Fall-Winter 2006-2007
(September - January)
Fall and winter for Joshua have been (thankfully) uneventful. He continues to be happy and healthy, and does more and more each day.
We saw both Dr. Romness and Dr. Chhabra at UVA in the fall for follow-ups on Joshua's hand and leg/foot.. As far as Joshua's hand goes, Dr. Chhabra is thrilled with the movement and the use that Josh is getting out of it. The range of motion in his fingers (bending, curling, etc.) isn't great, but with the abnormally formed joints, he's doing everything that the doctor would expect of him. As for future surgery to separate his other two fingers, we're kind of in a holding pattern. Joshua's middle metacarpal is shaped funny (it looks like a trapezoid instead of a rectangle on X-ray), and there is concern that if we were to separate the two fingers, the middle one wouldn't function properly because of that malformation, which could potentially necessitate removal of it. So, for now, we're simply waiting and seeing, not rushing into anything, but not ruling out anything either. We go back in 6 months, and will progress from there.
As for Joshua's leg, they actually took a set of X-rays this time around, and looked at the formation of everything. It appears that his knee is formed properly, and that his right leg is simply smaller from the knee down, possibly from the missing toe and the missing musculature that goes with it, and possibly from some of the constraint issues. Dr. Romness says that typically the limb length discrepancies remain proportional (in that, as the child grows, the ratio of the two lengths stays pretty much the same). What that entails for Joshua is that by the time he reaches maturity, the discrepancy would be approximately 8 centimeters (3 inches), which is significant enough to warrant intervention. The process sounds both "simple" and "torturous." At this point, the plan (if all things continue as they are) is to do two separate procedures to lengthen Joshua's right leg. The process involves making 4 small incisions each above and below a point on his leg and inserting steel pins into the bone. The pins are attached to 2 "halo" devices that go around his leg and holds the 4 pins in place. Then, in between the two sets of pins, they actually cut the bone and create a separation - the two halos are attached to each other with a "ratcheting" device, which we would then turn one "click" per day, opening the separation by 1 millimeter per day. The body's healing process would fill in the separation with new bone, thus lengthening his leg by approximately 1 millimeter per day. The first procedure would happen sometime between age 4 and 8 for Joshua, then a second round of the same procedure would take place around age 11-13. Each time, he would be in the device for 30-40 days, gaining 3-4 centimeters each time. Dr. Romness actually showed us the device, and while it looks like a high-tech torture device, from his description, it's actually not that bad. It is significantly less invasive than the hand surgery he had - only 8 tiny (1-2 millimeter) incisions to insert the pins, and I think that the actual cutting of the bone is done with a laser (or at least laparoscopically when through one of the incisions for the pins). I think it's similar to they way they do it when people have bad breaks of their arm or leg and they use screws or pins attached to a metal rod to hold the limb in place after it's set. Dr. Romness says that Josh will be able to walk, run, swim, etc. with the halo device on, so it shouldn't limit his activity significantly. The good thing is that this is a permanent fix, rather than a temporary "appliance" that will help in the short term. The new bone that forms is actually stronger than the original bone, and once it's lengthened, there won't be any long-term restrictions on Joshua, and the only scars will be from the 8 small incisions for the pins. I was very apprehensive at first, but Chris and I talked about the alternative - spending the rest of his life with a lift in his shoe (or a special shoe) raising his right leg the 2-3 inches that it would need to be lifted - wouldn't be fair to Joshua. It would make things difficult for him - having to wear a special shoe, making participation in sports difficult, etc., and we'd rather put him through a couple of months, total, worth of discomfort, than a lifetime of difficulty.
Joshua had a great Christmas - he was just old enough to understand that "Santa Claus" was going to come visit him - he wanted Santa to bring him "new books and new games." He loved all the decorations and the lights involved, loved the Christmas music, but he was a little apprehensive of the actual big guy with the red suit and white beard. Santa was good to him, as were his parents, grandparents, aunt and uncle, and various other friends and family. I really brings a new life to Christmas to have a little one around getting excited about it all.
Joshua was a little out of sorts from Christmas into January. Runny nose, drippy eyes, intermittent fever...we figured out that it was teeth - all four of his 2-year molars came in within a week of each other. Of course, they took several weeks to come in and with all the congestion, he developed a small ear/sinus infection, and had to go through a round of antibiotics. He did fine, though - and made it through his very first "illness." Having made it through 2 and a half years with only one illness, we can't really complain.
That pretty much wraps up the fall and winter - it's so hard to believe that Joshua is going to be 3 this summer! Time really flies! We're looking forward to watching Joshua continue to grow and develop - these next couple of years are going to be a blast!
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