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)