SERIOUS situation & need ortho ASAP!!!!

Quick update

Just a quick update. We went back to doc this afternoon. It was okay w/ the doc. He said he thought ALOT about her case last night. I can see why. Admitted it was nothing like he expected it to be at this point in time. Listened to our concerns and said they are valid. He too is very worried about her increased infection risk right now w/ the way the would looks. He's put her on antibiotics. (amazing, we said this yesterday!). Anyhow, he was troubled by it all and how everything turned out. He has recommended a hand/ arm specialist out at UNC who deals w/ very rare cases. He said he's only seen one other case like this. We won't know for another two weeks. They will re-x-ray then and then we plan the course of action from there. It is definitive at this point she will need major surgery again. They want to most likely put a very long metal plate in again but on the side of the bone this time, not hte top. He said her muscles have already really, really started to atrophy. Alot. She can barely move a thing but has been instructed to move it a teenie bit as to try to save what she has left. He does feel she will have use of that arm but also said he will not know for another two weeks. However, all other professional experts I've spoken w/ and shown pictures to have already said the chances of function coming back to her are minimal at best. Time will tell. We are still VERY, VERY concerned about it all. Next step is the new expert in this field who deals w/ very rare cases. Apparently, this is very rare for a child not to heal at all. Still not happy they did not recast her. The main reason for that though is b/c at this point they are too concerned about the wound and infection. They want to be able to see what it's doing. In addition, any infection is potentially deadly to her due to the heart condition. Urghh.

I will talk w/ the school Monday. I feel like we're walking on eggshells around her. Nervous about the school environment. Again, any bump and it's still a mess for her. Thanks for all the kind words, support, private mails and general concern for our daughter. Post in about 2 weeks.

Take care,

Stephanie--mom to 7 special kiddos!!!