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.