Updated Game Plan

Today we saw Dr. Scott. It had been one week since our last appointment and the purpose was to check to see how Mary's knee is doing. Luckily because she has mean parents she passed and can keep lengthening a little longer. The bar that causes so much discomfort was removed a week ago BUT we put it back on every night and after Physical Therapy appointments for a couple of hours to help get the leg as straight as possible so we can continue lengthening. The good news is it worked.

The Physical Therapist said yesterday that he can't get her leg straighter than -15 degrees but that is fine since we are still lengthening. We could be losing ground and we are not. He did mention her hamstrings are getting tighter.

So the game plan is...keep lengthening until Sunday which should be 6 cm., and on Tuesday see Dr. Scott and get an accurate X-ray. If we are at 6 cm. we will take a break from lengthening for a week. We will see him again a week later to see how well her knee is moving and decide if she can continue on or if we are done with the lengthening process. He said you can go about a week before the bone consolidates too much to prevent any more lengthening especially for Mary since her bone is looking so good.

Interesting tidbit is it's hard to get an accurate measurement because her knee is bent; the CT can't provide an accurate measurement as her leg needs to be perpendicular to the CT (no bent knees).

Dr. Scott thinks we will be done with lengthening and get the annoying thigh and foot piece off the last week of July or first week of August. Mary asked if it will hurt and he said some kids do say it hurts because your bone is adapting. She told me after the appointment she is nervous about getting the pieces off. When I asked her what specifically makes her nervous she said everything.

We verified today her last CT's project the difference if we didn't do anything to be 7.5-7.8 cm.. His goal would be to get to 6.5 or 6.8 cm. from the lengthening process. There is concern you could get more than you need and end up being taller on the original short leg.

There is also another procedure we could do if need be where he goes in and stops the "normal" leg from attaining the height it would have on it's own. I will worry about that possibility once we know what we get out of the lengthening.


He gave us a new bar to put under her knee to help keep it straight vs. the current one we put over her knee. It pushes vs. pulls which might be better for her cartilage. My girl that hates change wasn't thrilled about the new bar because it is different than the bar she has been using (even though she truly hates that bar ).  She would prefer something she hates vs. something that is new...


Dr. Scott said her hardware and pin sites look good but he doesn't like how the struts on her thigh push her muscle up.

Mary has been curious how Dr. Scott broke her bone and put the struts and wires in her leg. Now that they are in and she won't have to do it again she was willing to ask how he did it. The answer was: drilled a couple of holes in her bone then hit it to break the bone and he used a power drill to put the struts and wires in. She was grossed out by the information but she was the one who asked...

Grossed out at description of how the pins and wire are put on