What's New? Update as of 12/11/11
The last couple updates were over a year in between, and boy was that a nice quiet stretch of time. However, it looks like we are in a more "active" phase of life again, LOL... Since the last post in March we discovered that Billy's foot could no longer wait for surgery. In June he started having pains and pins and needles in his foot when he wore his brace and shoe. The bones in his forefoot were being compressed due to the ongoing deformity and pinching nerves inside his foot. Since it's not good for his spine health to go barefoot with a large leg length discrepancy, it was decided that this was the time to take care of the foot, but we got many more years in between surgeries than we had originally anticipated. In the end of July we had the surgery, and the foot looks great. We did have a lot more of a complicated recovery than anticipated, as Billy's healing was slowed down by the lack of muscle and bloodflow in his foot. Finally, after about 9 weeks, his incisions fully scabbed over and he was able to wear his brace and shoes again and start walking. He started the school year in a wheelchair, until he was able to start walking, and then gradually build up his leg strength again.
That is eventful enough for one school year, however, that is not to be the end of the story. It looks like the school year is going to end in a wheelchair as well, ugh. We went last week to our semi annual appointment at the International Center for Limb Lengthening in Baltimore and found out that that "sometime in the future" leg lengthening surgery was ready to be scheduled. After careful consideration of all factors, we are leaning toward having the surgery done hopefully in February, to allow us to have the most intense parts done during our last year in the elementary school system. I trust them to work with us to get Billy's course work done without affecting his grades and I want this over with before we go into the "unknown" world of middle school next year. He may well start middle school still in the fixator (the doctor feels we need to go very slow and carefully due to Billy's abnormal leg anatomy, and he may be in a fixator for as long as ten months), but it would be in a locked, protective phase to help the new bone we've grown to get stronger and harder rather than in an active growing phase.
Now, as I slowly wrap my head around all the information I'm trying to process since Thursday's appointment, I need to start planning and readying for this upcoming surgery. Hopefully, if we can schedule it in early February, that will allow six full months of healing after his foot surgery and will give him the ability to still enjoy some of next summer, even if still in a fixator. And most importantly, it will allow him to start middle school next year in the best position possible to have a smooth transition!
Brief update - 12/14/11 - We were able to move the surgery up to 12/27/11, partly to "get it over with" and start the healing process and partly because we've met all our insurance deductibles and out of pocket costs for the year, and the money we save will be better spent on physical therapy ;)
Posted by conni60640-ivil
at 12:42 PM EST