I realized I haven't been writing about what is going on in the Garcia house. Everyone is busy...the story of all of our lives. David is in China for two weeks. He had a crazy time trying to get there, but he now made it. He was able to IM me when he got settled in with a few hours of sleep. Grace is in swimming for the summer, and if we can get Evan potty trained, I will get him in lessons in the fall. Grace is having a ball, and could light up a room with how enthusiastic she is. I am not sure how I am going to do it, but I would love to keep her in swimming year round if possible, if not maybe just every summer. I just don't want to lose momentum. It is not easy with David in school, but it is such a wonderful skill and exercise. I am not a great swimmer, and I always wished I was better. So if I can do that for my kids...that is what I want to do. David is a great swimmer, and maybe when he is done with his Masters, he can take the kids more and work with them. Practice is the key to being good at anything. Evan has been keeping us busy with his appointments. Everyday I am thankful that all of this is not worse. In a previous blog you got to hear me express my anger about stupid people and stupid comments. I need to get a stronger backbone, so I can be strong for Evan. It is not easy to see someone single your child out, and I need to learn to react in a way that is more matter of fact than a wounded animal. My hope through all of this is that it makes Evan stronger (and me too). We got his blood tests back after a lot of run around. It literally took three months to get blood tests processed between our pediatrician, the children's hospital and our insurance. There was mass confusion since it was such a specialized test. Evan is anemic, but we think we can get a handle on that with daily vitamins with iron. He also has some low T-cell counts and some high B-cell counts. I was not sure what this all meant, but I got some answers. Kids with VCFS have a small thymus gland or no thymus at all, which makes them produce less T-cells. T-cells fight viruses. He has a higher B-cell count since he has less T-cells. High B-cells can mean a more serious disease like cancer, but it would have to be extremely high, and all B-cells affected. Not all of his are affected so there is no worry there. We went to the Orthotist last week, and Evan was fitted for night casting and day casting. Since his tiptoeing is pretty high, (Seriously, his little toe does not even touch the ground when he walks barefoot), they thought we should go with day and night braces. They should be ready in a couple of weeks, while they make them and deal with insurance coverage. In the mean time I have to do PT stretches with him a few times a day, which he does not love. He is starting to be a little resistant, so I am anticipating a bit of the same reaction when he gets his legs braces. The little man has had a break from speech at school, but sometimes I see a huge difference when he can have a bit of a break. (he still goes once a week through the hospital) He starts up again in July 2X a week through the school district, and then has all of August off. We went back to a pediatric dentist, and he will be sedated and get everything taken care of most likely in Mid July. We are looking forward to getting it all done and hopefully with sealants it will protect his enamel.
We are headed to Eastern Washington in a couple of days to see my family for the 4th. We are looking forward to a change of pace for a couple of days. Happy 4th of July to you all.
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