NIH Days 3,4, and 5

The end of our week really flew by. It was such a good experience, baring the one awful encounter with the speech therapist we met with. Short of that...she was an idiot who thought she knew everything, and thought that everything we've done for the past four years was wrong. Stupid woman!

We started day 3 with photos...Max wouldn't open his eyes. But they mostly just wanted pictures for their files and for research. They got him up against a grid to measure his height too. He is so tall!

Next was genetic counseling, where they go over both of our family history info. That's always a joy. It's really enough to remember all about Max's condition to not have to keep track of every ailment of every family member! In this appointment we did find out that they have created fish in the lab which have Cbl-C. The genetic counselor showed us pictures of them. It was totally weird! They were certainly developing differently. Just was kind of weird, and cool, and strange.

After that appointment, we met with the nutritionist who was surprised at the amount of calories he takes in. She also took note of how much he moves, and said he must burn a lot of calories. No one else has said that to us. We've thought it, so it was nice to get confirmation about it.

Our last appointment was with the neurologist. She was really nice, and interested in his treatment and story. She had nothing to add, so we felt pleased tat he was getting all he should from Dr. L.. But we didn't ever think that he wasn't. Again, this was mostly for research.

Thursday morning we started bright and earlier with the stupid speech woman. I really get too mouthy with it all so we'll let it pass on the blog...but believe me...they all heard about it...and more will this week when I write up a report on it. Stupid woman.

After her, we went to the dentist. What a turn around to the crummy start to the day. He was a pleasure. An old man...very kind with Max. He spoke French, and was from Belgium, so his English was funny. But he was so nice, and said Max had very good dental health. No cavities no gum issues!!! And Max was a champ with all of the picture taking of his mouth and xrays. The doctor also said Max won't lose that gap between his teeth, because his mouth didn't develop fully, just like his brain, as they form at the same time. They all thought this was very interesting!


From the dentist we saw an occupational therapist. She was very helpful, and mostly just wanted to hear our story, Max's story, and about opera with Max. She gave us some pointers, and Max showed off a lot with his switch to talk to her. In the end she gave Max one if her opera cd's for him to take on his journey to the UK.

That evening we went and got Max a new stroller, and took a little drive around DC. It was pretty...and cold, so we stayed in the car!
Don't know if W was home that day, but here's as close as we could get to his house.


Our last day we met with rehab therapy and physio therapy. They also gave us some pointers for moving Max, which for me needs some help! He's getting so big, and I'm not!

We rounded off our appointment meeting with the head metabolic doctor. He went over all of Max's lab results, and over each appointment we had met with. He had interesting things to say. They are really intrigued with Max. He is more affected than a lot of the kids they see, yet, his eyes are healthy, his organs are healthy, his b12 levels are through the roof. They just don't get him! We of course we pleased to hear all of that. I'm glad he's a part of their research, but even more happy to hear good reports back from everyone! I'm so proud of our little monster!