...............Disney Trip

Hello everyone. We are off on our Disney trip that Zachary got through the Dream Factory. We were very fortunate to have this granted to us. Zachary is in heaven here in Disney World. We left on Thursday via a Limo to the Rochester airport. We kept that a secret from Zachary and he was so excited he couldn't sit still in the Limo.


Once we got to Orlando we had to sit on the tarmac for about 10 minutes because it was raining and lightning and with the ramps being metal we couldn't go on them. We got to Allstar Music with no problem, but man once we got there that was another story. We had 1 person work the check in desk and a bus load of people coming in. Then they had us at the very last building. We got moved up 1 building to help with some walking for Zachary. We planned on going to Epcot but it closed at 9 pm and by the time we ate dinner and got checked in we wouldnt of had much time so we went to Downtown Disney in the light rain. We did some shopping and had a nice Ghiredelli Ice Creams.

Today, Friday we started off at Hollywood Studios for breakfast at Hollywood Vine & Dine. That was very good. We hit Toy Story Mania first then worked our way around the park. The highlight of the day was Zach meeting Phineas & ferb. Those are his all time favorites right now. After meeting them we did the whole park and a couple rides over. We didn't have dinner reservations till 545 but were hungry since we didn't do lunch so we stopped in early to see if we could eat early and they took us right in. So after we headed to Epcot since we didn't make it last night. We did the important things there. The kids had no interest in going to the World Showcase. Probably the next time we go they will understand it more and enjoy it. We did everything they wanted and went in some gift shops again then headed back to the resort for a quick snack & beverage and went to the pool. Now they are passed out and resting up for another fun filled day tomorrow at Magic Kingdom before we are off on the Disney Dream for 4 nights 5 days.
I am trying to post pictures but for some reason blogger isn't agreeing with me so check out my facebook page and you will see them all.

................1st day of School September 2011

Yesterday was the first day of school for both kids. Marissa is entering the 10th grade and Zachary is going into 3rd grade. They both have grown up so much it hard to believe this much time has gone by. I guess the saying is true, Time flies when your having fun.


Both of them said they had good days and no problems. Thank god for that. We wouldn't want to start the year off on a bad foot would we? Zachary has Mrs. Frahar & Marissa has a lot of teachers since they changes teachers for every class. I am looking forward to a great year and hoping for much success for both children.
Zachary at his desk in his class room. I told him he won't get away with anything because he is right near the teachers desk. LOL

..............Dream Unveiled

Sunday the members of the Dream Factory came over and announced Zacharys dream to him. He was so excited he didn't know what to say. Yes we know Zachary at a loss of words? Anyway, they visited for a bit, announced the trip to him and then visited some more. Zachary immediately ran into his room and counted the days on the calendar. He told them he is very excited because he gets to see Phineas & Ferb. (Oh dear I hope we can find them while in Disney) Jim told Zachary he has 2 things and 2 things only to do while on his trip, "Smile & have a good time, and to take lots of pictures." Zachary sighed at that because I take so many pictures he gets annoyed with me. Oh well its the memories we need to capture. LOL

Kate was showing Zachary all the paper work. He was totally into looking at it all.

They also gave him a beautiful picture frame with the Fab 5 on it. (Mickey, Minnie, Donald, Goofy, Pluto)


A few days has gone by and Zachary just keeps counting down and asking lots of questions about the Disney Cruise. I have to keep telling him I don't know many answers seeing I have never cruised with Disney before. But i keep showing him pictures of the ship and brochures to give him an idea. He is going to flip out when he sees the size of the boat. I honestly think in his mind the boat is the size of boats on the lake. Just wait and see buddy I tell him because they are HUGE!!!!!!!!!!!

Today I get a phone call from Jim at the Dream factory and he tells me to get a pen and paper to write some info down with. I am thinking what could he possibly have to tell me know seeing he was just here on Sunday and today is just Wednesday. Well he wanted to give me info on the Limo that was picking up us to take us to Rochester Airport and bringing us home. Yes I said a LIMO. I just can't believe it. Zach has never been in a limo and will just love it I know it already. We have decided not to tell Zach about the Limo until the driver comes to the door to get him. I just can't wait for the next 2 weeks now to take some awesome action pictures. I just want to shout out to the Dream Factory again for making this little boy such a happy boy. Through everything he has gone through and will continue to go through this has definitely put all that in the back of his mind. We are so grateful for all of this to happen too. I have offered to volunteer my time when possible to help the organization out. Its the least I could do seeing all they have done for us.Thanks again Dream Factory Jim & Kate you have been awesome to work with.

................Hematology

A couple weeks ago I took take to a hematologist because for a couple of years now I have been telling his peditrician he bruises so easy and gets a good size hematoma under the skin in the bruised area. They are very painful for Zach too. Ped keeps saying its all in the typical spots of bruising for a kid so no need to worry. Back in February when they drew blood for Zacharys surgery there was a clotting issue and I thought something was funny. They redrew a few hours later and said that was better. Well the next day he had surgery and they had to give him a transfusion because he lost alot of blood. Now, that was a concern to me because this surgery was half the time and work than his previous surgery because all the drilling was already done. They were just pulling out the rods and replacing with new and a bone graft. Yes I know not that easy, but you get the point they didn't have to drill all the original drilling and cutting of the bones and so on.

Well since then the bruises have gotten worse so I mentioned something to his gentics Dr. and she totally agreed it should be looked into. Well I am glad we did look into it because he has to go back for more labwork because he is not clotting or clotting very well, which could/would cause the hematomas forming when he bangs his arms/legs. They are thinking he might have Factor 8 or Christmas disease. We will know more after his next appointment and lab work. Just have to schedule it since school is starting schedules are crazy right now.

Last week Zach was at the restaurant with Papa and cutting tomatos with Debbie (the cook) and sliced his thumb. Needless to say he bled like crazy. I of course wasn't there my father in law was and said he has never seen someone bleed like that. So now Zachary is not allowed to go anywhere without Rob or I since people don't listen to what we tell them. My FIL said it took about 10-15 min to get it to stop bleeding. I personally would of taken him to ER for stictch but by the time he got here the skin flap was kinda sticking. Always something here.

On a positive note Rob and Zach went to the NASCAR race in watkins glen. Zachs first NASCAR race and LOVED it. Marissa is just hanging with her friends daily as summer vacation is drawing to a end. Routine will be back in order next week and it makes for 1 happy momma. In 3 weeks we go on Zacharys Dream Factory trip and he can't wait. Not sure who is more excited Zachary or Me. LOL I will post pictures when we get back, so until then or atleast next week on the first day of school please all have a safe and Happy Holiday weekend.

..............Camping with the family

In the gift shop they have a huge stuffed bear so every year we go and take Zacharys picture with it to watch him grow over the years.

This past weekend Robert, Zachary & I caught up with the rest of the family while camping at Allegany State park. Every year Robs family/cousins go camping for a week. We usually don't stay the whole week as we have to use our vacation time for Boston trips often. This year it was all family & friends on the trail. Yepper it was all 13 cabins of the pollocks in the woods. LOL

It was wicked hot on Saturday you could barely sleep, which is unusual for Allegany. Usually it gets chilly at night and you sleep great. Sunday was beautiful, and Monday we had about a 10 minute storm then it got real nice again. We left on Tuesday. I went to the casino with Uncle Ronnie & Nonnie and broke even after almost 2 hours of playing black jack. I love that game. LOL I would of stayed longer but it was our last night and I wanted to make s'mores.

We stopped on the way up the mountain and took a picture of the kiddos. Marissa, her friend Bethanni & Zachary.

Marissa stayed at camp with Nonnie & Uncle Ronnie. Zachary came back home because his leg isn't fully healed and he was hurting from all the walking around visiting and playing and plus he has his summer school program. We are home and having a somewhat relaxed end of the week. I am low on kids this week (everyone on vacation) so I have been able to get things done in the day and working at Wegmans in the evening. Got to keep my mojo going for that so I can go back to school in January. I am off to a great start and hopefully it will stay that way.

On Sunday they had a Laua themed party at Mary's cabin. It was alot of fun and many people dressed up and others just came for the fun. They had some great drinks, and Zach enjoyed dressing in his skirt & coconut bra. He is a stinker I must say.

..............Nothing figured out

Well we are out of Strong and they really didn't figure anything out after being there for 1 week. They kept Zachary on the EEG & Video monitor in hopes to catch him with 1 of his episodes. Well after 1 long week, nothing but Murphy's law happened Thursday night. We were discharged about 11 am on Thursday am and Thursday night about 9:30 pm Zachary had 1 of his episodes.

We did decide to take him off his seizure medicine in hopes we might be able to catch a trend of these episodes. But actually, he has been doing great with out. He only had the 1 episode in over 1 week of being off the meds. I am happy about that, but still want some clarification of why he has these episodes. By taking him off the seizure med were were able to cut out all evening meds. I have 1 happy little boy on my hands let me tell you. So the next step is to monitor the episodes (frequency/intensity/triggers) and report back to the doctor.

Zachary started back to summer school today. He said it was ok. He doesn't like to talk about school so I didn't want to keep asking questions if it was going to put him in a bad mood because then that means I have to put up with it the rest of the day:) This weekend we leave for 4 days camping and we all can't wait. We need a little break and get away. I am excited because I am going to run a couple trails while there since I will have the time.

Its been hotter than heck here too. In the low-mid 90's and the humidity is awful. By thursday its going to be 95. I am NOT looking forward to that. I don't like the heat. 80 is perfect for me.

................Busy, Busy

Oh my gosh. I have neglected this blog and I apologize for that. Things have been wicked crazy around here. The end of the school year has come and gone. Marissa is going into 10th grade and had a 88 average overall. Was nerveous about having to do summer school for global but she pulled it off. Zachary is going into the 3rd grade and doesn't need AIS math help anymore. Very proud of both of the children and their grades.

Last week was Crazy, Zachary had a eye appointment on Tuesday in Syracuse, on Wednesday I had a physical fitness test to take for the County Jailer test I took. I scored a 85 on the test and passed all the physical fitness part. Part 1 we had 1min45sec and I completed it in 58 seconds. Part 2 we had 1 min 45 sec and I completed it in 1min 15 seconds, part 3 we had 67 seconds I did it in 31 seconds and the last part (hardest part) 1 mile run in 10 min 15 seconds and I finished it in 10min 13 seconds. Just made it and thats all that mattered. I was worried about the running because my miles have been only around 11:30 so I had to push myself a little harder this time around. Then Zachary had his 8 yr physical. Zach had a bday party and I had training at Wegmans on Thursday. Friday Zachary had to have a Ultra sound on his kidneys and nephrology appointment. The week flew by so fast I didn't know if I was coming or going. In between Marissa babysat 3 days out of the week for people and is loving earning her own money. I am happy because it teaches her it doesn't come so easy and you tend to have a harder time spending it if its yours and not mom and dads. LOL

Marissa turned 15 on the 5th of July. Its so hard to shop for a teenager like her. LOL She wants everything under the sun but we went ahead and got her a pandora bracelet. Yes I know my 15 yr old has one and I don't. Oh well Christmas isn't to far off. LOL No party for her this year. She had a couple girlfriends over to go swimming since it was absolutely beautiful out. It has been 2 days and I am still feeling the pain from the sunburn from being at the pool. I don't know why I bother using sunscreen since I burn anyway.

Over the 4th of July weekend we were lucky enough to have a friend get us tickets to a Pittsburgh Pirates game, and another friend got us his hotel discount so we had a nice couple of days away and cheap. Our seats ended up being in the suites. The kids loved it up there and seeing as hot as it was, it was nice to have access to a/c every so often to cool off. The pirates won 5-3.

Today Zachary was admitted to Strong (Golisano childrens Hospital) for 24 hr eeg testing. We do not know how long we will be here though. They say 24 hours, but if they don't get enough readings they keep you till they do. Zach is relaxing right now but earlier he was quite upset. I can't say as if I don't blame him. I wanted to take a picture of him but he said absolutely no pictures. (I will try to sneak atleast 1 at some point).

I am working 3 jobs to prepare to go back to school. I am doing the daycare, office at the Doubledays, and cashier at Wegmans. I know crazy but I have a plan.

Next week we are back to Boston for a check up for 1 day. Hoping all is well. It seems to be from what we can see/notice but only the xrays tell the truth.

The following week is already camping week at Alleganey. We are going down for 4 days and Marissa will stay all week with Nonnie. I am not sure if Zach will stay or come home with us. I prefer he come home with us but its up to Nonnie and him. Other than that, thats about it on this end. i will try to update after Boston.