Yesterday James had another visit with his Dr at the Women’s and Children’s hospital, she talked a little more about the MRI and said she is looking for someone to help explain some of the things that she saw, some parts of the bones were highlighted and she isnt sure what it means. She said they havent seen it before. At first I was stunned as I dont recall her saying anything about this over the phone (she may have, I was in some shock while she spoke). Then I thought surely if this so unusual or odd they would have done other tests or had us come back in. Unfortunatly when i go to these appointments it takes time for things to sink in for me and I dont ask questions while I am there. She said there is one other person in the world she can contact about it. She will get back to me if she finds anything out. I asked her about the chance of growth on some of the bones that had rings around them, she said it was really a wait and see what happens. That is frustrating. At the moment she is happy with the growth, it hasnt changed since the last time we were there 3 months ago. There is still talk about surgury in the future to help relieve some of the joint restriction on the thumb but again we just have to wait and see, at the moment it isnt stopping him doing anything other children can do but it may as he gets older. The dose of Methotrexate wont be coming down for a while she said, I wonder how long he will be on it? We still use the EMLA cream but he still hates going every week.
We also had another blood test and saw his OT, she is great, each time we are there she has new fun things to play with and do to help with the fine motor skills and to help with the shoulder to rebuild some muscle. I havent seen any change in that which worries me, we do so much to help but it just isnt working. hopefully when summer comes I can get him into a swimming class or something, as swimming is a gentle (and fun) way to help with that kind of thing.
James had is first school report and it seems that with things like bookwork (writing) and art he is just under the satifactory level. Im not sure if this is because he has trouble with it or if it is just something that doesn’t interests as much as the other things. I will have to make time to see his teacher about that, a part from that he has done really well at school, has made some nice friends and is realy getting into learning to read and write and do maths etc. Im proud to say he is my son!