..................................December Stuff

Hello all. I am going to post some pictures of the kids and a few things from the month of December. I can't believe another year is coming to a end. Its been a very crazy year for us here at the Saurini's.

A quick recap (hoping I don't forget anything). All good things started to happen in February when I got accepted into St. Joseph's College of Nursing (2 yr every other F/S/S program for my RN), then in April we went on a very relaxing family vacation to Myrtle Beach. Talk about a great time, the kids loved every minute of it and can't wait to go back again. May, Zachary graduated from pre-k, turned 5 and really started to blossom as a little boy. At the end of May was Marissa's 9th year of Dance Recital, soccer & softball started for her. June brought another summer season of the Doubledays, along with my school starting, Zachary started baseball, along with Marissa's sports still. In June Zachary also had a dr. apt with his ortho and they where concerned about his leg and took him out of all activities. So that was heart breaking for him. July was just a busy month of sports and baseball games and the kids went camping with Nonnie Judi for a week. August came around and thats when things started to fall apart on us. 2 days before Rob and I where going away for a little adult vacation (Vegas Baby!!!!!!) Zachary was complaining of leg pain and wasn't acting right. We called his ortho and we went right in. Well the xrays showed he had some deteration of his femur and just everyday walking was causing stress on it. She ordered a MRI and that was done the week we got back from Vegas. Well that showed new tumor growth, and the detioration. Well we got referred to another dr and that lead us down a long road to Boston Children's Hospital.

Boston has been great, and they have been very active in diagnosing Zachary, and working on getting him up to par.

September was our first trip to Boston and it was a long 3 days of non-stop Dr. Visits. October was a typical month (which was needed very much), November we went back to Boston and Zachary had eye surgery. They removed some of the skin growth on his eye so it wasn't blocking his vision. He did very well and so far its been a success. December has been very hectic with the holiday and just everyday life. We got the call regarding the surgery for Zachary and that will be Wednesday February 4, 2009. So please keep us in your thoughts and prayers as we prepare for that and during it.

So we are now hoping for a better 2009 and will keep everyone posted to as to whats going on.

Christmas day at G.G's in Rochester.

Zachary jamming with his new guitar in Rochester. They just got a kick out of him.

Marissa on Christmas Eve with my side of the family.

The kids visiting Santa at Bass Pro Shop

Making cut-out cookies. Yummy, Yummy

.............................Christmas band concert

Last night Marissa had her band concert at school. They sounded awesome. It was a great choice of music and was only 35 min. long. I took my camera to get some pictures, but didn't get any because she was in the 2nd row and I couldn't see her at all. I am bumming because now I have nothing to scrapbook either. LOL

Hope you all have a great holiday and enjoy all those little school concerts.

..............................A lot of pain lately

It's been about 1 week since I posted last, but thats because there has been much pain at this end. I had 3 big finals for school (nursing, pharmacology, & nutrition). We got the results back from Zachary's genetic testing (not posting that info. to much pain to keep bringing up), and last.......Zachary has been having alot of pain in his left left.

We keep asking him exactly where and he points to just above the knee on the inside he says. That is the area that is weakest and will undergo the bone grafting. I tell you 6 weeks can't come soon enough for this poor little guy to get his leg fixed. Nights have been rough because when he has this pain he is up and down all night long. Tylonal/Motrin don't seem to do the trick anymore for some reason. I am thinking maybe its getting worse (which it did at his August apt) or he is used to the medicine. I also think the pain gets so bad during school that when he gets home he starts his medicine again and it takes awhile to get back into him. He won't go to the nurse while in school. He tells us its because the guy nurse is all by himself and has to do everything and take care of everyone so since he doesn't go down he gets a little break. Bless Zachary's heart for thinking like that, but I keep telling him that his comfort level is just as important and the nurse is only doing his job. So hopefully today he went and got his medicine. I called the teacher and explained to him he has been having pain so he was going to watch for the signs.

..............................Surgery is Scheduled

On Wednesday December 11th we got the call for Zachary's surgery date. Zachary will be having surgery on Wednesday February 4, 2009 at Boston Childrens Hospital for his left leg.

Zachary will undergo a 6 hour surgery to place a telescopic rod in his femur & tibia. While they are in there doing that he will also have biopsies of the tumors on the bone, a bone graft on the femur and biopsies on the skin.

I just pray to god we are doing the right thing for this little boy that means so much to so many people. We are not going to say anything to him until after Christmas because we want him to not worry. If we told him now everyday he would ask us if it was time to go yet and he would stress big time. This surgery is going to be a real tough time on all of us, but I am sure we will do ok. I am the worry wart financially though. I am already not sleeping well just thinking about it.

My next task is setting up care for Marissa the whole time we are gone. We will probably be in Boston for 1 1/2 -2 weeks. I would love for Marissa to be there, but I think its important that she keep her routine and go to school. Thats alot of school to miss for a 7th grader.

I will keep you posted on anything new that may arise.

...............................Hair Cut

Just doing a quick post. We have nothing to really blog about right now, just waiting to hear back from Boston with the surgery date.

But in the mean time I have been contiplating cutting my hair shorter. Well I actually did it tonite. My hair is terrible and seems to look much nicer when its shorter. So here are the before and after pictures. (The before pic is terrible of me, but I was doing a quick costume change on Marissa for dance and its the only pic I have of the back of my hair.)

Before - real yucky and longer

The new look. I am loving it. (Can't say as if Rob feels the same way though. LOL)

................................Marissa in a Play

Just letting everyone know that this coming weekend at 12 & 2 both days at the Cayuga Community College theater the Auburn Players will be putting on free performances of a Christmas play. Marissa is a Barbie/dancer in it. She has been working very hard on this play and would love for you all to come out and see her in it. I will post some pictures after this weekend.

Good Luck Marissa we are sure you will do awesome.

................................Waiting

Just a quick update: We are waiting to hear back from Boston as for when Zachary's surgery will be scheduled. They told us probably the end of January beginning of February. When we hear anything we will post so you all know.

I have been talking to Zach about his surgery and I don't know if he quite understands whats going to happen. Some days he says he wants it done other days he doesn't. I have told him right up front that he will have a cast what it will look like (showed him pics), and told him we won't be able to go anywhere for awhile. We are basing most of his Christmas presents around keeping him busy during this time frame. Everything seems to be learning/sit still stuff.

Lets just keep praying everything goes ok.

.................................Decisions, Decisions, Decisions

Some of you may already know what we are up against from chatting on the phone, but for those of you that don't know here it goes:

We went to Boston again on 11/20 & 11/21. We met with 3 doctors 1 was genetics again and all the tests weren't back due to miscommunication. (Who would of thought can anyone get anything straight this day in age?) Then we where off to meet the orthopedic surgeon. Well let me tell you Dr. Spencer was TOTALLY amazing and the amount of time she spent with us was a total pleasure. She def. didn't make us feel rushed, she explained what the surgery is, what will happen, what can happen, what recovery will be like. Then turned it over to us for questions. Rob pretty much kept Zachary busy while I asked questions. Just when you think you have all your questions wrote down more keep popping into your head. Anyway, she said the surgery is needed but its up to US as to when we do it. What a awful feeling that is.......and of course we can't agree on a time frame. She said its not needed immediately meaning like now or else, but its needed. Rob seems to think we should wait because he will be older, he will understand more, and we can keep him down for the 4-6 weeks they are talking for recovery. I seem to think we should do it more sooner than later. My reasoning: he is 44 lbs now and with a 10 lb cast I can still maneuver him, if you do it when they are younger maybe he wont remember it as much, I am scared all the time that he may have a fracture/break, and I think if he is going to miss school he should miss kindergarden over any other grade. So we left there with no definite answer, but to talk it over and call them back. I almost wish they would of just said we are doing it on such and such date.

After that appointment we went to the hematology/oncology dr and she wants to try a experimental drug on him just before he has the surgery and for a couple months after. She is hoping it will help with the healing and lower his pain tolerance level. Yes he is like his mother no pain felt. And with that happening he is not letting his body/skin tissues heal properly.

SO after that very long morning of appointments we are at this point:
1. Deciding when to do the surgery
2. Preparing everyone for the surgery
3. And praying we make the right decision (which they keep telling us no decision is a wrong decision because he needs it done regardless.)


So when Zachary has this surgery he will be having Fassier Duval Rods placed in his Femur & tibia, a bone graft, and biopsy's of the tumors. He will be in a spica cast for 4-6 weeks also which means homebound for all of us so please keep us in your minds when this happens to stop by and see us. We will need distractions!!!!!!!

And possible best of all in Zachary's eyes:
HE MIGHT BE ABLE TO PLAY BASEBALL AGAIN!!!


So what is all of your opinions if you where in this situation? Please leave comments to let us know because we have been asking everyone we know and then we sit and talk it over and add to our pros/cons list.

..................................A little late but better than never

Our family on Halloween. Zachary was Handy Manny, and Marissa just a soccer player. Good thing it was warm for her to be in shorts.


Zachary cleaning out the pumkin at Nonnies house.


Zachary trying to catch the donut on the ring during his school Halloween party




Handy Manny!!!!!!!!!!!!!!

.................................Finally some good news!!!

Yes we got the first bit of good news today. Zachary's eye surgery was good, he is healing good and best of all. His vision has improved 1 notch so far. The Dr. seems to think once it is totally healed he will have a more significant improvement. Thank God we have some positive vibes and so happy. He has to still have drops in his eyes 4x a day but thats to help prevent infection & to help it heal. No patch for now which made him happy. The drops gone would make him real happy, but 1 thing at a time if you ask me.

On the other note, Marissa is preparing for a play here in Auburn. They will have performances on the first weekend of December at the College's craft fair and at Casey Park on New Years Eve for the family thing they do. She is a barbie doll (fits the roll perfect. LOL) I believe the play is free at the college and if not its a small donation I believe. I will get more info and post here for those of you with children that would like to go and see.

................................Surgery is complete

Ok. We got home last night a little late from Zachary's eye surgery and he needed me so this is the soonest I have been available to update.

Zachary did AWESOME. I couldn't believe this was the same Zachary in the beginning. He had to go from midnight to the surgery at 2pm without eating. All of you that know Zachary that we thought was impossible because he eats non-stop. Well he did very well and didnt eat only asked 2x if he could eat. When we got to the surgery center he was fine, they called his name he was fine, up until i had to take his clothes off. Then his anxiety set in. I was a little irritated with the anesth. guy because he was ignoring me when I was asking for something to help him relax. Well when it came time for Zachary to go he didn't want to be carried so they let him walk in his underwear becaue he wouldn't put the gown on. LOL

Then once in the OR he told them they wheren't putting the mask on his face so they just laughed and then waved the tube in front of his face to put him asleep.

They say the surgery went ok, but we will see today. He has a huge shield and packing over his eye and he keeps yelling he can't see. He did wake up this am with a fever so I am a little nerveous, but we go back at 11:30 for a follow up.

I am off to school this weekend so hopefully he will be ok with daddy & grandma's. I hate to leave him but I can only miss 1 weekend of school and if I am going to miss any I would rather it be when he has his big surgery.

I took a couple before pictures and when I get back from school I will post them and have a couple after pictures too.

..........................Thursday is fast approaching

Thursday is fast approaching and I have been preparing Zachary for his eye surgery. I think he understands this time what is going to be happening. He doesn't seem as anxious or atleast not right now Thursday may be a different story.

I am worried about keeping him away from food and drinks. His surgery isn't until 2 so thats a long time for a little guy that eats non stop to go without eating/drinking. I plan on taking him to the Y in the am to visit his old preschool and just spending some 1-1 time in hopes it distracts him.

Friday we will go for a follow up and then next week is very busy with another follow up on the eye, then we are gone to Boston for 2 days.

I will keep everyone posted on how the surgery goes. I am also going to do before and after pics of his too.

..........................School Pictures

Here are the kiddos 2008 School pictures.


Marissa has grown up so much I can't believe. She is getting prettier and prettier everyday. I guess its about time we put that lock on her door so she can't get out. LOL


I wanted to get Zachary's retaken because he was having a bad hair day but everyone told me no because thats Zachary every day. LOL

........................Lump update

Ok. I took Zachary to the Neuro in Rochester and as yucky as I felt I had just wanted to get home. Anyway, the dr. said the lump is either another cyst like he had before on his head, or a spot (tumor) like he has on his legs. He said not to be overally concerned at this point because its pretty small in size, and it doesn't seem to be bothering him. With everything else going on this is a back burner thing. Now that I am home and feeling better I don't think anything is back burner to me seeing it concerns my child. But I am going to bring it up to the Dr. in Boston at the end of the month and see what he says. I mean come on...we where just in the Dr. office not even a examing room. LOL I know not funny, but I am not to big on Strong's set up for Dr. offices. I guess this Dr. has 3 different locations depending on the day depends on what office he is in.

Other than that we have all been sick with the stomach/diahrea bug since Sunday. I got it Tuesday of all days and don't know how I made it to Rochester and back. I got home and was back in bed immediately. Today is a new day THANK GOD!!!!!!!! and I feel much better. Just a lagging headache but I can so deal with that.

School is good. I am nerveous because they posted our final information and to think thats only 1 month away already. Gosh where has the time gone. Oh well off to enjoy some quiet time before the daycare kids get here and maybe catch up on some reading since I did none yesterday.

..................................Can anything else possibly come up?

Sorry ahead of time this post might be long.

Last week Marissa was sick with the headache & stomache bug, then Robert got it and I had just the headache part of it. Well during that time frame Zachary complained of his head hurting also, but I honestly thought he was saying it to be like us. He does that alot. Well Sunday night he came out of his room and told me he had a bump on his head and it hurt. Well I looked at it and thought did he bump his head. He said no he didnt bump his head. I put ice on it just incase. Well the next day it wasn't gone, it wasn't red, and it wasn't bruised. So I was like what could this be. Well I gave it a couple more days to see if it was a bump and just needed time to go away.

Well today I took him to the Dr. because it didn't go away and they think it is a cyst or tumor. They where going to schedule him for a MRI to see for sure but called me back and recommended that I call his neuro dr. in Rochester. I called and he is going there on Tuesday. I am so happy its right away because I am like a crazy mom right now not knowing what is going on.

I just keep praying that someday we are going to wake up and its only been a dream. I honestly don't know where I am getting my strength from right now, and don't know how much longer I can keep it up. So if you all could just say a few prayers for Zachary in hopes that its nothing major that would be great. He has had 2 cysts removed before on his scalp, but I worry because this lump is a good sized lump and in a different location than the others where 2 years ago this month actually.

................................Weekend scrapping

Here are my latest creations from some free time. I wish i had more free time so I could catch myself up on these albums but it just isn't happening. I hope you like them.




Outside with daddy shoveling and learning to ice skate for the first time These where taken in jan/feb of 2006


This was a easter egg hunt at a girl in Zachary's preschool class. They had eggs everywhere possible in their yard for the kids. It was a lot of fun and when Zach found the John Deere Tractor it was over with for him. LOL


Celebrating East. You cant really see to good but I was doing a layout from some idea card (sorry I forgot where they where from) and its using many layers of paper.


Just a simple page. Nothing fancy, but those are still being worked on. They take a lot longer these are just quick and simple layouts.

.....................................................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.

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

Day 1 in Boston

What a day it was. Well we started out going to the Hospital at 730 am for 2 appointments that where set up. 1st was Complex Care - which is a over view of everything going on and where the teams of Dr's group together and work off of each other. Well by the time we walked out of there they had booked up for a Renal Ultra Sound, Hearing Test, and Xrays of the AP Lateral, Cervico-Thoracic Spine.

So now we where scheduled to be there until atleast 4 pm. Well we got done with the tests pretty early so we headed to the hearing test early in hopes they would get us in and out. Well our hopes where granted. Yep thank god because by then Zachary was at the end of his rope with seeing people, and people asking him a ton of questions (as he puts it).

Our second appointment was with ortho (our main reason for being here). Well we didn't get the DEFINITE answers we wanted or needed to know, but found alot out. They said he will need surgery, but what way she was unsure of. She said she wanted to speak with 2 other partners and see what would be best for him since he is in a gray area. She spoke mostly of the surgery that would insert rods in his bones for support. Unsure if it would be all 3 leg bones or just 1/2. Either way we are looking at a minimum of 1 week stay for that and bone grafting to go along with it. I need to look up more about that because they said the grafting would come from a donor and while they where doing it they would biopsy the tumors.

We did find out his arm is shorter on the left side also (like his leg) but right now we have decided to let that be seeing he isn't complaining of anything bothering him and the xrays show it to not have many tumors on it compared to the legs. Plus the arms don't have all the stress on them like the legs. His left foot is smaller than the right (we all have that right?) well his is a while shoe size. Again nothing we can do right now but make sure he has good shoes/sneakers on his feet.

Tomorrow we are back at the hospital at 730 and have genetics & opthamology appointments. When done with those we go back to complex care and touch basis. There may be more tests tomorrow they said. Luckily he has recently had his bone xrays, & mri so they didn't have to redo those.

The best news for us as parents from today . ........Zachary had a hearing test and he can hear. (Ha Ha Zachary no pretending you didnt hear us because we know now:)

Thanks for you all keeping us in your thoughts and prayers. I am not sure if we are coming home Friday night or Saturday sometime. If we stay in Boston on Friday I will post a update again, otherwise look for a update sometime this weekend.

If anyone has any thoughts or questions please feel free to leave them and we will ask the dr's while we are here. Right now I can't think straight with all the info they have given us so I am sure something simple has slipped my mind here for the update and to ask the Dr's.

What a day

Well today we where suppose to leave for Boston for Zachary's appointments and we did. Not until I made sure Marissa was taken care of. Marissa had a soccer game last night in Central Square and during the game she collided with a girl on the other team and landed on her arm. Well she was in a lot of pain, and it was a little swollen so the team came right home because the coach wanted her to get it checked out.

Marissa went today and they said she sprained it. She has a arm thing and has it in a sling. She can't do anything for 1 week and is bumming. Thats 3 games plus practice every day she will miss along with dance.

We made it to Boston and did not get lost. Yeah.....we got here just in time for the traffic to the Red Sox game. Well Fenway Park is directly behind our hotel and Zach is in heaven. He loves his baseball and we are hoping to get him over by the park to atleast see the outside. Tonite he was to tired and very anxious so I decided it was best for him to take a bath and go to bed early. As I sit here and type this he is so cute sound asleep.

I will try to post each night the next couple nights to let everyone know whats going on. Please bare with us and our explaining of all of whats going on. ALot of people don't understand what it is that Zachary has so I have to explain to many people.

Thanks for your thoughts and prayers too. Its means alot and it sure does help.

3 Days till Boston

Thank you for all your thoughts and prayers. Please keep us in your thoughts this week especially. We will be traveling to Boston on Wednesday and have appointments set up on Thursday & Friday. We have no idea how long the appointments will be, but do know we have about 5 set up and they said there may be more once we get there due to other MD's wanting to check in and see all of this that is going on.

Zachary seems to be ok right now about it, but I am sure once we get in the car to go he will then begin to get very nerveous so it might make the drive a little hard for us. When he gets uncomfortable in certain situations he cries & whines and can't stop. No matter how much I hold him or talk to him he just can't stop so we are trying to save different things to talk to him about until that drive. (Like the POSSIBILITY of going to a baseball game while we are there.)

Marissa will be staying with family & family friends while we are gone so please think about her being seperated from us and wondering whats going on also. Thank god she has soccer & dance to kinda keep her spare time occupied. Marissa had her first soccer game for Modified School soccer on Friday and they lost. We keep telling her maybe next time you will win. Always winning isnt the best thing because then you have nothing to improve from, but she doesn't want ot hear it. LOL

Please watch here for updates toward the end of the week. If you don't see anything posted please don't hesitate to email me to remind me to post for everyone. I have so much going on between school, this & home itself I get very absent minded some days. LOL

Great Weekend

What a great weekend we had here. It started off on Friday with me actually having energy and ambition to get stuff done. Well I set a goal and I reached it!!!!!!!!!

I washed all the walls in Living Room, Kitchen, & Hallways. Will do the bedrooms next weekend I don't have school. Then we went to the apple orchard on Saturday and got our apples, cider, apple cider donuts. We all helped in making 3 batches of apple crisp. Oh my house smelled so good.

After all of that I just cleaned little things here and there, did my online nutrition work, and even got to work on 2 scrapbook pages. I was really excited about that because I haven't done anything with my area in like 2 months.

Now the kids have no school today because there was a bad wind storm that blew down trees, knocked out power, and just left a mess in the roads. I actually don't mind that there is no school because that leaves me down 1 daycare kid and Zachary has a eye appointment this afternoon so I don't have to pull him from school. Things always work out for a reason.

Hope all is well with all of you and we will keep you posted. 9 days till Boston

MRI Results

MRI results are in .........(gulp) Well yesterday came and I thought it was gone seeing I was waiting all day for the results of Zachary's MRI. Well it was about 6pm last night and my cell rings. Unkown number so of course I answer right away. Yeppers it was his dr calling with the results.

Unfortunately she is not very optimistic about the results. The MRI shows many tumors on his bones and some have grown in size. There is also weakening of the femur bone along with the ankle area. Dr. Palomino says we need to keep him calm, and inactive. Well like she said with Zachary that is going to be a full time job, so she is now taking away all gym activities (no gym in school) and is as anxious to see what the Dr.'s in Boston are going to have to say about treatment. She is hoping maybe they will try Biophosonate thereapy (could of spelled that wrong) or surgery to put rods down the middle of his bones. She stated that even if they put rods in he is still at high risk of fracture/break just not a total break because of the support from the rods. She is also suggesting that we get a molded brace for his left side to help keep the leg supported so that can take some stress off his bones. (As parents we are thinking that will help slow him down since it would be made of hard plastic) The Dr. also stated with the tumors growing, and bone weakening this is why Zachary is having more pain, and problems.

So for right now Rob and I have decided we are going to wait to go to Boston at the end of the month to see what they say and go from there. I would hate to go through with the brace right now and then have them say no he doesn't need that lets do something else. We did finally find a stroller for him and he really likes it so thats a plus for us.

So please everyone keep Zachary and our family in your thoughts and prayers and hope we have a great trip to Boston with some much needed solid answers. So as of right now we are just being very cautious with what he does and how he is acting towards things. I can tell you the last couple nights have been nightmares again with him up and in pain, so we are just medicating and hoping that these 3 weeks go by really fast.

First Day of School

Marissa and Zachary. Marissa leaves 1 hr before Zachary which explains why he is in his pj's still.
Zachary outside waiting for the Yellow bus. He was so excited about the bus, but not so much about school.
Zachary & his teacher Mr. DeChick.




Yesterday was the first day of school for both kids. Marissa was very excited to get off and went with no problem. Zachary on the other hand was a little nerveous but thats to be expected considering it was all new to him. He was going to a big school, riding a bus and being away from mommy for 6 hours a day.

The day went by with no problems for either of them. Ok Zachary's side of the story goes like this:

Mommy: How was school buddy?
Zachary: Horrible!
M: Why was it horrible?
Z: My teacher is terrible
M: Why is that?
Z: because he is mean, and all he did was (zach is making motions with his hand as if someone is talking)
M: Well did you keep talking and thats why he did that?
Z: No and I don't want to talk about it anymore.

Well finally by the end of the night I was able to get out of him more info and I really think he enjoyed himself, he just didn't like he has to listen, sit, and go by a schedule. LOL
He was very tired when he got home due to not having a nap in school but that will pass with time also or atleast I am hoping. I don't know if I can stand him being so moody from 330-830 when he goes to bed. Dear god please help us through this phase and make it turn around for how he feels about school.

MRI

Today Zachary had to go for a sedated MRI. It was not a fun trip let me tell you. It all starts when he realizes where we are going so his anxiety level jumps right there, then we get inside University Hospital and he is just flipping out yelling "when are we going to get out of this place, When are they going to knock this place down, why is everyone so mean here." For a few examples. Needless to say people are looking at us like we are terrible for bringing him there.

We get him to the ped's floor and he is just constant whining, and crying and repeating all the above so they give him some versid (I know its spelled wrong) to relax him. Well within 3 min he was so out of it he was like a drunk person. It was sad to see him like that, but I knew it would help him and make me feel a little better. Well they let me go in to put him asleep which was a struggle also. He fought that and it took about 5 min to get him out. They couldn't believe what a fighter he is. Well this 45min-1 hr procedure ended up taking almost 2 hours. Yes I said 2 hours and they never called us in the waiting room to tell us it was going to take longer. I was getting quite nerveous because I didnt know if he was having a hard time coming out of the sedation or what. (He has had that problem a couple times). Well when they came and got me I went into recovery right away and he was a crazy man in there. He was trying to rip the IV out, and had the O2 sat tore off. He was screaming and kicking. I took over for the 1 nurse and he finally started to calm down. By then I had blood all over me because he pulled the IV and I couldn't get him to let me hold the guaze on the hand to stop the bleeding. I was like oh well its my kid and his blood won't hurt me. (People where looking at me funny walking out with blood all over me though)

Zachary normally has a hard time coming out of it or being a puker when we get in the car. So of course I was thinking ok he had a little hard time coming out that means we will have a safe drive home. Well we got almost home (10 min away literally) and he lost it. Thank god my mom was with me so she was able to turn around and take care of him. Then he kept saying "Mom when am I going to feel better?" So when we got home we took a nap together and when he woke up he was back to the normal Zachary we all know so well.

Now we just have to sit back and pray that we get good results. I have a terrible gut feeling and know I will not be sleeping well until Tuesday or Wednesday when we get the results. Darn Holiday is messing us up with getting it sooner. So please will you all say a prayer that we get positive results.

Vegas Pictures

Just wanted to share a couple Vegas Pictures.


Robert & his brother Anthony. Aren't they such goofs!!!!!!!!!!!

Me & Anthony



Robert & I at Sharks Reef (Mandalay Bay Resort & Casino)

Robert & I at Caesars Palace

Robert & I along with our friends Ronda & Scott Kehoe at Caesar's Palace

We are back!

Rob and I just got back early this am from our vacation to Las Vegas. We had a awesome, very relaxing time. It was so nice to lay at the pool in 105-110 degree weather with misters on us soaking in the rays. I will post some pics later.

We get into Syracuse and 1 of our suitcases was missing. Yep, no where to be found. Well at this very moment they still don't know where it is. I was bummed because it was the suitcase with the kids surprises in it, along with all my hair stuff (flat iron, hair styling stuff, and brush.) and I have school this weekend. I am not looking to pretty. LOL

When I get more time I will post some pics and put a update on for Zachary. Alot has happened over the past week with him and I am just ready to throw the towel in on everything. I never knew I would ever feel like this and hope that there is a light at the end of the tunnel very soon. Dear god, please help us through this time and guide us down the right road for the journey.

Nothing New

We are still waiting to hear from Boston regarding Zachary. I have called to see whats taking so long and of course 1 specific Dr. hasn't sent the info over for them to review. I will be calling them again to remind them.

Marissa started religion camp today for 2 weeks. She will be going from 8:30-12 everyday. Was she happy? No way because she had to get out of bed before 10:30 am. Oh well I told her its only 2 weeks and school will be starting to get used to it again.

Rob and I are leaving for LasVegas on Saturday for 6 days. Kids will be with grandparents so we have adult time. We will be seeing the brother in law that lives in Vegas, and some friends are coming out too. So some relaxation time and site seeing is on the agenda. Yeah we know its like over 100 but thats ok with me I wont be working.

School is still going for me. I passed 101A and now started 101B. It was tough and I am sure its only going to get tougher so sorry if this isn't updated as often.

The Kids Are Home

The kids got home Saturday, after being gone for 1 week camping with their nonnie Judi. Rob and I didn't go because we are going to Vegas in a couple weeks. I missed them, but it was a nice break on the other hand. They got home Saturday and Zachary hasn't stopped yet, and Marissa & I have already had our usual arguments. I can't stand this age and she is learning real quick she is not going to get away with it anymore. We have taken thing away and will keep going at it if she keeps it up. Any suggestions from you guys out there? Zachary was hanging all over me in church on Saturday and I pulled my back out from that so Sunday I was very uncomfortable and still sore today. I guess I didn't realize how much he really does hang on me. Well he is 5 and we need to end that pretty soon because I can't be with a back out all the time.

We got Zachary's teacher for kindergarten in the mail (but we are working on it being changed or he will go to another school) and still waiting for Marissa's information.

We spoke to the orthopedic dr. for Zachary on Thursday and she is happy we are going to go to Boston for another opinion. She recommended Boston or NYC. She told us if we need anything or help with anything to let her know and she will get it for us. So now we just sit back and wait for them to review his charts and go from there for an appointment.

Well off to another days work, 10 days till out vacation and counting!!!!!!!!!!!!

So Proud!!!!!!

We are so proud of our little guy. Saturday was the picnic for his baseball team and unfortunately Zachary was unable to attend because he was going on vacation with his sister and nonnie to see all his cousins that are from all over. Well Zach's coach called and wanted to bring over his trophy so he had it, so Rob told him come on over. Well when coach Mike got here, he had 2 trophy's for Zachary. Zachary got the typical trophy for playing baseball then got MVP for his team. In the picture the trophy on the Right is that special trophy. So here it is his 3 trophys for baseball this year.

This is all 3 trophys. 1st one is from the old timers game (which means kids are ineligible to play in this level next year. Zachary's age is ok for that level next year but Dr's said he can't play due to his condition.) In the first trophy Zachary was honored with the game ball so its sitting inside the baseball glove. 2nd trophy is for playing baseball this year and the 3rd one is the special trophy for MVP. We are so proud!!!!!!!!!!!!!
There is the face plate upclose. Engraved and all just for him. He is going to lov eit when he gets home. We have them sitting on the table so when he comes home he will see them immediately as he walks in the door.

Marissa's Flower Camp

Last week from Tuesday-Friday Marissa did a summer learning camp at BOCES. There where a few topics to choose from and Marissa picked Flower Arranging. Well below are some pictures of the things she made.

This was a bouquet that a flower girl could carry.
I don't know the exact name of this arrangement, but I say its a table arrangement and on the table it sits.
This is a wrist corsage.
Here is a simple arrangement with a bow she did on the first day. Marissa was quite bummed when the week came to a end. Now we know for next year to sign her up again for another course since it was so much fun for her. Now I have a little flower arranger and no reason for my table to be empty anymore. Beautiful work Marissa Elizabeth.

Layouts

I finally got to work on some layouts Friday night at a crop I went to. A couple aren't complete, but will be as soon as I finishing labeling them. I didn't bring the proper cricut cartridge with me to complete them. I was very happy with what I completed and now have a nice start to our Disney Album from April 2007 trip.

The picture didn't turn out the greatest with the flash but this was in Downtown Disney at Legoland. I did this layout on textured paper to look like legos. I made some seaweed and little blue fish faces to go with the picture on bottom right which is of sea life (fish, crab, shark & seaweed)
This is obviously our family meeting Tigger. (Again the bottom Right picture didn't turn out good in this pic due to the flash. Poor Marissa can hardly be seen.)
This was the kids meeting eeyore. I still need to put the title on there but here it is anyway. I think I am going to change the matting on the pictures also, to match the colors I cut eeyore out in instead. I am actually liking only using 1-2 pictures on a layout which was a huge change for me. Hope you all enjoy!!!!!!!!

Zachary in the Paper

Just wanted to let you all know The Citizen did a special article on our Zachary. I will publish the link below incase you want to check it out. The article was very touching and we had many people call us and tell us they didn't realize Zachary has the medical issues he has or that the article made them cry. It made us cry too. With all the friends/family/faith we will be able to get everything figured out and give him the best treatment possible. We are looking into taking him somewhere for another opinion just to make sure. We already had 2 opinions but you can never be to sure. It's not like we are dealing with something as minor as tonsils out, we are talking things that can effect him for life and I want only the best for the little guy. Thanks to everyone that has called and spoke to us even for their first time with out feeling like we thought they where being nosey. (Yes alot of people actually said they had wanted to ask before what was wrong because they can tell something is not right, but didn't want to feel like they where being nosey. They figured since it was in the paper they could ask more and by others asking more it has helped us in many ways.)

So thanks to everyone!!!!!!!!!!!!!!!!!!!!!


Link to the page: http://auburnpub.com/articles/2008/07/16/sports/sports01.txt


(you may have to copy and paste that link sometimes the hyperlinks don't work for me)

A Fun Weekend

This past holiday weekend & Marissa's Birthday we went to New Hampshire to watch a friend of ours play baseball. Zachary was beside himself getting to see JP and watch some more baseball. Marissa got to celebrate her bday at the park, we took her shopping and then took her to Olive Garden for dinner. She was excited because she has been asking to go there.

While in NH the kids got to go on the field during practice, check out the dugout, and Zachary got to go in the clubhouse/locker rooms. JP was going to take us all through there but I didn't think it was a great idea with Marissa just turning 12 and not knowing how the guys where dressed I didn't think it was a great idea. Well good thing because Zachary comes out and says "Sissy there where naked boys in there" It was the funniest thing to hear him say that. The things kids come up with and with Zachary you never know whats going to come out of him.

Zachary and Brett Cecil. He didn't pitch Friday night so he was sitting behind us and Zach kept him company.
Marissa (on her bday) with JP Arencebia before the game
Zachary with JP & Brett on Saturday night before the game.
View of the field from out hotel room
View of the hotel from our seats in the park. If you look at the middle glass section and the middle row on the right there is a light in the window that was our room.
Getting some tips from the Manager & JP
JP, Zachary, Rob, & Marissa being a stinker
Watching the game (Zachary, Marissa, Rob and behind Rob is Brett Cecil)