Super Nash: July 2011

Friday, July 15, 2011

Standing alone!!

Just wanted to show some new pictures we took today of Nash standing all by himself!! He has been doing it a lot and I finally caught it on camera :) We're so proud!!!

Way to go buddy!!

Showin off his baseball :)

He looks so tall here!

It was a HOT night tonight but we went to watch Chris play softball anyway. Nash took a break from showing off his new 'standing' skills and sat with his grandpa Stew for a little bit. By the end of the game they were both making monkey noises...oooh oooh aaahh aaahh!!! Couple of goofballs :)

Watching Daddy play softball with Grandpa Stew

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