Daniel Turns Five!

Our little Daniel has just turned five years old!

On the day he was born, if I only I had had the ability to see into the future and see Daniel at 5 years of age.  All my worries about how his condition would affect his life would have disappeared.  I would see a very active, enthusiastic, funny and clever little boy that inspires me and those that meet him.

Since starting this blog almost five years ago, I have received many messages from new parents who are going through the initial fears, worries and grief after their baby is born with a limb difference thanking me for writing about Daniel's journey.  I hope that this blog post provides even more evidence and hope that their child's disability will not define them.  It won't detract from their lives but add to it.  I think the Paralympic Games in London is a testament to that!

The catchphrase of the London Olympics and Paralympics was "Inspire A Generation".  I think this so relevant for kids born with disabilities to show them that sport is not limited to able body athletes and their disability should not hold them back from being involved.  Last weekend, I looked around the gym at all the kids participating in sport with Daniel and thought, "Wow, he could be the only kid in this room that represents his country in sport".

It is also great seeing disabilities becoming more visible in the media which is such a big influence on our generation.  Yesterday, the boys and I saw a full window display featuring Oscar Pistorius advertising a brand of sunglasses. 

Persons with disabilities are also appearing more in television shows like Switched at Birth which features two hearing impaired teenagers or Glee and Friday Night Lights which feature teenagers in wheelchairs (although in the last two examples, I don't know why they need to be played by able bodies actors).   Kurt Yaeger, a below the knee amputee who campaigns on behalf of disabled actors is starring as a new character on the TV show, Sons of Anarchy.  I like how the actor, Kurt Yaeger, credits the show's creator for "writing a character who has a missing leg but it is not part of his character.  He just happens to have a missing leg."  It would be great to see this more in mainstream media.

Daniel loves sport and drama.  He rarely sits still or stops talking. Speaking honestly, when Daniel was born, I thought that his disability would define his interets and that I would have to encourage him to be interested in activities like art and music because sports (which require physical ability) and drama (which would require a high level of confidence) may not be suitable.  Boy, how wrong was I!  I am not saying that if your child is born with a disability, they will be sports mad or have a high self-esteem. I am saying that your child will be who they are, independent of their disability.  I am sure it contributes to some degree but it does not define them. To quote Oscar Pistorius, "You're not disabled by the disabilities you have.  You are able by the abilities you have".  My son has definitely changed my view on disabilities and I am so excited to be on this journey through life with him as he develops his interests and discovers new ones.


Another major worry I had when Daniel was born was that he would be bullied.  We haven't entered the difficult years yet but from my experiences to date, I think whether Daniel is bullied or not will not necessarily be due to his disability but due to his personality, the resilience he builds up over his early years and the support system he has around him including us as his parents, his brother, his teachers, friends, his family and the community.  The other day, Daniel was laughing about how one of the children in his school class runs funny.  I had to talk to him about whether he would like it if someone laughed about how he runs (which is definitely unique).  When he was born and I was worried about bullying, I never envisaged I would be having this conversation!

I love this quote from Oscar Pistorius when talking about his Mum and his brother and the resilience he built up over his childhood -

My mother said to us in the morning, Carl you put on your shoes, and Oscar you put on your prosthetic legs and that is the last I want to hear about it. I grew up not really thinking I had a disability. I grew up thinking I had different shoes.

Don't get me wrong, there are tough days.  The surgeries to date and the ones ahead of us are painful, long and stressful for Daniel and all of us.  The constant staring and pointing, particularly in Singapore, gets me down some days.  Luckily Daniel is not really bothered by it, whether he doesn't notice or doesn't know any different or doesn't care, I'm not sure. I remember one day when a child was staring at length at Daniel's leg (this is normal, kids are curious). It was made worse by her mother who instead of reminding her child that it is not polite to stare, joined in staring for a good length of time until she realised I was watching her.  But that same afternoon, a Mum came up to me a Daniel's taekwondo lesson and said, "Your son is such an inspiration". Hearing those words definitely outweighed the staring incident earlier.

So, to all those new parents who are just discovered the world of congenital or non-congenital limb differences or other disabilities, your child will inspire you and a generation and its not limited to just those with disabilities.  I hope this blog entry and the photos below go some way to helping you feel positive and excited about the journey ahead.

Shaw's Little League - Mixed sports program (basketball, cricket, golf, volleyball, athletics, baseball, football)

Golf

Athletics

Cricket with the Australian International School Sharks

Taekwondo

Swimming

Here is a video of one of Daniel's swimming lessons.  Daniel can now swim 50 metres freestyle. (Update Jan 2013 - can now swim 250m!)

Before I sign off, for all those PFFD parents, I like to post a picture of Daniel's prosthesis whenever he gets something different.  Daniel's new leg is made completely of plastic including the foot.  It is really light and his mobility has increased significantly. This one also has a hinge at the ankle (as requested by Dr Paley). Here is a picture of it (covered in Ben 10 stickers).

  
Posted By Kristen (Daniel's Mum)

Happy Hip Highlights from Helsinki

Daddy and Daniel Trip to Finland

A quick update on the recent visit with Dr Paley from Daniel's Dad, Shane. . .  

Max and Mummy ready and packed for Perth

Daddy and Daniel at the airport

Dan and I flew to Helsinki to see Dr Paley on Thursday night. Max was pretty distraught last time Dan and I left them behind for Aunty Kim's birthday in Australia so Kristen took Max to Perth leaving a few hours before us. Max was so chuffed going in the taxi to catch a plane with Mummy by himself.

The flight was pretty good. Dan fell asleep straight away since we left from Singapore at midnight, and slept most of the 12 hour flight to Helsinki.  

After meeting my second cousin Lotta, we went straight to the hotel where the European Paediatric Orthopedic Society conference was being held.

Dr Paley was able to see us pretty quickly and he reviewed Dan's X-rays and MRIs, and as soon as he started examining Dan he was clearly happy with Dan's hip. He has good hip motion forward and back of about 60 degrees and you only need about 40 degrees for normal function. There is no sideways movement, but that doesn't cause any issues of concern. He checked out Dan's gait and was pretty happy with that too. Given where we started with Dan's hip and all the physiotherapy, exercises and stretches it was awesome news. He now has a functioning hip and we can start to think about next steps.

Dr Paley suggested we now wait for a couple of years before starting lengthening his femur because age 5 is a more difficult age to deal with the emotional aspect of lengthening.  So we now have 2 years off from surgeries!

Some other highlights of the trip were the food: moose steak (caught by Lotta's boyfriend Timo), reindeer (not Santa's), deer (from the family's farm), traditional black bread, traditional sweet bread (bulla), and the strangest Finnish Easter desert (Mämmi: looks like vegemite and smells like rye bread, mix it with cream to eat). Dan is very adventurous with food and had a go at everything.

The other highlights were catching up with family, the Angry Bird "superstore" (not really so super, but was enough for Dan - Helsinki is the home of Angry Birds), snow fights with the family (we were lucky enough to get there before it all melted), and walking on a frozen lake! Thanks to all the family for making it such a memorable long weekend for Daniel. He absolutely loved it!

Angry Birds Superstore

Angry Birds Soft Drink

Frozen Lake

Fun with Snow

Enjoying Snow with the Finnish relatives (Lotta, Matti and Timo)

Posted By Shane (Daniel's Dad)

How do you stop a 4 year old from running and jumping?

Before I update you on the latest on Daniel, I just want to send out our best wishes to all the kids we know having their first lengthening with Dr Paley in Florida.  We think about you often and think you are all superstars!  One of these amazing kids, Ethan, has a blog (www.e-rodsangels.blogspot.com) which we keep up to date with.  It is great to follow his progress and get an idea of what lengthening involves.

2012 Lengthening Class

Now for an update on Daniel.  Four months ago, we sent Dr Paley one of Daniel's progress x-rays. After reviewing Daniel's x-ray, Dr Paley advised us to, "Try and keep him from running and jumping for the next 3-6 months". Talk about the impossible!  How would we keep a four year old from running and jumping?

Well, it is lucky for us that Daniel is just the kid to deal with this.  He did get frustrated not being able to run but only every now and then.  The first month involved me repeatedly saying, "No running Dan!", "No jumping Dan!" but after that he was pretty good about it.  He has found ways to adapt like hopping on his left leg rather than jumping.  He also spends a lot more time playing with the girls whose activities are not as physically active.  I think he is used to being told what he can and can't do and just accepts it now.  He is such a good kid!

Today, though Dr Paley gave us the go ahead to return to running and jumping.  I am so excited to tell Daniel when he gets home from the playground! (Update: His reaction? - like Christmas and all his birthdays had come at once - the photo on the background of the blog was taken when we told him).

A few weeks ago, Dr Paley asked us to get an MRI on Daniel's hip because the x-ray did not tell him enough information.  Because it is difficult for a four year old to lay still for long and the MRI machine can be a bit scary, he had to have the MRI under sedation. 

For those who know Daniel's history of getting a cough about the time he needs a general anesthetic, you will not be surprised that he got a cough.  This can no longer be a coincidence!  Anyway, after two weeks of postponing, Daniel had his MRI on 29th February.

He was not too happy about seeing the dreaded Sleep Doctor again. We watched a video about MRIs on YouTube which really helped and we talked about it being an exciting adventure.  Even though he would be asleep during the whole process, it helped to distract him from the general anesthetic aspect.

This was the first time I had seen Daniel go under general anesthetic. Usually only one parent is there and Shane bravely volunteers. This one involved putting an IV in his hand rather than the mask.  He was crying about the needle hurting and in about 5 seconds he was completely asleep.  The MRI took about 30 minutes.  Daniel was a bit grumpy when he woke up and wanted us to go away so he could continue sleeping.  After about half and hour, we were able to get him dressed and take him to McDonalds for a Happy Meal (his choice).

Hanging out with Puss In Boots and
Kitty Softpaws before the MRI

Paparazzi like shot of Daniel in the
MRI room before they shut the door

The next day, I went and picked up the MRI DVD and the report from the hospital.  Next time remind me that I should NOT read the medical report. I should destroy it before I get tempted to look at it.  It sounded awful.  Here is an except:

 

As you can imagine, we felt pretty devastated.  Shane and I couldn't sleep that night with worry.  Shane rang Caroline (our angel) at Dr Paley's office who told us that Dr Paley would not spend any time even reading the report because unless the radiologist has a working knowledge of Daniel's hip they do not really understand what they are looking at. That gave me some sense of relief but I was still thinking how something positive could come out of a report that seemed so negative.

This morning we heard back from Dr Paley.  He said that he couldn't really tell anything from the MRI. Caroline later told us that Dr Paley's looked puzzled, but not frustrated and there was no grunting and groaning which he does do when he is not happy with an MRI.  Dr Paley said he would need to assess Daniel's hip for motion and pain when he sees him in Finland in April.  We booked Shane and Daniel's flights to Finland this afternoon.  We were holding off in case Dr Paley told us we had to get on a plane to West Palm Beach.  So we are really none the wiser and hope that we know more in six weeks time.

There has been some exciting news in the field of leg lengthening recently.  Dr Paley is the first surgeon to trial out a new lengthening device which may be used on children in the future.  It means no more pin sites and less pain during the lengthening process.  Here is a good video explaining it.

Moving on from medical news, Daniel started preschool at the Australian International School in January.  He has settled in really well and absolutely loves it!  He is going four days a week and catches the school bus to and from school everyday with his great friend Maya who is the year above him.  The bus picks them up and drops them off from our condo.  Mummy, Daddy and Max wave goodbye to him every morning and he always has a big grin on his face.  I was a bit worried about Daniel moving from a small nursery to a school of 2500 pupils up to the age of 18 but the school is very supportive of individual needs and values diversity and respect for others.   The preschool kids have been learning and talking about these values this term.

First Day of Preschool

Daniel telling his class about his family

Daniel and Maya hanging out after school

Before I sign off, I usually like to add a little bit about Daniel's little brother Max who is turning 3 in a couple of months.  Daniel and Max are great friends, even closer since Max started to really talk.  Here is a video showing what a caring little bro he is.  Just some background information - at Christmas time in Singapore, one of the malls has a Christmas themed outdoor area where they have giant machines pumping out soap suds to replicate snow.  As you can see, Daniel loved it and got completely covered in bubbles.  The video shows Max taking a lot of care to clean up Daniel's prosthetic leg afterwards.

Posted By Kristen (Daniel's Mum)