Wednesday, July 1, 2009

...............................Never easy is it?

Can anything ever be easy? Not in my life it seems that way. Zachary has been getting this bruise on his lower back just above his sacrum area for no reason at all. Well I was watching it because the first time I honestly thought he fell and just didn't tell us since he is afraid he will have to go to the Doctors again. Well to make a long story short the bruise comes and goes. About 2 weeks ago he had one 9cm x 12cm and it was painful to him. Painful enough he asked for tylonal which never happens with our tough guy. I got so nerveous because of the size I took him to his pediatrician to have it looked at. Well he was like uh, uh, I think its this, I don't know really, maybe its part of the syndrome that they don't know much about. I demanded we start at the bottom and do blood work and go from there. Well his labs came back ok and his physical therapist in the mean time says I should probably call his ortho in Syracuse. Well his pediatrician decided to do a ultrasound.

The US results came in that there is no cyst (Thank God), but there is large vascular structure. Well we called his genetics Dr. in Boston to see what she thought and they are reviewing the US disk (being sent to Boston) and want to see him. They referred us to the Vascular Anomolies Center. So we go in August with our scheduled Orthopedic appointment. We have to keep an eye on this and keep taking pictures when it reappears. Well he has another one again and its almost as big as the other one. I just wish things would get better for the little guy.

In my opinion I think its something to do with his leg length difference. Its more prominent and he limps big time now compared to before his surgery (he had a growing spurt and of course the left side didn't grow with the Right) and something is pinching in there and causing this. They did say that could be a possibility. I sent them my pictures I have been taking and I had a really good shot of him standing and you could compare the way he stands and hip placement.

Well thats about it for now. Just going to enjoy our long weekend together this weekend. Not sure what we will be doing but Rob has relatives in from Texas (haven't been here in over 5 yrs) and the family is having a picnic. We also have a double header baseball game & bday party on Sunday and Sunday is Marissa's bday. Can you believe she is going to be 13 already. Time sure does fly.

1 comment:

Cheri said...

((HUGS)) Sorry to hear you have more to deal with. Praying things get easier for all of you.