When Nicholas was diagnosed with FH we had to make a life altering choice for him. To have his leg amputated or to have it lengthened and reconstructed. It was very hard to find information on limb lengthening. I am created this blog in order to give hope and information to new parents.
Nicholas is in an external fixator for the third time. The first time was at 18 months old and he was in it for 5 months. The second was at five years old and was for 7 monthHis the current surgery started January 4th. Nick’s leg has grown over 16cm through lengthening but he’ll need probably about 8 more centimeters if we don’t shorten him. That sounds kind of silly but the shortening is a very simple surgery compared to lengthening and Nicholas is expected to be very tall.
Having a fixator on has never completely slowed him down. Though he’s not quite as active as he was during past lengthenings. This time his ankle was worked on, his tibia was straightened and there’s the straight lengthening! It’s three surgeries in one!
Bi-weekly trips to The International Center for Limb Lengthening in Baltimore for x-rays have always been exciting days. Years worth of them by now! Dr. Standard makes the magic happen but he also has an amazing team. We cant imagine taking our boy anywhere else! Nicholas currently loves the sushi in the cafeteria most of all. I love the reassuring xrays and words from Dr.Standard and connecting with other ICLL families! We’ve met the most amazing people in the play room of the waiting area!
When Nicholas was born I wondered if he would be able to walk and what limitations fibular hemimelia would create for him. So far he has no limitations (when not in a fixator and thankfully most of his life is fixator free!).
I cant say it is all easy for Nicholas and in my heart I do wish he did not have to go though this but watching him grow and thrive has been the joy of my life. We did not make a choice that we could live with. We made a choice that we could celebrate. Every day I am proud of him for his amazing strength, compassion and zest for life. Every day I am grateful to Dr. Standard, the ICLL staff and our friends and family for making it all possible! It takes a village to lengthen and reconstruct a leg!
