Super Nash: June 2011

Monday, June 27, 2011

Trying this walking thing...

We've been practicing walking a lot lately and he's getting really good at it. He even let go a couple times today and was standing alone!! He seems to like the shoe lift better, and walks around more, when I don't put his left shoe on so whatever works!?! He's doing great!!! He even put a few dance moves in there for ya! :)

Monday, June 20, 2011

X-Rays

PFFD
Type 1b

These are the X-rays of Nash's femur. You can tell that the right side is definitely shorter than the left. The top of his right femur is almost at a right angle and his left one is normal. The hip joint on the right is flat as opposed to the left, which is rounded. That will also have to be corrected. That is what the Superhip surgery will do. (That's the first surgery we will be doing next fall and the reason we're going to Dr. Paley) I hope this gives a better idea as to what is going on.

Nash is doing great with his shoe! He's walking along the funiture already so we're very happy he's getting used to it. I'll try to get some video of it and post it...its super cute :)

Friday, June 17, 2011

Shoe Lift

We got the shoe lift today! The ankle brace came in last week so we practiced wearing that all week. It fit perfect and didn't seem to bother him at all! We found some shoes that fit over the brace and brought them in to Travis. He made the lift today while we waited. Its exciting having both feet on the ground, he just has to get used to it. The shoe lift is pretty bulky so our goal is to get him to stand on it first, then when he gets used to it, we can narrow it a little. Hopefully within a couple weeks he'll start taking a few steps?! Don't worry, I will let everyone know because I will be SO EXCITED. :)

Superman Brace

This is fun!

Close to letting go

Nash and Daddy

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