Super Nash: Happy Birthday! We're outta here!!

Saturday, August 25, 2012

Happy Birthday! We're outta here!!

The 3rd day in the hospital, Nash woke up and said to Chris "I watch football, Daddy??" Chris was thrilled because it was a Thursday and just happened to be the first Packers pre-season game! Nash had no idea but it was so cute :)

After he had all of his cords taken out, we got to go on the wagon ride. We took a trip to the hospital gift shop so he could pick out a toy. We told him he could have anything he wanted. We showed him every stuffed animal and he wasn't interested. We looked at some games but he didn't seem to care. Chris turned the corner and Nash spotted the perfect toy....a FOOTBALL!! He spotted the baseball, basketball and soccer ball too...so we got them all. After all, it was his birthday the next day!

We kept Nash's pain under control all day and he was even eating a little better. He was feeling good enough that I felt comfortable leaving for the night to go to the hotel and get some much-needed rest. I came back first thing in the morning and he was all smiles, hangin out with daddy. It was his 2nd birthday!! I got there just in time to talk to the doctor as he was making his rounds. He gave us the wonderful news that Nash could be discharged!!!! HAPPY BIRTHDAY NASHY!!!

After the doctor left, a group of ladies from Child Serve came and put up a "Happy Birthday" banner for Nash and gave him a bag FULL of toys. He loved it! They sang to him too :) Then a little bit later there were 2 ladies with puppies that came to visit us. It was so fun! Our friends sent Nash a 'Super Nash' backpack and birthday monkey. He also got a big teddy bear and balloon, birthday cards and some other cool toys. As we were leaving the hospital, there were 2 carts full of toys from a generous business man who buys toys for all the kids in the hospital, so we got to pick out one more toy before we left. Nash had it made!!

We left the hospital and went to the hotel. Gandma Laura, Grandpa Stew and Hattie were waiting for us when we got there. We enjoyed the rest of the day and evening. Nash played with his new toys and was adjusting to being out of the hospital. Keeping his pain under control was tricky and he didn't sleep very well that night. We could tell it was going to be a rough road ahead...for all of us. Thankfully we had each other. We moved to the condo that day and stayed there the rest of our time in Florida.

Puppy visits

Watching football :)

Wagon ride

We're outta here!! Happy Birthday Nash!

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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