Picture Gallery - childhood

Below you can see a quick journey of Billy's leg and clubfoot, as it was fixed, and then progressed in both foot changes and leg length discrepancy and how the two factors interacted.

first two pics are post op, next two are a year post op

foot and leg, different angles, 2 years post op

Billy's feet and legs almost three years post surgery

Billy's leg and foot 1/06, a little more than 4.5 years post op

3/06- new brace/shoe lift, and next you can see how his knee and foot no longer line up :(

Latest pics of left foot, summer 07 and new brace

Now, over six years from the original surgery to straighten out Billy's foot, we are starting to have concerns again. The doctor had told us originally that there were fused bones in the outer middle part of Billy's foot after the surgery. He said that these would not grow correctly, and that Billy would probably need corrective surgery on that by preschool age. Due to the muscle imbalances in his foot wanting to pull his foot back into a clubbed position during growth, Billy has needed to keep wearing the AFO - it was originally only supposed to be for the first three months after the surgery, but taking it off resulted in the foot starting to curl again. Because of this, I think it's helped somewhat with the fused bones, at least buying us some time. Now at seven years old, you can see the area where the bones are fused, and that area is causing his foot to bend up there, instead of laying flat. Now, when he stands on that foot, only the outer edge of the foot and the outer front part actually touch the floor most of the time. He doesn't put his heel down, since that hurts his knee, probably from the malformed tendon behind his foot being too tight. The orthotics department changed his brace to add a "heel" so he can have his foot at less than ninety degrees, while still being "flat" for walking, and he is more comfortable now. You can see the added heel above is the darker red color. We did a gait analysis to see if it is time to fix the foot and perhaps the tibial torsion (his lower leg has twisted outward so that the foot and knee no longer are aligned) and/or femoral torsion (hip is connected to spine in an outward position, and leg is already not aligned forward). We are waiting for the results of that still.

Picture of new brace from Aug 2008 with cutdown shoelift

August 2008 update - we saw the ortho last month, and he said that as long as the orthotics department can make a brace to help Billy out, we can hold off surgery for the foot, which is still worsening, but that their ability to brace it would determine when surgery needed to happen. I just picked up the brace yesterday, and it's way different than the previous one. That one only had a 1cm heel lift while this one is closer to 2.5cm. His foot no longer can bend as far at the ankle to get it flat. His heel in the brace is actually OUT of the shoe, but the extra material of the brace allows the shoe to grip it tightly and that doesn't cause any problems, as odd as it is.

I'm not sure if that whole 1.5cm added to the heel is a total change in the foot or if they just wanted extra padding in there for Billy's comfort but the orthotics guy there said this was probably the last brace they could do and next time we'd be looking at surgery to flatten the foot back out. We had wanted to hold it off until we were ready for leg lengthening, but I don't think that's gonna happen. Oh well, we'll just have to see what happens. Billy says the new brace is comfortable, and the good news is that they were able to shave 2cm off of his shoe lift, so now it's only 1.5cm in height and practically unnoticeable compared to his old lift!

Update - 2011

Things have been stable enough with Billy's foot... it has warped a bit more and his leg length discrepancy has grown a bit, but the creative people at the orthotics department have continued to work their miracles and hold off surgery. Our hope is to wait until we do the leg lengthening at around age 13, and straighten the foot out at the same time.

Well, ten years after surgery, and about five years of creative bracing, we've run out of options to try to hold off foot reconstruction surgery. Billy can no longer walk or bear weight comfortably in his brace and shoelift, despite adding height to the brace heel to accomodate the fixed downward angle of his ankle and instep padding to try and cushion his twisted foot. Xrays in the brace from the outside side view almost look like from the top or bottom, since you can see all the long bones in his midfoot due to the foot twisting sideways. He will have major surgery to reconstruct the ankle and foot to make them able to be level on the floor at a nornmal 90 degree angle.

If this is anything like the original surgery at one year old, he'll be off his feet and non-weight bearing for six weeks following surgery then maybe back into a new AFO to try and hold the corrected position? I know they said he'd probably wear some kind of AFO for life just to try and help correct his gait and protect his hip and knee from damage, plus I assume we're still going to have to fight more downward pull on the foot due to muscle imbalance from missing all the muscles on the top of the foot.

Fingers crossed all goes well! It will be interesting, since his leg length discrepancy has also increased again this year (after being quiet for about five years) and we're probably at about the 6cm mark. It's hard to tell since Billy's foot is so flexed but after foot surgery, that will change and we will be back to the full lift being on the sole of the shoe, instead of part of it being in the AFO.

LLD Clinic update - In December 2011, we went to our LLD clinic and the doctor there has decided it's time for us to think about when we want to schedule Billy's leg lengthening surgery. It can be any time in the next year, but we need to decide when it works best for us as a family. He said that he will not lengthen Billy more than 5cm at a time (2") due to his lack of leg muscle, compromised bloodflow and anticipated slow healing, and that he'd rather do two smaller lengthenings to be safe than risk one longer one. After the fiasco with the foot healing last summer, this makes a LOT of sense to me. We opted to do it the week after Christmas, to allow the most intense parts to take place during this last year of middle school, when we have a known team who can work with us to get Billy's accommodations in school rather than have to face the potential of needing to work with an unknown team in the middle school next year.

Childhood pictures - presurgery