It's funny, the last update I was amazed that it had been a year since my previous update, and now this one is over a year in the making.  It's a good thing, it means that things are finally slowing down in our medical odyssey with Billy. 

The past year and some have been nice and quiet on the medical front, Billy is now eating like a horse, or at least like you'd expect a ten year old entering a large time of growth to come.  He's not gaining much weight at all, considering how much more he is eating now than before, but he's maintaining his weight, and he's been very healthy, so I won't complain, much.  It still awes me, after the years of struggling just to get enough calories into him to maintain his weight, and most of those calories were from liquid supplements and not actual real solid foods... he hasn't needed to drink any supplements now for about 3 years.  He is still very small for his age, though.  It's probably a good thing he isn't gaining too much, as too much weight with his leg and spine issues would be just as much a problem as not enough, so this is most likely better in the long run. 

Our medical appointments have dwindled to twice a year for NS, orthopedic surgeon and GI and annually for nephrology and urology and things have been pretty much unchanged over that time.  His kidney remains healthy, his spinal fusion is nice and solid, and neurologically we have no further decline since his last spinal cord detethering.  His bone age is about 2.5 years behind what it should be, but that just means he has more years of growth left to help catch up.  The leg length discrepancy has grown a bit and his left foot has warped even further due to the fused bones midfoot, but we are still able to compensate with an AFO orthosis so we can delay surgery a bit more.  Our hope is to delay it until he gets to about 13 and do the foot surgery and the leg lengthening at the same time.  Fingers crossed it works out that way!

Other than that, Billy is now in 5th grade, Nick has moved up in to the middle school, and Sara has graduated from high school and is now in the last half of her Freshman year at college!  All the kids are doing well academically, and Sara made the School of Education Dean's list her first semester :)  I really miss her, I am grossly outnumbered with all the testosterone here, and need her estrogen backup, LOL...