Daniel Update - Christmas 2008

We have had a few requests from friends to update Daniel's blog because it has been a while since we have posted. So here goes...

Daniel is 15 months now and has started at nursery two afternoons a week. His favourite activity is messy play, especially painting. Daniel also enjoys reading books - mainly about animals. He doesn't say many words yet but he can make quite a few animal noises! His first word was, "Duck". He also enjoys watching the same Playschool DVD over and over and over again. Thankfully, Grandpa sent over some more taped episodes so we got some variety!Daniel is also showing signs of being musical, something that is definitely come from his Dad! He enjoys playing the harmonica, the drums, the recorder and the piano.

He is also enjoying swimming lessons with his Dad every Sunday morning. He loves splashing and blowing bubbles and he doesn't get upset when Shane dives him under the water.

Daniel is getting more steady on his feet and can walk along with us holding only one of his hands. He enjoys walking so we don't think it will be long until he is doing it himself. No rush though - we can still catch him at the moment!

Daniel's first prosthetic was adjusted a couple of months ago to make it a little taller but he is due to have a new one made in January when we return from our holiday in Australia. Shane (Daniel's Dad) has become a bit of a novice prosthetic technician and has made some adjustments to it so it will last through to January.

We haven't made any definite decisions regarding Daniel's treatment plan. At this stage, we are still in the information gathering stage. We have a few years to make our decision.

Finally, thank you to our friends, family and those in the PFFD community who have supported us in 2008. Shane, Kristen and Daniel wish you a Merry Christmas and a Happy New Year!

PS - One more bit of exciting news, Daniel is going to be a big brother in May 2009!

Posted by Kristen (Daniel's Mum)

Videos:
1. Daniel playing his new set of drums (Thanks Auntie Fi!)
2. Daniel entertaining his Gran on the harmonica
3. Daniel displaying how well his walking is going!

Daniel's Trip to the US

Last week, Shane, Daniel and I flew to New York City for the week. Shane worked for three days at Barclays Capital NYC office and Daniel and I explored the city (including Times Square and the sand pit in Central Park - see photos).

On Thursday morning we drove down to Baltimore to visit Dr Dror Paley at the International Center for Limb Lengthening.

Dr Paley estimated that Daniel's right leg will be 29 cms shorter than his left leg on maturity. He is confident that he can successfully lengthen Daniel's leg. This would require surgery on his hip at about 3 years of age followed by three stages of lengthening at 4 years, 8 years and 12 years of age gaining about 1 cm from the hip surgery and 8 cm from each lengthening. The growth in his left leg could be slowed down up to 5 cm which would get us to our 29 cm difference. A difference this large is at the limit of what Dr Paley has done before, and as a result there is a real possibility of not achieving the full lenthening anyway.

The process is extremely difficult to endure and it is difficult to prevent infection at the pin sites and even the daily cleaning and bandage changes can be painful. Each time we would need to stay at least 4 months in Baltimore as the success of the lengthening is dependent on the rehabilitation process. Daniel would need to have two hours of rehab a day (which he would need pain medication to endure).

Also, the financial cost will be significant since we do not have health insurance in the USA and Dr Paley is the only specialist we feel has the experience to perform the lengthening. Each operation alone will cost a minimum of US$50,000 and this is without the cost of daily rehabilitation and follow up care and living in the US for at least 4 months at a time.

So while it is great news that Daniel's leg can be lengthened, it is a very difficult decision to make whether to put Daniel through this procedure. We are trying to speak to as many people as possible to help us make the most difficult decision of our lives. We hope that whatever decision we make, our family and friends understand why we made that decision but most of all we hope that Daniel understands.

Posted By Kristen (Daniel's Mum)

Video: It's a walk in the park!

Daniel is getting faster pushing his little wagon but hasn't yet learned to turn around so it doesn't take Daniel long to go from one end of our living room to the other. So...on the weekend we took him down to Hyde Park where he could go and go and go.... Shane (Daniel's Dad) thinks Daniel must have walked about 500 metres! His little wagon is handy too for carrying his Mum and Dad's drinks back from the kiosk (in the first video).

Posted By Kristen (Daniel's Mum)

Video: Daniel's First Steps to Walking!

Daniel's First Leg!

The day finally arrived and we picked up Daniel's prosthetic from the Limb Fitting Centre!

We think Daniel understands the significance because a huge grin comes across his face when he stands up on both feet.

He is having to adapt his crawling style to cope with the prosthetic which is causing a bit of frustration. But the exciting thing was that Daniel stood for over 5 seconds without holding onto anything...while eating yoghurt coated raisins. This happened within an hour of using the prosthetic.

Taking it on and off is a bit more convoluted than slipping into some thongs (if you are Australian) or flip flops (if you are British) but I am sure we

will get pretty quick at it and it will become routine.

Because kids grow so quickly, we are due back at the Limb Fitting Centre in a month to start the fitting process again!

We don't think it will be long until he starts walking...and running. Then the fun will start!

Posted By Kristen Rigby (Daniel's Mum)

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A Message from Nan and Grandpop

Our friends tell us when they are visiting their newest grandchild to enjoy some "baby worship". Oh, if only it could be so easy for us to do that too. Queensland is a long and tiring journey from London (not to mention the expense) so our "baby worship" is done via photos from Daniel's Blog and Picasa Albums and the occasional Skype.

When Daniel was born we were in Perth with other Grey-haired Wandering Gypsies on a Round Oz trip. (Was the really just twelve months ago?). When Shane phoned I can still remember very clearly exactly where we were driving, so Jim had to find a place to park the car. We cried with joy at the new birth, our grandchild number 8, and with sadness that Daniel had an impediment to overcome. But the sadness was even more so for Shane and Kristen knowing that they would have to make some hard decisions on Daniel's behalf, before he was old enough to make those decisions for himself.

We were blessed with a visit from our newest family at Christmas/New Year when we could engage in face to face "baby worship". That was a lovely time of seeing Daniel with his parents who are so relaxed in their loving of him, and of cuddling that little warm body in person.

Some might think that after several grandchildren another one would be just "ho hum". There has always been excitement and apprehension for each grandchild for each one is so precious to us, Number 8 no less than Number 1 or all the others in between.

We know that with the love and care of his parents, grandparents, aunts, uncles, cousins and numerous courtesy family members Daniel will go from strength to strength and develop into the wonderful person he is meant to be.

Go Daniel, Go!!

Posted By Jim and Esma (Daniel's Nan and Grandpop)

Happy 1st Birthday Daniel!

Daniel was very lucky to celebrate his first birthday in Provence in France. Not many people can say that! His actual birthday is today but we had a birthday party for him on the weekend.

Shane, Daniel and I were over in France to celebrate our friend Jemma's 30th Birthday (that's Jemma holding Daniel in the group photo).


We stayed at an beautiful country house called Les Carmes near L'Isle sur La Sorgue in Provence. On Sunday morning we visited the markets at L'Isle sur La Sorgue and picked up some fabulous fresh food for Daniel's birthday party and the owners of Les Carmes kindly organised a birthday cake. We think Daniel enjoyed himself although it was a bit overwhelming with nine adults singing "Happy Birthday" at you - there were a few tears!

It has been quite a first year for the three of us. We do wish that Daniel had not been born with PFFD but it is part of who he is. But it is only a part of who he is, which is an amazing little boy that we are so proud to call our son. Daniel's condition has changed our outlook and attitude on many aspects of life for the better. It has also shown us how much love and support there is out there, not only from our family and friends but also from strangers that have read our story.

Here is a funny video Daniel's Uncle Matt sent through from Australia - I don't think I behaved like that mother!

Posted By Kristen (Daniel's Mum)

Two Feet on the Ground!

Today for the first time, Daniel experienced what it is like to have two feet on the ground!

We had an appointment at the Limb Fitting Centre at the Royal National Orthopaedic Hospital in London so that Daniel could receive his first prosthetic.

His parents were very excited but Daniel didn't really understand the significance of the occasion. There were a few tears shed as a strange man in a white coat put a very strange device on his little leg.

Daniel was given some time to recover from the event and then spent some time standing up against the rehabilitation parallel bars. For the first time he was able to stand on both feet without performing a balancing act.

Unfortunately, a few tweaks are required and the workshop is very busy at the moment so we won't be able to take the prosthetic home until September 1st. Daniel didn't want to show you any photos of his prosthetic until he has the final product so stay tuned.

Meanwhile, Daniel will continue practising his balancing act for the next Olympic Games and perhaps even give the parallel bars a go.

Go Aussies! Go Team GB!

Posted By Kristen (Daniel's Mum)

A Message From Gran and Grandpa

We flew from Western Australia to London a few days before the expected arrival of our first grandchild. Like the expectant parents, we couldn’t wait to meet him. We were awake in our rented bedsit when the call came from our son-in-law Shane. Baby Daniel had finally arrived into the world but there was a problem with his right leg. Of course our happiness was tinged with sadness and anxiety for Daniel and his parents. It was the first we knew of what was to become a familiar term to us – Proximal Femoral Focal Deficiency or PFFD.

During the next two weeks in London we did all we could to help. We shopped and cooked, we talked and listened, we loved and cuddled Daniel, we researched on the net and sometimes we just let them have space and time together to get used to the usual ups and downs of new parenthood.

Finally the day came for us to return to Australia. It was one of the hardest things we have ever had to do – leaving that little family of three so far away. In many ways it can be harder to be a grandparent of a child with a disability. Of course you feel pain for your grandchild but you seem to hurt even more for your own adult son or daughter. However, Kristen and Shane are best friends as well as a couple and we knew they would always be there to support each other in dealing with Daniel’s special needs.

It is almost a year since our little Daniel was born. Although so far away we are lucky to have seen him often in Australia and London and of course via the skype camera. He is a delightful child, a beautiful, happy, bright and friendly boy who endears himself to everyone he meets. He already has all the attributes he will need to cope with what lies ahead. We are immensely proud of his parents for the way they are dealing with Daniel’s PFFD and we have no doubt that whatever path they decide to take in Daniel’s treatment, he will have a wonderful future that is full of love and encouragement.

Posted By Terry & Lindy (Daniel’s Gran and Grandpa)

Favourite Story Book and Raisins

Today we visited the Limb Fitting Centre at the Royal National Orthopaedic Hospital in London so a plaster cast could be taken of Daniel's leg in order to build his first prosthetic extension. This was very exciting because it means that Daniel will be able to start walking soon. He is already compensating without an prosthetic by standing up on his toes on his right foot and bending his left leg slightly. But a prosthetic extension will really help him.

After our eventful shoe shopping trip (see post below), Shane and I were expecting a fight on our hands to get Daniel to sit still long enough to take the plaster cast. We armed ourselves with several tools of distraction. A combination of his favourite story book, "Where is Maisy?" and a box of raisins ensured that the technician, Simon, was successful.

Provided Daniel's miniature plaster cast does not get lost amongst the big adult sized casts, we should have his prosthetic extension in the next week or so!

Posted By Kristen (Daniel's Mum)

A Big Thank You...And Shoe Shopping

Thanks to all those who have responded to Daniel's blog either in the comments section or by a personal email. It's been an amazing response and really touching. To family and friends, thanks for your messages of support, they really help. To those with PFFD and their families who have responded a huge thank you! It's amazing the community that's out there.

The prosthetic technician asked us to get shoes for the appointment on Wednesday, so we had our first shoe shopping trip on the weekend. Daniel just does not like to have his legs or arms held, so holding him still long enough to try shoes on was almost impossible. He wants so much to be independent that being held really upsets him. Kristen, the shop assistant, Seamus (who came to help) and I took 45 minutes to get the first shoe on!

Daniel 1 - Us nil.

How on earth are we going to hold him still long enough to take a plaster cast tomorrow?

Posted by Shane Rigby (Daniel's Dad)

The Journey So Far...

Daniel has been to see three specialists so far, two in the UK and one in Australia. All of the specialists have advised us that he will need to have surgery on his hip when he is about three years old. We won't know exactly what will need to be done until a little later when his hip has formed.

Two of the specialists are of the opinion that the length of his femur is too short for lengthening. An explanation of the lengthening process can be found on the side bar. They believe that the best treatment will be for Daniel to use a prosthesis. Possible amputation of his foot and fusion of his knee may be performed to get a better result from a prosthesis. The other specialist has not formed an opinion as yet.

There is one specialist in the USA who is apparently the leader in the field and is a strong advocate of leg lengthening. He has performed more than 5000 lengthenings since 1987 (Baltimore Sun, Jan 2005) and will perform leg lengthening when other specialists will not. Daniel has an appointment with this specialist in October.

We do not have to make a decision for a few years and in the meantime Daniel will need to be fitted for a prosthesis so that he can start walking. He has an appointment at the end of July to have his first prosthesis fitted. Stay tuned...

Posted By Kristen (Daniel's Mum)

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The Beginning

Note: This entry is not meant to be depressing or make people feel sad. It is an honest account of how I felt at the time to help other parents who might be going through a similar experience.

We did not know about Daniel's condition until he was born. It was not picked up on the ultrasound because the sonographer only measured one femur, the left one.

After 27 hours of labour, we were handed our beautiful, tiny (5lb 5oz) boy. We were so excited to finally meet him. After some cuddling time, we handed him over to the midwife to bathe him. I will never forget the words of the midwife, "Let's show your Mum something". Our overwhelming joy and excitement turned to despair.

Daniel and I were wheeled to the maternity ward at about 4am. Shane tried to stay but security told him he had to leave and couldn't come back until 8am. It was the longest 4 hours of my life. I couldn't sleep thinking about whether my baby would ever be able to walk and what had I done to cause this. I didn't want to talk to anyone except Shane.

The pediatrician came to see us the next day to check over Daniel. Daniel was otherwise healthy and he referred us to a pediatric orthopaedic consultant.

The months afterwards were of mixed emotions. We had so much love for Daniel. He is such a beautiful baby. But there were days where I cried and cried. I felt so much guilt and so much fear for his future. I felt like I was in a dark hole and would never be able to get out of it.

Doctors don't know what causes PFFD and over the last year the feelings of guilt have minimised. I am still fearful for what lies ahead for Daniel but he has such a great personality and is loved by everyone who meets him so I know he will do okay. I think he will be an inspiration to a lot of people including myself! Daniel is a very determined little man and there was no way he was going to let me stay in that dark hole.

There is a story called "Welcome to Holland" which really helped me in my darkest time. It has helped a lot of parents who have had a child born with a disability.

Welcome to Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Posted By Kristen (Daniel's Mum)