Well this is what genetics says:

I was at school on Friday doing my look up on my patient for the weekend and my cell starts to vibrate. I knew it must of been someone important because Rob was working, Zachary was still in school and Marissa was just about getting home. I wasn't suppose to answer it while in the hospital but I saw it was Boston so I did anyway. (At that point I didn't care I had been waiting for call backs from a couple of doctors)

Well it goes like this: Hi this is Matt from genetics is this Zacharys mom? Sure is.....Matt proceeded to tell me what he found out so far on Zachary. They are diagnosing him with another syndrome. I didnt get it at first because they told me it was unusual to have 2 let alone label with another? I was confused, but he said they are still researching and may be able to lift 1 of the others after all the DNA/chromosome testing is done which will take 4-6 weeks. I will be nuts by then I am sure. LOL

Well they say he now has Oculoectodermal syndrome. Its very RARE with only 15 cases reported. He told me if I try to look it up on the internet I may not have much luck because there isnt much out there regarding this and with that they want to use Zachary as research on this syndrome. It was first diagnosed in 1993 and the people that have it are all aproximately under 25 yrs old. With that they don't know if this passes down generation to generation, or if it has any effects later on in life. Another mention he said was these patients can have/get arachnoid cysts. Well me being the freaked out mother I am, go and pull out the binder I made (thanks Cheri for the tips) of all the medical info and reports for Zachary. I go to my tab of his eye dr because I know he has had a MRI of the brain & orbits and guess what I read under the findings: "There are bilateral anterior arachnoid cysts present. There is a single 5 mm high-signal focus on short TR sequences." Ok what does that mean? I have no clue, but you can bet I got right on the phone with genetics and left a message for the dr. to call me. I want to bring that to their attention because I don't remember seeing this paper in the papers they where sent (I pulled it out from my cabinent where I kept reports as such). This MRI was done back in September of 05 so I am wondering if they will do another one to clarify.

I am a nut case right now and can't wait for final answers. Just when I thought i was going to get clarification I am getting more confused. I am sure with time and thoughts and prayers we will get through this and with our amazing family support I am positive we will get through it all.