On our way...Daniel's first lengthening begins

It's been a while since I updated the blog and a lot has happened so its not going to be a short one!  It has been so busy and continues to be so I am finding a little time to give you all an update. 

We left Singapore at the end of September, packing up everything into storage and moving to West Palm Beach for the duration of Daniel's lengthening.  It was very difficult leaving, the kids love their life in Singapore.  Daniel was loving his school and had a great group of friends at our condo.  He was very settled and very happy.  I remember reading at some point how lengthening robs children of their childhood and I really felt anxious about this leading up to Daniel's surgery.  During the previous surgeries, Daniel's life was centered around his family but at age 6 he is really independent and has his own little life.  But, we have thought about this a lot, and still feel that it is the right thing to do and it is something that Daniel wants.

Goodbye and see you soon to our Singapore friends!

My parents met us in Palm Beach to help us settle in.  They were incredible help and I don't think we could have done it without them.  From settling Max into a new school, to learning to drive again after 10 years (on the other side of the road too!) and Daniel's big surgery, there was a lot of anxiety so have my parents there was a huge help.  Thanks Mum and Dad!!

We enrolled Max in a preschool in the local area.  After a week of separation anxiety and tears, he settled in and enjoys going to his new school.  We will see what 8 months in an American school will do to his accent!  I asked Max the other day whether he is English, Australian, Singaporean or American and he replied, "I am Spanish!"  He is learning Spanish at his school so its not a crazy response. 

Daniel is not attending school during the lengthening but we have found him some tutors which come in the afternoons.  He absolutely loves it and tells me it is the best part of his day and wishes he could do tutoring every day.  He would love to go to school though, he really misses it.  He cried the first day Max went off the school because he wasn't able to go.

So, now on to the big event....the surgery.

Daniel had his pre-op appointments on the 7th October.  That was not without drama, it took 3 attempts to get blood out of his arm.  It was awful watching the nurses dig around trying to get the blood to flow.  We ended up going to see the vampires (what we call the laboratory staff who visit us every morning at 5am) and they were able to get the blood to flow.  He was told he couldn't take of his red blood band or they would need to draw blood again.  Three weeks post surgery and he still hasn't taken it off!

The biggest drama was on the day of the operation.  We arrived at the hospital at 9am on 8th October.  It was a long wait and Daniel wasn't given the pre-med until 2pm so obviously by this time he was very hungry.  Shane took him in to the operating theatre to be put under.  As the staff were about the put him under, Dr Paley rushed in and asked to speak to Shane.  Dr Paley had a family emergency and would have to postpone the surgery.  Daniel was taken into recovery until the pre-med wore off.  Meanwhile, one of Dr Paley's PAs came in to speak to me.  The look in his face completely freaked me out, I thought how could something have already gone wrong during surgery!  It felt like we were in an episode of Grey's Anatomy!

We were back on again a couple of days later.  Dr Paley was on a morning flight and called when he landed to get Daniel prepped for surgery.  The surgery went for about 6 hours and went really well.  We were excited to hear that he wouldn't need pins in his hip (these really bothered him last time).  It also meant 3 less pins to clean (he has 11 pins in total, 8 in his femur and 3 in his tibia).

When we went into recovery to see Daniel, he was sucking on a popsicle.  He was in quite a bit of pain but was slipping in and out of sleep.  Daniel had a epidural to help with the pain and once this started working well, his pain was well managed during his time in hospital.  We had one instance where his pain went up to a ten but the anesthetist was able to give him something extra.  Daniel was pretty good at telling the nurses his level of pain (from 1 to 10).  The physiotherapists would get him out of bed each day and into a wheelchair but most of the time he was zoned out watching the cartoon network.  We were allowed to go home after 4 nights in hospital. 

In hospital, post surgery

Out of bed, into his wheelchair

Ready for a walker race

There was no rest as the next day we had our first PT (physical therapy) session and pin turning/pin site cleaning session with Tony.  Four times a day we have to use a small wrench to turn a dial on Daniel's external fixator a 1/4 of a millimeter, totalling 1 mm a day.  Daniel has PT five times a week and we have to do 2 sessions at home as well as pin site cleaning.  PT involves some strengthening exercises but primarily a series of stretches.  The worst one is left to last and all the kids hate it - the dreaded "belly bend".   This involves laying on your stomach and pulling your foot into your butt to bend your knee.  Over the first couple of weeks we worked up to Daniel being able to bend 90 degrees which is the maximum required.  This was painful because there was a lot of swelling and pain around the pin sites.  Daniel works really hard to get his knee up to 90 by himself with us just helping with the last few degrees.  This is really painful for him and we have been working on him breathing during the stretch, kind of like what they tell you to do during pregnancy contractions.  We need to try and maintain this angle, if we lose too much motion in his knee we have to slow down the lengthening process or stop which we don't want to do.  The external fixator grows the bone but the only way to grow the soft tissues is by stretching them. 

The fixator

At first, Daniel would yell at me a lot telling me he doesn't like me and I always try to hurt him.  But the last week, he has been coping a lot better.  He understands what he needs to do and he wants to achieve it.  Last week after we finished his painful belly bends, he wiped away his tears and took off with his walker.  He came back with a sweet and said, "This is for you Mama, for doing my stretches".  The next day he got out 2 plastic medals he got from the treasure box at PT and gave one to me.  He said, "These are for us Mama, because we are a good team".  He is really proud of himself and is very determined to grow his leg longer.  Sometimes he even tells me I am not stretching enough because its not hurting enough.  We are very proud of him!

We had our first x-ray a week ago and it all looks good.  We have already grown his leg 2 cm longer, well on our way to achieving our 8 cm goal.  It will get a lot tougher though as his muscle starts tightening up.  Dr Paley is going to present Daniel's case to a group of doctors as part of a training session so our next x-ray will be taken then.  After that, we will have an x-ray taken every 2 weeks during the lengthening phase.

First post op x-ray

Both the boys enjoyed celebrating Halloween in the USA this year.  Max's school put on a "Trunk or Treat" after school which we were all able to go to for trick or treating and Halloween themed games.  Daniel went to the celebrations put on my the Children's Hospital.  It was pretty amazing, all the staff were dressed as minions from Despicable Me.  We were made to feel very special!  Our next celebration will be Thanksgiving.  We are looking forward to spending our first Thanksgiving with Quantum House, where families stay during their stay at the hospital (similar to Ronald McDonald House). 

Trick or Treating at the Children's Hospital

Max's Halloween costume - Wolverine

Before I sign off for now, Daniel and I are entering the Palm Beaches 5K on the 8 December to raise money for the Paley Foundation, Dr Paley's foundation which strives to improve the lives of children and adults who suffer from rare and challenging congenital, developmental and post-traumatic orthopedic conditions throughout world.  We would love it if you could sponsor us, no amount is too small.  Thanks to everyone who has donated so far, we really appreciate your support. Just click on this link - http://www.paleyfoundation.org/2013-Palm-Beaches-Marathon/DanielRigby

Thanks to everyone who has sent us messages of support via email and Facebook.    It means a lot to us!!





Posted by Kristen (Daniel's Mum)