As our family was enjoying a long overdue holiday to Australia, we were coming to terms with Daniel facing another major hip surgery and 3 to 4 months in an external fixator.
Daniel had a CT scan under general anaesthetic in November (our 5th general of 2010!). Dr Paley, Daniel's surgeon in the US, reviewed the results and thinks that Daniel's hip has fused. The good news is that the fused section is probably cartilage, which means it can be removed and may not grow back like bone would which would give him limited mobility. However, it means another surgery and another fixator.
So begins the funding process again for the fourth time. This is a stressful process for Shane and I but the worst thing is thinking of Daniel in a fixator again. He coped with amazingly last time but the impact was really evident when we saw how much more confidence he had after he had the fixator removed. Daniel also loves his daily bath now, something he can't do in his fixator. No trips to the beach because sand is not friendly to pin sites. No wrestling with his friends because of the fear of knocking his friends with the fixator or hurting a pin site. I hope has the confidence to keep up his scootering he loves so much. I hope he has the confidence to play with the other children at nursery and not withdraw into himself like he did last time. Oh, and the dreaded daily pin site cleaning...
It is difficult to put him through this all again but we trust in Dr Paley's vision and if 3 months of wearing a fixator is what it takes for a lifetime of having a normal working hip then it is well worth it. Our 12 year old PFFD friend, Michael, said he would have jumped at the chance of having his hip unfused when he was younger. Those words give me more confidence in our decision to go ahead than anything. Thanks Michael and Ginette!
I have no idea when to tell him that he has to have the fixator on again. There is no point telling him early so he worries but then I don't want him to not trust us with telling him what is going on.
Anyway, I have to do what a 3 year old does and not worry about the future and take each day as it comes. We all got through it once, and we can do it again. And hopefully, it will mean an even better outcome for Daniel for the future.
We are not sure of the surgery date yet. Dr Paley met with our UK consultant at the end of January at a conference in the UK. We are hoping to have all the paperwork together and have the application submitted for the March 8th NHS panel meeting. If they approve it then, we can organise book the surgery and travel arrangements straight away. We will keep you posted...
Since we last updated you, Daniel has a new prosthetic leg. When we were in Florida last time, we met with the prosthetist that Dr Paley uses and he gave us some pictures of a prosthetic design which has a hinge at the ankle. We showed the designs to the NHS prosthetist who was able to replicate it. This new prosthetic gives Daniel a lot more movement in his ankle and should build up his calf muscle.
On the bright side, Daniel is loving life in London. Every morning he is full of energy and smiles as he boards his little blue scooter wearing his Fireman Sam helmet and rides off to nursery. He loves going to nursery and socialising with all his friends. His hip and leg does not seem to hold him back. Occasionally he says to me, "Mummy, I have one long leg and one short leg. I'm special". His little brother Max looks up to him and wants to copy everything Daniel does including having turns of wearing the prosthetic!
Here are some recent photos of Daniel enjoying the Christmas snow in the UK and the sunshine in Australia.
Posted By Kristen (Daniel's Mum)P.S - Apologies to anyone who received a spam email from me earlier this month. It was not me! I have closed that email account so if you receive anything else from that account, please report it as spam.
