It's just not fair

Yesterday was a long day. We picked up Daniel early from school and took him to Seattle Children's Hospital to see THE doctor again. We were checking in with the doctor, not because of anything new, but because we just needed to follow-up and discuss a few things with him.

Daniel is able to make friends anywhere he goes, so naturally he was saying hello to everyone who walked past him. Some stopped to say hello to him as well. He was very interested in seeing the doctor and kept saying his name over and over. We had the appointment at 2pm, but arrived early and sat in the waiting room for about a half hour. The doctor was prompt and was very interested in Daniel's teeth. Daniel has recently lost a lot of his top teeth and the doctor was struck at just how small his teeth are. The doctor (since he is a geneticist as well) said that there are thousands of genetic syndromes, but only a handful that cause dental problems. He also went on to look at Daniel's face in general which has always had some unique parts to it. Under his eyes it is sunken in a bit, his nose has a tip that goes under and it is flat from the nose to the mouth. His earlobes are almost non-existent. All of these things can be or may be involved in an underlying genetic syndrome though the question is what one. The doctor spent some time researching while in the exam room. He then explained that Daniel had dyspraxia which explains why Daniel can lay down and move his legs with no problem but gets up and cannot walk well. We asked about Daniel's head shake that he has always had and he attributes that to posturing. We discussed Daniel's future as we had last time and he was giving us a bleak outlook on how long we could potentially care for Daniel before we start to get too old.

After he left, he came back rather quickly with a colleague who had a few suggestions. He wanted to see if Daniel's penis was small (which it is). This guy had a New Zealand accent so just try to picture a guy saying that in that kind of accent. Our doctor and the other doctor were talking about what other genetic tests to run and what types of syndromes that may be indicated. Finally both doctors were finished. Then Daniel needed to get his picture taken (his face and his genitals). Then it was time for blood work. We went to the lab and waited another 20 minutes or so. Daniel actually did really well for getting his blood taken. Then we left. We left at 4:30pm.

When we got home, Jason was walking Daniel up the stairs and Daniel took an added step and leaned back causing both Jason and Daniel to fall down the stairs. Daniel got a bump on his head and Jason and I both added many gray hairs to our heads. It was definitely not a good end to a long afternoon.

Last night, feeling sorry for ourselves, Jason was trying to figure out where we need to move that has the best care for adults with developmental delays. He was also upset at our financial situation which really hasn't gotten much better and we were both just thinking, it is just not fair.