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May 12-18

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It has been alittle over two years since Marie’s last limb lengthening.  She has been doing beautifully.  Although she loves her little leg because it’s so cute, she said she’s ready for a smaller shoe.  Her discrepancy in limbs is now about 9cm, so her shoe lift is quite heavy for her.  During this last year, Dr. Paley has worked miraculously to create the first internal lengthening plate for the tibia.  It has been very successful in young kids so far.  We were very excited to have this as an option for Marie since she had a rough go with the external fixator the first round.  However, during our last visit with Dr. Paley, he said that unfortunately this procedure would be out of the question for Marie and alittle too risky due to the lack of tissue she has under her skin graft.  She would be more prone to infection with the internal device so she will have another external fixator that will lengthen her left tibia 6cm.  She will have the ex fix on for about 8-9 months.  Along with lengthening her tibia, she will have her ankle completely fused (it will have zero mobility).  Initially we were just going to realign her ankle and put it back in the position it needed to be in, but once he saw her lack of motion in the ankle, he said we will just go ahead and fuse it because it won’t be much of a difference.  This will keep her ankle in the correct position for the rest of her life and helps eliminate pain and discomfort for her 🙌🏻.    Along with lenghtening her tibia and ankle fusion, she will have an 8-plate attached to her inner knee.  This device will slowly correct her valgus or “knocked” knee.  Lastly, Along with lengthening, ankle fusion, and 8-plate on knee, she will have her femur broken and rotate to a straight forward position.  They will attach a small plate to the femur to keep it in line.  This will help her bottom half of her leg not turn out to the side when she walks.  Wow, 4 procedures at once!!! This was a hard pill to swallow as a parent.  We went in to our appointment with only questions about the new internal device because we thought for sure that would be our route.  So we weren’t quite prepared to say the least.  However, we have full trust in our doctors and know that they chose the safest, most effective route for our strong warrior.  She is resilient and will get through it.  Our last experience with an external fixator was a living nightmare (I still have PTSD from it/Marie has no memory of it so that’s awesome).  Dr. Paley has reassured us that our experience will be much different, much smoother, and much easier on everyone.  He even told Marie to pack lots of swim suits because she is DEFINITELY going to the beach this time.  She was so excited! Although she doesn’t quite understand what will happen, she is so optimistic.  We are confident she will bounce back from this quickly and not miss a beat.  Please keep Marie and our family in your prayers as we prepare her for this journey once again.  

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