My Italian Darlings

.............Nothing New

2012-01-23T08:57:00.001-08:00

Just checking in since I haven't in awhile. Nothing really exciting going on around our household. Everyone is staying healthy. As you noticed I said staying healthy, not staying uninjured. LOL

Marissa has been having trouble with her knee again and fell down the stairs last week. Took her to the dr and they did xrays (useless) and said we don't see anything. Well no you don't because a xray won't show any issues with the tendons/ligaments/muscles silly. So they had to order her a MRI so that was another 3 days. She went on Friday for that and we don't go back till next Monday for the results. Crazy if you ask me for waiting that long but supposidely they know best. LOL We are hoping its nothing serious but it is the knee she had surgery on last year giving her the trouble again. Poor thing has a huge bruise on her butt and its sore.

Zach is doing really well at bowling. He bowled his highest score yet 96 game. He was just 3 pins shy of a 200 series too. He is trying to hard to reach these milestones, so he can get new badges, but I keep telling him he has to be consistent too. He still poops out by the time he gets to game 3 but in time he will be bowling 300 games not series. LOL He loves his bowling and we are so happy he has found something to occupy his time. As a family we went open bowling last weekend and had so much fun. He can't wait to do it again. He wants to go every weekend but we can't get him to understand bowling is expensive if you aren't on a team. It cost the 4 of us to bowl 3 games $50. Oh well it was fun and thats what matter most.

School is in full swing for me and i am really enjoying it this time around. It seems like less stress and they want you to succeed. But I can say July can't come soon enough for graduation because my schedule is killing me. I am exhausted but have to keep plugging along because not working isn't an option at this time unfortunately. So please keep me in your prayers for a successful school year.

.........Another fall

2011-12-09T05:38:00.000-08:00

Saturday Zachary had another fall. Poor little guy was just getting out of the van to go into the vets office with out Vivi for a shot and as soon as he stepped out he went down. The parking lot was pure ice. He said he was ok and jumped right up. Well the nerveous mom that I am was thinking instantly I am taking him for a xray because in October he wasn't 100% healed on his femur and I am NOT taking any chances with him.

Anyway as the day went on he said he was ok, just his arm hurt a little. He could move it, was using it fine, and actually bowled very well (4 strikes and plus he is right handed while this is his left arm he fell on) for the day. So I gave him some tylonal thinking he is ok since he has done the above and it wasn't to swollen. I did tell him if it was sore on Sunday more than today I would take him for xrays. Sunday he said it was fine and felt ok. So we went to church, decorated the tree and just relaxed all afternoon. About midnight he woke up crying in pain. Said his arm was throbbing and he couldn't sleep. He told me he wanted the strong stuff.............so with that comment from him I know it really had to be hurting him. I give him his loratab and within 1/2 hr he was resting peacefully. So on Monday morning I had him at the clinic as it opened at 9 and had xrays taken of his arm. That visit is a whole story in itself so I will spare you those details and tell you they said they didn't see anything wrong. Well I know better and the xrays didn't look right so I called his ortho in Syracuse. Got him in to see Dr. P. Sure enough she said she believes she sees a fracture in the upper part of the humerus. His arm is very swollen and he is guarding it and when she touches it she pull it back like it hurts. So he is in a sling because its to high to cast. He is not a happy camper but will get through it I told him. Ge goes back in 2 weeks for a check up and we are hoping it starts to heal by then. He is a slow healer and found out from the xrays he has the same cysts on his arm as on his leg. We didn't know they were else where.

Dr. P also suspects possible sciolosis. So he will have xrays to see if its really that or if it looks that way because of how he was holding his arm or to high of a shoe lift. I am hoping its 1 of those issues and not truly Sciolosis. My poor baby doesn't need anything else wrong. He is really down this time around and having a hard time dealing with it. I feel bad for him as a mom because there is nothing I can do to help him. We try to protect and limit him as much as possible but this was just a freak accident. He was out of the van before I opened my door to realize it was pure ice.

So I am hoping he heals fast so he can realize every injury isn't as bad as his leg is.

.............Sleep Study

2011-11-23T11:50:00.000-08:00

Zach went almost 2 weeks ago for a sleep study test and we just got the results. I hate waiting for test results. I know no news is good news usually but you never know if there is any news (good/bad) if it takes them that long to read the results.

Anyway, Zach does not have sleep apnea, THANK GOD. But he does have many sleep disturbances and they have diagnosed him with RLS (restless Leg Syndrome) Yes like he needs something else wrong. Atleast now we can try to fix/help him and go from there. They are going to do lab work to see were his iron levels are because that can affect the RLS. If they are ok then we will have to medicate to help him. If iron is low then we will start with iron supplements and go from there and see if things improve. I am sure his iron is low, mine always is and he is always very pale (sign of low iron), and always sleepy.

Zachary got his report card and did very well. Marissa did well on hers too (not sure if posted before on hers). Tomorrow is turkey day and we can't wait to have a much needed family day with some good eats. Happy THanksgiving everyone.

...............Halloween 2011

2011-11-03T10:45:00.000-07:00

Halloween this year was pretty low key for Zachary. He doesn't really like going house to house so we took him to just a few houses of people we know. He started out by going to Lenny & Jackies across the street. Jackie was the wonderful person that made his costume of Phineas this year. Thanks Jackie it was perfect. Zachary has been wearing the head around the house and wants to wear the shirt to school as a regular shirt. If it has anything to do with Phineas & Ferb Zach is right on it.

Zachary & The Caputa Family

So after visiting there we headed out to Nonnies house and to a couple of her neighbors then off to Mrs. Brazees house. Mrs. Brazee is his 2nd grade teacher who LOVES to give out kisses and always puts new lipstick on for the kids to leave lips on their cheeks. Last year Zachary would try to tell her no kisses, but now that he doesn't have her he loves her kisses. LOL So Mrs. Brazee & her husband found some wax lips and she had them on for him. She even gave him a pair for mom to wear and tease him with.

Zachary & Mrs. Brazee. We just love her.

After that we headed home to pass out candy to the trick or treaters (we were gone not even 1 1/2 hr) to find out we ran out of candy already. I was like you are kidding me. Marissa said nope all 7 bags are gone and I only handed out 1 piece to each person. What happens is down the street the amusement park people (SOFO's) set up a stand where they give out candy apples, caramel apples, cotton candy, popcorn, caramel corn and the whole city comes by to get some then just hit our neigborhood. Kinda puts a damper on the evening for us because you get all sorts in the area for the night when its usually a very quiet neighborhood. So since the job was done, I decided to head to bed at 8pm because I wasn't feeling good anyway.

Zachary also had a halloween parade at school and a small party I was able to attend and help the kids out with. Its so cute to see them all get excited and dressed up.

Zachary in school saying ok mom enough pictures already.

Other than that, nothing really on the update side. Zach has had some pain issues but nothing tylonal hasn't been able to take care of. He has had only 1 seizure in the past month which is good they seem to be staying away.

Marissa did very well on her 1st report card in high school. She had a 88 average and did very well, even with mom nagging her to make sure things are done and handed in. She is dancing 3 nights a week and just doing odd babysitting/dog sitting jobs. She is loving the fact of having her own money thats for sure.

Marissa being Marissa which is being goofy. She was wearing Zachary's Phineas head around.

...............Boston Appointment 10/14/11

2011-10-20T06:11:00.000-07:00

Friday we went back to Boston for an appointment with Dr. Spencer for Zachary. The weather was kinda yucky on and off rain the whole way there and back. Sometimes so hard you couldn't see in front of you. Coming home as usual we hit traffic on the Mass Turnpike.

We got to the CHB and went right in for xrays. The xray tech this time was really nice and joked around a bit with Zachary. Right up Zachs alley if you ask me. When he would load the xray on to the computer I would stand right there and look at it and knew it still wasn't completely healed. I pointed the area out and he agreed. First time a tech agreed, usually they can't say anything but I think he knew I have seen enough of these xrays of Zachs leg. The xrays of the tibia looked GREAT! But I was concerned for the first time of the fibula. I commented on the looks of it and he said it looks to be the bone is weakening.

Once done in xray we went up to Ortho. We sat down and Zach was goofing around with the clowns that visit throughout the hospital and within 5 minutes we were called into a room. Did I ever mention how I love getting right in and out? Dr. Spencer came in and we discussed how he was feeling, remeasured is length difference and she agreed the 1 1/2 inch lift if perfect for him. She asked Zach a couple questions and he admitted he has pain. This was a first for Zachary. Usually he doesn't admit to it because he doesn't want more medicine, and doesn't want me to call the Doctor. So she said he is having the pain because the femur is only 50% healed. It does have some nice bridging of the bone graft but not enough to release him yet. He sure tried to get her to release him to do many things but she compromised with him and is allowing him to do upper body things only in gym, and bowling. He wasn't to happy but accepted the fact. He would keep saying, "Dr. Spencer I have a question, Can I do this or that?" And she would just respone, "No Zachary I don't think thats a good idea" he would then repeat but ask about something else. It went on for about 5 minutes before she just busted out laughing and said, He sure will try to get his way won't he." We were like uh yeah try living with him. LOL

So then I questioned the fibula and the way it looks. She was concerned too and said the tumors/Non-Ossifying fibromas have gotten bigger. So what that means is the bone is getting weaker in areas and is at risk of break/fracture. She said she wants to watch it for now because its not a weight bearing bone and if they have to go back in and do a bone graft for the femur again they will bone graft the fibula. So we just need to watch and make sure he doesn't complain of more pain than usual in that area. So the plan is to give it 4-6 months longer to heal, if it isn't healed then we will discuss surgery again for another bone graft of the femur and then the fibula. Zachary asked if he could wait till the 6 month mark because it will be April and the Red Sox will be playing and he wants to go to a game. Dr. Spencer said thats ok as long as he doesn't have any problems or complain of anything.

So all in all it was a ok visit, but didn't take any concerns off our minds for the little man. Dr. Spencer did give us a script for a medical pushchair for distances for the little guy since he doesn't last long walking anywhere. Now to hope insurance will cover it. I am sure its going to be a fight but we shall see.

.............Disney Trip, Trip Report

2011-10-10T04:11:00.000-07:00

Our baby for 4 nights/5 days

Sorry this is so late in being done, but when we got back from Disney things were kinda crazy. Zachary had to go for some blood work ASAP because something wasn't right and they had tried contacting us while on vacation but with having our cells off on the cruise we didn't know till we got home. Anyway, his blood work was done and they said everything is ok now. Not sure what that was all about, but I am looking into it once I get a copy of the lab work to review it and ask our own pediatrician what it all means.

So on to our Disney report. Please bare with me I am sure it will be long and lots of pictures but so worthwhile to read.

On the morning of 9/22 a large black limo pulled up in front of our house and at that point I knew our vacation had officially started. Zachary came out the front door and was surprised with what he saw. He got very excited and couldn't wait to jump inside. This was his first limo ride and he checked out every inch of the inside from our house to the Rochester Airport. We got to the airport with plenty of time to check in and had no issues doing so. Our flight was on time and seemed to go by pretty fast. Once in Orlando we had to wait on the tarmac for about 15 minutes because there had been some lightning and we couldn't pull up to the gate to get off d/t the gates being made of metal. I was kinda anxious to get off the plane because I don't like to be confined any longer than I have to be in a small area. Once we got off the plane we went directly to the Magical Express and got on our bus to go to the Allstar Movie Resort. It took a little longer to get to the resort because our bus driver was taking his sweet time driving and going really slow. Doesn't he know we all have someplace to go? DISNEY!!!!!!!!!!!!

Zach inside the limo all excited.

Once at the resort it took a little while to check in seeing they had 1 person working the desk and about 10 people in line. I was a little disappointed to learn there is only 1 bus stop at the resort and its at the front and our building was 1 of the farthest buildings on the property. To an adult it doesn't seem like a long walk (maybe 5-7 min) but to a child that can't handle alot of walking thats forever. They moved us up 2 buildings after explaining his issues but that was really only about 1 minute shaved off the time. Oh well we set off to our room and relaxed for about 30-45 minutes. It was sprinkling so our plans of going to Epcot were cancelled. Instead we went to Downtown Disney. I figured at DD we could go from building to building without having to go out in the rain and still get to see a few things. Once at DD it was sporadic sprinkles so it wasn't to bad at all. We walked through 1/2 of DD stores and enjoyed a nice fudge sundae from Ghiradelli's. What a way to end the evening.

Legoland in Downtown Disney

Friday morning we got up bright and early (630am) and all got ready for our fun filled day. We were heading to Hollywood studios for our 830am breakfast reservation at Hollywood Vine & Dine. We got to the park and I immediately went to guest services got our pass for Zachary to use his wheelchair/push chair as a stroller in the lines and that he can't wait in line due to his ADD/ADHD and being in the sun bothers him for any length of time. We got right into Hollywood Studios before rope drop and I just love that feeling. The park is so empty and a great photo opportunity.

We get to HVD and get our table right away. Character there that day were Special Agent Oso (we never got to meet him though), Handy Manny, and a character from the Little Einsteins. I forgot her name already but the kids know. LOL B'fast was pretty good and Zach was more interested in the characters, so we told him they won't come over to the table until you eat and they can see that. Well needless to say he ate almost 2 plates of food and was set for the day he said. After some quick visiting with the characters he was ready to go on his way. After all he only wanted to be at that park was to meet Phineas & Ferb. Well mom had other thoughts, I wanted to get to Toy Story Mania first before lines got to long. So needless to say mom won the battle and on our way to TSM we saw a couple get engaged. It was such a happy & magical moment. How cool would it be to get engaged at Disney especially if you love it as much as this momma does? Anyway, we got to TSM and the wait was about 20 minutes. We didn't use our pass this time because it wasn't to hot, the line wasn't bad, and he had a full belly so he was content. The ride was alot of fun and I think daddy took it a bit to serious. He had never rode it before, and really liked it. I think I am starting to convert him into liking Disney:)

Handy Manny, Zachary & Marissa @ HVD

Trouble in the making. Zachary & Stitch

After riding TSM we headed over to the Phineas & Ferb meet and greet. There we had to wait probably 30-40 minutes to see them. Once we got to the front of the line they put the rope up and said P&F had to go check on Candice. So Zach says, thats not true she always checks on them. LOL During that time frame they did a little interactive show with the kids and then P&F came back out. We were first to see them this time around and with that Zach got to spend a few extra minutes with them. That was absolutely perfect because after all this was his Dream Factory trip and his dream was to meet P&F and go on the Disney Cruise. We got lots of pictures and he had lots of smiles. I will say once we got home I checked out photopass and our pics weren't on there. I was crushed to say the least. I called the photopass number and they asked if I knew what day, what time, what park and they would see what they could do. Well after about 10 minutes on the phone the lady found our pictures on someone elses card. I was jumping for joy and she transferred them to our card and sure enough it was our boy all smiles and happy to see his pals!!!!!!!!!!!!!! Another reason I love Disney!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That face is priceless

Listening so intently. Just if he did that all the time. LOL

After seeing P&F we headed around the park to catch some other characters and to ride Tower of Terror & AeroSmiths Rockin Roller Coaster. Both rides were maybe 5 minute waits so again we didn't have to use his pass. (Which is ok with me, I feel funny using it sometimes. We rode TT 2x in a row and then headed over to ASRRC. That we only rode 1x because he said it was kinda strong for him but he did it for his first time. Last time he was to small for it. I will say I was scared for him while on it. I guess I didn't realize it was that forceful or maybe I am a whimp. LOL After those 1 rides we did some more walking around, shopping, and seeing different parts of the park. We went to 50's Prime Time for dinner. Our reservations were for 545 but at 3 we were hungry. Remember we had b'fast at 830 and no lunch so we got in early had a great dinner and man that restaurant is so much fun. They are the funniest people in there. After eating we heading to Epcot. We knew we could do Epcot that night because the kids don't care for the countries quite yet (or I should say Zach doesn't have the attention span for them yet). So we headed there and enjoyed a evening at Epcot. The kids got to do all the rides they wanted and checked out a few of the other things around the park. We wanted to stay for the firework show but it was starting to sprinkle and I heard Cast members saying if it rains it won't go on. So we headed back to the resort and thought the kids could go to bed since we were up early and start over the next morning. Well wrong thinking mom, the kids went in the pool. It was pretty cool to be swimming at about 10ish at night and still be pretty warm out. It was 90-95 everyday we were there.

Marissa's favorite character.......POOH BEAR

The next morning we got up had b'fast at the resort and then headed to Magic Kingdom. We had a very busy day and caught a ton of characters out. We got on every ride and had to use our pass alot that day too. We enjoyed a dole whip, which was a first for Rob & Marissa. Ok the kids had rootbeer floats while we had a dole whip. After tasting ours they wished they had gotten the dole whips. I kept telling them to try different things thats what its all about. At about 330 we took the boat over to Wilderness Lodge for dinner at Whispering Canyon. Zach was so excited to have daddy & sissy experience this place. He couldn't wait for them to ask for Ketchup. Well unfortunately they caught on real quick and refused to ask. It was funny and our waitress was hysterical. She kept harassing Rob and he totally fed into that. Dinner was great and we walked around the resort to check it out. Someday I want to stay there to see what its really like. Someday when I win the lottery that is. LOL Well we head down to the dock to catch the boat to head back to MK and finish up for the night and they put the rope up right in front of us. Told us the next boat will be here in about 10 minutes. I was like really? I didn't want to wait, I wanted to get back to MK and finish up and get a good spot for the parade & fireworks. Well this is where a great day goes bad!!!!!! The next boat pulls up we all load on (about 30-40 people) and we head across the lagoon/lake and everyone is watching and chatting and all of the sudden the boat hits the rock wall by the contemporary by the waterway. It was the scariest moment of my vacation I must say. The captain tried to get the boat to back up and the engine was funky sounding. Then all the sudden you could smell a terrible smell. He shut the boat off and called in what happened. Thank god everyone just sat there and kept calm. All I could think of was Zach on the front of the boat with Rob & Marissa. I stayed inside with his chair. Well it was a matter of 2-3 minutes when the emergency boats came flying across the lake and Zach came flying to me. Once he saw the red lights he got nerveous and started to panic. He sat on my lap crying and shaking and asking to get out of there. Well they wouldn't let us off the boat but instead had other boats help us back to the dock at the WL. Needless to say a few of us got nerveous because what was really wrong with the boat? I don't want to go out in the middle of the water after it hit a rock wall. We made it to the dock and were ordered to not discuss what happened to onlookers, and we had to stay in a roped off area. We could not leave the dock till the Orange County Sheriffs released us. No one was hurt thank god, but my poor Zach was having an anxiety attack because he doesn't like cops/firefighters/ambulances/lights/sirens. For some reason they make him panic. Disney gave us all a pass to go to the front of the line (No Strings attached), brought beverages down on the dock for people to drink (well hello we are in the sun and its hot out and you are cutting into our time here). We all had to leave a report with our names/phone numbers/ages/address. After 2 1/2 hrs we got released but Zach was still flipping out. They would not let us go to the lobby to sit so he didn't have to witness all these people walking around and checking the boat out and taking reports. Finally a very nice tall bald headed (shaved bald) gentleman in a suit came over to check on him because he saw us trying to console him and asked what was wrong. We told him about Zach and how this affects his anxiety and he immediately gave us permission to leave the dock and go to the lobby. He also gave Zach a $25 gift card to buy anything he wanted to help ease his anxiety. It was very nice of him but it would of been nicer of them to let us do that sooner to help him. We would of waited in the lobby till we were released if they let us, but nope not till he had to suffer for some time. Once everyone was released we got on a bus to the MK, because Zach kept saying he was not getting on another boat. Not even the cruise he said. Well this momma got nerveous because usually when he says something he sticks to it. I just tried to let it go and not think about it because afterall, kids feed off of us parents so I thought if we didn't react he would be ok. So off to MK and have some more fun. We didn't get to finish everything we wanted to but made sure to get in the rides Zach wanted. Marissa drove the car on the racetrack and I can tell you I am so not ready for her to start driving in less than a year. LOL We missed the parade but caught the fireworks show. On our way out we stopped at a few shops and did our shopping. Zach bought a P&F tshirt with his giftcard. Well it didn't last long because we went across the street to the main street bakery and he set it down to look at something and it disappeared. We asked if a worker found it and the girl was not very helpful. She said no if it was found it would be at City Hall across the street. So we went there knowing it wouldn't be there it just happened all in the matter of 10 minutes and I am sure when they find something they don't run it right over and we were on our way out so I didn't want to wait around to see hours later. Well the girl in CH was amazing. I explained what happened, told her how he got the shirt and she was like really? Thats terrible. She went out back and came out about 5 minutes later and said someone will be coming with a bag and his shirt in it. She didn't say they found it specifically so I am thinking she called the store and they were sending another over. I had the receipt to show them it literally just happened and it was his shirt to help make him feel better. Sure enough about 5 minutes later a lady walks in with the exact shirt for him. He was so happy and all smiles. We headed back to the resort and again at 11 pm the kids went swimming while this momma did 3 loads of laundry. Hey the pool was right next to the pool and it gave us fresh clothes for the cruise.

I loved our matching shirts!!

On Sunday we got up put our luggage out for them to deliver to the cruise and we headed to b'fast and wait for the Disney Cruise Line Bus to take us to the port. We met a few people in the lobby that were going to, so we passed time chatting. Once the bus arrived we loaded and were on our way in less than 10 minutes. It was about 1hr 15 min ride. Once Zach saw that ship from afar he looked at me and said I can't wait to get on that big ship. This momma was relieved. I didn't mention to him about the prior days incident and was excited he had changed his mind about getting on a boat. Well I say ship he says boat, which ever he got on and a whole new world of fun started there.
Our bus to the ship

Check in was very easy and fairly quick. We registered Zach for the kids room so he could have fun while we saw shows. If it just worked that easily for him, NOT!!!!!!!!!! He would not leave our side. He was afraid something would happen to the boat he said. Marissa was able to get him to go 1 night but we both got texts on the ship phones they have he wanted to be picked up and was crying. So we left the show to go get him. Once on the ship we checked out our room, then walked around the ship to get our bearings. We had to be on the outer deck for our safety drill at 4 pm. Once done we had the sail away party. That was pretty cool, they gave the kids streamers and played some really cool music, and did some awesome dancing. Alot of the adults had nice beverages to sail away with. Shortly after sailaway we headed to dinner. Our first reservation was at Enchanted Garden. Our servers were Sergio & Deniz. Very awesome with both kids. Zach had his usual of salmon and Marissa had Chicken. Niether kid would try anything new. After dinner Marissa headed to the teen room and we didn't see/hear from her till about 2 am. Rob & I went to the Golden Mickey show. Very cool it was, the girl doing the lead of it is from Buffalo NY. Thought that was pretty cool.

Our waiter made Marissa a bow for her hair and Zach a Peter Pan hat out of the napkins.

On Monday we were at Nassau Bahamas. We got off the ship and did a little shopping since we didn't book any excursions. We didn't care for the Bahamas I must say. Very dirty, broken walkways, they drive like crazies, and they don't let you look at anything without mobbing you. So the kids got a couple souveniors and wanted to get back on the ship. So we were ok with that. We immediately changed and went to the pool deck. I think we rode the aquaduck about 10x that day. I have a video of us going down it so I will try to load that in a different post. We relaxed the rest of the day as a family. Then off to dinner at Royal Palace (I think that was the name LOL). That dinner was ok. I wasn't to keen on it but thank god for the food counters on the pool deck area. As Marissa would say thank god for the banana/strawberry ice cream. That night was a comedian with his puppets so we took Zach to that show. He died laughing the whole time. It was the funniest show I have seen in a long time. Just like many we caught character meet and greets through out the day too. When we got back to our room we had a invitation for us to go to a private M&G for the Make-a-wish/Dream Factory & any wish granting organization children. It was alot of fun. They had photographers there, while Mickey & Donald came in. The kids all had a 1 1/2 of fun times dancing on the stage & getting their pictures taken. Disney gave the kids free copies of the pictures in their room the last night of the cruise. before they left 1 of the assistant captains gave them all a stuffed Captain Mickey signed by Mickey. That just lit up many of their faces. There was probably about 15 kids on this trip that were granted trips. Disney also left extra goodies/snacks in the rooms for these kids too. Free gift cards to play games in the arrrcade and so on. I am sure I am missing some of our daily activities and I am sorry about that but we just tried to have alot of fun together so I didn't take time to write anything down. I know bad mom, but I wanted to enjoy the time too.

Captain Henry

Tuesday we woke up at Castaway Cay. Disney's private island and let me tell you, IT'S BEAUTIFUL!!!!!!!!!!! Marissa signed up to go with the teens on excursions so we have no pictures of her that day with us or on the island. Zachary decided he wanted to take a shot at snorkeling. (I have pictures of us in the water but they are not scanned in yet since it was with a disposable camera and not my good camera). Well he didn't really like the snorkeling. He hated the salt water in his mouth and hated the sand in his feet. LOL But he gave it a shot and tried. So this momma went out by myself while daddy sat under a umbrella chair and read and Zach played and people watched. After awhile I came in and we walked around the island. Took lots of pictures and just enjoyed the beautiful views. We tried to get Zach to go into pelican cove the kids section but he wanted nothing to do with the salt water. We enjoyed lunch at Cookies BBQ. Its then it dawned on me to give Zach my little camera to take pictures from his point of view. Well he had a blast and of all things he finds is a John Deere Gator. The kid can't go anywhere without finding a farm tractor. LOL After while we headed back to the ship and relaxed by the pool. Again, rode the aqua duck a million times. Hey after all thats what he told the Dream Factory his Dream was......to meet P&F at Hollywood Studios which was done, and to go on the waterslide on a Disney Cruise. Well he got his enjoyment many times over riding that wonderful waterslide. Dinner that was at Animators Palate and it was Pirate Night. We didn't dress up for it but enjoyed seeing others and went to the pirate party and on the upper deck to watch the fireworks. very cool to be in the middle of the ocean and see a fireworks show. There was another cruise ship off in the distance and they got to see the fireworks too. How cool is that? After a late night we were all off to bed.
Rare Character find, Max Zach was so excited.

Castaway Cay

Zachary took this pictures, Its actually pretty good.

Of all things a John Deere Gator he finds.

Wednesday was a day at sea and a day of relaxing for all. We did your typical b'fast, relax, lunch, relax, dinner, shows, shop, and just hang out. We made the best of our last day on the beautiful Disney Dream. I possibly can't blog all about everything we did because there was just so much. I will say we can't wait to go back again. Disney then took care of all our luggage and we didn't see it until Rochester. they did our airport check in and everything. All we had to do was walk into the airport and go through security to get to our gate. Talk about convenience. That was worth it in itself. LOL We got to the airport really early, you get there when you disembark so we were there about 1030 and our flight didn't leave till 3pm. So to kill time we walked around the airport and found a Chik-Fil-A, and a Krispy Creme Donuts. Right next to each other.....those that have eaten there and don't have either place around home know you have to get it while you can. We were still so full from all the food on the ship, but couldn't pass it up! So we all got something good. Ate it for lunch and then just relaxed and watched the planes come and go. We boarded the plane and were off to Rochester.

Someone had to much fun he was all tired out.

Once we got home it was COLD!!!!!!!!!!!!! Cold meaning 60 degrees. We were just used to it being 90+ everyday. But we didn't let that bother us to much, our limo was waiting for us and on the way home we got to see a beautiful rainbow which put a nice ending to a great vacation. We can't wait to go again and have learned its definitely worth the extra money to go on a Disney Cruise.

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

2011-09-23T19:25:00.000-07:00

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

2011-09-07T10:47:00.000-07:00

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

2011-09-07T10:30:00.000-07:00

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

2011-08-31T04:06:00.000-07:00

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

2011-07-28T04:12:00.000-07:00

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

2011-07-18T10:28:00.001-07:00

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

2011-07-07T14:15:00.000-07:00

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.

..............Been awhile

2011-06-15T06:53:00.000-07:00

I know its been awhile since i last posted but I have been very, very busy. Our neighbor had his 50th bday and I made the cake for the party. I was honored to be able to do such a thing. I was happy with how the cake turned out.

We are also busy with end of the school year activities. Marissa is going into 10th grade and Zachary is going into 3rd. I can't believe it!!!!!!!!!! Both have done very well in school and we are very proud of them.

We got the call on Friday that Zachary is getting a dream trip. We have to let them know of soe travel dates and they will book it and come to present it to Zachary. So we have no idea which it is. Hawaii or Disney Cruise. Either way Zachary is so excited and wanted to go like next week. Unfortunately we can't go that fast because he is scheduled for some tests that need to be done. I will keep everyone posted as to what trip he gets and when we will be traveling.

Baseball is starting this weekend at the Doubledays so I will be working in the ticket office while the family enjoys the games. I figured why not work while they are there. We can use the extra money for the medical bills and we will all be in the same place, just not same area during the game. Zach isn't happy but he will ave daddy and sissy.

When I have anything else to update on I will make sure to post it in a timely manner. The weather has been great so being outside and enjoying the warm weather and pool has been great.

...................Excellent weekend

2011-05-31T06:41:00.000-07:00

The Memorial Day weekend started off on a busy note. Friday night Marissa had her dance recital and as usual she did very good. We are so proud of her, even though she was only in 2 instead of 5 or 6. She was bummed but she had knee surgery back in October and to be on the safe side we took it easy this year. I don't have the pictures downloaded yet but once I do I will post them.

Then on Saturday I had to take a test for an entrance exam for a LPN class and did very well. After that we got the pool opened, and Zach headed off to my parents for the night. Marissa was babysitting so Rob and I enjoyed a nice date night. It was nice to just have dinner as the 2 of us and to talk. We did a few errands after and went home to relax.

Sunday was going to be a long day so I started to prepare myself. Sunday morning I ran my first 5k race. It was so hot and alot of hills for the 3.1 miles. The temp was in the 80's and humid. I managed to finish the race in 34:36. My goals where: #1 to finish the race, #2 not be last, #3 to finish in under 34:00. I accomplished 2 of the 3 and very close to the 3rd goal. Honestly if I hadn't walked up the big hill and alot on the nature trail part (this was the end and I was so sick to my stomach and weak by then), I would of beaten my 34min mark easily. I am ok with it because it gives me something to work off of.

Here I am with my brother who is a good runner. He smoked me in the race but thats ok.

Here I am coming down to enter the nature trail. It was just a little over 2 miles done at this point. (Incase you can't tell I am the one in the black tank top.)

Here I am crossing the finish line. I placed 144th out of 200+ in the time of 34:36

Here I am with my friend Michelle (Pink top) & her sister Amanda. This was after the race, and we are all standing. They both run alot so they were much faster too. Michelle was 26 something and her sister was 28 something. So yes I was the turtle but thats ok i will only grow from here. I can't wait to sign up for my next race.

Sunday afternoon we took Marissa and her friend up to the Majorpalooza family event then Rob and I went back up around 6:30 for the adult portion. It was great to see some old friends and listen to some bands. We even had a couple of drinks (for those of you that know us we don't drink)

Monday Marissa had to march in the parade for band. Her flute was broken (its getting fixed) so she helped carry the huge flag. She wasn't to happy because they had to wear these really heavy uniforms with a wool coat and it was in the mid 80's. After she went out on her friends boat and came home nice and red. With her lovely skin she will be tan in a day, unlike her mother who is a lovely shade of lobster red. LOL Zachary spent the day with my mom going to the cemetaries of family members and putting flowers on the sites. He had a great weekend in all too he said. I wish all weekends were 3-4 days long.

Today we are all back the grind and up and at 'em. I will post a couple pictures that are downloaded now and the rest later on.

........................Boston Follow up

2011-05-23T17:25:00.000-07:00

Friday we went to Boston to see Zachs genetics Dr, & Dr. Spencer for his leg. Genetics went pretty well and they want to order him for a sleep study because he isn't sleeping very well & when he does he isn't well rested. He has been falling asleep in school and on the bus alot lately. The other specialist they want him to see is a hemotologist. He bruises so easily and basic lab work shows nothing so they want to look into it a little more.

Next appointment was Dr. Spencer. We got there and had xrays and got called into a room rather quickly. Always a great thing for me. I would rather wait in a room than the major waiting area. Dr. Spencer came in went over how Zach has been feeling, what has he been doing and reviewed his xrays. After that she looked at his leg, told him a few rules in order to get out of the cast. She also told him about the 4 wheeler and to be extra careful. We walked out of there with no cast on, he can use his walker in the classroom and with us, but otherwise he is to be in his wheelchair. He wanted no wheelchair but since he is a such a go-go boy we need something to hold him down a little longer. The femur isn't totally healed but enough that he is safe to be on his own. We start PT tomorrow and he will get it 2-3 times a week. I am hoping it won't take long for him to rehab back to his normal self. He already has full extension & flex of the knee joint which isn't bad considering he has been in the body cast for 3 months.

We are suppose to go back to Boston the middle of July and hopefully that will be just as good of a appointment and a easy in and out. Thanks for all your thoughts & prayers. You don't know how much they really do help and what they mean to us. I am going to share a picture of Zachary with his Doctor.

Zachary & Doctor Samanth Spencer. The best ortho doctor around in our eyes.

........................Zoo & Bday

2011-05-12T05:38:00.000-07:00

May has been a very busy month so far. On Thursday May 5th I went with Zachary and his class to the zoo for their field trip. It was gorgeous out (1st day without rain in 19 days) and the temp. was just right. We got to see many of the animals out and right up front for them to see. Usually its so hot they are hiding or sleeping.

I love the parrots, but don't care for the smell in the bird area. Zach wanted out as soon as we got in there. He was afraid a bird would poop on his head. And poop was the topic of the day with all the boys. They were fascinated with the animals doing their business. And it seemed like every exhibit we went to they were doing their business. LOL

Part of Zacharys class. For security reasons I will not name the children except that Zach is the 1 in the wheelchair and the lady is his Teacher. She surely will be missed at school next year.

The monkeys. Zach wanted to sit and watch them all day. But I made him go out and see the other animals and we went back in before we left. I kept telling him I was going to leave him with the monkeys and he was all excited. He is a nut-so.

On Saturday May 7th we celebrated his birthday at Cedar House Bowling with his friends. He had everything Phineas & Ferb. That boy sure likes his P&F.

Daddy was giving him a pep talk before he started bowling. He did pretty good. I think he got a 95. Something I probably wouldn't have gotten. He got a strike too and was so excited.

Marissa was helping Zach out. He got a little impatient at times, but sissy came to the rescue and helped out. They all had a good time this year. The key is not to many friends being there. Just enough to enjoy each other and help out and have a grand 'ol time.

This week we have Marissa's band concert (I can never get pictures because she sits in the back and you can't see her.) Next week we are back to Boston for check up and hoping Zachary gets out of his cast, and the following week we have dance recital rehearsal and dance recital. Then a nice 3 day weekend for the Memorial Day Holiday. Oh boy I can't wait I have so much work I want to try to get caught up on outside and around the house. I have actually given up my gym time the past week to get a head start on it, I hope I don't regret doing that and can get back into the groove of going to the gym.

.................1st Communion

2011-05-02T04:52:00.000-07:00

On Saturday we celebrated Zachary's 1st communion and 8th birthday with family and friends. We had it at out house and it turned out to be a beautiful day. Thank you god for that privilege. Zachary was so excited and really did well with getting around and visiting with everyone. I was honored to have my dad & step mom with us too. I have been given the opportunity to get to know my dad after many years of not knowing him (well I knew who he was, but just didn't get to see him or spend time with him).

When shopping 1 day with Marissa we spotted this Tshirt and said it was perfect for both kids. Unfortunately they only had it in Zacharys size, so Marissa decided to model it when he opened it. The funny part is Marissa showed it to her friends and they all said it fit her better than Zachary. LOL We love you Marissa.

The "Saurini" family portrait in church. Aren't we a good looking bunch?

The Saurini's

Zachary & Father Lou (for some reason Zachary thinks he is god, not father.)

Already before church. He is 1 handsome looking young man. I was also so happy he got to enjoy it without his body cast on. He did very well pain/spasm wise.

Just posing away.

Listening to intently to the service. I personally love this picture (probably because he never knew I took the picture so I didn't get a oh mom stop look.)

We had a beautiful day on Sunday for the 1st communion and they all looked great. Zachary chose not to try the wine. What he actually said was "I am not going to drink blood, thats gross" I just love how they phrase things. (Personally I was ok with his choice, because I am not big on sharing cups with public people and to many germs out there these days. I hope I am not punished later in life for that choice and reason, but if so it shall be what it is.)

...............ongoing pain

2011-04-21T18:57:00.000-07:00

Zachary has been having ongoing pain in the knee area for about 2 weeks now. I have called Boston and they didn't really seemed to concerned. Well the pain is still there and Zachary doesn't usually complain so that makes me worry. Well I called again and they said we should have him xrayed to make sure nothing is wrong. Well we went today to Dr. Palominos (well we saw another doctor because she was on vacation) and they xrayed him and this doctor seems to think the end of the rod is hitting his knee and thats what is causing the pain. She said since he is in the cast, to just ice it, and keep giving him motrin/tylonal until we go back to Boston in 1 month. Not sure what they will do, but the poor kid is in agony. He just keep complaining his leg is sore and never did before this surgery. Lets hope the next month goes by fast so we can get some concrete answers.

He is doing great without his medicine we discontinued. No changes as of yet which is great.

...............1 down 7 more to go

2011-04-19T04:28:00.001-07:00

Yesterday I had to call Zachary's peditrician to get a refill on 1 of his meds and I asked if we can d/c 1 of his others. We had discussed stopping it back in the beginning of February, but Dr. Anwer didn't want to stop it before his surgery seeing he was going to be enduring alot of stress, fear, and anxiety. Zachary has been on this kick on not wanting to take his "Drugs". He has it in his mind that they are bad, and illegal and the cops are going to arrest him for doing "Drugs". We have tried to tell him they are not illegal and ordered by the doctor so they are ok drugs. We even had a friend of ours who is a cop tell him its ok. The cops won't take him or his drugs because they are ordered by the doctor. He still doesn't believe it so I thought I should ask if now is a ok time to try to take away this specific medication. We are going to give it a try and see if we notice any changes. He may have to go back on it, but if we can stop 1 maybe that will make him feel a little better that he isn't taking as many.

I don't blame him for not wanting to take medications, but in some situations you have to. His father doesn't help this matter because he is against meds too and is always commenting on the medications. Sometimes I would like to slap him up side the head for saying things. I am one to say if it helps you then thats great, but if it makes you worse (mixing with each other and causing all those side affects) then its not great. Luckily none of Zachary's mix with each other and cause any side affects. Some of the meds will not be taken away for awhile and if they do it will be when he is in patient for his seizure testing and medical staff will be on hand. I am scared when they start to wean the seizure meds for the EEG monitoring. But with God and the medical team I am sure he will be safe. Its just me being worried.

This week is Spring Break for the kids. I am off on Thurs/Fri and we are going to have some mommy & kids time. We are going to go to a museum on Thurs (they haven't decided yet), and Friday will be relaxing & hair cut day. I sure need to get the grays taken care of. LOL

Hope everyone has a great Easter.

...............Thank You God

2011-04-15T09:36:00.000-07:00

Today I am very thankful for the opportunity I have just been given. I was searching the internet for anything new on the Oculo-ectodermal Syndrome that Zachary has and came across a story of a family in Washington that has a 7 yr old little boy with the same syndrome. We have been alone all this time learning on our own about the problems, cures (none), causes, and research for this syndrome. I did a little more research and was able to locate the mother on Facebook (god I love Facebook sometimes). I sent her a message and she accepted my friend request and we have messaged back and forth a few times already. Our boys have so much in common. They are on similar meds and at similar points in their lives.

I gave this mom our genetics Doctors info so maybe they can get in touch with her and learn some more also. Our Doctor will be excited to hear about their little guy I just know it. Our Zachary has been put on the research of the syndrome while they have not YET. I am sure they will now though or atleast I hope so because the more patients they find with it the more they can learn and link things together. I do ask just 1 more thing, Dear God, please help us all through this journey and keep the boys as strong as they are and have been. They are beautiful gifts to us their parents and we are here to do anything and everything to make them live a normal life.

................Boston post op appointment

2011-03-27T09:13:00.001-07:00

Friday we went back to Boston for Zachs first post op appointment. Traffic wasn't a problem going in or leaving. Thank you God. We got there went and had his cast cut off first, then headed to xray, then to see the doctor. I thought oh dear its going to be a wait because everything else has gone so smooth for us. Well I was wrong. We got called in for everything immediately. Dr. Spencer was very happy with his progress and healing so far. She wasn't to happy with him for how he gets all over in the cast. His cast was cracked so they had to re-enforce it and then they relined the inside and put straps on it so he could go back in it. This allows us to take him out to give him a bath. The longest thing all day was getting the cast re-enforced. They had to wait for it to dry before they could do anything else. We made the next post op appointment and on our way home we were. We now go back May 2oth. So another 2 months in the cast, but I would rather him be in it and heal completely than have him 95% healed and him do something and have problems again. I will take some pics of the cast split next time I take him out for a bath and post them.

2007 Disney Scrapbook Album

2011-03-24T11:53:00.000-07:00

I have been working on and off on my Disney trip 2007 Scrapbook album and have almost completed it. I have 1 page that is 50% done and the album will be complete. I am going to post my pages here (not all the pages. SOme I just wasn't to happy with but they are done so I can't really complain.) I hope you all enjoy them as much as I have enjoyed doing them.

................3 weeks today

2011-03-16T06:42:00.000-07:00

It has been 3 weeks today since Zacharys surgery. I can't believe it! He is doing great on the outside but its the inside we are unsure about. Alot of changes for him and emotions he is going through. Which many wouldn't know or see if you aren't around him alot. He gets around a little bit by dragging himself of rolling but since his cast is so big since all the swelling has gone down we told him he can't be doing that because the cast isn't really supporting him.

He has been able to sleep comfortably on his belly and turns over during the night and calls for me to cover him up again. So we have been having a 230am date every morning lately. We have been able to not take him out once he gets home from school which has been real nice for him and our backs. We are keeping him busy with board games, we made some shamrock cut out cookies and got him a new Diary of a Whimpy kid book. We are off to Boston next week for his first post op appointment.

Marissa has her 1st Emerson High School Dance this Saturday. I will post pictures after the event. It has been tough on her because her date goes to another school and was told it wouldn't be a problem for him to go so they went and bought his ticket and everything and last week 1 week before the dance they called and said he can't go. She was devastated and doesn't have a date now. She is going with her friends still and said she will have fun regardless. Her date felt so bad too. His family called and was very upset with the system for waiting till 1 week before. They have had their tickets for a month now.

Well off to play more games. The game of the week is operation toy story. The little stinker can beat me in no time because I do NOT have a steady hand.

................First day home

2011-03-03T08:02:00.000-08:00

We had a great first day home. Zachary is definitely back to himself. He managed to get from the living room to his bedroom and half way back before he couldn't drag himself anymore. He is spending most of his time in the living room playing with his trucks & reading his joke book he got. Typical male with the TV on too. He sat up in the chair with a pillow behind his back for dinner last night. It was nice to sit together as a whole family again and eat.

I was able to get all my home stuff caught up and we even had a visit to school with Zach. We had to bring his supplies in to the nurse and while we were there he got to see his teacher, therapy aid, & classroom aid. He gave them all a small little gift but wouldn't let Mrs. Brazee give him any kisses. He was kinda moody because he thought I was going to make him stay. On our way out he wanted to stop at the gym to see his class. He was so happy his buddy Christian came over and said hi. Thats all he talked about the rest of the day. We came home and a nap was in order. I sure wish I could nap but a moms job is never done. LOL

Then when we got home his buddy Sampson from across the street was out for a walk and he got to see him. That was another highlight for him. He did tell me at first Sampson didn't recognize me mom but once he got closer he knew it was me. How sweet is that? He loves his neighbors doggy.

Last night was the first night with no spike in the fever. He slept all night till about 430 am then was up for the day. He has taken a nap already this am too. The life of a 7 yr old. LOL We go back to Boston on the 25 th of March to xrays, follow up appointment, and they will cut the cast and reline it so he will be able to take it off to get in the tub then back into it. Trust me the 25th can't come quick enough because he keeps picking at this cast and has already tore the goretex lining on the front. Thank god they sent us home with lots of tape to keep it fixed up with.

Well I probably won't be blogging as much again for a bit unless there are changes in Zach or something great comes up to blog about. The next couple weeks are kinda quiet on the calendar for us and I am going to try to enjoy it while it lasts.

I will leave you with 1 phrase Zach keeps saying today "Mom its gorgeous out, just like you" yep he is feeling better. Got to love that little one and the things he comes up with.

...................We are home

2011-03-01T19:13:00.001-08:00

We are home. We got home about 7 pm tonite. We had to stop in Fairmount and pick up Zachs new glasses. He couldn't wait any longer to get them.

The ride home was nice and easy. No traffic and Zach tolerated it very well. He even took a nap for about 2 hours. We stopped for lunch and he actually ate for us. We got home and unloaded and unpacked everything. I finally sat down and started my to-do list. Oh my I will be busy thats for sure. Papa Tony came over for a visit and Zach enjoyed that. He ate a piece of pizza and rolled around on the floor. Yes I said rolled around. He figured out already how to roll from his back to his stomach and back again. The first time he got stuck on his belly so we flipped him over and back he went and figured it all out. I knew it wouldn't take him long. Then he decided he had to go to the bathroom (He will kill me for telling this but thats ok I am his mom I can do that right?) so I got the bright idea to see if he could sit/hover the toilet. I was praying/wishing he could so I don't have to do diapers again. And it worked!!!!!!!!!!!!! I don't know who was happier him or myself.

Well after his visit I put him in bed and he called his other grandparents and talked to them for about 30 minutes. By the time he got done I went to kiss him good night and guess what? He felt real warm again. I took his temp and he was at 101.4 grrrrrrr.............. I am not happy with this night time fever spiking. The dr said its probably something viral because they did 3 nights in a row chest xrays that all came back negative, blood work....negative, and urine culture...negative. They let us go home knowing he spiked last night too, because they think its viral and he would feel better in his own home. So off to give him motrin and see how he sleeps his first night home.

I am off myself to sleep in my own bed. I don't think it has ever sounded so good. Thanks for all prayers and thoughts during our time away and in the hospital with our little man. Marissa was brave/strong herself while we were gone. She stayed here with my mother in law. She had a pretty good vacation week by hanging with her friends, going shopping 2x, finding her Emerson Dress, and coming to Boston to see her brother. Now back to the regular routine.

....................Last night again

2011-03-01T06:30:00.000-08:00

Last night again, Zachary spiked a temp. This time he started out low grade around 7 so they gave him tylonal and he slept for 2 hours. They woke him up to give him is medicine at 10 and he was on fire again. This time 102.3. They called the on call dr and they sent us downstairs at 11pm to get a chest xray, then we came back had blood work done, and urine culture. Xray was negative, urine was negative, and the blood work was negative for the most part. His WBC's where a little elevated around 11 or 14 (I am so sleep deprived I don't remember what she told me at 3 am), and his Crit was 24 which is where it has been since surgery. Since he is just spiking at night they have decided to let us go home. Nothing really different they can do because it has been 3 nights in a row of testing and all negative. They are thinking maybe once he is home and in his own bed he might feel better. They are not changing any treatment options so really why stay they say? So we got him washed up, and ready to go home and just waiting for the d/c paperwork and perscription to get it filled. So on the road we shall be going in about 2 hours. YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

.....................No go today:(

2011-02-28T08:12:00.001-08:00

Zachary up and ready to tackle the day with no issues so we can go home tomorrow.

Well today is a no go home day. Dr. said she wants to make sure another evening episode doesn't happen again tonite and that Zach will be up more today and eat and drink and go potty. So far this am he has had a ice cream, 1 sausage link, and 1/2 egg muffin sandwich. He has been drinking a little also. In about an hour we will head down to the cafeteria to have lunch. He has been up since 530 am and is still in a great mood. He has a male nurse today that likes the Red Sox so we all know how much he is enjoying that. They are going against each other since Zach is a Yankees fan. Great guy and really nice and a pleasure to let him take care of zach. I wanted to post a couple pictures then off to lunch we shall go. Then we have to go to stop at the gift shop because i was told we have to get a couple "Gifts". I have such a thoughtful little boy.

Zach showing off his "Mrs. Brazee" lips

Zach getting a "Mrs. Brazee" kiss. I told him I was going to bring them and I did. He loves them even though he will be like please mom don't. LOL

................Day #4 Post Op

2011-02-27T18:00:00.000-08:00

Well we started the day out great. Zach was up around 6 and watching TV. He napped in the am then got washed up and in his wheelchair. We went down to the lobby to watch the ball maze thing and visit the gift shop (His favorite thing to do. He must think it changes daily. LOL) After we went to the cafeteria for lunch and he had 2 french fries, 2 bites of a chicken finger and 1/4 of a bottle of Hawaiian punch. But by the time we got upstairs he was very uncomfy in his chair and wanted to go back to bed. He took a nap so I took a nap also. We both must of needed it because we slept for 2 hours. Then he woke up saying he had to go potty but couldn't go. We kept trying like every 1/2 hr and nothing. Then he started complaining his stomach was hard which it would be his bladder was so full and his cast was tight in the belly area. He did say he was hungry so we ordered dinner and he ate all of his hot dog, 2 bites of corn, and 1/2 of his ice cream and pineapple juice to drink. Time went on and he still didn't go to the bathroom so finally he started screaming he was uncomfortable and they tried to straight cath him and nothing because he was so tense. About 5 minutes after that he went on his own and then said he felt much better. So they went to change his iv fluid and his iv had blown out so they had to take it out. They said since he had gone to the bathroom and he already had a lot of fluid he should be ok if he keeps drinking. Well around 8 he kept telling us he was freezing (now this whole week he has been sweating and not wanted anything on him) so I knew that was odd. We covered him with a sheet and he was still cold and wanted a blanket. He had the blanket pulled up to his neck and his burpy (his blanky) over his face and still complaining he was cold. He fell asleep and they came in to give him his meds and he was miserable. Didn't want to be bothered or take his meds. We got him to take 2 of the 3. The 3rd one went in but came right out along with everything he possibly had to eat today. What a mess it was, but we got him all cleaned up and now he seems to be resting again. Not peacefully because he is kinda moaning. We are waiting to hear back from the resident on whether or not they will be putting another iv line in.

We were possibly going to go home on Monday if he could/would drink and pee but now with this episode I am not to sure. Maybe if he is ok during the night its a possibility still to go home. Thanks again all for following and thinking of us. Off to lay in the bed with him and make sure he does settle down for the night.

................Day #3 Post Op

2011-02-26T17:54:00.000-08:00

I thought today would be a crazy/bad day seeing Zachary didn't sleep well last night and had a lot of pain. Well he was actually pretty good in the day and got up in the wheel chair for a couple of hours. He even went to the cafeteria for a small lunch. This afternoon he was up for a long time in the bed and wheelchair. We did have to put him back to bed because he was having back pain/shoulder pain. Pain enough to the point that he was crying it was so bad and just thrashing in the bed. We had to take his brand new Phineas and Ferb tshirt off because he was all sweaty. For him to take that off says alot because he likes to be covered up especially with people coming in and out and not wanting people to see him. Once we had him in bed he got some heat packs for the back which he said didn't help. Once it was time for pain meds he got them and more heat packs and then fell asleep for a couple of hours so it was safe to say the pain eased up a little. The nurses are running around kinda crazy because his O2 keeps dropping and he is setting the alarms off. His BP is really low for him too 103/55. They have called on call resident so I have no idea whats going on at this point. If I don't blog through this all I will be in panic mode and we don't need a upset little guy and a crazy mom. They are trying everything and waiting for resident to call back at this point.

I have a couple pictures I took of him up in his wheel chair snoozing. If I try to take any pictures of him awake he yells at me and gets upset so I haven't tried again because no sense of making him upset.

OK I am not publishing this until everything settles down. I want to make sure I have it all documented so I may just keep going on and on. They just did a protable xray, running a bag of IV fluid (Bolus), gave him some pain meds. They are holding his bp meds due to it being so low for him already. He does keep yelling at us for making the bed move while no one is near him or the bed so they are kinda concerned why he is feeling this way. (Personally to me is acting like when he has a seizure episode just a little worse especially with the irritability) We are still waiting for the dr to come up but it might be a little bit because she is down in the ER. Until the next thing that happens I will just sit back and try to relax since he is settling down a little .

OK its been 1 1/2 hrs and he is all settled and everything seems to be back to normal. BP is ok, HR is ok, and O2 is back up to 97. They are thinking he was dehyrdrated because things bounced right back up. WIll post again if something happens but for now I am heading to bed to get some sleep.

................Long night for the little man

2011-02-26T08:32:00.000-08:00

Last night was a very long night. Zach was up most of it and not happy. He kept complaining of a stomache ache, not being comfortable, throat hurting and his leg being squeezed. We figure his stomache hurts because he has not been eating but taking pain meds so I got him to eat 1/2 a thing of pudding. Then his throat is probably because of the intubation tube from surgery. We gave him some pain meds and repositioned him to see if we could help with the swelling. He has to lay now with his head pretty flat and pillows up under his butt and leg so its in the air to allow for elevation. Since doing this he has taken a nap and seems more happy. I on the other hand am exhausted but a moms job is never done so the day will go on. We are hoping to get him out of bed in his wheel chair again and down to the main lobby to the gift shop so he can just get out of the room.

His O2 levels have been really good since coming off the morphine so probably no more O2 either. He was asking this am what all the numbers on the screen meant so I knew he was more with it, at that point. His favorite nurse Danielle is back with him today so he perked up to that also. (Yes Mrs. Brazee he has girlfriends here to, that boy of mine is just something. LOL) I got him to eat 1/2 of his french toast and a can of pineapple juice. I bet from this day forward we will start to see the real Zach come back to us. We might take him to the cafeteria for lunch instead of ordering his room service. (Yep the kids get room service. You order anything they want off of a menu. No specific meals like most hospitals, and the food is actually pretty good. Great choices for them also. They also allow parents to buy a tray for $7.00 and you order as much as you want and what you want and it comes up with the kids trays.) Did I ever say how much I love Childrens Hospital Boston? They are great here and they do the best they can to make everyone feel welcome and help you with anything you may need or want.

....................Pictures from this week so far

2011-02-25T17:08:00.001-08:00

Here Zach is waiting for the Doctor to come in patiently. They were waiting for his lab results so they could give him the final clearance for surgery. He was watching the clock because time was ticking and he was afraid we wouldn't make it to the childrens museum.

Zachy being a construction worker at the museum. What a great place to take a child. So many interactive activites and of course we spent most of the time in the construction zone.

Mr. Bobcat driver

Concentrating so much on sawing, but he wasn't being very protective. His goggles where on the top of his head instead of covering his eyes.

Zachary on Day #1 Post Op

Zachary Day #2 post op. Up in his wheelchair which he wasn't to happy about at first but as you can tell he fell asleep so he didn't know the difference.

.................Day #2 Post Op

2011-02-25T17:02:00.000-08:00

Today started out as a great day. Zach was up around 630 and had a great night of sleeping. He was up till around 930ish then got real grumpy/nasty to us. He was able to get his 1 iv out, catheter out and was told to drink some more so they could try to get the other iv out. Well he was drinking pretty good but ended up having the iv back on because he stopped drinking. He has only ate 2 bites of french toast and 1 strawberry. Every time I ask him if he wants something he gets agitated. He then took a nap and woke up happy again. He got up in the wheel chair and slept in it for about 3 hours. After that he has been a bear again and yelling at us all. I was trying to give him some AJ and he started yelling its poison you just want to kill me. Get me out of this dump, you all want to just kill me thats all. It's hurting me so bad to see him like this, but I know some of it is because of the pain meds. As I type this now he is sleeping comfortably.

He had his favorite nurse from last time today, and she tells him like it is and makes deals with him which seem to work best. She is coming back tomorrow so hopefully we will get her again.

..............Day after surgery

2011-02-24T16:16:00.001-08:00

Today was a little long for us all. Zachary really isn't waking up and when he does he is in such pain he gets a dose of morphine and goes back to sleep. He is able to keep his eyes open for about 2 minutes before he closes them again. I am trying to push some fluids on him but he wants nothing to do with them either. We ordered him a tray for dinner but he wouldn't touch a thing on it. We thought maybe the smell would get him to eat. Nope not a thing not even a sip of his milk shake.

The nurse had him get up in the recliner chair which he wasn't happy about, but he was up about 2 hours. Well I wouldn't say "UP" but he was up in the chair that long. He is back in bed resting now and every so often looks over at me and I get the evil look from him. My poor baby boy I wish there was something I could just do for him. He got a new wheel chair today. His cast is wider this time around so he won't fit in his wheelchair he has already. (Which is ok the seat is starting to rip and the seat belt doesn't stay snug anymore.) This chair is identical to his other one, its just wider for him.

He was very spoiled today. He got a package delivered from some friends back home (Thanks to the Gleason family) they sent him a little NY Yankees figurine guy. I have never seen them but I think I see a possible new collection being started soon. It is so stinking cute. Then he got his edible arrangement from Sissy, Nonnie Mary & Papa Dave. Then a little while later he got a cookie arrangement. I have never seen these but they are so cute. (Much cuter in person the picture doesn't do it justice). He received that from his friend Ana, Mary, Joseph & Anna in North Carolina. The arrangement also came with a dozen mixed cookies in a box (chocolate chip, snickerdoodle - my favorite, and oatmeal raisin). Everyone keeps commenting on them when they walk in his room. So when he is eating he will have plenty to snack on.

Hoping tomorrow we can put him in the wheel chair and roll him around in that. His nonnie Judi, Papa Tony & sissy are coming first thing in the morning. Thanks again for all prayers and thoughts. I hope tonite he can rest as much as he did last night.

.................Surgery Day

2011-02-23T18:39:00.000-08:00

Today was a very long day for us here in Boston. We had to be at the hospital by 7 am. Surgery was scheduled for 830. All went smooth until they told Zach he had to take his clothes off and put on their pj's. He did not like that very well and lost control at that point. From that point forward all we heard was him crying (broke my heart), him saying they were going to cut him open with a chainsaw, he was going to rip those clothes off and run out naked (would of been a site). They handed me blue "stuff" to put on in order to take him into the OR. Well he flipped out seeing me in that and said I looked hideous. I must agree with him though. LOL They are so honest sometimes. I carried him in to the OR and held him while they put him to sleep. The hardest part was laying him on the bed and walking out with him. (I can understand how parents feel when they lose a child because it felt like that)

Rob and I went to the cafe quick got some b'fast then sat in the waiting room all day. They updated every 1 1/2 hrs. Dr. Spencer decided to do the tibia rod also so surgery went from 4 hours to almost 7. This way they wouldn't have to do another surgery if it pulled back anymore also. The only problem they had was he had a lot of bleeding. So they had to do a transfusion which then caused some fluid overload from the IV. All is good though because he is urinating great, which they said usually they don't do that so fast. Thats my boy.....always aiming to please.

He is resting peacefully and has been since recovery. He has sipped some AJ, and nods his head to my questions. Hopefully this is a sign he is going to sail right through here. His favorite nurse Danielle will be here on Friday and we requested her already. She took care of him 2 years ago. He will be surprised this time around because the nurse told me she has a belly and is expecting. I can just imagine what he will say to her. His favorite aid Rob isn't here because he is in Med school. Bummer for us but great for him.

Well thats about all for today. I am off to bed since it was a long day, I was up late last night and didn't sleep well.

....................Boston day #1

2011-02-22T20:00:00.000-08:00

Phew........what a day. We started off at the hospital at 8 am for preop appointment. Then at 10 we went to Orthopedics for a appointment there. It was there we were told Zach may not have surgery. His labs came back abnormal and his clotting factors weren't good. Which meant a couple of things: he can't have surgery because he could bleed out, or they could give him a shot of Vitamin K and redraw and hope they get better. So first they decided to just do a redraw then go from there. Well thank god because it came back ok after that. They are thinking it was a bad vial or something that caused it to come back abnormal. It was a rough morning for Zach because it was taking so long and he just wanted to get to the childrens museum. Finally we got to the museum around 1:45. We spent about 1 1/2 hr there because it was so crowded and Zach was just not up to waiting his turn for everything. Luckily we only had to pay for 1 admission instead of all 3. The hospital gave us 2 complimentary tickets.

Once we got back we sat in the tv area and met a real nice lady & her daughter. They are from Albany orginally but living in Japan d/t husband being in the air force. We chatted for many hours then went to dinner with them. Then we came back exchanged FB and showed pictures and shared some great stories & traveling experiences. It was nice to be able to talk to adults while the kids played then off to bed for Zach early.

Well I need to go get some shut eye since we have to be at the hospital at 7 am for his admission in the am. So up and at 'em early in the am. Looking forward to the in laws & Marissa coming out on Friday & Saturday. Possibly a friend of Zach's on Thursday if he is feeling better. This time around we don't feel so alone and thats a great feeling. I really like this dorm style living while we are here because the friendships we have made already are great. And to know we are not alone with having a child with some medical issues makes it a little easier too.

................Boston Bound

2011-02-20T17:50:00.000-08:00

We are Boston bound for Zacharys surgery. So please stay tuned for updates daily over the next couple of weeks on Zachary's progress. This weekend was very busy for the little guy making his visits with grandparents, friends & neighbors. Everyone has been so supportive and wonderful to him and we want to thank everyone for making him feel so good. His anxiety levels have been really high the past couple of days but with some reassurance I have been able to get him back to his normal self. He has packed his bag with some great items to keep him busy, or feel better. He has his LIPS from Mrs. Brazee, class picture of all his friends, a magnet from his friend Sampson (golden retriever next door), some new books to read & color, some cookies (he already got into them. LOL) and his new build a bear DOG to sleep with. Our schedule this week is: Travel on Monday, 8 am & 10 am appointments on Tuesday and hopefully is the weather is cooperative on Tuesday we will take him to the childrens museum for the afternoon. Then surgery is scheduled for 830 on Wednesday. Once he is out and in his room I will update as to the exact floor he is on for anyone sending him a card. Thanks again for all the prayers and support.

.....................Almost all set

2011-02-17T19:11:00.000-08:00

Well this week has been a busy week and we are almost through it already. Zachary had a couple appointments for clearance in order to have his surgery. Cardiologist said everything is perfect and no problems what so ever. He will not have to go back unless something terrible happens. They also don't believe the high BP is cardiac related. He thinks its kidney caused. Thank you god for some answers and no new issues. Zach is handling everything very well so far this week. Next week might be a little different but thats to be expected with what he will be going through.

Marissa finished her play she was in All Shook up. They did AWESOME. I am so proud of her because i know I could never get up on stage and do that stuff.

Rob got a call from his urologist after he had his 1 week follow up xray appointment and it wasn't good news. He said the kidney stone is still there and not changed in size. So in other words the lithotripsy did not work. So they have to go the hard way and he is not a happy camper. Dr said it can wait until we get back from Boston.

Please keep checking this site out through the next couple weeks. I will be updating daily on Zacharys status.

...............Rob and his kidney Stones

2011-02-08T06:08:00.000-08:00

Well today Rob finally is going to take care of his Kidney Stones. He keeps getting them but just takes some pain meds a day off from work then deals with the discomfort till it goes away. Well a couple weeks he had a bad attack again and has finally decided to have them blasted. Thank god because there is nothing worse than seeing him in pain and so sick from them. They say it doesn't hurt and he will be up and going shortly after.

Zach is holding his own these days. Taking his medicine like a champ and so far the seizure activity has been kept to a bare minimum and i mean bare minimum. I think since they upped his medicine about 3 weeks ago he has had 2 episodes that I am aware of. Not sure if he has had when not with us. He has not been telling us either again and that worries me. I really want to know so we can have accurate documentation to know how active we all need to really be.

Next week is really busy for us seeing its the week before his big surgery again. He has a cardiologist appointment & eye appointment. On top of his 1st communion meeting, hair cut, and packing for almost 2 weeks.

Marissa has her play this weekend "All Shook Up" I can't wait to see it. They have been working so hard and had a great tech weekend building/painting the set. It went much faster than expected for building it. I will post some pictures once we see the show.

..............Neurologist appointment

2011-01-24T04:20:00.000-08:00

We went to the Neurologist on Thursday 1/20/11. We spent well over 1 hour in the room with 2 doctors. Zachary had to explain what he was feeling, we as parents had to tell our side, and they reviewed the eeg notes and agreed they believe it is seizures but what type? How often? How long? Those are all the questions. Then of course the question how should we treat this? Well they upped his medicine from 1/2 tsp 2x day to 1 tsp 2x a day. Also his Vit. B6 was upped to 2x a day. B6 is suppose to help with the side affects from the medicine. They also, want to do a 24 hour EEG and said it would be a couple weeks before it got scheduled since we would have to go to Rochester get him hooked up and be there for 24 hours. So I thought kick and asked if it could be coordinated with Boston since in 3 weeks we will be in Boston for his Surgery. They are going to work on that they said because it makes sense. Thank God for some ease on some of the tests/appointments we have to go through.

Well since he has been on the medicine he has had 2 episodes that he has told us about. I think he had 1 the other night when he came back from his grandparents but he says he didn't he was just sad he couldn't get this tractor from the tractor store. So in 1 week only 2 so far. Well its better than the previous weeks without the medicine. I am just scared because once his 24 hr EEG is scheduled he has to be off the medicine for 7 days prior to it. I sure hope that doesn't make for a long week for him. He will be under enough stress at that time.

We are off to the nephrologist on Tuesday for that follow up and lots more questions on why the kidney size difference. Please keep us in your prayers.

.................Whirlwind again

2011-01-17T10:19:00.000-08:00

Our life has been uprooted yet again. Zachary has been having headaches and very concerning. We spent a whole weekend of him having headaches, being very miserable (unlike him), wanting to sleep, and sucking down tylonel/motrin to try to relieve the pain. Well nothing worked and I didn't like his behavior so i took him to the pediatrician. Dr. Anwer listened and seemed concerned. He ordered a EEG to be done, and made a appointment for the cardiologist since Zachs blood pressure had been so high. (When I say high I am talking 140's over 90's).

We went for the EEG and Zachary did awesome considering he had to sit totally still. They did the cap EEG test instead of all the leads attached to his head. If I can manage to get the pictures off my phone to the computer I will post them.

Dr. Anwer called today with results and he said it was very abnormal. He is definitely having seizures and needs to get to the neurologist asap so they will be calling for an appointment. He also said he will need to be medicated for this.

As a parent, I am scared, clueless, upset, and confused. Why? Why us? Why him? I know these are some questions that will never be answered, but in the mean time make it even more difficult for all of us. I will keep everyone posted when I hear more.

........................Surgery Scheduled

2011-01-10T06:29:00.000-08:00

Phew........the Holidays are over and now we can breathe a little. Well for a couple weeks atleast. Zachary is scheduled for surgery on 2/23 to replace the rod in the femur and bone graft. We will be traveling to Boston again for the surgery. We were lucky enough to get into the housing they have at the hospital. If not I really don't know how we would of afforded an almost 2 weeks stay at a hotel in Boston. Thank you God for answering some of my prayers. We will be leaving on the 21st because the 22nd we have a 8 am appointment then a 10 am appointment. Marissa will be staying here at the house with Nonnie Judi. Then at the end of the week Papa Tony, Nonnie Judi & Marissa will come to Boston to see Zachary.

Other upcoming issues is his appointment with the nephrologist for a follow up. I will be calling them before hand because he is having awful headaches and I am really worried. We don't need anything to hold up his surgery. His BP is not getting any better, but the meds he is on for add/adhd are helping out ALOT. He has been able to focus more and is actually taking to reading now. His teacher complimented him on his attentiveness and he was so happy to tell me about it. So I guess it really wasn't just pent up energy from not being able to do as much as he would like to.

Marissa was released from the Dr to go back to all her activities. So we are off and running to play practice 5 days a week, dance 2 days, and softball gym time in between. She is busy, busy, busy. Not to mention my taxi is running FT again now. LOL I am just glad she is doing something so I really can't complain.

The stomache bug his our house over New Years weekend. I had it really bad for 3 days and Marissa had it for 2 days. All the daycare kids/families all had it too so I knew someone in this house would get it, never thought it would be me since I am usually the healthiest. Oh well I guess I needed it for once. (Didn't help me lose any weight though. LOL)

I will keep everyone posted as time gets closer as to whats going on and an address to send him a card if you want to.

..................Boston Appointment & nephrologist

2010-12-30T05:48:00.000-08:00

The past few weeks have been awful busy with Dr appointments and the Christmas holiday, so please bare with me as this post is late. Zach had an appointment with the nephrologist on 12/16 and at that appointment he said he doesn't feel he would be a candidate for the Bisphosphonate
Therapy. I am kinda happy about that, because that would mean Zach would have to get a pic line or port for the therapy which would just be even more stress on his self image. The Dr did say his Right Kidney is the size of a 1 yr old, while the Left is quite larger and compensating for the Left. His BP was quite high 146/80 something. We are now monitoring his BP 2x a day to see if it was just anxiety or really that high which could mean more detailed kidney issue. I have bene doing the BP readings and I am getting anywhere between 124-140.

On 12/17 we had an appointment with Dr. Spencer in Boston. She said he will need surgery again because the rod is retracting in the femur and its near the growth plate. He still wasn't healed from his injury in August, but was having some skin break down and a blister on his heal so she took him out of the cast and placed him a brace that you can set a dial for the amount he can bend the knee. Its kinda hard to keep it in place because it just keeps falling down no matter how tight we put the straps. She recommended we try to schedule his surgery around a school break so we are waiting to hear of a date in February since there is winter break then. I know not a way to spend your school vacation, but he keeps missing school for all these appointments so we need to plan accordingly. Dr. Spencer said he would probably be in the hospital 5-7 days again and have a body cast on again. So very similar to his last surgery, except this time just the femur not femur & tibia. While she is in there she will do a bone graft again too.

Then we had Christmas the next week and all the festivities that go along with the wonderful holiday and on Monday 12/27 we went to the peditrician for a follow up on a evaluation from school regarding add/adhd. Dr. Anwer was very patient and sat and actually talked to us about all of this. He agreed with me, this is nothing new with him, but thought maybe he would out grow it or thought some of it was just built up "stuff" from him being so limited and going through so much. Its now affecting his school work so time to be active. No more sitting back and watching and trying to use conservative methods for him. Dr. Anwer prescribed a med for him and its only been 2 days since starting it. It is a slower acting med so it will take 2-3 weeks to get to therapeutic level. I feel awful as a mom having to do this, but we all were getting frustrated at this point and its best for all of us. I will tell you if it makes him a total different child (sedated and what not type) I will stop it immediately because thats not what we are looking to do. We just want to take the edge off for him.

I will keep everyone posted as to when the surgery will actually be. Thanks for all the well wishes we have already received. They help more than you can imagine.

................Holidays in full swing

2010-12-13T05:09:00.001-08:00

I love this time of year just for the baking. Ok I will admit I like Christmas, but I like the original meaning of it not this going crazy and grumpy people in the stores.

We have spent the last couple of weekends baking all sorts of cookies, and doing some shopping on a leisurely stroll. It has been very enjoyable I must say. Usually I run in get what i want and get the heck out of there and get agitated while doing it.

On top of getting ready for the holidays I have been busy running the kids to Dr. appointments again. Its that time already. Wow 4-6 months goes by fast. Marissa is having some problems with her knee she had surgery on so she went last week and they ordered a MRI immediately. Well we go back this week for the results. They did say nothing loose, but her knee cap is a concern. I sure hope she doesn't need surgery again.

Zach had a US of his kidney last week and we go to the nephrologist this week. If I am reading it correctly his left kidney is almost double the size of his right kidney. We will know more on Thursday when we go to the Dr. Then on Friday we are off to Boston again to see Dr. Spencer. Hopefully the cast will be off for good for Zachary. If it comes off it will be 4 months in a cast for the little guy, if not then it will be longer and who knows how much longer.

I am hoping his US machine is helping now that we have had it for about a month. It does take time especially seeing it has to go through a cast so we shall see.

Other than that, thats it on this end. Hope you are all enjoying the holiday season and be safe and Merry.

.................Ultra sound therapy

2010-11-16T09:23:00.000-08:00

Ok so yes I am that mom that follows the news and then asks the Dr about what was on it. Well it just happened to be the week before Zachs last appointment I caught part of a story on the news about ultrasound therapy and how it helps the bones heal faster, so you know me I go in the Dr office and ask about this. Well the dr said yes its helping people, but it may not be a good thing for Zach. I was like what? Why? This isn't fair! Well after explaining to me that what it does is kinda fuses the bone together and stimulates bone healing and new bone growth if a bone graft was done. So with that in mind thats a great thing because thats what we want right? Well yes and no because Zach is only 7 and hasn't hit his growth spurt yet for his teen years they are worried about it affecting his growth plate. But on the other hand his Dr said he already has a leg that is shorter than the other by more than 1 1/2 inches (almost 2 now) so that shows his leg isn't really growing with the other leg, so trying ultrasound therapy would be worth a shot. We can't really stunt the growth plate anymore than it already is so we are going to give it a shot. I am hoping and praying this might help him some and maybe make the bone stronger since he already had the bone graft done almost 2 years ago.

So with all that said today his ultrasound machine thing-a-ma-gig will be delivered. I was shocked when I heard the cost of the darn thing. Sit down (who am I kidding you probably are since your reading this on the computer) $5,000.00. I am in the wrong market I need to invent 1 of these darn things. Thank god for insurance (and I guess my insurance isn't all to bad now that we switched) because they participate with BCBS so they can only charge $3,000.00 and our policy covers 50% so that brings it to $1,500.00 for us to come up with. I was like oh I don't know if we can swing it then especially seeing its more experimental at this point for him. If it was a definite it would help him and he absolutely needs it then I wouldn't hesitate on struggling even more to pay for it. But god was looking over me at this moment of time. The lady on the other end asked if monthly payments would help and I was like not really we have a ton of medical bills right now and I can't swing anymore, so she said they do have a program she can see if he would qualify for and if so it would pick up the cost for us. She was really helpful and guess what??????? We qualified (with her help)!!!!!!!!!!!!! I was so thankful to her I was literally in tears on the phone. I can't believe someone out there was willing to help us out for once instead of making us try to jump all the hoops to get through. So thank you to her and God for looking over us today. I can't wait to see this and if it really works for my little guy.

I will post pics later as to what it looks like and how it actually works once the guy delivers it and applies it.

...................Another Cast

2010-11-03T17:30:00.000-07:00

So today I take Zach back to the ortho for a check up on his leg and hoping he gets the cast off for good, but to only be hit hard again with bad news. Zachs leg is not healing this time around so back on with a cast. Another 4 weeks and this one is even longer. This goes literally from his hip to his toes and strict non-weight bearing. Thats going to be the tough part, but we are going to really work on it.

I got to really sit and chat with the dr about this problem and I suggested to her ultrasound therapy. She told me the pros and cons about it but said it might be worth a shot with Zach. So we are waiting to hear from the ins. company if they will cover it. I am at the point where I will try anything for my son to be able to run around again and be "normal". This time he picked out a bright orange cast so he can cheer for SU. He is to funny and takes it all in without really phasing him much. The other option we talked about was bisfonsonate therapy (I know that is spelled wrong sorry). So we are waiting for our referral appointment to a nephrologist to discuss this option and to see if Zach is even a candidate for this therapy. I really need to read up on this the next couple of days so I know what i am going into when we go to the appointment.

Other than that, Marissa is healing well. She is putting weight on her leg (even though she isn't suppose to yet) and getting very impatient with the crutches. She goes back in 2 weeks for her appointment and hopefully she can start to bear weight and get moving again. My poor kiddos they are just a train wreck. But with all the love they have and get we know they are just fine.

................Wordless Wednesday

2010-10-20T13:39:00.001-07:00

...............Getting better

2010-10-18T09:18:00.000-07:00

Last week was a busy week here again with Dr. appointments for the kids. Zach went on Wednesday had xrays and 1 fracture is healing while the other has started but not enough to keep him out of a cast. So back into a leg cast Mr. Zachary went. He wasn't a happy camper, but he doesn't listen and stay down to rest it. I know its hard especially when he is a 7 yr old boy, but boy I sure would like to be without a cast on him for a little while. I sound like a broken record telling him to go lay down or sit in the living room and watch tv and rest your leg. I will say I have threatened him a couple times and it doesn't bother him 1 bit. That child is going to be the death of me I swear.

Marissa went on Friday and they were pleased with her progress. Very happy with her movement & flexing she can do with it. Michelle told her she has to use the crutches and immobolizer still for another 4 weeks. That didn't go over well because its homecoming weekend and she didn't want to be strapped down. Well it was a rainy, cold, and windy day so the foot ball game was out already and I told her she could go to the dance regardless. We let her have her brace off for homecoming pictures but as soon as they were over it went back on. I think she has been cheating and trying to walk without crutches and her brace because she has had a lot of pain the last couple of days and she was warned too, she needs to stay off it or she will be having another surgery. What is it with my hard headed kiddos and not listening to the Dr?

............No luck what so ever

2010-09-21T06:37:00.000-07:00

We went to the doctors today for Marissa with a check up on her knee. She will need surgery and its scheduled for 9/30. They sure aren't wasting any time. She has a chip on the knee bone and it needs to be removed or pinned back in place. Dr isn't sure if he can replace it because there is already fluid behind it and that means its already killing the bone in that area. If he can't pin it, then she might have to have another surgery to fill that area in because its on a weight bearing part of the knee and she will need something there. The first surgery isn't to bad they go in with the scope and 2 little needle holes but if she needs a second then we are looking at a longer surgery and recovery time. He said of atleast 4 months up to a year. So needless to say we have a very unahppy little/big girl on our hands. Dance is at a stand still for her right now. Please say some prayers that everything works out for her.

................Wordless Wednesday

2010-09-08T09:52:00.001-07:00

..................Family Update

2010-09-01T09:06:00.000-07:00

I know its suppose to be wordless Wednesday, but I have been slacking at updating and have the time now to do so. Zach is in a cast again. He was in a bouncy house and a older kid (around 15 what where they thinking with little kids in there too?) was doing back flips and landed on his leg and he has a fracture of the femur. He is casted until the 22nd of Sept when he goes back for a check up.

Marissa is going to PT for her knee because she has a chip on the knee cap. If PT doesn't work we might be looking at surgery for her. So all this makes time very slim and crazy around here so please forgive me for not updating often. Marissa is off to the Justin Beiber concert tonite at the NYS Fair and she can't wait. Its like almost 1 of the hottest days of the summer to go also. So glad Monday is looking like around 73 for me to go. LOL

If anything changes I will be sure to update you all here.

...............Finally it fell out

2010-08-20T05:53:00.000-07:00

Yesterday Zach came home from his trip to New York to see the Yankees play and his tooth looked really loose. Now he has had this stinking thing loose for probably a good 2 months I kid you not and complaining it hurts. Well we all know let it fall out on its own so you don't cause any damage. Well he sat on the couch next to me and kept wiggling it. I was totally grossed out since I don't like teeth for some reason. Well his sister came out and he asked her to help him pull his tooth. It was just a hanging so she worked at it, and can you believe it took them probably a good 5 min. or more to get the stinking thing out. Well he has officially lost his first tooth on his own. He has had 2 pulled, but thats because they were abscessed and no where ready to come out. So it was a big night for the little guy to put his tooth under his pillow and hope the tooth fairy would come. Well she did while he was at the baseball game so when he got home he was surprised already. He couldn't believe it. (I figured it was easier to do then, rather than wait and forget. Which would be terrible.) I will take a picture this weekend and post the beginning of next week.

Boy these kids make out like bandits now-a-days.

..............................Wordless Wednesday

2010-07-21T09:42:00.001-07:00

....................Boston Update

2010-07-18T19:09:00.000-07:00

Friday we went back to Boston for a follow up visit with Genetics & Orthopedics for Zachary. Genetics was first and was just a update appointment and they needed to go over a couple things that weren't clear for the research. Zachary was put on the panel for the Oculo-Ectodermal Syndrome case and is the 16th person with this syndrome. We will hear more back and learn more about it as time goes on since we agreed to have him in the study. So when we learn more we will keep you all posted.

Ortho appointment was a little more detailed. Dr. Spencer was pleased with Zachary, but on the other hand not really his development. She said he can just do the therapy at school since the other isn't really doing him any good. He has poor muscle tone in the leg and she isn't sure if it will ever be good again. We have to limit him with his activities, but yet let him be a boy. (Yeah right thats hard) We were also told we are looking at atleast 2 more surgeries and 1 being in the next year. His rod in the tibia has moved and is right across the growth plate and she is worried about that since there is a weak area in that spot too. She said we will discuss this more in December when we go back again. The other surgery won't be till his tween years because they will have to stop the growth plate in his right leg (his regular leg) so his left leg can possibly catch up.

He measured in at 48 lbs and only about 46 inches tall. He is small for his age group according to the growth charts.

Other than that, there is nothing else going on. Kids leave Saturday for camp with their nonnie and Marissa has a graphic design camp this week.

..................Wordless Wednesday

2010-07-14T05:16:00.001-07:00

..............................Wordless Wednesday

2010-06-30T11:12:00.001-07:00

............Its been forever

2010-06-11T05:20:00.000-07:00

Sorry about slacking on here lately, but I have been preparing for finals in school, and focusing on keeping a really good average for this semester. My goal is a 90 but right now I have a 88. I have a test today which might put me back up there to atleast a 89. I have never had such a good average so I am excited that I am even close.

Nothing new with Zachary going on these days.

Marissa finished up softball for school, now started summer softball, and had her dance recital. Last night was her 8th grade graduation. Where has the time gone? I so remember the days of middle school. High school next year, oh dear God please help us through these trying days ahead of teen attitude, harder school work, and drama that comes with these children.

We are settling in more and more into the house. Will take time to get everything our way, but we are getting there. I am going to be having Fridays off in July/August so I am looking forward to getting something extra done. I will keep you all posted and share pics along the way.

....................He's 7 already

2010-05-11T09:28:00.000-07:00

Holy moly. My baby boy turned 7 years old on Sunday. I honestly don't know where the time has gone. It seems just like yesterday. We had a busy weekend full of birthday activities for Zachary. Friday night he had his friends birthday party at Cedar House bowling and it was a good time by all. The kids where perfect little angels. Never thought I would say that about a bunch of 7 yr olds, but it was a true pleasure to spend the evening with them all.

Sunday, we celebrated Mothers Day, Zachary's birthday, Nonnie Judi's birthday, & Great Uncle Ronnie's birthday. Everyone came over for a cook out then we had cake and presents. By the end of the night Zachary was all worn out and took a nice warm shower and had his medicine since his leg was bothering him and off to dreamland he went. He woke on up Monday morning and was ready to go with all his new clothes and presents. He was finally able to see what he had and take it all in. Some of his favorite gifts where: Moon Sand, NY Yankees switchplate cover, his new tshirts, and his Zhu, Zhu pet.

.................Closing Date

2010-04-13T17:50:00.000-07:00

We are so excited. We got the closing date for our new house. We will be closing on Oak St. sale at noon on 4/23 and will be closing on the new house on Anderson Circle at 2pm. We will have a jam packed weekend moving and getting everything out of this house. So if many of you don't see or hear from me for a little while (couple of weeks) don't worry, I am just buried up to my knees.

Once we get in I will post pictures of our progress with painting, settling in, and so on. Everyone please keep us in your prayers & thoughts for good weather that weekend and we get this done smoothly.

...................Hello April

2010-04-01T09:21:00.000-07:00

Can you believe its already April? I can't. Time is flying by and I don't like it. I don't like it for many reasons. #1 reason because my babies are growing up. Next month (May) Zachary will be 7 and in July Marissa will be 14. It just does not seem possible.

Tomorrow Rob and I will celebrate our 15th wedding anniversary. Another topic that has flown by. I am very thankful for him and his family. Who would of thought we would last this long? Well deep down I did, but with the way things are this day in age anything is possible of happening.

Other than those simple thoughts nothing to important going on these days. We are in limbo still for the new house closing. Its tentative to happen on 4/23 which is 3 weeks away. I can't wait, and get the butterflies every time I think about it. Nothing better than having more space and everyone being happy.

.....................Busy Times

2010-03-19T04:50:00.001-07:00

Are you loving this weather? We sure are and just in time. Busy times are ahead of us as we move forward in our lives. We finally got the final commitment from the buyers bank for our house we sold. So now its move forward in time really fast. Alot of packing, planning, and painting ahead of us. In the end it will be all worth it and beautiful. I will keep everyone updated with pictures of the progress.

This week we head back to Boston for an appointment for Zachary. Hopefully his leg is healing and we can begin therapy and/or putting weight on it. I have noticed he is trying to put weight on the toes, but not flat footed yet. Zachary has had a growing spurt also. Alot of his jeans are getting short on him. Finally, he is growing and just in time for short season. I hate when you have to buy jeans for a month then the next year they don't fit. LOL

Marissa is still dancing and preparing for their production of Annie at school. Thats in a couple weeks, but we have now begun the rehearsals every night and even on Saturday afternoons. She loves it so we can't complain. She had her first meeting for softball, and try outs are next week.
She also got to go to the high school for a tour with the 8th grade class and just to hear her reactions are so funny. I guess I don't remember ever doing the tour and don't remember if I was the same way or not. She informed us she needs a GPS to get around the place. We just laughed. Once she gets there she won't be so confused as to where to go in there. I just can't believe high school next year. Oh god help us through this time frame please.

....................It's Official

2010-03-02T14:15:00.000-08:00

Our house is SOLD and we have been accepted on a offer for the house we want. Now just to sit and wait, sit and wait. Today is the house inspection on our current home for the buyer and tommorrow is the house inspection on the house we are buying. Lets pray that all goes well with both and no major problems. If everything goes smoothly we should be closing on or about 4/23.

The kitchen. It's so big with a dining room too.

The back yard has a inground pool we could do without, but it came with it.
Part of the finished basement.

.......................Cast Off

2010-02-24T13:27:00.000-08:00

Took Zachary to the dr. today and he was able to get his cast taken off. His femur still has a small fracture in it, but the dr. didn't want his leg to lock if it was in the cast much longer, which would then mean PT again. But with the issues we are having with our insurance company I really don't want to have to deal with PT right now. So his instructions are to use the wheelchair for school still, the walker when he does anything else is fine. He is NOT to put any weight on his Left leg and if he does on goes the brace. As of right now our next follow up appointment is in Boston on 3/26.

Other than everything else in the family is going good. We have a offer on our house, and keep trying to put an offer in on a house we are interested in. We are battling against another buyer, the only thing that we might be able to over come is they have to sell their house, where ours is sold. So we should know by the end of the week if they will accept our offer over the other buyer. We are praying that they will since we really LOVE this house. A few changes will be made on our end for the dream to become true, but they will be positive changes. Change is good just remember that. LOL

..............................Wordless Wednesday

2010-02-17T05:22:00.001-08:00

.....................Report cards

2010-02-12T10:41:00.000-08:00

This past week both kids got their report cards. We were very proud of Marissa & Zachary with what they got for grades. Marissa made high honor roll again with a 93.80 average. Way to go Marissa. Keep up the good work and you will get far in life. Zachary got mostly 3's (out of 4) except for his reading, but that he gets help on, so he is doing well in that area considering.

This upcoming weekend Marissa is a small play with the Auburn Players. Its a non-speaking roll that just kinda happened last week. She was going to rehearsals to help out with people missing practices and acting in their place so it didn't throw the others off and just happened to get a extra part. She is also working on Annie at West Middle for the school play. She is very busy every night with something.

We are hoping to have a really nice relaxing weekend. I think we all need it. I have had a migraine for 2 days now and some R&R will do me good.

..................Wordless Wednesday

2010-02-03T11:07:00.001-08:00

........................Dr. Appointment

2010-01-29T13:25:00.001-08:00

Today Zachary had a follow up appointment regarding his leg, and things are looking good. Dr was very please with it starting to heal already. We thought for sure it was going to take awhile like before, but not this time. We did have his cast changed because the other one was a little low. So this time Zach picked out a bright orange. He didn't like the feeling of the other cast coming off though. He said he was scared, but I am ok with that. At least I know he won't get out of the cast and go running and hurt himself again.

Other than that nothing really new and exciting. I am busy working, going to school and still hoping to sell this house. Keep us in your prayers that we sell pretty soon before we lose out on the house we want.

...............................Broken

2010-01-16T12:39:00.000-08:00

Zacharys Dr. finally got the cd of his last xrays from August in Boston and compared them and said his left femur is broken. I had to take him back to Syracuse to get it casted Friday afternoon. He chose a navy blue color and it goes from thigh to his ankle. He is getting around pretty good with it. He uses his walker as crutches around the house but when we go out in public he is in a wheelchair. We don't need him slipping and doing something more to it or his other leg. We go back in 2 weeks for a check up so until then its laying low for us. I will keep you all posted on the progress.

...............................Possible Fracture

2010-01-13T16:18:00.000-08:00

Hello everyone. Sorry its been awhile but nothing to really update on, well until yesterday.

Zachary was walking out of school and tripped on his shoe lace and fell and landed on his LEFT knee with his leg bent underneath him. He came home crying and the bus aid actually carried him in the house so he didn't walk on it. For Zach to cry is a seldom occurance, and then to cry in front of people, you know something is wrong. Well we iced it, elevated it, and gave him tylonal/motrin because he absolutely refused to go have it checked out. It took us over 2 hours to get him to stop crying and calm down. I told him, I would make a deal with him. I would wait till morning and see how it is and decide then if he needs it checked out. He was fine with that and calmed down. He slept very well with no complaints, but when he woke up at 5:30 am he couldn't move the leg. I checked on him and he couldn't move it, bend it, or put any weight on it. Instantly I knew something was wrong so I told him I was calling the Dr. at 9. I would prefer him to see her instead of the ER dr's that don't know what he went through surgery wise. Well I took him over to Syracuse this afternoon and they examined and took xrays and they think he has a possible fracture of the LEFT Femur. They can't verify it until they get copies of the xrays from his Dr in Boston. So for now Zachary is non-weight bearing, in a immobolizer, and wheel chair for getting around. Hopefully we will know more in the next couple of days. If it is fractured he will be put in a cast, they just didn't want to cast it incase its not fractured then have to take it off and the cost is crazy since during this we found out Robs new insurance doesn't cover his dr. I about went through the roof because the paper we got said the doctor was a participating Dr. So now we have a outrageous medical bill since the whole thing has to be paid out of pocket. But I wouldn't refuse that bill since my son needed to be seen. Some day we will get some luck on our side. So for now Zach is relaxing in the recliner and let me tell you, he looks like a King sitting there barking out get this for me, oh I need this, Can you do this for me? Got to love our little monsters.

.............................Wrap up of 2009

2009-12-31T06:08:00.000-08:00

What a year its been. I for one am glad 2009 is over with and 2010 is beginning. Just like many every year I make a resolution to lose weight and never do it, so this year I am looking at things differently. I am hoping this year brings family together even more than ever. There have been some major changes in all of our lives this year and it just makes you realize family is what you need. Everything else is materialistic.

2009 in review:

January- Marissa tried out for the girls basketball team and made it. We where very proud of her.

February-Was a very tough month. We spent almost 2 weeks in Boston for Zachary's surgery on his leg.

March- Zach was still recovering, and Marissa finished up basketball not doing to bad I must say for her first time.

April- Zach finally got out of his body cast, Marissa found out she made the National Junior Honor Society Friends & family also helped put on a benefit to help support us for the medical bills from this huge surgery Zachary underwent in February. Thank you everyone that came out to support us. It was truly amazing the amount of people there (we actually ran out of food). Zachary enjoyed his day with his special visitor Abner from the Auburn Doubledays.

May- Zachary's 6th bday, Marissa made the school softball team and had her 10th yr dance recital and got a award for it. Out of the 10 yrs she had been dancing the most important year to her so far we had a costume malfunction and thats all she talks about to this day. Part of her 1/2 skirt came unpinned during her dance, but she kept on dancing like nothing ever happened.

June- Zachary had his Kindergarden graduation & walking with a walker for the first time since February, Marissa started summer softball league, and finished the school year with a 95 average. She worked very hard to achieve that and was rewarded pretty well (see August)

July- Marissa's 13th bday, we had a dance party for her, she went camping with Nonnie Judi for 1 week, Zach is still recovering and going to therapy 2-3 times a week. He is atleast walking with his walker more and more and not getting as tired. Doubledays baseball is in full swing

August- What a month this was. Marissa went to LasVegas to visit Uncle Tony & Gracie for 2 weeks (that was her reward for the 95 average). Yes 13 and in Vegas for 2 weeks. She had the time of her life and can't wait to go back. While she was in Vegas Rob, Zachary & I went to Niagara Falls (my first time ever) and then up to Toronto to watch the Blue Jays vs Yankees. A friend of ours B.C. plays for them and treated us to the games we saw and got us field passes. Yes we went on the field and met alot of the Yankees along with the Blue Jays. Derek Jeter even gave Zachary his bat. We also had a appointment in Boston and Dr. Spencer told us Zachary is doing very well and he can stop using the walker as tolerated. Zachary was very happy with that and hasn't used it since. We don't have to go back until the spring now for his check up.

September- Well before the kids went back to school we went to Toronto again to watch them play the Yankees again. (Thanks again B.C) This time we didn't get to go on the field but we got to bring Marissa & Nonnie Judi and met some good friends there (Josh, Julie & Shawn). While at the game we ran into a former Doubledays players father and he recognized Zachary after a couple years (how could you forget our Zachary?) After we spent 3 days in Toronto we stopped in Niagara Falls for the night and walked around with the kids. Then back to school it was. As school started up so didn't everything else, Soccer and Dance for Marissa. Zachary is in 1st grade while Marissa is in 8th. At the end of the Month Zachary & I went to Disney for a week. This was a trip for Zachary for being brave and strong for everything he had gone through the months prior. Thanks to a special friend who made this trip happen, without her generous support I wouldn't of been able to see such big smiles on my little guys face for a week.

October- Just a regular month nothing real exciting happening for this month. Zachary started swim lessons for a extra therapy since he only goes to Therapy 1x a week now. We did put our house on the Market in hopes to sell it so we can get a bigger house. We do have a couple houses in mind but can't do anything till this one sells.

November- The month of thanks. We spent alot of time together and had a very nice Thanksgiving. We only had to travel to Nonnie Judi's so that wasn't bad. I of course did my annual all nighter. Was up around 8am on Thanksgiving, then didn't go to bed until 9pm on Friday night. Yep I am one of those crazy people out shopping all night for the black friday rush. We always start at the outlet mall in Waterloo, then this year we went to Ithaca by 4am for all the sales there. Boy does my sister and I have some stories about this years adventures. (Thanks Dick-which is my Tom-Tom LOL)

December- I started school back up, we had a great Christmas Holiday and the kids where very happy. We did cut back alot this year, but the kids didn't seem to mind. We haven't had that much snow so they are kinding bumming since we usually go sledding over Christmas break.

So other than that the usual stuff went on. But those are the highlights and I sure hope I didn't forget anything or anyone. If I did I am sorry and will try better next year. LOL

............................Wordless Wednesday

2009-12-16T05:26:00.001-08:00

.............................Wordless Wednesday

2009-12-09T05:25:00.000-08:00

..............................Update

2009-12-07T06:38:00.000-08:00

Sorry I have been away, but I have been very busy trying to get my Christmas shopping done early, everything is wrapped so far, and having showings of the house since its on the market. I really hate selling/buying a house but we really need something bigger.

Anyway, nothing is new in the medical aspect. We are just awaiting for Zachary test date for his MRI & EEG. The medicine seems to be not working as good as it was (he has built up his tolerance level and its weakening now) but if we give him more MG of the medicine it them really snows him and we refuse to have him like a Zombie all the time. So hopefully the test will show something and maybe they will have to change his medicine and go from there.

This past week was awful busy with Marissa. She made her Confirmation on Tuesday night. I will have pictures to come once I get them downloaded. Then on Wednesday she had rehearsal for her Christmas dance show and the show was on Thursday while Zach & I went to the Craig Morgan concert at Turning Stone Casino. I felt so bad because it was the first dance thing I have missed in 11 years, but had purchased the concert tickets in September before we knew about the dance recital. Anyway Nonnie, Daddy & Aunt Bev went while Papa Tony played Santa. She had lots of support there for her. Thank god for video!!!!!

I start back at school on the 26th. So times will be very hectic around here until we all get back into that routine again. So all in all we are all healthy and doing well. Just waiting for some snow to fall. Not a lot but just enough to really make it feel like Christmas.

................Wordless Wednesday

2009-11-18T10:18:00.001-08:00

........................Latest Dr. Reports

2009-11-10T05:53:00.000-08:00

Last week was very busy for us with Dr. Appointments. On Wednesday 12/4 we took Zachary to the Neuro Dr. in Rochester. Dr. Laurie Zwetsch. Laurie was truly amazing and I was nerveous myself going in there. Zach was ok until they called him and did his initial assessment. BP 136/99. Slightly high (can you say anxiety) for a little guy. Well once we got in the room with Laurie Zach was trying to cover up his anxiety by being cute and funny but she could see right through him she said. The apt. went on with many questions and 2 1/2 hrs later we walked out of there with some answers for his headaches.

1. They are referring to them as ice pick migraines
2. They think he is having seizures but not the body motion part. Just the part in the brain. (So overwhelming I forgot the name of them. I will look into it again)
3. They are putting him on medicine to help with anxiety/headaches hopefully it will help
4. Ordered another MRI with contrast so he has to be sedated (Again, and i am not to happy about this. The poor kid is constantly getting put asleep for all these tests and I worry its not good for him)
5. EEG is ordered
6. Appointment to see a Dr. Ran Ambar. I guess this Dr. teaches kids how to deal with their anxiety, fears, pain and so forth. We are going to give him a try and see if we can do something naturally for Zach so he doesn't have to be on meds for a long time.

As the tests are done and we learn more I will post to keep you all updated.

On Friday, Zachary had his eye appointment. To say the least that didn't go to well for "Mom". Zachary was awesome (I think the medicine is working on the anxiety side) he did all his test for Dr. Noel and was just great. Well come to find out his left eye has gotten worse so we have to get new glasses AGAIN!!!!!!!!!!!! Yes I just bought him new glasses in June so "Mom" was not very happy. We have no vision ins. since Robs work doesn't carry it. Also on top of getting new glasses again Zachary has to wear a patch on his Right eye for 4 hrs a day again every day. He was not happy over hearing that. I don't blame him because he can't hardly see out of his Left eye so they are covering the Right (good one) and pretty much leaving him blind. Ok he isn't blind but everything is very fuzzy to him in the left eye. They are going to give him 2 months and see if it helps and if not we go back and they decide from there what to do.

So since all of that, Zachary has only had a few headaches and nothing compared to what he was having before. The couple he has had recently have been very minor and easy to deal with. Thank God. Something is working for our boy. As for wearing the patch, Monday was a hard day because he thought everyone was going to laugh at him so he didn't want to go to school let alone wear the patch. The day went well and no one laughed at him. (Why do little kids have to worry about such a little issue? People need to teach their children to be nice more often)

I will take a few pics and post later of Zachary & His patch. Please keep us in your thoughts and prayers for answers from the tests once they are scheduled.

...........................Halloween

2009-11-02T13:06:00.001-08:00

Me & my nephew Carter. He is so stinking cute

Zachary & Carter

Zachary out trick or treating as a race car driver

'

Another year down of Halloween festivities. This year Marissa went trick or treating with her friends and for once didn't bring her camera to take pictures of herself. So with that said I have no pictures of her :(

Zachary had a party in school and also went trick or treating. He didn't want to go with my mom at the nursing home or to the YMCA Halloween party. So on Halloween night we headed over to Nonnie Judi's house and after about 1/2 block he was done. He is not a big walker or person to talk to strangers so Halloween is not his thing. I may sound like a scrooge, but honestly I would rather take the kids to the store and buy them what they really like but for the fun we have to experience atleast friends and family for trick or treating. The pictures are from the holiday festivities.

....................More Savings

2009-10-21T10:08:00.001-07:00

OK I think I may need some help. I am admitting----I am addicted to saving money right now!!!!!

I know its not a bad thing, but I stalk the computer like there is no tomorrow looking for great coupons. Today I had some extra time so I headed over to Skaneateles to CVS & PC. We don't have either here in Auburn so after you see my bargains you will understand how the 10 min drive (8 miles) was well worth the trip.

CVS:

SOBE Life water 2/1.69 had a .25 coupon making the product 1.44 for 2
SOBE Life water 2/1.69 had a .25 coupon

Glade sense & spray 5.00 had a 4.00 coupon making product 1.00

Glade reed diffuser 6.99 minus 6.99 in ECB for next store purchase and I had a 3.00 coupon so I actually made 3.00 on this deal

Neosporin Lip therapy on sale for 2.89 I had a 3.00 coupon so product was free
Neosporin Lip therapy on sale for 2.89 I had a 3.00 coupon so product was free

Schick razors (don't know about you but i refuse to pay for razors so if they shave they are good. LOL) I head right to the travel section and pick up a pack of 2 schick razors for 1.29 and have a 2.00 off any schick razor so guess what FREE!!!!!!! I did this for 3 packs that gives me 6 razors (your typical pack size of regular package) for FREE!!!!!!!!!!!

then I got some Halloween candy (4 packs) 2/5.00 total of 10.00 I had a coupon buy 3 bags get 4th free (8.50 now) and then I had a 5.00 coupon from taking a CVS survey on the computer so I got 3 bags of candy for 3.50. Trick or treaters are going to love our house this year. I got the good stuff. LOL

So my grand total for all of that was 9.08 plus tax which brings it to 11.38 and I got a 6.99 ECB to use on my next trip. So all in all my total out of pocket could be figured at $4.39.

Glad I trecked over there for these wonderful bargains.

..............saving some $$$

2009-10-19T11:54:00.000-07:00

I have been very busy these last few weeks collecting my coupons to get a nice stash growing. I have found a couple websites where these wonderful ladies pretty much list out the sale ads and what coupons to use and where to get them if you don't have them. I can give you an example of some awesome deals I got this week by clipping some coupons and reading a blog:

Walgreens:

3 bottles of Triaminic @ 4.99 each (14.97) - $8.00 instant store rebate=$6.97 -3.50 (coupon from 10/18 ad off of 2 bottles of Triamini) and -1.50 (coupon from 10/18 ad off of 1 bottle)= GRAND TOTAL 2.47 for 3 bottle of Triaminic

Zantac 8.99 - 8.99 (instant store rebate)-1.00 (coupon from 10/18) = GRAND TOTAL +1.00 (Yep I made money on that one)

Oral B toothbrushes on sale 2/6.00 - 3.00 (instant rebate)- 1.00 (I used 1.00 coupons) = GRAND TOTAL $1.00 for 2 toothbrushes.

Just a couple examples of my purchases. I will be making more when I go to CVS later this week. My big bargain at CVS will be Halloween candy. I will be getting bags of candy for less than $1.00 each when most stores have it for 1.99-2.50 a bag. Trick or Treaters will love my house this year.

So jump over to www.wickedcooldeals.com or moneysavingmom.com

.......................House is on the Market

2009-10-13T06:47:00.000-07:00

Yup...we finally did it. We have been looking on and off for some time now for a bigger house and nothing has really hit us like a house we found on Sunday. What a great day that was.

We have our eyes on a house that is double in size of our current house and in a great location. We are praying things go our way and we sell our house and they accept our offer for this new house. We can't put a offer in quite yet though. We need to have a offer on ours first so it looks good with the bank. This is a very exciting yet scary time for all of us.

SO if you could please think about us and hope & pray we can sell our house fairly quickly and then get accepted on the new house. That house is currently vacant and has been on the market since August so we don't have to jump on it the same day like we did for our current house. Our current house had like 5 offers all at once and that was just as nerve wracking as to who would be the lucky buyer. Great things do come to those that wait.

..................Progress

2009-10-12T11:27:00.000-07:00

We are having great progress from Zachary these days. It starts out we started him in swim lessons (he knows how to swim but we thought a little aqua therapy would be great for him) and he is doing awesome in it with the kicking motion and bending of him knee more and more. He has been increasing his weights at therapy and doing more rep's of the exercises and has mastered the bear crawl as Dale calls it. Zachary is actually flying through that exercise now and just 2 weeks ago he struggled to do it about 10 ft.

Zachary has been dealing with headaches since August on a daily basis sometimes being so bad he is yelling his head is going to explode. Well I kept saying I think his back is out or something because I know I get them when mine is out. Well the peditrician said no thats not it, they ordered a MRI and it had no change so they ruled out the cysts bothering him. Well they started him on med which we thought was helping but after a few weeks the headaches where just as intense. Well after our Disney trip I insisted his PT check his back (he is a chiropractor also) so he did and realigned his back. He said it was a little out of wack so lets see how this works and we can readjust again if needed. Well we are entering week 3 of no headaches since that adjustment. I knew that was the issue just if people would listen to me sometimes I do know what I am talking about.

So all in all we have had a wonderful couple of weeks of progress in many areas. Thank you God

.............................Wordless Wednesday

2009-10-07T06:24:00.000-07:00

.................................Back from Vacation

2009-10-02T04:13:00.001-07:00

This is from the Safari at Animal Kingdom. The Giraffes where so close this time so I was clicking away because I love Giraffes.

Hello all. I know its been awhile but we where preparing for vacation, making sure school work was done before vacation and running like crazy with Marissa's schedule. We started the year off with soccer practice everyday after school and dance 2x a week. Well Marissa got asked to move into the teen class so that means longer dance on Tuesday (went from 6-7 to 6-830 now) and added Wednesday night also. So now 3 nights in a row of dance lessons. She is loving it so we can't complain.

September 23-29th Zachary & I went to DisneyWorld. We had a blast. We got to see lots of characters that we have never seen there, and the waits where very short for most things until the weekend came along then they jumped up big time. Luckily we had a guest assistance pass for Zachary so we got on everything almost immediately. They treat it as a fast pass for everything even character meet and greets. We also did the Mickeys Not So Scary Halloween Party. That was alot of fun. They close the park to only the people that bought tickets so crowds are alot less, they get to go trick or treating throughout the park and they have TONS of characters out with a really good parade. So here are a couple of pics from our vacation.

Zachary & his stash of candy from Trick or Treating in the Magic Kingdom

Zach & Lightning McQueen This and Handy Manny are all he wanted to see at Hollywood Studios.

...................First day of school for 2009-2010 school year

2009-09-09T18:05:00.000-07:00

Yesterday was the first day of school for the kiddos. Zachary is going into 1st grade and Marissa is going into 8th grade. I can't believe 8th grade already. Before I know it she will be off to college. Both kids got up with out a problem and actually had a good 1st day - so they say. And to top it off I only had to buy 1 binder. Usually they come home with lists of new stuff they need that wasn't on their school supply list or the teacher changes their minds but not this year. Well hopefully it will be a great year for both.

......................MRI report

2009-09-07T18:26:00.001-07:00

Well we got the report back on Zachary regarding his headaches and the dr says it shows no changes since the previous MRI in '05. It does say he has 2 subarachnoid cysts which will need to be followed. Dr is stumped as to why the headaches since no major changes. They started him on a medication to see if that helps and I thought oh my gos the first 3 days on it. He was miserable, falling asleep in the middle of the day, and the headaches seemed worse. He would grab his head and just yell his head was going to explode. Well he has been on it for 1 week now and we have been since friday without a headache. So that would be 3 days so far. Thank god because there was nothing I could do for him but give him tylonal & motrin and hope it would kick in. They are sending the MRI to Boston for the dr's to look at there and see what they think. So we are still up int he air.

................headaches

2009-08-31T13:42:00.000-07:00

Zachary has been getting headaches for awhile now, and it has only gotten worse so I took him to the dr and they ordered him a MRI. I took him today for it so we should know more tom. I hope its nothing, but why the headaches? He wakes up in the middle of the night with them really bad that I have been giving him the stronger medicine which I don't like to do unless I have to.

So please say some prayers for us.

........................Wordless Wednesday

2009-08-26T09:28:00.000-07:00

...........................Counting down

2009-08-24T06:52:00.000-07:00

Zachary & I are counting down the days till our special trip to Disney in September. We are at 29 days and counting. Every morning Zachary wakes me up and tells me how many days are left. I think he is really getting excited now. We are going to be meeting some friends of ours and that just adds to the excitement.

Last week Zachary had abscessed tooth so I took him to the dentist and they referred us to the oral surgeon and he went in the next day and got his front top tooth pulled. He looks silly now since the other front tooth has moved crooked a little. The oral surgeon said his adult tooth still has to finish developing so it will be some time before his adult tooth comes in. Poor kiddo nothing can go easy for him. I can't believe he still hasn't lost a tooth on his own yet. He turned 6 in May, and most of his friends have lost atleast 1 if not 3-4 already. Oh well no sense in rushing it, it allows him to still look like a little boy. (Ha Ha)

School starts in about 2 weeks and neither child is looking forward to it. Marissa is entering 8th grade, and Zachary 1st. School shopping was quite a trip this year. Zachary has his own personality and taste of clothese. T-shirts & jeans if he had his own way. He tells me he won't wear polo shirts because they are "Fancy". Marissa on the other hand is a little picky but we can atleast reason with her. Shoes on the other hand no reasoning in that area. Otherwise all-in-all it was a ok day shopping.

..................Wordless Wednesday

2009-08-19T13:25:00.001-07:00

.............................Awesome Appointment

2009-08-15T11:51:00.000-07:00

Yesterday we went to Boston for another check up on Zachary from his surgery & to see a new specialist. Well it was just a awesome day all the way around. We got in early for all appointments so that meant we got on the road early and home at a decent hour. LOL

First appointment was a ultrasound on his back & hip regarding the bruise he keeps getting. Then we went to the specialist. Well they believe its from the rob hitting a vessel and breaking it open so then the blood absorbs into the surrounding tissues. Seeing Zachary is so active there is nothing they can do and until the rod goes down when he grows it will keep flairing up. Thank god it wasn't something more serious.

Our last appointment was with Dr. Spencer and she is VERY pleased with his progress. She said he will have the on and off pain for some time and especially when the weather changes. They are going to still watch the rod in the Tibia but as of right now nothing to be active on. She said he can go back to gym class and playing baseball all to his tolerance level. We have 1 very happy little boy right now. He also doesn't need the walker to walk with anymore.

Thanks all for the concerns and prayers for this recent appointment. Everything was answered and looks good for the future.

........................>Wordless Wednesday

2009-08-12T14:54:00.000-07:00

.........................Its been awhile

2009-08-07T12:08:00.000-07:00

"The man who made it all happen....>Brett Cecil"
Thanks Brett!!!

Zachary meeting Derek Jeter with Brett holding him.

Zachary & Jorge Posada

Me & my man crush...>Nick Swisher

1 Mesmorized little boy

Its been awhile since I posted, mainly because we haven't had much going on. Last week Marissa went to camp with the family and had a blast. She then came home for 1 1/2 days and flew off to Vegas for 2 weeks. I know people are like why are you letting her go that far by herself, well its a direct flight (we put her on the plane) and her uncle will be at the gate to get her off. After we saw her go up in the air Rob, Zachary & myself took off for Niagara Falls then onto to Toronto for a couple baseball games. We had the best time there and can't thank our special friend enough for the opportunity he gave our son.

Zachary will be finishing up his summer program in 2 weeks, and we are headed back to Boston next week for a check up and to see the new specialist for Zachary. I just finished pharmacology at the local community college and got a B+. I am so excited over that grade I can't even think about it without getting all excited again.

2009-07-27T06:48:00.001-07:00

Our friends are having a fundraiser to bring their 2 older children along with them to China to adopt a little boy. This will be their 2nd adventure over and a very exciting one to be able to share the experience with their older children. The raffle ends this Saturday, August 1st at midnight. They have some awesome prizes for this giveway. Their blog address is: http://tochinaforevan.blogspot.com/

..................SeaBreeze

2009-07-21T06:55:00.001-07:00

On Sunday we took the kids to seabreeze in Rochester. They had such a good time I am glad we decided at the last minute to go. The weather wasn't the warmest (they didn't even do the water rides) but we had a wait time of no longer than 5 minutes on a couple rides otherwise it was walk on most. Zachary is on the short side so there where a couple he couldn't do so Robert & Marissa went on together. But the ones Zachary could do he sure did them. I was just a spectator as I am not a rollercoaster type of person anymore. Usually they knock my back out and then I am paying after so not worth it to me. LOL

Zachary on the carasoul.

If you look toward the back you see Marissa in a tie died shirt and Zachary with his arms up. he was so enjoying himself. (Click on the pic and you can see it bigger)

Little Zachary int he middle smiling away. Marissa was happy she had someone to go on the rides with this year.

........................She is a teenager now

2009-07-20T04:52:00.000-07:00

Sorry this is so late but time seems to just get away. Nothing really new on this end, we just celebrated Marissa's 13th bday. I can't believe myself its been 13 years. WOW!!!!!!!!!! We are preparing for Marissa to go camping for 1 week with Nonnie Judi and the family from Buffalo, then home for 1 day and then off to Las Vegas with Uncle Tony & Gracie for 2 weeks. Yep I said my teenager is going to Vegas. She is so excited and can't wait to be spoiled rotten. Which we all know will happen gosh she already has a nice gift waiting for her when she gets there. I am sure with that nice new Pink Canon Elph camera we will get lots of pictures. LOL

Chelsea decided she wanted to get Marissa in the face with the cake. The funny part is Marissa got it in the face, but lifted her arms up and re-mooshed it in Chelsea's face. Guess they weren't thinking quick enough to move out of the way for reactions.

Marissa opening gifts with the help of her brother. LOL Not sure if I will get all the girls straight but heres a try from left to right (Zachary, Marissa, Abby M, Brigid C, Kaylei S, Taylor M, Julie D, Leanna A, Hailey V, Megan Q, Rachel P, & Chelsea P.

..............................Wordless Wednesday

2009-07-08T05:31:00.000-07:00

...............................Never easy is it?

2009-07-01T04:56:00.000-07:00

Can anything ever be easy? Not in my life it seems that way. Zachary has been getting this bruise on his lower back just above his sacrum area for no reason at all. Well I was watching it because the first time I honestly thought he fell and just didn't tell us since he is afraid he will have to go to the Doctors again. Well to make a long story short the bruise comes and goes. About 2 weeks ago he had one 9cm x 12cm and it was painful to him. Painful enough he asked for tylonal which never happens with our tough guy. I got so nerveous because of the size I took him to his pediatrician to have it looked at. Well he was like uh, uh, I think its this, I don't know really, maybe its part of the syndrome that they don't know much about. I demanded we start at the bottom and do blood work and go from there. Well his labs came back ok and his physical therapist in the mean time says I should probably call his ortho in Syracuse. Well his pediatrician decided to do a ultrasound.

The US results came in that there is no cyst (Thank God), but there is large vascular structure. Well we called his genetics Dr. in Boston to see what she thought and they are reviewing the US disk (being sent to Boston) and want to see him. They referred us to the Vascular Anomolies Center. So we go in August with our scheduled Orthopedic appointment. We have to keep an eye on this and keep taking pictures when it reappears. Well he has another one again and its almost as big as the other one. I just wish things would get better for the little guy.

In my opinion I think its something to do with his leg length difference. Its more prominent and he limps big time now compared to before his surgery (he had a growing spurt and of course the left side didn't grow with the Right) and something is pinching in there and causing this. They did say that could be a possibility. I sent them my pictures I have been taking and I had a really good shot of him standing and you could compare the way he stands and hip placement.

Well thats about it for now. Just going to enjoy our long weekend together this weekend. Not sure what we will be doing but Rob has relatives in from Texas (haven't been here in over 5 yrs) and the family is having a picnic. We also have a double header baseball game & bday party on Sunday and Sunday is Marissa's bday. Can you believe she is going to be 13 already. Time sure does fly.

........................He is swinging again

2009-06-26T14:15:00.000-07:00

Here are a couple pictures of Zachary taking some swings at the baseball the other day at his grandma's house. He hasn't lost his touch of being able to make contact thats for sure.

..............................End of School

2009-06-23T06:02:00.000-07:00

This is the last week of school here for the kids. Marissa has 1/2 days through Wednesday and Zach had a full day Monday and 1/2 days Tues. & Wed. Both are excited for the school year to end. On Monday Marissa had her award ceremony & Zachary had his buddy days. Unfortunately I didn't make it to Zachary's buddy days because both where scheduled at the same time and I always try to make his stuff so this time I went to Marissa's.

Marissa's softball season is off to a good start. She is enjoying herself playing and practicing in the backyard all the time. We are also in the planning of her bday party. She has decided to have a dance party here in the back yard. We have a DJ & Tent *(just incase it rains). She has about 50 kids invited and mom is hoping about 1/2 show not all. LOL Over the weekend Nonnie & I took her shopping for her 13th bday and man was that a trip. I am so not ready for shopping with a teenager. What happened to the days where our parents would just come home with stuff for us and we would wear it? I also disagree with half the clothes out there either by price or by style. She must of caught her nonnie in a weak moment because she got a pair of shorts for $34.50 (yes that much) and they have holes in them. What the heck kind of style is that wearing holy shorts? LMAO!!!!!!!!!!!!!!!!!

Zachary will be going to a summer program that will help keep him in sync with his progression in school. It's only 830-12 for 6 weeks. He isn't to thrilled about the talk of it but I think he will enjoy it once he gets going. He is always up by 730 so its not like he has to get up early. He will just miss morning playtime here at my daycare.

We don't have much planned for summer vacation because of our trip to DISNEY in September. But we will manage to make it to DC for a 3 day weekend to see our friends that live there (He is actually a baseball manager for the Nationals) and then we will go to Toronto/Canada for 3 days in August. We plan on catching the Toronto vs Yankees game then to Marineland for a day. I am excited about that because believe it or not I have never been to Niagra Falls. Marissa is going to go camping with nonnie for 1 week then home for a day then off to LasVegas for 2 weeks. I don't know what we will do without her around for 3 weeks. Her brother will be nuts without her to pick on. Well as you all know it goes both ways with the picking.

Other than that, thats all thats going on at this end. I will update with pics in a few days.

.............................Boston again

2009-06-08T11:16:00.000-07:00

I am not sure where to start today. I have been putting this off since Friday and I guess from all the phone calls I am receiving (yes I am ignoring most of them sorry) I better give everyone a update.

Travel to Boston was good. No problems with traffic or Zachary. We got there went right in to get xrays done. Rob and I where looking at the xrays thinking oh my god that does not look good. So of course that put our heads down. We didn't even have to wait long for the doctor (maybe 5 minutes) and she came in with 2 students and they kept Zachary occupied while we spoke with Dr. Spencer. She pulled up Zachary's xrays on the computer and placed the xrays from February next to them on the screen and what Rob and I thought was not good actually turned out to be good. She compared them and what we weren't seeing was the bonegraft. Her computer images where crisper and his femur is still healing but very slow. Which is ok because it is keeping him down a little longer to let it all gain strength.

Dr. Spencer then evaluated Zachary and of course Zachary was Zachary and giving them holy heck. Yes he was all Yankees right down to his boxers. They all laugh because how can you say something back to a 6 yr old let alone a 6yr old that voices his opinion very well regarding the Red Sox. After laughing they told him he doesn't have to wear the brace anymore but needs to stay in his wheelchair for school, but at home and out and about with us he can use the walker as tolerated. That made him so happy. So they asked him to walk so they could watch him and he took off down the hall and didn't come back. He was gone to the chalk board which was ok because you could tell Dr. Spencer wanted to tell us something else.

Well the actual news is: He will return in August for more xrays & check up and a closer view of the rod in his tibia. She is concerned about that rod and its placement. She thinks it may not be in the bone so that means it won't be telescoping out when he grows. So if its not in (remember he has weak bones so that was a risk factor) he will have to undergo surgery again with bone graft placement there also. The way they kinda explained it to make sense to the non-medical people is the rod is screwed in his bone kinda like a screw into a piece of wood. So if the wood is soft the screw kinda gets stripped and just keeps turning but not adhering to the wood. Thats kinda like his tibia bone. The rod is there but just not grabbing onto the bone to stay in place. We are hoping for the best and praying that it was just a bad xray Friday from movement but won't know till August for sure. If worse comes to worse for needing another surgery this one wont be as intense since it would only be the tibia (not the tibia and femur) and it wouldn't require a body cast again just the leg cast. Also summer will be over with so no dealing with the heat in a cast either. If he needs it done, surgery won't be until atleast October because of Zachary's special trip planned for September.

Again we are hoping for the best, but I will keep you all posted as to whats going on and his achievements.

...........................Excitement

2009-06-03T11:19:00.000-07:00

I don't know who's more excited Zachary or myself. Zachary & I will be traveling to Disney in September to celebrate his triumph of his surgery & recovery. Yes we will be in the magical place for 6 nights & 7 days. The trip can't get any better after everything we went through booking. We had a few dates to select from, I really didn't want him to miss school, and we where going cheap.

Well as we kept calling for different time frames 1 time our travel agent called back and said Jodi you have to take this trip during this time frame. As she went on I realized it was meant to be at that time to book. We got upgraded to a moderate resort for free, free dining, Mickey's Not So Scarey Halloween Party will be held 1 evening while we are there, and better yet a secret person (I know who but you guys won't. LOL) paid for 1/2 of our trip. We really do have some wonderful friends. As I got thinking some more I really thought it would be more fun if a "special" friend could join us in Disney. So I called my friend up and said hey listen don't you want to go to Disney with us? It would only cost you XXX to join us. She couldn't believe it. So guess what.......Mary & Ana are meeting us in Disney!!!!!!!!!!!!! So again who is more excited Zachary & Ana or Mary & myself? I think its a good toss up. So anyway, September 23-29 we are going to be in Disney.

Marissa is not joining us because she will be giong to Vegas for 2 weeks to visit Uncle Tony & Gracie. Rob hates Disney so he can stay home no grumps in Disney.

Our other excitement is we are heading to Boston on Friday for another check up for Zachary. Zachary is hoping to get out of the wheel chair and brace. We aren't to sure about that, but its worth a shot to pray for it to happen. Zachary seems to be doing ok at therapy with a couple little concerns but I think working with him on his exercises it will all come back in time.

Tuesday Zachary went for his 6yr check up and he finally grew this year. Last year he didn't even grow 1/2 inch but this year he grew 1 inch and gained 5lbs. So he is 43 inches tall and 47 lbs. Still on the small side for his age and being a boy, but as long as he's healthy we don't care if he is small. Means I get to hold onto him a little longer. LOL (I know me being selfish)

School softball is over with for Marissa and now soccer and summer softball has started. Not even a day rest in there. I know the days I have to run, run, run I am crazy, but I would rather have her busy than sitting home on the computer or fighting with her brother.

Other than that, thats all thats going on in the Saurini household. Will update after our apt. on Friday in Boston.