Hypochndroplasia limb lengthening 0

We tarted researching limb lengthening quite early on, it was something that we spent years talking and reading about, along with meeting with doctors and connecting with families whose children had it done.

I realize it's not something everyone might choose to discuss or consider with their child. I am very respectful abut everyone's beliefs and convictions and I have never engaged or will engage in a discussion abut whether limb lengthening is right or wrong. I respect that it's a personal decision.

The next couple posts will be quite factual about our experience.

I realised quite early on that if we wanted to consider limb lengthening, it would have to be done at a centre of excellence. A place where they do this surgery and treatment all day long, every day. There are 2 centres in the US who have vast expertise for limb lengthening for achondroplasia and hypochndroplasia.

It's a big undertaking, following the surgery when the bone is cut, the fixators are secured, you start to lengthen and can go about 1 mm per day, so to lengthen 5 cm in the femora and tibiae which was our goal would take about 2.5 - 3.5 months. There is no weight bearing during this time, so your child is in a reclining wheelchair with their legs extended in front of them. During this time you have to stay near the hospital to attend the daily physical therapy and regular check ups with the doctor.

This is followed by the consolidation phase which also takes a couple months when you can go home, kids can attend school, things become easier, but you still do therapy every day. After this, the fixator is removed, I am sure you continue PT as well to regain strength and correct gait.

We knew that we wanted to do the first leg surgery as young as possible which was 7.5 for a mature girl which Fi is.

We spent years figuring out the insurance, financials, basically the logistics, taking time off work, what we would do with the other 2 children, etc. I had lists of the lists of things we had to do, have ready etc.