Wednesday, July 29, 2009

Mini Vacation

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.

Tuesday, July 14, 2009

Busy Summer

I haven't posted anything in awhile and I guess life got a little busy. Andrew had his real first dentist appointment and had to be put to sleep to have his teeth cleaned. They found 2 cavities! What?? We just introduced candy to him several months ago for potty training. At least they aren't his permanent teeth, right? He is very difficult to brush his teeth and screams and closes his mouth the moment he sees the toothbrush. I have to get better at this. So, what I thought would be a one hour appointment for dental cleaning took 3+ hours because he is so hard to wake up when he has had anesthesia. I rushed home from this appointment to talk to a scientist who is doing reserach on the Rett boys only to find out he wasn't interested in Andrew's case because of his Somatic Mosaicism. Aaah, a little let down. And after a 20 minute rest Andrew's first therapist showed up ready to go. Back to the grind.

We also took a family trip to Lake LBJ, where Nonnie and Dandy live. We took the Adams family with us and even our big Lucy (or as Rose likes to call her Bucy). We all had a blast and Felt and I can't remember the last time we did that much when we visited my parents. We played on the water, went tubing behind the boat, and relaxed in the sun. Andrew loved swimming in the water even though his life jacket swallowed him up. He just smiled and looked at me so sweetly in the eyes. I love being able to hold him in the water. After a day full of fun we came back to the grandparents house and while Andrew was sleeping for 20 minutes or so, he had a seizure. He hasn't had one in maybe a year., not really sure. He opened his eyes and looked so scared and was shaking all over. It lasted about a minute and seemed like forever. We haven't seen anything since then and hopefully we won't.

We continue to be busy trying to get things done for our foster/adoption license. At one point we were told July 6th we would have it but that day has come and gone and now we are looking at two weeks from now. Who knows? It is definitely a mess and I totally understand why more people don't offer up themselves and their families to do this. We are still looking at adopting a two year old boy named Felix. He was taken off the adoption website and after asking several people it seems that his caseworker is waiting for us to get our license. He is absolutely adorable and although we have never met him Felt and I feel like we have some kind of connection to him. I know it seems silly but at night I sit and wonder about him. I wonder if he has a foster mom or dad in his group home. I wonder how the other 12 kids in his home treat him. I wonder who tucked him tonight and did they say a prayer with him or read him a book before bed. Aahh. A lot of family and friends have asked us why we don't just have another baby than go through all of this and why on earth we would want to adopt a child with special needs. I don't have the best answer for the question but here goes... We have always wanted to adopt a child. When Andrew was diagnosed with autism and then Rett Syndrome we considered never having any other children ourselves. We were introduced to an awesome family who had adopted a child from CPS and had another friend starting the foster process. Our interest began to increase and we saw a need. We took the parenting classes, a requirement for the foster/adoption license. We knew this is something we wanted to do and started the process. All while we were not thinking of special needs children. The more we read about the children that were available and their needs, the more our hearts began to open up. When we saw Felix and a description of his needs we thought- that's nothing and we can handle that. Some people have questioned if he or another child we might would adopt would have ongoing medical problems or learning problems. Our response to that is -don't we all have ongoing problems? Who is really ever perfect anyway? I think our home and our family is set up much better than most for a child with special needs and we already know so much about the medical community here in town and around the state. So, the whole situation really is in God's hands and we can still have more biological children in the future if we choose to. I'm not too old yet!

Next week Andrew and Mommy are taking a week vacation for doctor's appointments in Houston and visits with friends and family throughout east Texas. I am a little nervous to have him away from home that long but also excited to see how he does. It's time he deserved a break from all of the therapy. Too bad we can't get a break from the heat!