Super Nash: Exciting news and FAQ's

Tuesday, April 17, 2012

Exciting news and FAQ's

I will start with EXCITING news...We are expecting another baby!! We're due on May 14, 2012. Obviously this isn't new information, I just haven't put it on the blog yet... so here it is! We are happy to be expecting a baby GIRL! Nash and Aidan are very excited!! They will be amazing big brothers and she is already loved soooo much. :)

Our other exciting news is that we have Nash's first surgery scheduled! It will be August 7, 2012, in West Palm Beach, FL. Dr. Paley will be performing the Super Hip surgery. The surgery will be sponsored by the Paley Limb Lenthening Institute as a tutorial, or a teaching surgery. There will be 10 other surgeons in the adjoining OR observing Dr. Paley perform and narrate the surgery. They chose Nash because his is a "basic" Super hip surgery, so its not as complicated as some are. We are excited about it because that means the surgery will be documented so if we want to watch it someday, we can. I'm not sure I could watch it, but if Nash wants to someday, it will be there for him! It will also be used to teach other orthopedic surgeons how to perform the Super Hip Surgery. Very Cool!

FAQ's

Does the new baby have PFFD?

NO. We found out about Nash's leg at our 20 week ultrasound and there were no signs of it with her. We knew there was a very, very slim chance because it is so rare and non-hereditary, so we weren't really surprised. She is growing great and we are ready to meet her any time!

How long will you be in Florida for this surgery?

Two weeks.

What surgery is this?

The first surgery is the Super Hip surgery. It's the first of many in this process. Dr. Paley will reconsruct his hip and top of the femur to stabilize it for future leg lengthenings. It is an 8-10 hour surgery. Nash will be in the hospital for 3-4 days and the rest of the time we will stay nearby. He will have a spica cast that will eventually be removable for bathtime.

How long will he have a cast on?

Six weeks after we get home. Hopefully we won't have to go back to Florida to get the cast removed but we will find that out later.

Does "sponsored" mean the surgery is being paid for?

WE WISH!! But no, It just means that it will be documented for future teaching purposes. We still feel lucky to be a part of educating other doctors and surgeons.

When is the next surgery?

If all goes well and everything heals correctly, we will go back in a year for our first lengthening! (That's the one where we will be there for 4 months)

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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