"Look's GREAT!" Dr Paley's verdict on Daniel's latest x-ray. Yay!!!
So preparations for Daniel's first limb lengthening have begun. We have booked in a surgery date for October 8th this year. We will need to stay in West Palm Beach for about 6 to 8 months. We have quite a lot of work to do before then. We need to:
- Find somewhere to live (thinking of a house in Palm Beach Gardens)
- Find a preschool for Max
- Find a tutor for Daniel to continue his school work
- Buy or lease a car
- Apply for visas to the US which in it self requires quite a list of paperwork (we need one because we will be there for longer than 90 days)
- Organise our insurance company to pay the hefty bill (got the cost estimate yesterday and let's just say we could buy a house for the cost of extending Daniel's leg by 8cms so everything crossed that the insurance company pay up!)
- Move out of our condo in Singapore and put all our things in storage
- Find somewhere for Shane to stay when he is working in Singapore (Shane is going to stay in Singapore and continue working but come to the US whenever he can to visit)
- Book flights (can't fly much further than Singapore to Miami!)
- Bring our dog Tommy to Florida or find a kind family to care for him while we are gone
Have I forgot anything fellow international Paley patients? Oh, and I have just started back at work so this will be my after hours project. But it keeps my mind busy and distracted from what I know is ahead of us.
Daniel is excited about the trip to Florida and keeps asking when we are going. We have talked about the fixator, pin site cleaning and physiotherapy but he does not appear to concerned about it. Daniel is very gift/reward driven so he is talking a lot about what presents he will get in hospital and treats he can eat, probably a product of the countless number of reward charts we had to use for his last surgery. Daniel has quarterly blood tests and tells me he wishes he had a blood test every week so he can visit Toys R Us. He just puts his hand out and has the blood test with no fuss and then usually follows up with a critique on how the doctor did and then its off with his $5 budget to Toys R Us. I think we will leave all our toys in Singapore because I think we will be buying out the store for this next surgery.
I have asked Daniel whether he wants to have his little leg longer. He said he does because he will be able to do more things so I think he is becoming aware of his limitations. He also is getting fed up with people asking him about his leg. He doesn't get upset, he just gets annoyed and frustrated. Probably like when I got engaged or pregnant and I was sick to death by the end of people asking the same questions over and over! His best friend, Maya, thought it would be great if they had a special chrystal which stopped people always asking so I think she is getting sick of it too.
So, I think we are almost at the right age to start lengthening his leg. He wants it now but before he couldn't have cared less whether he had a short leg or not.
Daniel's recent x-ray showed a difference of 15cm which after plugging into Dr Paley's "Paley Growth" iPhone app predicts a difference of 26 cm at maturity. This has improved from the 30cm initially predicted when Daniel was a baby so hopefully it improves even more.
Each lengthening we are aiming for 8cm of additional length in Daniel's short leg (each of the lines on the x-ray above is 4cm). This will take it from 15cm difference to 7cm which will make a huge difference even though we won't get to even legs this time around. Daniel should be able to get around without a prosthetic, just standing up on his toes and will be able to have a shoe lift instead of a prosthesis. He will also find it easier to sit on chairs. When your knee is in the wrong place, standard chairs were not really built for you.
So, how do they lengthen? The first four months is the lengthening period. Basically, Daniel's femur bone will be broken in surgery and an external fixator applied. Each day we will turn a screw on the external fixator which will pull the ends of the bone apart about a millimeter a day. As bone is a living substance, new bone grows at each end. Growing bone is the easy bit, the hard bit is stretching the muscles and nerves. Dr Paley requires all his patients to stay in West Palm Beach to attend twice daily physiotherapy, land and pool therapy. We will see Dr Paley every two weeks for a follow up and we will need to do exercises at home.
The second four months is the consolidation period where we stop lengthening but the external fixator stays on and daily physical therapy continues. A lot of patients go home for this period but because we live so far away, we have decided to stay in West Palm Beach where we have access to Dr Paley and the best physiotherapists. Once the fixator is removed we can return to Singapore where Daniel will continue physiotherapy but be able to return to school and all his activities. We will need to go through this process two more times at age 10 and 14 and then hopefully, Daniel will have two equal legs. We will take each lengthening as it comes though to see how Daniel copes with it both physically and emotionally.
Here is a good link to the process on Dr Paley's website - limb lengthening. Also, here is a video that takes you through the Paley Institute.
On non-limb related news, Daniel started big school in January and Max started at preschool. They enjoy getting the school bus together every morning and afternoon. They are both really enjoying school life.
Little Bro Max will start at a new preschool in a new country (again!) when we go to Florida.
He is a pretty adaptable and easy going kid which makes it easier. He
will see his brother go through something pretty tough though so we will
need to keep a close eye on him. He was really just a baby when Daniel
had his hip surgeries.
Daniel is still doing Taekwondo and was awarded his yellow belt recently. He is now aiming for green stripe. He is still swimming and can swim 200m freestyle. He still loves his mixed sports program every weekend and has just taken up piano. He really enjoys piano lessons and we are hoping to continue them in Florida. With Daniel's Dad being a keen musician, a wall full of guitars, a piano and a drumkit in our living room, we hope music can become a passion for him that he can keep up even during his lengthenings.
This will probably be my last post before we depart for Florida so until then we are going to live a fixator-life to the fullest!
Daniel is still doing Taekwondo and was awarded his yellow belt recently. He is now aiming for green stripe. He is still swimming and can swim 200m freestyle. He still loves his mixed sports program every weekend and has just taken up piano. He really enjoys piano lessons and we are hoping to continue them in Florida. With Daniel's Dad being a keen musician, a wall full of guitars, a piano and a drumkit in our living room, we hope music can become a passion for him that he can keep up even during his lengthenings.
This will probably be my last post before we depart for Florida so until then we are going to live a fixator-life to the fullest!
Posted By Kristen (Daniel's Mum)
