Wednesday, May 15, 2013

Day 75- The Home Stretch

Monday- 5/13/13

We are in the final week of phase 1... hopefully!

What does that mean???

We are done lengthening Friday according to our original schedule. We have an appt with Dr. Paley on Friday to determine if Em has reached 50mm or 5cm or 2 inches (all being 1 in the same). If X-rays confirm we have reached our goal and the position of the leg and foot are where they need to be, we will get the green light to go home. If not, we remain for an additional week or possibly 2. Regardless, whenever we return home, Em will do so with her Super Brace, continue therapy and work on healing the new bone, which is set as a two month process. We will get X-ray's taken each month and send them to Dr. Paley in which he will determine when we return to have the Super Brace removed (Ending Phase 2). That is an outpatient procedure which results in the Super Brace being replaced with a cast for a month. The cast is necessary to heal the bone from where the pins and screws are removed. We are anticipating Em being Super Brace and cast free in time for the start of her first school year in Sept. PT will continue after her cast is removed until she gains full strength and flexibility (Ending Phase 3). Both of Emma's legs will be the same length at that time. Her right leg will continue to grow but at a slower rate than her left (just as prior to surgery) and she will slowly lose another 2 inches in length on her right side. Em will have a couple options when she is around 10 years old on how she would like to correct that difference. At this time, we see it being leg lengthening again with a new procedure in which Dr. Paley has developed by means of magnets which is not yet approved in pediatrics. The other option would be slowing the growth plates in her left leg to match that of her right, essentially making her 2 inches shorter than she would be. This is a minimally invasive surgery which is definitely what I would prefer- however, with her predicted height being 5' 2" (FYI- mom's 5' 3" which is a stretch), everyone is telling me she'll opt for lengthening to get to that predicted 5' 2" height as opposed to being 5'. I will be sure she spends a lot of time around Auntie Ally over the next 6 or 7 years so she knows just how perfect 5" is!!!

2 comments:

  1. Eric, hoping tomorrow brings good news and you can head back home, I'm sure there have been good things and not so good about your stay in Florida. I have loved following the blog as it let me intrude on your family and get to know Amanda and the girls a little. I was so sorry to miss the golf tournament, not that anyone would have been impressed with my play, but I would have loved to be able to give you a hug and tell you how proud I am of you. Lots of love, Auntie Pat

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  2. Eric...so glad for Emma and your Family that this phase is about over...and you can go back home. BUT...your Mom will miss Everyone so much, I am sure She has enjoyed spending so much time with You All...and..She will be lost without you there. At the same time..I know she is Happy that all is well for now. Please give her a HUG for me and tell her I am thinking of her. I have enjoyed being able to follow Emma's Journey as it has unfolded. I wish for Continued Success as The Journey continues. Thank You Carol Frazier

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