Julian is almost four

and is a busy boy. Nothing seems to deter him until his mommy tells him no. We saw Dr. Michael Schmitz last in December. We are still in the "wait and see" mode. Dr. Schmitz had decided that he doesn't want to do anything while Julian is still able to move about and function without any issues.  He tells us that he wishes more people could see Julian and the way that he is because he seems to be a unique case. We are told that if you just look at his x-rays that you would assume that he isn't walking and wouldn't be able to walk considering that he really doesn't have ankles or knees, not like we have anyways.  But then you look out into the hallway and there he is running up and down it trying to chase his little sister, who doesn't have any issues. We were told that Julian would be a good candidate for leg lengthening in his future. What would happen to Julian is that they would lengthen one leg and stop the growth on the other to be able to match them to be equal lengths. But what happens below his knees is still up in the air. He won't be able to wear a shoe lift for the rest of his life because of the difference in the lengths below his knees. A shoe lift wouldn't be stable. We have found however that when Julian walks long distances with or without his shoes and braces that his back starts to hurt.  We constantly have his shoes on until his feet get sore with his braces. I am so grateful for our physical therapist, Colleen O'Berry, and our orthotic guy, Ed Barber. They are awesome.

I just wanted to give an update. I know that we are coming soon to decisions that we as his parents will have to make in his best interest. That is going to be a hard time because we don't know what his best interests would be as a young man. We have to think of now and in the future. How will our decision affect him now and in the future. Such a responsibility.

So we will see what happens. We don't go back until August of 2010 to see Dr. Schmitz again.


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