I have decided to write a blog about Ava's leg lengthening procedure. There are a few reasons for this. Firstly because this is probably going to be one of the hardest things she ever has to go through in her life ( she's only just 6!) but I know she'll be brave. Secondly because I hope this blog is able to help another parent or child who will have to go through lengthening, and thirdly as I feel that it will be cathartic to write down what Ava and our family go through during this time so we can look back when hopefully the condition of Ava's leg and foot have improved.
To give you some background, Ava was born with various congenital deformities to her right leg and foot. These include talipes, an absence of foot bones, tibial torsion and fibula hemimelia. Ava has had numerous surgeries on her foot, but this will be the first on her leg. Her leg length difference is currently at 6 cm but is predicted to be between 10 - 12 cm once fully grown. This is the first of 2 lengthenings to try and reduce the difference.
We have been provided with information on the lengthening procedure by the hospital. We know that it's gruelling, but that it does have a high success rate. The whole process will take between 9 - 12 months and we hope to achieve growth of about 5 cm, which would reduce the difference to 1 cm ( fingers crossed!). During this time Ava will be non weight bearing so will have to move around in a wheelchair and hopefully (if she can manage) a small zimmerframe. As Ava will need help going to the toilet, dressing, getting in and out of bed and moving I have taken a sabbatical from work to care for her. She is unlikely to attend full time education during this time, so her school have arranged for a few hours of home schooling each week.
Ava has received some counselling from the hospital to help her prepare for lengthening and she has met several children who are currently undergoing the procedure and have frames fitted. We have also been trying to prepare her as much as possible by showing images of the frame that will be fitted to her leg and encouraging her to help buy equipment/items that she'll use during the time. She has picked out a pink beanbag to keep her leg elevated in the car and some cushions for her bed (again for elevation at night).
As Ava will be unable to wear her usual clothes during the process as they will not fit over the frame, we are having some track suits and underwear altered. The guy in the dry cleaners thought I was mad as I explained that I needed him to put buttons down one side of her knickers and Velcro down one side of the track suit bottoms. Anyway lets hope it all works out.
I'm signing off now as I feel we are as prepared as we're ever going to be for this. We are all incredibly nervous about the surgery itself ( 6 hours) and then the whole lengthening process that follows. But it has to be done and I'm sure Ava will be in a much better place afterwards.
Nicole x
