On April 15, 2011 (Kilah was 7 months old) we met Dr. Paley for the first time. Paley Advanced Limb Lengthening Instiitute is at St. Mary's Medical Center in West Palm Beach, Florida. After more x-rays, we met Dr. Paley. They use special formulas to project what the Limb Length Discrepancy (LLD) will be when the person is fully grown. Kilah's projected LLD is 5.5 inches. Her Femur (the bone above the knee) makes up about 2/3s of her total LLD and her Tibia and Fibula (the bones below her knee) make up the rest of her LLD. Dr. Paley explained that Kilah would "only" need 2 surgeries. Her projected LLD is actually on the smaller side. So we use the word "only" because many other people undergo several surgeries to Lengthen their limbs. Also, many people with Fibular Hemimelia have hip or foot deformities that come along with the LLD. Kilah is very fortunate that she will only need Limb Lengthening and a minor procedure done on her ankle.
Recently we visited Dr. Paley for a second time on December 5, 2011. At this appointment he laid out a plan for Kilah's surgeries. She will have her first LL surgery at age 3 along with a procedure on her ankle to help the bone grow correctly. She will have her second LL surgery around age 8. At both of these surgeries they will be lengthening each part of her leg the full amount of the projected discrepancy. The first surgery her Tibia will be lengthened and with the second the Femur. Dr. Paley also wrote her a script for her first shoe lift (4cm) and an Articulated AFO. We just went last week to fill the prescriptions. We should be hearing back from them soon. I will update and post pictures once we get them and start using them. It should be interesting. :)
The latest prayer need we have is that Dr. Paley's office doesn't take our insurance. Brandon's company changed insurance providers between our 2 visits. When we went for our second visit we were told they don't take our insurance. Now we have some decisions to make. We are considering changing doctors, and we are working on a new budget that includes putting the maximum amount into Brandon's HSA each year. This condition is so rare (1 in 40,000) that there are very few doctors that do Limb Lengthening. We will have many expenses along the way because no matter what doctor we choose we will be doing a lot traveling. She will need to visit and get measured for a new shoe lift every 6 months, so we will have ongoing traveling expenses. Three months of daily Physical Therapy goes along side the Limb Lengthening process. This is an added expense as most insurance providers don't cover that much PT. Also, we will need long term lodging during this time. In short, there are many expenses involved but we trust and know that God will provide. We would like prayer for wisdom to make good decisions as we journey through this adventure.
Here is a short video for a little more info: