An Update on our Brave Little Superhero!

It has been four months since I have updated the blog, four months since Daniel's fixator has come off and four months since we moved to Singapore so I thought it was time I spend some time updating you all on our brave little superhero.

After his fixator was removed, Daniel continued with his daily physiotherapy sessions and five sets of stretches throughout the day for the first two months.  Gradually, we have been able to reduce this down and now we are happy to say that we only have hydrotherapy once a week, a land therapy session every two weeks, one session of stretches and strengthening at home and an x-ray once every 3 months!  Daniel has also started swimming lessons which he is loving.  It is great exercise for him and a great confidence booster.

Daniel also has a new prosthesis with a foot that provides an energy return. At the moment, the prosthesis is a horrible looking skin color. I am not sure why they use this color because its not like no one will notice it.  Daniel wants it to be black and red, the same colors as his favourite Aussie Rules footy team, the Bombers, so Mummy has been searching Singapore for black and red fabric which they can use to laminate it.  No luck so far, so Daddy is going to see if he can find some in Mumbai, India where he is working at the moment.  Never thought it would be so hard to find!

Now that our time is not taken up with physiotherapy and stretches, we are able to enjoy life outside Daniel's hip.  Not just the time we have during the week for swimming, going to the playground, having playdates with new friends, constantly wrestling with little bro Max (with army sergeant Mummy yelling in the background) but also on the weekend we have been able to enjoy going to the zoo and to the  beach without having to worry about how we are going to fit in Daniel's stretches.  I remember once when Shane took Daniel into the disabled toilet at the shopping centre to do his stretches and an old man was hovering outside not sure what was going on in there.  It seems strange that we had to do this but if we weren't really strict about it, missing one would easily lead to missing three and we didn't want Daniel to have to go through all this for nothing.  I have also had time to see my friends, something I wasn't able to fit in around all the stretches.  Today Daniel had his first full day at nursery like the other kids in his class, instead of the usual half day so he could fit in his physiotherapy.  He was so excited that he had trouble getting to sleep last night!

Daniel also recently went on a trip to Brisbane with his Dad for his Auntie Kim's birthday.  He was so excited and had an amazing time with all his Aussie cousins!  I asked his cousin if Daniel ever stopped talking and he said when he was sleeping and when he was drinking his juice.  Daniel really loves to talk!

Trip to Singapore Zoo

Swimming Lesson at our condo

Trips to the local beach

Scootering around the condo

Wrestling with Max

Daddy and Daniel trip to Brisbane

Hanging out with Grandpop and
the cousins at Auntie Kim' s party

Stop talking Dan!

We have been able to enjoy just having fun with Daniel rather than constantly nagging, begging and bribing him to do his exercises. We went through a lot of reward charts but even these didn't work sometimes. Thankfully, it is not Max we were trying to bribe because he has a very "whatever!" attitude is not driven at all by reward charts. At the end of each reward chart, Daniel chose a reward which nine times out of ten was an Angry Bird (from the Angry Bird iPad game). Daniel's physiotherapist even got into the Angry Bird bribery technique giving Daniel one if he was good for the week. His physiotherapist also gave him one with a ribbon tied around it for his birthday and the whole physiotherapy department signed a birthday card for Daniel which was really sweet. If the physiotherapy department awarded frequent flyer points, Daniel would be gold member.

One of Daniel's completed reward charts

Daniel's Angry Bird collection

We not celebrating and popping the champagne cork yet, because we haven't had our follow up with Dr Paley, but it looks like Daniel's hip has not refused and his hop motion is pretty good. It is really difficult to tell what motion he has because he was living without movement in his hip for so long so his body compensated. It is hard to know how much is hip movement and how much is pelvic and back movement. When Daniel had the fixator on, we could tell what hip motion we were getting but after it came off it was very difficult to know, even for the trained physiotherapist. We have been having monthly x-rays sent to Dr Paley and he is happy with the results but has reiterated that it the motion in his hip that is the most important factor. I just wish we could pop in to see Dr Paley.  The physiotherapists are also working on strengthening the muscles in his hip and leg that he hasn't used for so long which will help improve his gait so he can walk further without getting so tired.

We have a follow up appointment with Dr Paley in April next year. We are going to meet him at a conference in Helsinki, Finland which is a lot closer to Singapore than West Palm Beach. I am thinking we are going to be visiting a variety of cities over the course of Daniel's treatment. Our choices this year were South Africa, Israel, Turkey or Germany. We chose Finland because we can get a direct flight and Daniel's Dad's family are from Finland so we can visit some relatives at the same time!

Since my last update, Daniel has also celebrated his fourth birthday. I compare my first four years to Daniel's first four years and am amazed by what he has been through. That list includes three rides in ambulances for febrile convulsions (one on the Eurostar platform in London, one at nursery, and one at a cottage in the middle of nowhere where the tractor had to come with us in case the ambulance got bogged); five surgeries including two over 10 hours with a night in ICU; two external fixators on for a full year of his life; daily physiotherapy sessions and painful stretches; multiple trips to Florida USA to see a doctor; an MRI and a CAT scan under general anesthetic and living in London and Singapore.  Yep, nothing like my first four years!!

The most difficult aspect of Daniel's latest surgery and recovery has been learning to cope with inflicting significant pain on my little boy during his stretches. At the beginning, I would feel physically ill. But after time, I was able to push those feelings into background which is also difficult to deal with because then I felt like an uncaring, unfeeling Mother. These feelings are particularly strong when I see other people get quite upset by what Daniel has to go through, like seeing the tears well up in Daniel's physiotherapist's eyes in London. I remember at the beginning of the journey watching the parents sitting outside Dr Paley's physical therapy rooms while their kids were screaming out in pain from the stretches while they read their magazines or played around on their laptops seeming unaffected by what was going with their kids. I know it is a coping mechanism and those feelings are still there in the background manifesting themselves into a pretty high and constant level of stress.

There must be parents all over the world that go through similar experiences but not a lot is spoken about it, well not that I have experienced. I try to think if it was me, would I have wanted my parents to make me do this when I was four so I could have a hip that works for the rest of my life? I think I would be angry with them if they hadn't and that is what keeps me going on this journey.

I am thankful for the emails I get from Caroline at Dr Paley's office which really help. Thanks Caroline, you are so thoughtful and write so beautifully!

I just wanted to drop you a little quick note to let you know how much I admire your strength and gentle tough love with Daniel. Having to watch your innocent young child go from one trying situation to the next is nothing short of heart wrenching. 

All of these children are so brave and strong. Daniel and his journey has touched my heart in a very special way. Your story has given hope to so many. I’m sure it can be tough at home because others, with the best of intentions, must have a hard time relating to what you’re going through. It’s hard for someone who hasn’t experienced this level of complex surgery, and even more complex recovery to truly understand.

As I reflect back on my childhood and all of the surgeries I had, I recognize the emotional burden it must of been on my Mom. Yet it was her strength that forged me ahead. Dads are certainly integral in this process, but there’s something about a mother’s love that promotes healing. One day Daniel will look back on all of this and like me, be in awe of our mother’s unceasing love.

Daniel also has his own coping mechanisms. One of these is his imaginary friend/sister, Vergonna (not sure of the spelling because Daniel made it up). She is the same age as Daniel and also has a fixator. She is not around all the time but we seem to hear about her a lot when he is has a fixator on. I am not an expert in child psychology but he seems to talk about her in a way to express his own feelings. Another thing Daniel would do was to ask us or the physio to do more of the really painful stretch. He would cry out in pain but still want the physio to keep going. This seems like a really strange thing to do given how much it hurt him but I think it was a way for him to feel some control over his situation.

We are not expecting anymore surgeries (touch wood!) until Daniel's first lengthening when he is six or seven years old. I am envious of other PFFD families who when they experience their first external fixator it will be for a lengthening at age 4 where they will achieve 8 cms of growth and their second fixator will bring it to 16cm of growth. It is a long, hard road but we will get there in the end. We have a brilliant surgeon navigating and the bravest boy I know at the wheel.

Posted By Kristen (Daniel's Mum)


P.S - For PFFD parents, we have posted a Our Guide to Pin Site Cleaning on the blog if it helps at all. See the menu to the top right hand side of the blog.