lots of fun and great to catch up with friends. Nonnie (my mom) took these pictures while Andrew and I were exploring the kids room and looking out at the lake. What a sweet boy! I feel so lucky to get to be his mommy.
Rett Syndrome. One year Post Surgery
5 months ago