Makani's Journey...so far

I wanted to share since i haven't been here since Makani was little.
Makani is now 4yrs old beautiful & happy in life, when she was born she had a short leg soon i found out she had fibular hemimelia & pffd.... she has no fibula had no ligaments in her knee a shallow hip socket & the short femur (about 1 1/2-2in at birth) we live in southern california & started with a dr where she was born (arrowhead regional) later due to insurance we visited loma linda & then shriners along with a consult at adult & childrens orthopedics after many bad bad doctors at shriners i took her back to Dr.rosenfeld in orange & he was mad she needed surgery like a year ago where shriners said when she's 12 we will lengthen..... anyways Makani underwent a hip/pelvic osteotomy & knee replacement march 4th 2011 she is recovered & doing well although she has her days. i will know alot more thursday but from what i know today we start lengthening in the fall she is at 7- 7.5cm lld right now at 4yrs old i'm scared but i believe it is whats best for her although no one seems to know about how to put her in a carseat or if i can or not (she will have the fixator on her femur) If anyone has questions feel free to ask i am going to try to get more active with the pffd forums as i have been wrapped up in the fibular hemimelia groups which i'm sure many of you are familar with if not on anywho thats Makani for now :)