Newest Update!

Hi All.......I haven't posted an update in a little while so I thought I would drop a line.We went to clinic last Monday and Billy is doing so well that we get to graduate to every 2 weeks instead of weekly appts. He has started walking completely independant and was even out scooting around on a skateboard this afternoon. We have achieved 2 cms of length in his femur and have stopped turns on it. We have gain 2.5 cms on his tibia and we are continuing on for another 3.5 cms. Pin site cleanings have calmed down quite a bit and they're not getting yucky or gunky so I've gone to cleaning them every few days instead of everyday.We did have an episode of bleeding from two of his pinsites but we think he bumped it pretty hard on something. He's also completely off pain meds with the exception of every now and then. The only thing we are really struggling with now is his appetite and weight. He's lost over 5 lbs and has completely fallen off of the growth charts for his weight and height to weight ratio, so we're now giving him meds to increase his appetite, working with a nutritionist to see where we can supplement what, adding a calorie additive to his food and milk, and giving him extra vitamins.