Last week, Shane, Daniel and I flew to New York City for the week. Shane worked for three days at Barclays Capital NYC office and Daniel and I explored the city (including Times Square and the sand pit in Central Park - see photos).
On Thursday morning we drove down to Baltimore to visit Dr Dror Paley at the International Center for Limb Lengthening.
On Thursday morning we drove down to Baltimore to visit Dr Dror Paley at the International Center for Limb Lengthening.
Dr Paley estimated that Daniel's right leg will be 29 cms shorter than his left leg on maturity. He is confident that he can successfully lengthen Daniel's leg. This would require surgery on his hip at about 3 years of age followed by three stages of lengthening at 4 years, 8 years and 12 years of age gaining about 1 cm from the hip surgery and 8 cm from each lengthening. The growth in his left leg could be slowed down up to 5 cm which would get us to our 29 cm difference. A difference this large is at the limit of what Dr Paley has done before, and as a result there is a real possibility of not achieving the full lenthening anyway.
The process is extremely difficult to endure and it is difficult to prevent infection at the pin sites and even the daily cleaning and bandage changes can be painful. Each time we would need to stay at least 4 months in Baltimore as the success of the lengthening is dependent on the rehabilitation process. Daniel would need to have two hours of rehab a day (which he would need pain medication to endure).
Also, the financial cost will be significant since we do not have health insurance in the USA and Dr Paley is the only specialist we feel has the experience to perform the lengthening. Each operation alone will cost a minimum of US$50,000 and this is without the cost of daily rehabilitation and follow up care and living in the US for at least 4 months at a time.
So while it is great news that Daniel's leg can be lengthened, it is a very difficult decision to make whether to put Daniel through this procedure. We are trying to speak to as many people as possible to help us make the most difficult decision of our lives. We hope that whatever decision we make, our family and friends understand why we made that decision but most of all we hope that Daniel understands.
Posted By Kristen (Daniel's Mum)
