Winter 2005/6
Christmas is over, and we are ready to start a new year. My hope is that it is a quiet one. We have no upcoming surgeries scheduled thankfully. Billy had a barium swallow study this week, monitored by a speech therapist, which thankfully showed that all was normal with his swallowing. In February, Billy will have a skin test procedure to see if he has become sensitized to latex yet, due to his high risk of acquiring an allergy to it. We have ortho and gastro appointments in March, and uro and neurosurgery appointments in April. Things have really quieted down from the first year, when we had 1-3 appointments every week.

Fingers crossed that cold/croup season is kind to us, and to all out there with kids with respiratory or weight issues! Wishing everyone a surgery free year, or for those with scheduled surgeries, may they be complication free with fast and easy recoveries!

Fall 2005
Summer is over, and what a wonderful one it was! Between our family reunion weekend at the seashore, Denver VACTERLS conference, a trip with Bill to San Francisco and Napa Valley and a Caribbean cruise with my mom, it was more than a girl could hope for :)

I found out at the end of summer that Shriners did confirm that Billy's scoliosis really has been unchanged since he started taking standing xrays. Since his scoliosis is stable, and isn't predicted to change unless his hemivertebra starts misbehaving, spinal surgery is cancelled!!! I have decided to stay with his original ortho, who has been telling me things were fine all along, although I don't regret getting the second opinion and finding out the additional information that I gathered.

We also saw the uro, who confirmed that things are pretty much the same, which is music to my ears since I am happy with our present situation. We see allergy next month to see if I can find out if Billy has already been sensitized to latex, as he is at a high risk to develop this allergy. Although we take precautions, knowing this info could be helpful in prepping for a reaction, which we haven't had yet (and hope NEVER to have!). Also, thanks to taking Periactin again, Billy has regained the weight he lost this summer :)

Fingers crossed that cold/croup season is kind to us, and to all out there with kids with respiratory or weight issues!

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!