Forgot to post!

Lily was discharged from Dr. Edgar a few months ago (back in August),  She had improved greatly with her physical therapy, so he felt that she did not  have to go through any extended testing to figure out what was going on.  After he spoke with may specialists around the world, they were ready to send her to Mayo to do a lot of testing for hidden tumors.  He felt at this point there was no need for that, because if her issues were all being caused by tumors, she would not have improved with pt as she did.

Dr. Edgar and his colleagues believe that Lily may have what is know as 'arterio-venous malformation of the spine'.  It would not have shown up on her MRI of her spine because it is so small.  This could be the reason that she is having issues with hemiparesis, pes cavus,  back pain, hip pain, and limping.

Dr. McDougal, her pediatric orthopedic surgeon, saw Lily on the same day.  She is still concerned with Lily's foot, but agrees that there is not much to be done at this point except wear the orthotics.  Lily's bunion is still not doing well, but we were able to get to Hangar and have the plastic stretched so that the bunion isn't rubbing against it.  That does help; however, Lily still isn't keep on wearing her orthotics.

We did go to the Heel Store in Green Bay, and Lily was fitted with a great pair of shoes by a podorthist.  These really seem to help her, and she feels like her hips "work together" better.

Lily can't run a mile any more, as it causes too much pain.  She also can't swim laps, even just half the length of the pool as it hurts her hips.  She used to be such a great swimmer.  Her gym class is extremely challenging for her because she likes to do her best, and just isn't able to with this disability.