June 2005

What's New?

It's been an interesting summer so far. We had a great time at our family reunion weekend down the New Jersey seashore, and Billy and I had a wonderful time meeting and reuniting with our friends at the VACTERLS conferencee. It was so nice to see him running around with other children who have many of the same medical issues that he deals with. It was a great confidence booster for children, many of whom had never met another person with VACTERLS. I put some pictures from the conference up on another page.

Medically speaking, it's also been interesting. In early June, Billy was presented to a group of doctors who were visiting for TRP training at Shriners Hospital in Philadelphia. His ortho there asked their opinion as to how to treat Billy's scoliosis, saying that he was thinking of putting the titanium rods from ribcage to pelvis to stabilize his spine/pelvic region. To my surprise, most of the doctors seemed to disagree with this. The feeling seemed to be, from those who had previously treated children with SA type I with hemisacra, that his scoli wasn't progressive and that his spine had curved to where it needed to be to balance him out. They felt that straightening it would put pressure on the fragile nerve roots and would cause neurological problems with his legs/bowel/bladder nerves. When we saw the NS in May, he had echoed these same concerns. After finally getting my head around the idea that this surgery was needed because his scoli WAS progressive, we have now jumped to wait mode. I sent old xrays to Shriners for them to review to determine if the scoli is progressing or not. I have a feeling that they will find that it is not, at least not since the initial progression when he started standing and walking. His old ortho kept telling me that he wasn't progressing and that surgery wasn't needed, and it seems he may have been right all along

May 2005
Billy just turned five, and for a present we found out at the LLD clinic that his discrepancy is now only predicted to be 6cm instead of 9cm at maturity! This means we most likely will be able to do a less invasive shortening procedure (technically it doesn't shorten the leg, it slows the growth to allow the other leg to catch up, LOL) on the longer leg instead of the lengthening surgery and wearing the fixator for six months on the shorter leg. This is huge news :)

After much debate, and two additional opinions, we have decided to go with the surgery to have titanium rods implanted on either side of Billy's spine from his ribs to his pelvis, in the attempt to try and "lift" his sagging Lspine out of his pelvic cavity. It has sagged there, since he is missing the left half of his sacrum. Dr. Betz at Philly Shriner's feels that doing this will give him a chance to get straightened out a bit and in an optimal position to do the lumbosacral fusion to stabilize the area for the future. This makes more sense to me (backed by three docs) than just waiting to see if his curve gets worse and the spine slips further down and then fusing it in that worsened position. This surgery won't be until the end of this year, or early next year, so we still have some time before that.

We do have some upcoming fun things. We have a weekend trip to our family reunion down the shore to look forward to, and Billy and I will be attending a VACTERLS conference in Denver, CO the end of June. I can't wait to see all our friends there!