Hi everyone.
Just a quick update as to what's happening with our little
boy Matteo.
We saw Dr Brown at BC Children's Hospital in Vancouver last week and
also spoke with several children/families that are going thru leg lengthening procedures. That's one of the options that we had on our plate prior to the appointment. The other was amputation of both feet (Symes?). With the amount of time that is required for the leg lengthening, and still not be able to use his feet due to his ankles being fused, Matteo would lose most of his childhood being in a "Lizzy" frame. Basically he would need 4 operations per leg. Something we as parents don't want him to have-- (mostly because his feet would still be non-weight bearing.)
We are 99.9% sure of amputation .... this won't happen till he is about 8-9 months old. We just get to enjoy him for now!
We were very impressed with the people we met and the honesty they
spoke with about their process. I tip my hat to all of you who are going through this process.
Any ideas? comments? or just anything we've overlooked?
Please let me know.
thanks
gino/katherine/isabella and matteo.
Comments
Best of Luck
Even though his ankles are fused - does that mean his feet in the future cannot be weight bearing?
You might want to ask about the possibility of bone-spurs developing as Matteo grows.
There is a good article about Symes amputation at http://podiatry.curtin.edu.au/encyclopedia/symes/
(WARNING: there are some drawings of surgical steps that are very detailed.)
You can find a list of other PFFD'ers with Symes at http://www.pffd.org/profile/pffd_treatment/Symes/Knee%20fusion/AK%20prosthesis
Good Luck!