Daniel's Hip Surgery

Today we found out that Daniel will be having his hip reconstruction surgery in the USA on 11 January. The procedure is called the SUPERhip procedure. SUPER actually stands for Systematic Utilitarian Procedure for Extremity Reconstruction.

Shane and I submitted an application to the National Health Service (NHS) in the UK for Dr Dror Paley from the USA to perform the procedure. Dr Paley is the world leader in limb reconstruction has performed over 150 of these surgeries. The NHS agreed that the best outcome is for Daniel to have the surgery in the US and has agreed to fund it.

The surgery will take place at St Mary's Hospital in West Palm Beach in Florida, USA. Daniel will be in hospital for 3 days and we will be able to fly home to the UK about 2 weeks after the surgery.

Daniel will be in an external fixator for about 3 months followed by a plaster cast and physical therapy.

We have mixed emotions at the moment. On one hand we are ecstatic that Daniel's hip will be operated on by the world's best but on the other hand we have all the fears expected when your little boy has to undergo significant surgery. But, we have Christmas coming up and we are going to make sure Daniel and his little brother Max have a fantastic Christmas.

We will keep you up to date on Daniel's surgery and recovery next month.

In the meantime, we thank you for your support in 2009 and wish you all a Merry Christmas and Happy New Year.

Posted By Kristen (Daniel's Mum)

Thank You from Daniel's Favourite Charity

Daniel's favourite charity is STEPS which is a UK based charity supporting children and adults with lower limb conditions.

We wanted to post on Daniel's blog to say thanks to two of our friends who have rallied their workmates to donate to STEPS.

Our friend, Fiona, organised a Christmas raffle at the her workplace, Sackers and Partners, which raised £350 for STEPS.

Our friend, Sally, set up a swear jar at her workplace (and Kristen's former workplace), Westfield, which raised £50 for STEPS. Keep up the swearing guys!

Thank you from Daniel and STEPS!!

P.S. - Daniel's hip surgery in the US has been postponed until after Christmas. We will post on his blog all about it when we have all the information.

P.P.S. - By request from Steph, here is a favourite video of Daniel.

Posted By Kristen (Daniel's Mum)

Daniel's MRI (and first General Anaesthetic)

On Friday 17th July, Daniel had his first Magnetic Resonance Imaging ('MRI') performed on his hip and femur. It was also his first general anaesthetic. General anaesthetics are used for children because they find it too difficult to stay still for a long period of time and it can also be quite distressing.

The report will be sent to Daniel's doctor, Dr Paley, in the US enabling Dr Paley to get a better understanding of Daniel's condition before the surgery is performed in October.

We had to be at the hospital at 7am and Daniel was nil by mouth since midnight. We were worried how he would cope without his four weetbix in the morning but the excitement of going in a car to the hospital (a novelty for central Londoners without a car) overtook his hunger.

When we arrived at the children's ward at Royal National Orthopaedic Hospital, Daniel had some routine checks done (e.g. temperature, oxygen levels) which took a lot of convincing and distraction methods.

We were seen by the anaesthetist who explained the procedure and gave Daniel a pre-med which would help him relax and not remember having the general anaesthetic. We then walked to the scanning centre and Shane took Daniel in to have to the general anaesthetic while I waited in the waiting room with Max.

Shane said that a mask with a balloon attached was placed over Daniel's mouth and he was asked to blow up the balloon. He was not too keen on that until Daddy had a go and then he wanted a turn. It took about half a minute of breathing in the gas for Daniel to go asleep.

We all nervously waited in the waiting room. Shane found it more difficult because he had had to hand a limp Daniel over to a large room of people but the last I saw of Daniel was finding everything funny as a result of his pre-med. Max, of course, slept through the whole event.

After about 45 minutes, Daniel was awake and Shane went in to see him. He was having a full blown tantrum! This did not stop until we got back to the ward and he was given some toast and juice. He ate four pieces of toast and drank three cups of juice!

We had to stay around for four hours to make sure their were no complications with the general anaesthetic. Daniel got a car transporter as a present for being a brave boy and played with that for the entire time so he was not bothered. Shane, Max and Dorothy caught up on some sleep after an early start!

Here is one of the many images obtained during the MRI just so you know what it looks like.



We have included a video below to show Daniel walking without his prosthetic. He doesn't let his condition bother him at all, he just gets on with it! In fact, lately he has not wanted to always wear it because he can walk so well without it.



Posted By Kristen (Daniel's Mum)

Daniel's New Baby Brother!

Daniel's baby brother, Max Christopher arrived on Saturday, 9th May at 6:49pm at the St Mary's Birth Centre in London weighing 3.55kg.

Max is a very chilled out baby and still spends most of the time sleeping even with a very active toddler making a lot of noise around him!

Daniel is being a great big brother to Max, giving him baby toys, rubbing moisturiser into his feet and giving him kisses. Daniel starts to cry whenever Max cries but we explain to him that babies can't speak yet so they cry whenever they want something.

If Daniel could write this blog entry, he would probably say that the best things about getting a new baby brother are the Dorothy the Dinosaur that Max gave him as a present (note our first family photo includes Dorothy!) and having Gran and Grandpa over from Australia entertaining him.

Daniel has been having a great time...

swimming with Dad...

going to the Science Museum and London Zoo with Gran and Grandpa...

playing at the various playgrounds around London...


going for early morning strolls through a deserted Hyde Park
with Dad & Max (that's Daniel in the distance)...

feeding the ducks at Hyde Park...

eating at fancy restaurants...

and going for walks with Grandpa...

to buy ice-cream!

Who thought getting a new baby brother would be so tiring?!!!
(note that Dorothy never leaves his side).

Posted By Kristen (Daniel's Mum)

Daniel's Surgery & New Prosthetic Leg

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)

Daniel is Walking!