Expectations

As of March 24, 2012, we are just beginning this process. This is what I have been told to expect...

• In May, my daughter will have an approximately 3 hours surgery where the doctor cuts her bone and attaches an "external fixator" from her thigh down onto her foot. She will be in the hospital for approximately 3-4 days.
• As the bone naturally tries to grow back together we use the external fixator to separate the bone, 1 mm. a day for 50-70 days straight depending on how it is going. It takes 10 days to get 1 cm. of length. It is "easy" to get 5 cm. and I am hoping we can get closer to 7 cm. than 5 cm. The more even her legs are the more comfortable she will be down the road.
• She will be in a wheelchair during the lengthening process.
• Once we are done lengthening, she will have a less extensive surgery to remove the external fixator above her knee and on her foot, just leaving the external fixator on her lower leg while the bone consolidates. This takes double the time it took to lengthen. For example, if we lengthening 5 cm (50 days), then it consolidates for 100 days for a total of 150 days. If we length 7 cm., (70 days) then it consolidates for 140 days.
• After the lengthening is over she will need to use the leg. She will have a walker and at times still use the wheelchair. Eventually, it looks like kids get back to doing anything they did before- they just have something on their leg. I found some great pictures to show my daughter.
• She should have the 3rd surgery, where they remove the whole external fixator anytime from October to December. Of course it is not an exact science and there are many variables. I have heard sometimes you have to back off the lengthening.
• She will use crutches the first couple of weeks after she gets the whole thing off.
• The process requires many visits to the doctor, x-rays to check on the lengthening and consolidating, and physical therapy.
• The pin sites from the external fixator require daily cleanings. There is high risk of infection so antibiotics may be required during the process.
• I am still looking into the best way to clean the pin sites.
• There will be scars from the pin sites.

It will be interesting to compare the reality with my expectations...

Purpose of the Blog

My intent of creating this blog:

• is to share all of the information I have gathered from other mom's and kids about a Fibular Hemimelia Leg Lengthening Procedure,
• and to share the information I have and will learn from the process.

I am a planner and was surprised how hard it was to get basic information on the process and things to do to prepare for the process. I have learned we certainly can't control much but my goal is to take care of the things I can so that I can be ready for the things I can't and to share what I learn to help other families.