Our trip to Disney began last Friday. We stopped in Gainesville and had lunch with Paul in the mall. It was like a drive thru tune up. Toby's prosthetic was making a clicking sound at the ankle joint so Paul took it all apart and fixed it for us. We checked into our townhouse in time to make dinner and relax for the next big day.
Our friends Steve, Patty and 3 year old son, Bruce came with us. Bruce is in Toby's class. We had a great time at Disney. There were long lines of course but we know the boys enjoyed themselves. Toby especially loved the Chip and Dale Chipmunks. However, he thought they were the official "Alvin and the Chipmunks" so he kept asking me why they weren't singing. He also enjoyed the flying Dumbo ride and the Buzz Lightyear ride where he got to shoot the bad guys. 
On Sunday, we went to Downtown Disney and had dinner at the coolest restaurant - Disney's T-Rex Cafe. It's similar to the Rainforest Cafe. There are huge dinosaurs everywhere, an ice cave, a Dino fossil digging area, shopping, and a meteor shower every 20 minutes. Toby is still talking about it.
On Monday, we went to Universal Studios where we played in the Curious George PlayPark! It was so cool! It was a water park and a ball pit shooting arena. We were first row to see George and the Man with the Yellow Hat perform on stage. It was really special!
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| Mommy and Toby on the Woody Woodpecker Roller Coaster. This boy has NO fear! |
There is the neatest Dr. Suess area for kids at Islands of Adventure. We had fun on the Cat in the Hat ride, the flying red fish blue fish ride, the carousel, and the train ride above the town.
Tuesday completed our trip with our annual appointment with Toby's surgeon - Dr. Woo. It was great to see him and Amanda (his assistant) again:) I can't believe it's been a year. We got some good news and some not so good news...but nothing terrible - thank God. Good news... and news we were expecting. Toby's femurs are still slightly different lengths. We will have x-rays of them next year to track a two year difference. Toby's knee is very loose - but not much worse than the other knee. He's missing his crucial ligaments in his knee - which is typical for complete absence of the Fibula. His bowed Tibia is not anymore bowed than it was a year ago. It is still at a 20% angle. His heel pad is slightly migrating to the back which is completely normal. There is no indication of Tibia bone overgrowth at the heel pad which is great news.
Not so good news - A very tiny piece of the ankle growth plate was left in the heel pad after the amputation. It was too small to see on the x-rays last year. It is about the size of a pea now and has formed small bone particles/calcium behind the heel pad. You can even feel it outside the skin. It was not Dr. Woo's fault ...just something that happens. Toby's heel pad has had a rough time. If you remember back two and half years ago, we spent 3 weeks in the hyperbaric chamber to save his heel pad and avoid a skin graft after there were complications with blood clots and blistering. Dr. Woo tried to save as much of the heel pad tissue as possible. So now... we just wait. Could be months...could be one year... or several years. We do know that when the bone becomes larger and uncomfortable and affects his prosthetic use, he will have surgery to remove the growth plate and bone.
What a crazy and wonderful week we had. For those of you in sunny Florida, we hope you are enjoying this beautiful weather as much as we are! As for the rest of you....you should move down here:) Love you all!
The Kings
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