What's New? Update as of 5/11/06...
 

Update as of 3/20/06...
Wow, where to start... well, the cold/croup season was NOT kind to us... Billy and his brother Nicky both had strep throat, and a couple mystery viruses that had them home from school way too many days for my peace of mind! My boss at the hospital where I volunteer on Wednesday afternoons must think I'm an absentee employee for all the days I had to call out with a sick kid at home, ugh... Billy's weight that he had just gained from the summer (when GI was worried about his weight loss) went mostly by the wayside since he wasn't feeling well and not eating. Thankfully, though, he did gain it back again, so now he is a full pound heavier than he was this time last year, although he's three inches taller!

Unfortuntely, this growth spurt seems to have done a number on his spine, as his orthopedic appointment yesterday suggests that his scoliosis has progressed after being stable for the past three years or so :( They weren't able to measure the curve, because he was so full of gas or stool that the intestines were obscuring the view of the lower spine where his curve is, but doctor was pretty sure it had changed for the worse even though he couldn't do a measurement. (You can see the old and new xrays on Billy's Spine Page) We are scheduled next month for another 3D CT scan to measure that against the previous one in 2004. If he is progressing, ortho thinks it is time to discuss fusing the abnormal area in the summer or fall to prevent further problems. The normal side of Billy's spine is growing but the smaller side is not growing at the same rate, causing the curve to worsen. This is a pretty big surgery, and I'm not looking forward to it if we have to do it. It will involve putting metal rods in the area, bone grafts and screwing the left hip to his spine, and most likely some kind of body cast to immobilize his left hip while the fusion solidifies... but better now while he is young than older, I guess. We also found that his left lower leg bone has twisted so his ankle and foot aren't lined up anymore. That can be corrected when we do the leg lengthening surgery at a later time though. We also got a new, better supporting foot/ankle brace moulded in fun Star Wars colors of black and red, so Billy was happy about that :)

We also have to find out WHY he has so much gas or whatever inside his GI (gastrointestinal) system. The GI doc has us testing for some common causes (other than the most obvious, the constipation issues from his anorectal malformation complications and slow motility of the colon) to make sure we don't overlook anything, and we will see the general surgery department next week to see if his bowel management routine (daily laxatives at the moment) needs tweaking to get him cleaned out. Too much stretching of the colon can cause continence problems if unchecked.

So, looks like we switch to problem solving mode after a while of watching and waiting. Keep your fingers crossed that the CT scan isn't bad enough to warrant surgery! Also, we see urology and neurosurgery next month, so hopefully we will get good news at those appointments!

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