Goodbye Fixator!

We are very happy to announce that the fixator has been removed! Daniel had surgery on the 13th September. It was so quick that Dr Paley came out of surgery before Shane got back from the hospital cafe to get Max some milk.

We were quite stressed before the surgery because Daniel came down with a cough again meaning he might not be able to have the surgery. He has had three coughs this year, each one starting just before he is due for surgery - unbelievable!! Max also got a high fever a couple of days before the surgery so we were hoping that it was the virus Daniel already had, not a new one. After all the frustrations we had been through to get this fixator taken off, we did not want a cough to postpone surgery meaning we would be back on a plane to London. Anyway, the cough cleared up and thankfully the surgery went ahead!

When we went to meet Daniel in recovery after his operation, he was not very happy at all and cried that he wanted his fixator back on. He has had it so long he probably felt like a big part of him was missing. But once he had fully recovered and we took him home that afternoon, he was up and walking straight away. Since he has had it removed he has been a lot happier, has a lot more energy and no longer has any pain. He is walking and running everywhere and not asking us to carry him or to go in the stroller. He has also seems more fearless. He has started using his scooter, riding to and from nursery. He has also started wrestling Max a lot more, not afraid of hurting him with the fixator. The staff at his nursery have also commented how much happier he is and how he is playing with the other kids a lot more. Whilst we are delighted that Daniel is so much happier and confident without his fixator, it makes us a bit sad that although he appeared to be coping well, there was another level of happiness and confidence that Daniel was missing out on for the last 7 months.

Daniel had his first bath last Sunday and he was in there so long his hands went all wrinkly which freaked him out a bit! He loves it though and most days has a bath twice a day.

First bath in 8 months!

Daniel has to wear a hip brace for 6 weeks but he is coping with that pretty well given what he has had to cope with in the past. Daniel started his physiotherapy today in London. He will have to have 3 sessions per week. It basically involved playing with toys while the physio moved his leg around. She is bringing in a Nintendo Wii in for him to play with on Wednesday. I never remember trips to the physio being this much fun!

Daniel's brace - it was the smallest size that they make so it is a big big but it does the job.

We had a quite informative appointment with Dr Paley on the Friday we flew back to London. Not great news but with the excitement of having the fixator off, our mood could not be brought down. It looks like Daniel's hip has fused which was a risk when we started on this journey. Dr Paley said that because it has fused when he is so young he can adapt to it by using his knee joint and lower back to walk and he shouldn't have any back problems because of it. Dr Paley may be able to defuse it but it depends whether it is hard bone or cartilage. The worse case scenario, if it is hard bone, then he can have a standard hip replacement when he is fully grown.

The second issue is that Daniel also has a condition called Fibular Hemimelia which affects the lower part of his leg. The bones in his lower leg are slightly narrower and also his lower leg rotates inwards which causes his foot to point inwards. This is not a big concern and his prosthetic leg is giving him the stability he needs.

Dr Paley said that Daniel could start limb lengthening when he is 6 years old, in 3 years time which will give him (and us) a break from the fixator. Daniel has to have a CAT scan in 6 months time and we will need see Dr Paley in about 9 months time for a follow up. Dr Paley may also perform another surgery on Daniel's hip in 12 months time to remove the internal hardware and attempt to defuse his hip.

On a final note....it was our third trip to Palm Beach, Florida in the last 8 months. It is starting to feel like our second home but with the sunshine, the friendly people, the great shopping and all the kid-friendly things to do, we are happy to call it our second home!

Playing in the fountains each morning after breakfast

Who needs Disney World when you are 1 and 3 years old?
A trip in the car trolley and choosing a helium balloon each at Publix is just as exciting!

Our mandatory trip to the Turtle hospital.

Typical afternoon in Florida. A daily afternoon nap in the stroller.

Great shopping time for their Mum!

Here is a video of Daniel on the scooter. He started walking with his feet either side on Tuesday and by Wednesday afternoon was riding it so confidently and fast. We are so proud of him!



Posted By Kristen (Daniel's Mum)

What a week!

Monday

My parents arrived from Australia for the week which sent Daniel and Max into a whirlwind of excitement. No time for recovering from jet lag with the Rigby boys around.

Tuesday

Shane and I had our first appointment with a family therapist. Daniel is starting to notice that he is different from the other kids and also that there are some things he can't do physically. We thought it would be a good idea to see a psychologist to come up with strategies for how we can best help Daniel with this and also coping with all the hospital visits. We didn't bring Daniel with us for the first session so a large part of the session was about us and how we coped at the beginning and how we are coping now. It was hard work, I spent most of the session with a big lump in my throat. It was really worth it though and was something I should have probably done 3 years ago.

In the afternoon, I got a call from Daniel's nursery to say that I should pick him up because his leg was really sore. When I got there, he was really sad and couldn't walk on his leg. It is difficult to get a 3 year old to describe the pain and his pin sites seemed pretty good so I took him up to Accident & Emergency to get an x-ray. Daniel is such a pro at these now. He laid on the x-ray table playing games on my iPhone, only looking up to say cheese when they took the x-ray. The x-ray didn't show anything sinister which was a relief. He probably strained it. We also sent the x-ray to Dr Paley's PA, John, who said it was all okay.

Wednesday

We heard back from the NHS and they have agreed to fund us to go back to Florida to have Dr Paley remove Daniel's fixator. Yay!! So we are all booked to have the fixator removed on the 13th September. No celebrating yet though until Dr Paley actually comes out of the operating room and tells us that the fixator is off!! But it is a big relief to have the funding come through. I can't believe it has been a year tomorrow that we submitted the first funding application.

Thursday

Today was Daniel's 3rd Birthday!! He was still a bit sore but having a birthday was a great distraction. It was very much a Toy Story themed birthday - he added Slinky Dog, Woody, Jessie and Bullseye to his collection. He went back to nursery with instructions to take it easy. Yeah, right! He had a little party at nursery with a Paddington Bear cake and Toy Story party bags for all the kids. After nursery, he came home for a second round of presents and another birthday cake. He was very excited and full of sugar so it took a while to get him to bed!

Friday

Today we had to take our little Max for his first (and last we hope!) surgery at Great Ormond Street Hospital. Max had to have a small birthmark removed which was minor surgery but he had to have it done under general anesthetic. It is never easy, but Shane and I are coping better with these now. The surgery went well. Max was pretty grumpy for a while afterwards, his throat was pretty sore. We gave him a Buzz Lightyear as present for being a brave boy which brightened him up. Daniel has one but Daniel doesn't let Max near it. Max was back to being his cheeky self pretty soon after. Now we just have a week of making sure he doesn't knock the wound site. Talk about an impossible task!

Saturday

So the knot I had in my stomach this week was gone, the crazy week was over. So I thought.... We woke up to an email from Dr Paley to say that there was a thin line on Daniel's x-ray which he didn't know what it meant and he will need to examine under anesthetic. Thin line!!??? The knot in my stomach was back. Trying hard to not think the worst. Does this mean the bone hasn't healed? I sent an email back to Dr Paley for more information.

Sunday

This morning I received an email from Dr Paley to say that the thin line may mean it has not healed but it may not matter because it is stable. Not sure what this means in layman's speak but he also said that he is happy with the way it looks. I am feeling a bit better now. Now we just have the wait until 13 September to find out. For those that know me well, waiting is not one of my strong points!

My parents left the UK today. After the stress of this week combined with Daniel's trip in the ambulance through the countryside after a febrile convulsion last time they visited, I am not sure if their nerves could survive another visit with us!

The roller-coaster week is over and thankfully it was a long weekend this weekend to recover! Then next week we are off to Florida for some more rides on the roller-coaster of life!

Posted By Kristen (Daniel's Mum)

A video of the boys walking in the park while Mummy has a sleep in. Walk carefully boys....please! Daniel, don't strain your leg and Max, don't fall over and knock your wound site! I know, I know - I am a Mum of two boys, I can't wrap them up in cotton wool all their lives but seriously, there is only so much I can handle in a week! :-)

Still waiting...

I was waiting until we had a date for Daniel to have his fixator removed to post my next blog entry but that date never seems to come so I thought it was worth an update.

The fantastic news is that on the 10 July we found out Daniel can have his fixator off! Originally, his fixator was going to be removed in the UK. However, Daniel's surgeon, Dr Paley (check out his new website - www.paleyinstitute.org) has decided that because it turned out to be such a complicated procedure, he has recommended that we return to Florida to have it removed. Dr Paley also wants to perform an arthrogram (inject dye into his hip) to ensure that it has healed properly and also plan for rehabilitation. Our surgeon in the UK supports this recommendation and has supported another application to the NHS for funding.

Unfortunately, the funding process is taking longer than we hoped. I won't go into it too much as the NHS has been very supportive with their funding so far but we are hoping they speed up their decision making process so our little boy can have his fixator off!

Daniel occasionally knocks people with his fixator. Max has copped quite a few knocks. This morning when he accidentally knocked me with his fixator he said, "Sorry Mummy, when I get my fixator off, I won't hurt anyone anymore." We forget most of the time that he has a fixator because he has had it for so long and deals with it so well but when I hear him say something like that it makes me sad that he has to go through all this.

In the meantime, here are some photos of the last couple of months....

Our friends Seamus and Yo's wedding in Canada

Chicken pox in a fixator! How many 2 year olds have experienced that?

Enjoying summer in London with Buzz Lightyear

Losing football teams but winning smiles

Wrestling with little bro...which apparently is a lot of fun!

Posted By: Kristen (Daniel's Mum)

Getting there...

Today we emailed a new x-ray of Daniel's hip to Dr Paley in the US to see whether Daniel's hip is healing so we can get the external fixator removed.

Recap: Daniel had Superhip 2 surgery in the USA in January this year but a section of his newly reconstructed hip did not heal properly so we had to go back to the USA in May for another procedure to help it heal.

The great news is that it is looking like it is healing which is a big relief. Unfortunately, we have another month to wait at least before we can get the external fixator off. What was estimated to be 3-5 months is looking more like 7 months. It gives us a good idea of what it will be like when he has the first lengthening where he will have to wear the fixator for about the same amount of time.

Daniel is not too bothered though. We don't think he remembers life before the fixator and whenever we talk about taking it off, he says he doesn't want to. It is part of who he is now. His parents will be very happy though - no more daily routine of pin site cleaning, no more trying to squeeze jeans over the fixator, no more consoling Max when he gets whacked in the head by the fixator but most importantly it will mean that Daniel's hip has successfully healed!

We also have another daily task to perform - scar massage. The top part of Daniel's scar came apart when he had his initial surgery so it is quite thick and bothersome. Max is having plastic surgery in August to remove a birthmark (another story...he didn't want to miss out on the whole surgical experience!) and the plastic surgeon advised us to massage Daniel's scar twice a day for 5 minutes with Vitamin E oil and then apply a special scar cream (Kelo-cote). We will also have to do this for Max's scar. This is a lot of massage - especially for a 2 year old and 1 year old who don't like to sit still. I am adding up all the time though for payback when I am old!

So back to the hip...we are getting there. Hopefully in a month we can crack open the champagne because the fixator is coming off!

X-Ray taken on 15 April before the 2nd procedure. The circled area shows where it is not healing.
(You will need to double click on the image to view it in a larger size)

X-Ray taken on 12 June showing that the area is healing.

Hanging out with brother Max

Posted by Kristen (Daniel's Mum)

Daniel's Surgery - Follow Up Procedure

Today Daniel had a follow-up procedure performed on his hip by Dr Paley at St Mary's Medical Center in West Palm Beach, Florida. After Daniel's Superhip surgery performed in January this year, there were two joins in the newly reconstructed femoral neck. One has healed really well, that you couldn't even see it on the x-ray but unfortunately the other has not healed, called a non-union.

The second procedure involved implanting some additional protein to help promote healing along with some minor adjustments to the fixator. The procedure was done under magnification so the incision is pretty small. Dr Paley did not have make any major changes to the external fixation so the procedure was pretty quick. Daniel sounded a bit hoarse after the procedure so he was given a respiratory treatment to help reduce inflammation but fortunately we were able to take him home a few hours after the procedure. He was already walking on it this afternoon, and we were trying to encourage him to take it a bit easy.

We have to wait for about six weeks to see whether the procedure was successful and Daniel can have his fixator removed. Fingers crossed, everyone! We can fly home to London next week. Meanwhile, we are going to enjoy some much needed rest and relaxation in the Florida sunshine and Max's first birthday on Sunday.

We are very fortunate to be staying at our friend Hayley's apartment on the beach, who we met when we were here last time. Thanks so much Hayley! A much more positive environment to recover than the hotel overlooking the I-95 highway!

A big thanks to our incredible friend, Fiona, who came with us from London to Florida to help us out. Fiona looked after Max for us during Daniel's appointments and surgery which was such a huge help and she is a pro at cheering up Daniel too. It has made this return visit so much easier. Thank you, Auntie Fi!

Here is a video of Daniel (sounding a bit hoarse) this afternoon after he came home from the hospital. He is such a pro at this hospital thing now!

Posted By Kristen (Daniel's Mum)

Daniel's Dad completes the London Marathon

So I (Daniel's Dad) completed the London Marathon successfully, raising over £3,600 for STEPS. The experience was absolutely incredible. There were thousands of people cheering all the runners along the whole way, with pubs on the route decorated in different themes, each packed to the rafters with and spilling outside. The whole atmosphere was so positive.

I did the first half in 2:05 and was feeling really good, except I aggravated an earlier calf injury and had to alternate between running and walking for the last half, and I finished in 5:11. It was quite a disappointment to be beaten home by many fancy dressed runners including: a camel occupied by two runners; a 10ft high bottle of London Pride Beer; Richard Branson dressed as a Butterfly; Princess Beatrice in a train of 34 people tied together (first royal to finish and largest chain of people tied together); Darth Vader; and the Gingerbread man. One week on, however, the old body has recovered pretty well.

Thanks again to everyone for supporting me with your donations and thoughts! It really helped keep me going.

We are now in Florida, gearing up for Daniel's surgery on Monday.

Posted by Shane (Daniel's Dad)

A Detour on the Road to Recovery

Daniel had a follow up x-ray on Friday. My plan was to write a blog entry about how well Daniel is going and include the comments from Dr Paley about how good the x-ray looked. But yesterday, that all changed with an email from Dr Paley telling us that Daniel will need another procedure because part of the femur has not healed.

Yesterday was a tough day thinking about Daniel having to go through it all again. Keeping busy organising everything in the UK and USA helped keep our minds distracted.

We have a surgery date booked for 3 May, so Max's first birthday will be in Florida. I am hoping that this is not an indication of Max's childhood, fitting his important milestones around his brother's ongoing needs.

Although the news is not great, I want to stick to my plan to tell you all how great Daniel is going. He has his new prosthetic (he chose the zebra pattern himself) and is walking really well now. He is such a happy boy and rarely talks about pain anymore. He is even coping pretty well with pin site cleaning - distracted by iPhone games and the promise of a piece of chocolate afterwards. I just wish we didn't have to put him through another surgery so soon when he will still have memories of the last one.

The good news is that Shane can still participate in the London Marathon. Remember you can help motivate him by donating at www.justgiving.com/shanerigby. You don't have to be a UK resident to donate (hint hint, family and friends in Australia!).

Here is a video of Daniel walking (1) without his prosthetic and (2) with his prosthetic.

Posted by Kristen (Daniel's Mum)

Daniel's Dad is running the London Marathon for STEPS

Please help motivate an overweight, middle-aged man to run the London Marathon on the 25th April! Oh, and I'll be raising money for Daniel's favourite charity, STEPS.

STEPS is a charity dedicated to making a difference to the lives of children and adults affected by lower limb conditions like Daniel's.

My training is into full swing now, and I'm running from work at Canary Wharf to home near Paddington, but I need your help to keep me motivated.

You can sponsor me by going to www.justgiving.com/shanerigby.

Thanks from Shane, Daniel and STEPS!

Posted By Shane (Daniel's Dad)

Daniel's Latest X-Ray

Daniel had an x-ray taken in the UK on Friday which we emailed to Dr Paley in the US. He advised that everything looks fine and it is all in a good position which is great news. We will have another x-ray in another month.

Here is a close up photo of Daniel's fixator which you can see in the x-ray. We took one with bandages on so it is not too graphic for those with weak stomachs (namely Grandpa Budge!)

It has been six weeks since the operation and Daniel is doing really well. He crawling around a lot now. It has been great for Max having a crawling partner, they have become really good buddies! Daniel has returned to nursery two days a week which has motivated him to become more active and distracts him from his fixator. He still has some pain but knows to have a little rest before moving about again. Daniel had a plaster mould taken of his leg on Friday to build him a new prosthetic. We are very excited because he is now big enough to have a real prosthetic foot with toes!

Posted By Kristen Rigby (Daniel's Mum)

The NHS & Dr Paley

National Health Service (NHS)

I feel that I have not said enough about the UK's National Health Service (NHS). For those overseas, the NHS is the public health system in the UK.

Shane and I are so thankful to the NHS (Westminster PCT) for funding Daniel's surgery, a significant cost. We are so grateful that the NHS was willing to look globally and recognised that the best outcome for Daniel's hip was outside the UK.

The process for applying for the funding went very smoothly. The NHS's Patient Advice Liaison Service (PALS) advised us about the process and who to submit our application to. Shane and I, with the support of Daniel's orthopedic consultant, Mr Peter Calder at Royal National Orthopedic Hospital, submitted an application to the NHS (Westminster PCT) which was reviewed by a panel which considers exceptional cases. The panel approved the funding. It was elevated to another committee due the magnitude of cost which also agreed that Daniel's best option was to have surgery with Dr Paley in the USA. Once approved, the NHS liaised directly with the hospital which meant that we could just concentrate on Daniel.

Thank you NHS!

Dr Paley - Daniel's Surgeon in the USA

Here is a news clip that was shown on FOX news in the USA this week about Dr Paley helping a little girl, Eva, with the same condition as Daniel. It gives a really balanced report about the lengthening process and the next stage for Daniel.

Posted By Kristen (Daniel's Mum)

Daniel's Superhip Surgery - A More Detailed Account

Before you start reading, this is quite a detailed post for friends and family who want more details but also for families that are going to embark or thinking of embarking on a similar journey.

PRE-OPERATIVE

We arrived from London in West Palm Beach on Thursday night, and Daniel had his pre-operative appointment at St Mary's Medical Center on Friday afternoon. We thought it was a short appointment with Dr Paley but it was actually an afternoon of appointments.

First was all the standard checks with the nursing team. Daniel was pretty good, probably as a result of his hospital visits after the febrile convulsion episodes (another story but just some more stress for Mum and Dad!). He was NOT HAPPY about drawing blood from his finger though. The nurses were great and managed to calm him down with biscuits and ice lollies. Max enjoyed an ice-lolly too, although half his face was stained bright orange.

Next stop was the anesthetist who ran through the process and explained that Daniel would have an epidural during and for a couple of days after the surgery to manage the pain. He also said that if Daniel developed a cold over the weekend we would have to cancel the surgery. I had a cold at the time so I spent the weekend stressing that Daniel would catch it and the surgery would be cancelled, apparently a common scenario. I tried to keep a germ free distance from Daniel which was really hard because all I really wanted to do is cuddle him lots.

Next stop was x-ray. Daniel was pretty tired by then and started being very hyperactive running around and laughing hysterically. He wasn't too happy about having the x-rays though, Max and I could hear the yelling down the hallway.

Our next appointment was with Dr Paley and his PA (Physicians Assistant) where they reviewed his x-ray and MRI. The good news was that Daniel's knee is stable so he didn't not need the Superknee procedure. The bad news was that there was only a 75% chance that the hip surgery would be successful compared to the usual 99% because the femoral ball had fused to the socket and there is a chance that it could re-fuse post surgery. We also found out that the surgery could be about 9 hours and he would likely need a blood transfusion. Scary stuff.

Our final appointment was a blood test at the laboratory which we postponed until the next day as by this time it was 6:30pm and we had been up since 4am suffering jet lag so we were exhausted. The blood test was not much fun for anyone. Shane had to hold Daniel down with him screaming as two nurses took his blood. I was holding back tears, it is just so unfair that my little boy has to go through this at such a young age. He was really funny though. The nurse asked him who Daniel Rigby was and he pointed at Max. He then told her to do Max first. Poor little Max, he had no idea what was going on. Daniel talked a lot about squeezing his arm and taking blood, pretending to do it to Mummy and Mickey Mouse. Not a typical imaginative play scenario for a 2 year old!

So at the end of the day, both boys asleep in the back of the car, Shane and I drove back to the hotel feeling very emotionally drained and very overwhelmed. We knew that we were doing the best we could, we were having the best possible surgeon in the world perform the surgery. We needed to focus on that to get through the next few days. We were just hoping that Daniel stayed healthy over the weekend so the surgery could go ahead so our little boy didn't have to go through all this again. I don't know if our nerves would have coped with it either.

The night before Daniel's surgery we all went out for an early dinner at a family restaurant. Daniel was really well behaved and very cute which made tears well up in my eyes especially when Shane told him to say to me, "I'll be okay Mummy". How was I going to get through this? As for any parent, I just had to.

Cuddle with Daddy the night before surgery

THE SURGERY

We arrived at the hospital at 6am. Daniel woke up coughing which worried us a bit. He was in a great mood which made me feel worse because he had no idea what was coming. The anesthetist was not too worried about the cough and said that they would just have to monitor it during and after the surgery.

A party with friends in the pre-op area before the big event

Daniel was given a pre-med so he was happy - just like he was high. Shane took Daniel into the operating theatre where he had to blow up a balloon to help him breathe in the sleeping gas. Shane came back and we both sat on the bed fighting back the tears. Max, oblivious again, was sleeping in the stroller.

We sat in a waiting area for about 10 hours, reading magazines and trashy novels and taking turns to take Max for walks outside. I wouldn't have thought it but the knot that had been in my stomach for days had eased off a bit. It has been similar to waiting for a big exam. The nerves before are a lot worse than the actual exam. A couple of times someone on the surgical team would come out and give us updates. We also saw Dr Paley three times, once on his way to the theatre, once after he finished the internal work and once after the external fixator was put on. He was pleased with the result and didn't think the hip and femur would re-fuse which was fantastic news.

At about 5pm, we were taken through to the recovery waiting area by one of Dr Paley's PAs. We were able to catch a glimpse of Daniel as they drove him past to recovery. It was almost an hour before we were able to go in though because afterwards we learnt that Daniel had spiked a fever and was having trouble breathing. We were eventually allowed in one at a time. It was a pretty stressful time.

Once he was getting enough oxygen, they transferred him to the Intensive Care Unit. The poor thing had to have his arms restrained because he kept trying to pull out his IV and pull off the oxygen mask. I stayed with him overnight. He was given a drug throughout the night to reduce the inflammation in his throat caused by having a breathing tube in for so long during surgery. By the morning, he was breathing normally so we could transfer to the normal ward. Daniel had a sudden spurt of energy in the morning, probably a side effect from one of the many drugs he was on. I was given about 15 different drug information sheets which was slightly scary. Daniel started climbing up the bed and telling Shane that he wanted to put his shoes on and go home. He also broke his epidural, his pain relief for the next 2 days!

First night in hospital (Intensive Care Unit)

POST SURGERY

Daniel stayed in hospital for the next two nights. He spent most of the time sleeping or watching television or being poked or prodded by doctors or nurses. The worst was the 5am blood test!

Day 2 - Looking better (fewer tubes at least!)

Day 3 - Even better, hospital food!

The physios came around on the third day to get him out of bed into the stroller so he could play in the playroom and I took him for a couple of walks outside.

First trip out of bed to the hospital playroom (you can see the fixator in this photo)

Max enjoying the playroom too!

First walk outside to the front of the Children's Hospital

For the first few days when we got back home (hotel substituting for home), Daniel was pretty withdrawn, not like the Daniel we know. He spent most of the day in bed and we would take him in out in the pram to get out but he would just sit there quietly looking sad.

Over the next two weeks he started to improve and we started to see the old Daniel. He still had quite a bit of pain and could only be in one position for a short period of time before it started to hurt again. He also started to crawl a bit. We were lucky enough to meet another Australian in the park one day before the surgery who has two children of similar age. Daniel really enjoyed visiting them and playing with their toys - it was the best therapy and really helped to distract him from the pain. (Thanks Hayley, Finn and Avalon!)

We visited Quantum House on our last night. Quantum House is similar to Ronald McDonald House, a caring place to call home for families whose children are having hospital treatment where each night a different charity group cook dinner for all the residents. Daniel and Max really enjoyed playing in the playroom and we were able to meet some other children with fixators. We are hoping to stay there for some of the Daniel's first lengthening procedure.

The worst thing we have to do is the pin-site cleaning. Every day we have to clean the pin sites where the metal rods on the external fixator enter the skin to avoid pin site infections. Daniel has six pin sites. Shane (my hero) has taken on this job while I try to stop Daniel moving and calm him down. Bandages are wrapped around each pin site which have to be removed, the pin site cleaned (or scraped if there is dead material) and the bandages re-wrapped. Daniel sobs through the whole process, crying, "Daddy, stop", "Daddy, hurts". Its not fair that a 2 year old has to endure this!! We are hoping it gets better as the pin sites heal a bit more. Otherwise, it is going to be a long 3-5 months until the external fixator is removed.

We had our 2 week post operative appointment with Dr Paley and he is happy with Daniel's progress. The x-ray was pretty amazing, bits of metal everywhere. We have to send an x-ray via email to him every 4 weeks. We can have the fixator removed in the UK so we don't have to return provided all goes well until the first lengthening. The timing will depend on how the femur grows but will probably be between the age of 4 to 6 years of age.

Thank you to everyone's support during this time. Shane and I often say that one of the upsides of having a child that has to go on this journey is the love, kindness and support of family, friends and strangers that we have experienced along the way.

Enjoying the Florida sunshine post surgery with Mummy

Enjoying the Florida sunshine post surgery with Daddy

WHAT ABOUT MAX?

We can't forget Daniel's little brother Max. In the three weeks we spent in Florida, Max changed from an easy baby to an adventurous infant charming all those he meets. He has been the comic relief for all of us! Thanks Max.

Update: I wrote this about 5 days ago and as I write tonight Daniel has improved quite a bit. He is experiencing a lot less pain and is a lot happier. Pin site cleaning has improved a bit too. Shane manages to do most of it in the shower while distracting him. He hasn't started walking yet but he is crawling about a lot more and jumping around on the sofas.

Posted By: Kristen (Daniel's Mum)

Daniel's Superhip Surgery - A Quick Update

This is a quick update on Daniel's surgery. I will write a more informative entry when I get back to London especially because I know it helps other families who will be going through the same experience.

The surgery went really well and Daniel has a new functioning hip which is fantastic news. He spent the night in ICU because he had some trouble breathing after such a long surgery (nearly 10 hours). He stayed in hospital for 3 nights. He is still pretty miserable (a week later) with pain but we are starting to see glimpses of the Daniel we know.

Shane and I are continually amazed by the way Daniel has coped with this major event in his life - we are so proud of him.

Here are two photos, the first one of Daniel spending his first night in ICU and the second one only six days later enjoying the Florida sunshine!

Posted By Kristen (Daniel's Mum)

Thank You from Daniel's Family

A big thank you to Daniel's Nan and Pop's Church, Glasshouse Country Anglican Community Church in Australia, for the Prayer blanket you made Daniel for his surgery on the 11th January.

The quilt has been made with prayer and love by many people in the Church. The quilt was blessed and prayers were made for Daniel and for us, his family. Also, thank you to our friends and family who have passed on their best wishes to us. Thank you so much for your love and kindness giving us the strength we need during this time.

Daniel freaked out about a tiny scratch on his knee tonight in the bath so I am not sure he is going to be too pleased about having metal pins poking through his skin! It will take a bit of getting used to for all of us.

We fly out to Florida on Thursday (7th January) and will be there for three weeks. We are staying at the Spring Hill Suites in West Palm Beach if anyone needs to contact us during this time.

Posted by Kristen (Daniel's Mum)