.....................................................Surgery is scheduled.

I am sorry for not updating sooner, but really nothing to blog about, well atleast not until yesterday when Zachary's eye surgeon called with the date.

We went to see the surgeon on Wednesday and he was like oh yeah we need to do that surgery. It will probably help him see a little better and look alot better for him. So we discussed the surgery and said lets go ahead and give it a shot.

Well they called on Friday with the dates and he will go in on Thursday November 13 at 2pm for the surgery. yes I know 2pm is a terrible time for a kid like Zachary, but it was that or nothing till february. It will be a very difficult day for me to keep him out of the fridge seeing he can't eat or drink for so many hours before hand. But I am sure we can manage with some bribing. LOL

Zachary will have to go back the next day for a check up, then again the following Tuesday and not again for 4 weeks after as long as he has no problems. So please lets pray there are no problems because we also leave that week for Boston to meet with the orthopedic surgeon regarding that surgery. I was hoping originally we could do it all together so it was less surgery on him but they won't do it all considering his leg surgery is very intense. And they said he would literally be hurting from head to toe and they dont want to do that to a kid.

Other than that, thats it from this end and when something else comes up I will keep you all posted.

.........Beatiful weekend in Upstate NY

Just letting everyone know what a beautiful weekend we had here in Upstate NY. The weather was perfect 70-75 each day and time was everything. No school this past weekend so I got to get alot done.

Saturday was run around day and get things done so Sunday could be a more of a relaxed day. Well Marissa ended up going to Darien Lake with her friend Karlie for their Halloween Spectacular, and Zachary went to his papa's house to work on the farm. So Rob and I got all the running around done and got to relax.

Sunday Marissa & I went to the outlet Mall and got few good deals. Got a couple things for xmas started for the kiddos. I am thinking I need to get it done now because I don't know what will be going on after the next couple appointments for Zachary will tell us.

I did get some more info on the Rod surgery since everyone has been asking what is it specifically called. Well the name of the Rods that they will put in (if thats the route they finally decide on) are: Fassier-Duval Rods. The info is quite intense on them and that has me a little nerveous. I read at one point he will be immobile for 3 weeks. For all of you that know Zachary that will be the most difficult part. But we will see what happens and what is for sure when we go back on November 21.

We go to the eye surgeon on October 22 to find out about that sugery. As it gets closer the more nerveous I keep getting. I hope it realy does help the little guy out. I know he doesnt like the skin on his eye because he is always asking about it and why do the kids at school keep asking me what it is. So I am sure it bothers him more than we think.

Well we have a couple more gorgeous days ahead of us here in NY so we are going to enjoy them and get out and play before the dreaded down him temps start to arrive.

...................................................We are going back to Boston

Its official. We are going back to Boston for a couple appointments on November 21. We are meeting with the ortho-pedic surgeon that will do the surgery and another dr. regarding medical therapy. I am not sure what that exactly means, but I will find out. We where told surgery will be aprx. 1-2 months after that appointment so we may not be home for the holidays in December. It will be tough but you know what....we will be together as a family and we have a artificial tree so it will be up regardless. But we will cross that road when we get there if we get there. Things happen for a reason and normally its a pretty good reason.

I will keep you all posted.

Orthopedics calls back:

The nurse from orthopedics calls back this am bright and early and informs me, that the orthopedic surgeon wants to see Zachary and discuss the surgery because its more complex than what the orthopedic dr told us when we where in Boston. So it looks to be we will be going back to Boston again before surgery can be done. They are looking at around NOvember 21 for an appointment date. They also mentioned us meeting with another dr regarding medical therapy in conjuntion to the surgery.

I am kinda bummed that this couldn't have been done while we where in Boston orginally. I don't understand why they would of scheduled us with 1 doctor and a different one does the surgery. I guess I need to look at it this way.....they are willing to help our little guy out and thats all that matters. Yes times are real tough for us right now and traveling isn't making it any easier but our children our, our priority and we do what we need to do. We can only hope to get in sooner with the 2 doctors so that way this can be done before the end of the year. I just can't stand watching him suffer and be in pain everyday.

When I hear anymore and for sure if we are going on the above listed date I will keep you all posted. Don't forget to read the next post below because I just posted that and this one, but wanted them to be seperate posts so I can keep them all seperated for easy reference to.

Again, thank you all for your prayers and thoughts through this time. Any suggestions/advice from you all is greatly appreciated for things to ask or look into because we are just on overload and can't think of it all ourselves.

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.

The waiting game

Yep, it seems to be thats what we are playing. I was very happy with all the info and appointments that we had in Boston, but now am having second thoughts. We where told we would be called at the beginning of the week with updated information and final thoughts/diagnosis. Well its Thursday and nothing yet. Me being the impatient one for something like this call the Doctors in Boston and get told by the nurse that takes the calls: I will send a email to the doctor and you should hear back within 1 week, the other one says the doctor is in with someone I will send her a email and she will get back to you.

WHAT?????????? Ok maybe I am being impatient but we want the final answers and answers to the other questions we asked. So as of right now we are playing the waiting game and I have no control over it. As soon as we get all the final answers I will post and let you all know whats going on for sure. Thanks for all being there and following us during this time.

Rain, Rain don't go away!

How many people say that? Well I do......yes it rained all weekend here but I got so much done. Saturday I spent the day catching up on things from being gone to Boston, and got groceries. Well Sunday Marissa, Zachary & I went to Big Trucks in Skaneateles. Every year we take the kids and since it was raining Robert didnt want to go. We had a lot of fun because my brother came with us with my nephew Carter. What a cutie he is and Zachary & Carter had such a good time climbing on all the equipment.

After that dreary wet trip, I came home gave Zachary a warm bath and made a homemade soup/chowder, some brownies and still had time for myself. I worked in my scrapbook corner for 3 hours. I got 4 pages done in Zachary's album and once I take some pictures of what I did I will post. But for now I will post some pictures from Big Trucks.

Zachary & Carter on the front loader at Big Trucks.


Zachary on the bull dozer. Whatch out who knows what he will doze over.


Had to go on the skid steer. He thought he was on papas working on the farm.

PS: Thanks for all your thoughts and prayers for our recent trip to Boston for Zachary. Time will tell at this point when his surgeries will be. And after all that he is in very good spirits and I think he understands now what is going to be done, or atleast gets the jist of it. We will keep everyone posted.