Day 1 in Boston

What a day it was. Well we started out going to the Hospital at 730 am for 2 appointments that where set up. 1st was Complex Care - which is a over view of everything going on and where the teams of Dr's group together and work off of each other. Well by the time we walked out of there they had booked up for a Renal Ultra Sound, Hearing Test, and Xrays of the AP Lateral, Cervico-Thoracic Spine.

So now we where scheduled to be there until atleast 4 pm. Well we got done with the tests pretty early so we headed to the hearing test early in hopes they would get us in and out. Well our hopes where granted. Yep thank god because by then Zachary was at the end of his rope with seeing people, and people asking him a ton of questions (as he puts it).

Our second appointment was with ortho (our main reason for being here). Well we didn't get the DEFINITE answers we wanted or needed to know, but found alot out. They said he will need surgery, but what way she was unsure of. She said she wanted to speak with 2 other partners and see what would be best for him since he is in a gray area. She spoke mostly of the surgery that would insert rods in his bones for support. Unsure if it would be all 3 leg bones or just 1/2. Either way we are looking at a minimum of 1 week stay for that and bone grafting to go along with it. I need to look up more about that because they said the grafting would come from a donor and while they where doing it they would biopsy the tumors.

We did find out his arm is shorter on the left side also (like his leg) but right now we have decided to let that be seeing he isn't complaining of anything bothering him and the xrays show it to not have many tumors on it compared to the legs. Plus the arms don't have all the stress on them like the legs. His left foot is smaller than the right (we all have that right?) well his is a while shoe size. Again nothing we can do right now but make sure he has good shoes/sneakers on his feet.

Tomorrow we are back at the hospital at 730 and have genetics & opthamology appointments. When done with those we go back to complex care and touch basis. There may be more tests tomorrow they said. Luckily he has recently had his bone xrays, & mri so they didn't have to redo those.

The best news for us as parents from today . ........Zachary had a hearing test and he can hear. (Ha Ha Zachary no pretending you didnt hear us because we know now:)

Thanks for you all keeping us in your thoughts and prayers. I am not sure if we are coming home Friday night or Saturday sometime. If we stay in Boston on Friday I will post a update again, otherwise look for a update sometime this weekend.

If anyone has any thoughts or questions please feel free to leave them and we will ask the dr's while we are here. Right now I can't think straight with all the info they have given us so I am sure something simple has slipped my mind here for the update and to ask the Dr's.