Thursday, October 15, 2009

Finally an update! and xray too!

I have been needing to put up an update on Simon's progress- but there has been absolutely no time - but I haven't forgotten! I'm coming out of a (month long) fog and ready to report! He is riding his pedal bike without training wheel! Yeah - he is finally tall enough to put his feet down. But of course he fatigues very easily so it's only a few minutes at a time then rest. But he still has fun!

Well, we went to Seattle Children's hospital on Sept 22nd just to get confirmation that we were still on track with everything and got a big surprise. They felt he was not on track with what they expected from his xrays and things started to unfold from there. It was suggested we see a surgeon... but one was not there at the time, so we returned to Portland.

Simon's case was presented at Ortho grand rounds the next day and then we were called. There was concern that Simon could have another illness (possibly...) that needed to be ruled out called Skeletal dysplasia. There are hundred's of different types.... so there was no use going on the internet to try to figure out what this might mean for him (because some are a lot worse than others I didn't want to freak myself out!) . There was a doctor at that meeting that I guess is the top doctor for skeletal dysplasia in the NW and he took an interest in Simon's case and would like to see him. He also wanted an MRI and some other tests.

It was felt by several doctors that Simon's progress was quite rapid and the deterioration of the bone more advanced than expected for his age. The ortho PA also told us that she felt that surgery was definately in the future and they are concerned the head of the femur will soon break through the cartilege that holds everything together so to speak. I know, I'm alittle rusty right now on all the language and terms... lack of sleep and overwhelmed. Here are his xrays from August:

You can see on his right hip that there is bone travelling outside of the hip socket. No one is quite positive what this means - but everyone seems to think it is bad... You can also see the inside of the femur bone near his pelvis is shorter (the curved part) than on the other side. This is also bad.. and a sign that the hip joint is being pushed outward. The Ortho PA in Seattle said that the muscles will keep forcing it outward.

So here is the plan. He is getting an MRI under sedation on Monday Oct 19th which is suppose to rule out skeletal dysplasia (yeah it's at 1:45 pm and he can't eat after 3:30am...) . We see Dr. Goldberg, the specialist on Monday November 2nd and get his opinion on the whole deal...... High hopes here that we will at least know what we are dealing with and where we are headed.

Simon seems to be falling more lately. He will be running and playing and his leg just gives out. Otherwise he seems fairly normal and happy. Doesn't complain. Doesn't walk very far either. After about a half block of walking - always wants me to carry him - not sure if it's fatigue, pain, or just his age... but definately a pattern.

That's the update for now! I promise to update more often and after the next appoitments!