The lengthening begins......

Today the first lengthening began. We have our program (see photo below) which tells us what we need to do daily. There are 6 struts on the frame and we move these according to Ava's prescription. These open the bone by 1mm per day. We were initially told that the lengthening would achieve 1cm per month, but Ava's program will be quicker than this as she also needs the bone rotated. The procedure will still take 9 - 12 months, but the length will be achieved quicker. The leg will remain in the frame to help it heal and become stronger.

During the 9 months we need to see the consultant fortnightly so he can take x rays and monitor the bone growth and Ava's general progress. They need to ensure the bone is healing and that it doesn't bow (which would cause further complications).

This first lengthening was thankfully pain free. It starts to become more uncomfortable as the bone grows, as the muscles and tendons connected to the leg aren't developing at the same rate which can cause spasms which are quite painful. We'll need to take each day as it comes and where necessary give Ava pain relief beforehand or perform the lengthening twice a day (so the increase in strut changes is more gradual).

I know we only achieved 1mm of growth today, but it makes us feel more positive that this is going to be worth it. The only downside of today was that the consultant is slightly concerned about Ava's foot. Prior to the frame being fitted she wore a splint which kept her foot in place (following her previous operations). As she is now out of the splint the foot is staring to turn inwards again, so we were told that she may need the frame extended so another ring is attached to her foot. Unfortunately this would involve another operation and hospital stay during this process. It's not definite, so we feel we have to forget about this for the time being and cross that bridge if and when we come to it.

1mm down.  Another 5.9cm to go!