Day 2 in Boston

Ok all we are home as I type this from the trip to Boston Childrens Hospital.

It was a very busy, and overwhelming 2 days for Zachary, Rob & I. We had so much info thrown at us and we now need to process it all. Almost a good thing the drive was 5 1/2 hrs so we where able to discuss the options, and what they said to each other to make sure we both caught what they where saying.

This is what we found out at todays appointments:
Genetics: they did a blood draw to get the dna and are going to freeze it for right now till they come up with a diagnosis. Once they get a diagnosis they all agree on then they will use the blood for further studies. They said normally a person doesn't have 2 syndromes and if they do its very UNCOMMON. Zachary is in a gray area and very possible he falls under this situation. They are going to look at the MRI's & Xrays to piece everything together. As parents we felt very good walking out of that appointment. They had a lot of info for us (some things that won't be posted so please bare with us as we open up to discuss things), and the amount of time they took to examine Zachary and bring in others for review too. They took some photos of Zachary to use for education also. When Zachary has his leg surgeries they are also going to do some skin biopsy's where his skin is marbeled and different textures. (The funniest thing was said in the office too from Zachary: The dr mentions how Zachary has the bald spot on top of his head we keep it combed over and Zachary says "Listen I am not bald, my dad is look at him!!!!!!!!!!" We couldn't stop laughing and Rob was like thanks kid.)

Next stop was Opthamology: That was a good appointment too, but not to Zachary. They had to dilate his eyes again and it was a very extensive testing he went through so totally understandable why he was moody. They agree with the new prescription his eye dr. here just switched him to and they said he needs the surgery to take the skin off of his Left eye. They know Dr. Noel who Zachary goes to in Syracuse so we are going to chat with him and see when that can be set up. They don't want to do that and his leg surgery at the same time. So since they know his Dr. they feel comfortable with him doing the surgery unless Dr. Noel doesn't want to do it.

Zachary having his eye exam.

After opthamology we went and had the blood draw and we where out of there. As we where walking out Zachary kept saying "Yes we are out of this joint" But all in all he enjoyed his experience and said he would come back to get better if they promise not to talk about the Boston Red Sox to him. He is a Yankee fan and thats that!!!!!!!!

Getting on the highway to go home

We where able to give Zachary a treat while in Boston and that was a Red Sox game. They played the Indians and won. Zachary like the fact that we where in the upper deck section. Which I was nerveous about but the seats where awesome which surprised me considering we bought them from a scalper. We had club level seats with full service and Zachary got in free so we only bought 2 tix. I guess it pays off having Zachary so small in size.

Enjoying the baseball game

Zachary taking it all in and not understanding why he couldnt get a ball like at the Doubledays