I haven’t written for the last couple of weeks because once again my world has been turned upside down. We got the results back from the recent round of testing that Ashley underwent (see what’s in a walk). The results not only took me by surprise but her medical team also.
We had been expecting that Ashley would need surgery soon but all of us thought it would be soft-tissue, muscles and tendons. However we have now found out that she needs multi-level surgery ASAP if she is going to be able to continue to walk.
Multi- level surgery involves procedures on the bones as well as the soft tissues. It’s a lot more involved and the recovery and rehabilitation needed will be a lot more extensive. In simple terms they will break her legs, the right one in multiple places, and cut the muscles and tendons to extend them and release some of the spasticity.
As an added complication there is a suspicion that she has underlying dystonia (a condition where the limb moves uncontrollably) that is only being held in check by the strength of the spasticity (tightness of the muscles). There is no way we can confirm this. It means that when the surgery is done they need to be careful exactly how much spasticity they release. Too little and her thigh bones will twist and deform and she will lose the use of her hips, knee and ankle. Too much and she will be left with a limb that moves uncontrollably leaving her dependent on a wheelchair – no longer able to walk.
I have struggled so much with this and went into a profound grieving for a couple of weeks. We did therapy 6 days a week for 4 years so that Ash would be able to walk in the first place. To face her losing her mobility is heartbreaking.
The leading surgeon in Australia is based in Melbourne, the opposite side of the country to where we live. Naturally we want the most experienced surgeon as we only have one chance at getting this right and anything they do will be permanent and irreversible.
Because we are electing to travel interstate we are not covered by the government for any costs involved. We have to move our family to Melbourne for 1 month and then we face 12 months of intensive rehabilitation so that she can learn to walk again.
A local radio station heard our story and is kindly helping us to fundraise as we need in the region of $50,000. The response from listeners has been overwhelming so fingers crossed we can make this happen. Our only other option would be to sell our house.
The outpouring of kindness and support from people who don’t even know our family has been so touching. Ashley and I have both shed some tears over it. I will keep you all posted how we get on and how my little girl is going.