Grace's Update!

Thank you Kevin for allowing me to share what great looks like and for others to enjoy a more professional view from a parents perspective!

"Greetings,

Grace, Mandy and I returned to the Paley Advanced Limb Lengthening Institute today for a fresh set of x-rays and check up on Grace's overall progress. We are very happy to report that Grace has achieved the full expected 50mm of length to her left leg -- ~ 2 inches -- and maybe even a little extra. Dr. Dror Paley, Grace's surgeon, is very pleased with her progress. It was inspiring to see a man who has done literally thousands of these procedures look at Grace's x-ray and leg and literally light up the room with a big smile, saying, "the bone is heeling so well, I couldn't do any more with it even if I wanted to (unless he were to break it again!)." Grace's leg really is as straight as an arrow, and as long as her right leg. It is amazing to see in person. I wish you all could. Grace seems to have hit a growth spurt during all this, so we are hoping she will still be "even" when the brace finally comes off!

So we are finished turning struts. Lengthening and straightening is complete. We are now in the "consolidation" phase [Toast Glenlivet here] , giving the new bone time to fill in and harden. The fixator stays on, and we leave it alone, for 1-2 months. From here, we wait four weeks and then get a fresh set of x-rays. Dr. Paley will read those x-rays and determine if Grace needs one more month of consolidation, or if we can schedule the removal of the external fixator. Removal of the fixator is a quick surgery and we should only be in West Palm for 2-3 days for that. He also said he feels like the plate in her knee has done its job of fixing the bowing-in of her knee and he will likely remove that plate at the same time. We forgot to ask about the plate in her ankle, but maybe that will be ready to come out as well? We have started preparing Grace for the idea of having the fixator off. She likely doesn't remember it ever not being on her leg. We are told that many of the kids Grace's age get very offended when you tell them the fixator is coming off. They see it as a part of their body and get very confused as to why you would take it away. Can you imagine?

During the surgery to remove the fixator (mid-June), x-rays will be taken and a determination will be made on the spot as to what kind of cast Grace will go into for the final four weeks (weight bearing or non-weight bearing, based on how her overall bone strength looks). The cast is necessary not to protect the new bone growth, which will be fully hardened (consolidated) by then, but to protect the open holes left in her bones from the rods and pins being removed. Her tibia and ankle will look like swiss cheese after the fixator is taken off, and now those holes need time to fill back in. The cast comes off after roughly four weeks, and then we are finished. Not bad for six months of hard work!

Public Service Announcement: The alternative to limb lengthening is amputation. There is no other option besides these two. Many doctors in our country, having been fully educated on the option of limb lengthening, will decide on their own that the procedure(s) is "too much emotional strain" on the patient and the family and will simply recommend amputation, willfully withholding education about the limb lengthening alternative. We find this to be gross negligence on the part of practicing physicians. If you ever hear of someone in our situation (1:70,000), please speak up and make sure they have been offered the opportunity to lengthen before they agree to amputate an otherwise beautiful, healthy, sweet little leg.

I have attached a .ppt of Grace's leg immediately after surgery, and what it looks like today. There are three (of 14) primary posts. One at the north end (#1) and two and the south end (#2, #3). Look at the difference between #1 and #2 and you will see how much Grace's leg has grown since surgery on 8 January - 14 weeks. Truly miraculous. Truly our Amazing Grace.

Thank you all so much for all your prayers and encouragement throughout this process. You have each strengthened Mandy and me and helped us be strong enough to help Grace. We are eternally grateful.


Best,

Kevin, Mandy and Grace"