Update on Lilly's Spine

We had a followup visit with Lilly's orthopedist in Pensacola last week. They did new x-rays (which Lilly didn't enjoy at all) and measured the changes in her curvature since her last visit back in the spring. Her curvature is, not surprisingly, worsening as she grows. And she has grown a lot since we've had her home--8 pounds, 3.5 inches taller, 4 shoe sizes! Good nutrition does wonders.

Growth is good, but the worsening curvature is not. It has gone from 95 degrees about a year ago, 100 degrees in the spring, and now 115 degrees. Her two fused ribs on one side and the corresponding fused vertebrae and hemivertebrae in her spine prevent her left side from growing at the same rate as her right. In fact, the left side really can't expand at all. So, if left untreated, eventually the curvature would have severe impacts on her lung capacity, her cardiac output, and who know what else.

The orthopedist here feels that surgery is now indicated sometime in the next year, no later than a year and a half. After looking at her x-rays and examining her spine (Lilly didn't cry while he looked her over--WAY different than our last visit!), he sat down, looked us in the eyes, took a deep breath, and asked "So, where are your families?"

I knew where he was going. The surgery itself--likely to involve place VEPTR implant growth rods and separating the bone fusions--will be complicated and risky, and is likely to require an ICU stay and lengthy recovery. Being near family to help with the older kids will be key. When we answered "NJ and PA," he said "how about Children's Hospital of Phildadelphia?" (CHOP) He highly respects the surgeons there, and felt that their facilities offered the best care and best outcome for Lilly. I asked about Shriners in Philly (I've heard a lot about Shriners on the various yahoo groups I've found that deal with congenital scoliosis), but he seemed to believe that CHOP would be better. The dr. he referred us to, Dr. Dormans, is the head of pediatric orthopedics at CHOP, and two other surgeons that work there are world renowned for the type of surgery that LIlly is likelt to need. As I've done more research about CHOP and the surgeons there, I am increasingly comfortable and confident in this direction.

After returning home from Pensacola following LIlly's appointment, I had a call within just an hour or so from the staff at CHOP, and they were able to get her scheduled to come in for an initial consult while we're home for Christmas already! We are so thrilled they were able to do this--saving us an extra flight to PA and all the logistical challenges of finding care for the older kids at another time.

Our hope is that we can schedule her surgery for next summer, when the kids are off from school, so we can all go up, let the big kids enjoy time hanging out with their cousins and Grammy and Pop Pop, and Tom and I can be freed up to be in Philadelphia with Lilly.

Pray with us that the surgeons would have wisdom to know the best course of treatment for Lilly, for the timing to work out perfectly, for her health in the meantime to be good, for wisdom about whether and when to seek any second opinions.

Praise God with us for good care already, for her overall great health, for the fact that we are able to be seen while we're already up in the area.

Stay tuned!