Goodbye Fixator Number 2!

Daniel had his second fixator removed yesterday after 12 weeks.  Daniel had been getting constant pin site infections and had been on and off antibiotics for quite a while.  On Saturday we had our first trip to Accident and Emergency in Singapore with another pin site infection.  The doctor took an x-ray which we sent to Dr Paley on Tuesday.  He saw that the actual pins were quite loose in the bone and there was space around the pin which was causing the pin site infections.  "Fixator pins loose. that’s why he is having infections. Ready for removal". Ready for Removal?  Shane, Daniel and I were literally jumping for joy reading these words!

I emailed Daniel's new consultant at KK Women and Children's Hospital, Mr Arjandes on Tuesday night.  He replied that night and rang us Wednesday morning to say he could do it on Thursday.  I rang the insurance company and all the paperwork was done by Wednesday night.  A dream compared to the long winded and frustrating funding application process we had to go through last time Daniel's fixator was removed.  It was also great not having to organise flights to the US, worrying the whole time that Daniel would get a cold (which he always has done!) and we would be on the plane back.

We are loving KK Women and Children's Hospital so far.  The staff are lovely and it is SO organised.  We get text messages reminding us of appointments and while sitting in the waiting room telling us how many people there are ahead of us.

We had to be at the hospital at 7am.  Daniel's spirits were pretty good.  Daniel managed to get carpet burn on his nose in the admissions area while running around and diving on the floor!  He started to get scared once the pre-op checks started and Shane got dressed in his operating theatre wear.  He remembers what happened last time so I don't blame him.  We managed to bribe him with the promise of a chocolate bar after the surgery to take his pre-med this time without spitting it out (it tastes disgusting - business idea - design a pre-med that kids actually like!).  He was very happy when he went in, lolling about and laughing at iPhone videos of Max walking (see below).

The surgery was over really quickly and we were in recovery with Daniel in about an hour.  It all went smoothly.  Daniel's post surgery reaction in recovery - not so much!  He had a tantrum which lasted about 40 minutes yelling out, "I want my fixator back on".  He did this last time his fixator was removed and except for the big 10 hour surgeries where he has no energy left and he is drugged to the eyeballs, he usually has a big tantrum that subsides once he has something to eat.  Those that know Daniel will know that you can't deprive Daniel from food for too long and the nil by mouth requirement is not really his thing.

After recovery, we went back to the ward where we stayed until 5pm once the staff were happy he was ready to go home.  With no pin site cleaning tonight and no exercises until we start again on Monday, we didn't quite know what to do with ourselves.  We are looking forward to our first fixator free weekend!

From Monday, Daniel has more agressive physiotherapy ahead of him to make sure that his hip does not refuse.  The fixator was in place to distract or separate the femur from his hip so that the fusion did not reoccur.  Without the fixator in place anymore, we have to hope that with normal daily motion and physiotherapy, it will not refuse.  We recall Dr Paley saying that if it has not refused six weeks post removal, we should be all okay.

Waiting to go into operating theatre.  Note the screwdriver Shane is holding.
We brought our own screwdriver (from Maplin on Edgware Road, London)
for the consultant to use to take the fixator off!

An ice-cream treat on our way home.  I had to go out and
buy some shorts last night that don't have a hole for the fixator!

We got to bring the fixator home (and our screwdriver).
Note the long pins that went into Daniel's bone (ouch!) .
The kids have had fun playing with all the parts.

Posted By Kristen (Daniel's Mum)

Farewell Lovely London!

For those who don't know our big news, after 7 years of living in London, United Kingdom, our family has moved to Singapore!

This blog post is well overdue since we have been in Singapore for two weeks now but I wanted to dedicate a blog post to London and our London friends who have been so supportive and who we will miss so very much.

For those who don't know, Shane and I (Daniel's parents) are from Australia (yes, another country to add into the mix!).  We moved to London seven years ago to experience the other side of the world, earn some pounds (which doesn't make so much sense now!) and to travel around Europe.  We put all our things into storage with the intent we would stay in the UK for about a year or two.  Well, seven years later we were still in London and considered it our home.  We had a mortgage and two kids.

The opportunity came up for Shane to transfer with his work to Singapore which means we would be a lot closer to our family in Australia.  It was not the best timing for us, trying to fit in organising an international move (including selling our beloved London flat) with Daniel's constant physiotherapy and hospital visits but that's the way these things work!  We actually finished a physio session and raced back to our flat in time for the car to pick us up to take us to the airport!

We are going to miss London dearly. Shane and I have moved around a lot and 7 years in one city is a major feat for us which shows how much we loved our time in London.  But most of all we will miss our friends who have been so supportive since Daniel was born.  I don't know how we would have survived the last four years without you all! 

From Daniel's perspective, I want to thank the following people who have made a significant impact on Daniel's life. 

• Constance ("Coco") - Daniel's girlfriend who he met when he was four weeks old.
• Auntie Fiona - Daniel's best grown up friend and Auntie.
• Des, Suzie and Vivienne at Micky Star Childrens' Centre  - Three amazing women who ran our local childrens' centre.
• Lauren at Micky Star Nursery - Daniel's key worker at his nursery who was there from his first major surgery. 
• Andrea, Jenny and Jeanne - Daniel's physiotherapists who only knew him for a couple of months but helped him through a pretty significant event in his life.

I am finding it impossible to come up with words that express our gratitude and describe the positive impact you have had on Daniel, not only as a little boy, but as a little boy that has had to go through some pretty tough times.  Thank you! 

Goodbye London, we will miss you! xx

Daniel ("Danny") and Constance ("Coco") as babies

Danny and Coco with Lauren on Daniel's last day at Micky Star

Daniel and Andrea (Physio) - "Can my physios come to Singapore, Mummy?"

Posted By Kristen (Daniel's Mum)