We thought it was about time we gave you all an update on how Daniel is going and our current plans for his treatment.
Daniel is doing great with his walking. He is getting pretty fast now with his prosthetic leg and without it. He recently got a new type of prosthetic. Cosmetically, it is not as good as his other prosthetic but if we decide to go ahead with lengthening Daniel's leg, to achieve the best outcome his foot should be kept at a 90 degree angle rather than pointing downwards.
Daniel's hip surgery has been booked for the 14th of October. Dr Dror Paley, Daniel's orthopaedic surgeon in the USA, and the leader in the field will be performing the surgery. Dr Paley has moved from the hospital we visited in Baltimore late last year to establish the Paley Advanced Limb Lengthening Institute at St Mary's Medical Center in West Palm Beach in Florida. Dr Paley has a new website which gives a lot of information about his experience and expertise - www.limblengtheningdoc.org. We will have a pre-operative appointment two days before the surgery and we will need to stay in Florida for a week after Daniel's surgery. He will then be in plaster after the surgery but Daniel's orthopaedic consultant in the UK can remove the plaster and send follow up x-rays to Dr Paley via email.
Before Daniel's surgery, he will need to have an MRI on his hip. Because he is so young, this will need to be done under general anesthetic. Fortunately, Daniel's UK orthopaedic consultant, Mr Peter Calder, can do this at the Royal National Orthopaedic Hospital in London and send the results to Dr Paley.
It is all a bit scary now that Daniel's first surgery is coming up quickly. But both Shane and I feel that we have learnt a lot about Proximal Femoral Focal Deficiency over the last 20 months of Daniel's life and we are confident (and hoping) that we are making the right decision regarding his treatment.
As a side issue, Daniel's baby brother is due at any time (we will post some news when we have some!). I have had regular scans throughout the pregnancy and everything looks fine. There is no evidence to suggest that a second baby would be born with the same condition as it appears that Proximal Femoral Focal Deficiency is a random event that occurs early in pregnancy. Daniel was very small when he was born (2.4kgs or 5lb 5oz) so the regular scans were really to check that his baby brother is growing okay which he is.
Posted By Kristen (Daniel's Mum)
