Super Nash: Doin a dance!

Thursday, August 2, 2012

Doin a dance!

Here you can see him walking around (and showing off his dance moves) without his shoe on. This is how he usually gets around at home. It's a perfect example of how kids can adapt to anything. We just love to watch him play :)

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About PFFD

Proximal Femoral Focal Deficiency (PFFD) or Congenital Femoral Deficiency (CFD) is a rare, non-hereditary, birth defect that affects the hip bone and the proximal, or top of the femur. 1 in every 40,000 live births are affected by this condition. (per Nash's doctor, Dr. Paley) Nash's right femur is half the size of his left. His knee is affected as well. If we chose to do nothing, his right leg would be 10 inches shorter than his left when he is full grown. Nash just completed his first surgery..the 'Superhip' surgery in West Palm Beach, Florida. Dr. Dror Paley at the Paley Limb Lengthening Institue, is one of 2 doctors who perform this surgery in the United States. He not only created the surgery, but he is, by far, the most experienced. We plan on starting the lengthening process next summer, which will require us to be in Florida for 4 months. We need approx 8cm of bone growth so we will try to get 1mm every day. The reason we will stay in Florida is because Nash will have daily Physical Therapy at the Paley Institute. They need to keep a close eye on bone growth and range of motion during the lengthening process.

Nash will go through a minimum of 3 lengthenings in his growing years...at 3yrs, 8yrs, and 12yrs old. (approx) Our goal is to have 2 legs the same length as he goes into his adulthood!

Welcome to our LIFE :)

We really want to express how grateful we are for such wonderful friends and family. The love and support that we have received is amazing. We want to thank you for visiting our blog and hope that if you ever have any questions, feel free to ask. I try to keep the blog updated as much as possible. It's really been a great outlet and a way to let everyone know our progress and milestones. I hope that if you don't know Nash, or have never met him, you get a chance to at some point. He is truely the sweetest boy and his strength is a huge inspiration. We couldn't be more proud of our little man :)

If this is your first visit to the site, it's best to start at the beginning with the "It's a Boy" post. That makes everything easier to understand.

Wishing you Health and Happiness,

Chris, Caroline, Aidan and Nash