It's been a crazy week...

We had an extremely busy work week and we're looking forward to the weekend. This may be the last farewell to summer with temps in the 80s all weekend... it's been 70s for 2 weeks. So we're looking forward to the warm weather. Hoping to get some more of the deck stained. Sean's playing in a golf tournament on Saturday and the Run For Jon is Saturday too. 

And if you're wondering what all the "voting" is about... We're asking everyone to vote for the Hannah's Hope Fund. If you'd like more information please let us know. Her website is www.hannahshopefund.org. A friend of ours' little girl Hannah was diagnosed with Giant Axonal Neuropathy (GAN). GAN patients lose the ability to speak and swallow and become quadriplegics and die in their 20's. We're directing everyone to Pepsi Refresh Project (click here) to vote for Hannah.  Hannah's Hope Fund is hoping to win a $250,000 grant to help with their clinical trial to help treat GAN and hopefully find a cure for this disease. There's only 5 days left to vote and Hannah is in 4th place and need to be in 1st or 2nd to qualify for the grant. With all your help, we can help them do it! It costs you nothing but a few minutes of your time. You can Text* 101885 to Pepsi (73774) as well as adding the facebook application.

We said goodbye to the boys' nanny today. She was an amazing nanny and we're sad to see her go, but she's left for college to get a degree in elementary education. I'm confident that she'll make a great teacher some day. She took a lot of stress off us this summer and I'm going to miss her. The boys were asking after she left "when is Miss Ari coming back?" And I had to explain that she is going far away and she won't be here anymore. I don't think they understood what it meant until it clicked with Matthew and he ran out the door after her. So sweet. They plan to write her letters and share pictures and we hope she'll be home on break soon to visit and hoping she considers being the boys' nanny again next summer. Which brought us to a deep conversation on what it means to "Miss" someone. I explained the best I possibly could about what "miss you" means. Andrew said "I think it means when someone leaves and I think about them a lot and it makes me sad that I don't see them anymore"... He said it's like when he thinks about all the fun he had with Miss Samantha & Miss Rebecca (Their cousins). We went to visit them in NJ and see their Great Gram & Pop. Andrew said he misses them and it makes him sad he can't see them more and that they live so far away. We had a great time in Jersey and hope to be able to go back soon. It's hard living so far away from family.

On another note... Andrew had an eye doctor appointment today and the eye doctor said that he still does not see "3D"... (there goes Sean's idea for a new tv) BUT his vision has improved and he no longer needs to wear glasses all the time. He only needs them for reading now! YAY! But now I'm sure we'll have many more lost pairs of glasses since he'll be taking them on & off as needed. I wish the dollar store made reading glasses for kids too! But it's encouraging that he only needs them for reading. They won't consider bifocals because of his balance and gait issues. Bifocals can throw off your balance. He still has some problems with visual perception, his depth of field and peripheral vision. But not having to wear glasses all the time is an improvement. I love his new Sketchers glasses. They are very cool and stylish and now I wish he could wear them all the time. He definitely looks more grown up with them on.

guess we need a photo update...

I just realized that I need to update our blog header photos! wow those are old. I guess I will wjavascript:void(0)hen I find some time

2010 Sand Sculpture Competition

Looks like summer is coming to an end...

Although we've had a wonderful fun filled summer, it seems as though it may be coming to an end. The boys still enjoy the pool just about every day, but the sun is getting lower in the sky and daylight hours are starting to lessen. The cool evenings and the cold rain, even for a day, really lowers the pool temperature. Too cold for me. The boys don't seem to mind so they'll get another month out of it.

Matthew completed just about every week at the fun runs at the local park. He did really well and was sad to see it end. Andrew did his first 1/2 mile run a few weeks ago and did a great job! We were so proud of him for completing the whole race and even came in ahead of 2 other children! Talk about so proud it brought tears to our eyes. The same week, Matthew completed his first 1 mile run with a time of 10:40! And that was in 85 degree weather. He'll be competing in the Run For Jon this weekend. He's definitely a natural and wants better running shoes.
Matthew will be starting up Soccer this fall. His first practice is tomorrow. He's so excited since we were unable to register in time last year.
The boys also entered the Sand Sculpture Contest at our beach and came in 2nd place for their age group by building Yankee Stadium! they won $20! They're so creative. here's the link to the photo gallery from the Press-Republican website... CLICK HERE

We've only just begun school shopping this year. Our stores are limited for boy's school clothes and Andrew won't wear anything but dress pants and button down shirts and they have to be wrinkle free. Walmart & Target are just not cutting it.
On another note, our Nanny (Arihanna) that we hired this summer has worked out amazingly! Not only does she entertain the boys all day, but she brings them everywhere they need to go, makes sure they clean their rooms, make their beds, brush their teeth and to top it all off, she does homework time with them to keep them on track for the coming school year! Unfortunately she's leaving us on Thursday to continue her college education and she'll be too far to watch the boys after school. We're going to miss her so much. I've had an extremely reduced stress summer... last year was going to be the death of me. This summer, she was able to bring Andrew to all his therapy appointments, was there on time every time! She had them at the library once a week, brought them to the beach, out to the movies, lunch... I could go on forever at how much less stressful she made our summer. Here's hoping she will be back next summer.
As for Sean & I, busy as usual. We're getting ready to plan our trip to St. Louis for Andrew's Surgery at the end of September. We'll post more details on the surgery when we get all of the information. We've spoken the the neurosurgeon and the Orthopedic surgeon and we're pretty hopeful this will be the answer to Andrew's toe walking! ((Fingers crossed))

School Portraits

Click on the image to see the boys grow through their school portraits.

Catching up...

Photo taken at Six Flags June 2010

It seems as though the months have flown by since we've updated our family blog. You may be anxious to hear how Matthew's first year of school went in kindergarten or how Andrew did in first grade... Well, there just isn't enough room to include it all or you'd be reading for hours. So lets just say it was a pretty uneventful school year. Matthew adjusted well to Kindergarten and looks forward to first grade in the fall. Of course he made lots of friends and did well in school. Andrew, again did well in first grade despite our fears of the higher expectations. He continues to receive PT, OT, Speech and all his other support staff regularly help him each day.
Now that summer is here, we've hired a nanny who is working out really well! The boys are happy to be home for the summer and we're happy to have the stress taking off of bringing Andrew to therapy everyday during the summer and bringing the boys to camp etc. She's been really great at helping the boys really learn this summer by doing homework time, library time and daily outings like blueberry picking and the park. We've also installed a pool this year!! Our greatest purchase to date for entertaining. Not only do the boys love the pool, but we do too and it gave us a big excuse to finally replace our failing deck. Now we've got a great place to sit, relax and entertain with no worries of the whole thing collapsing. We were lucky to have an acquaintance of Sean's give us their pool that they didn't want, so we were able to finally afford it. Andrew's physical therapist for the summer is starting aquatic therapy on Wednesday so this should be interesting but hopefully successful.
Sean and I continue to work hard and the summer has been filled with fun outings. We went camping in June/July, which was beautiful weather the whole time. We took the boys on a surprise trip to Six Flags and Lake George on the last day of school. We surprise them by bringing them to dinner, stayed in a hotel with a waterslide and surprised them with the theme park & waterpark the next day. Their faces were priceless.
Sean competed in the Plattsburgh Half Marathon this past April and did great for his first time. He seems to be a natural runner. Sean & I competed in the Lake Placid Half Marathon and ran together the whole way. It was quite the challenge and hope to be able to go again next year. We both have been running a lot and feel great about staying healthy. We also competed in the Boilermaker 15k in Utica which was a huge race through Utica that ends at a brewery! It was an amazing race along with about 14,000 other entrants in 80+ degree heat. And a few other smaller local 5k races.
Matthew has been happily competing in the local fun runs and has gotten quite competitive about his running. He won his first race a few weeks ago and we're so proud of him. He also did great playing his first season of coach pitch baseball. Andrew was unable to continue his Hippotherapy this summer but we hope to be able to get him in and riding the horses real soon. Andrew is happy enough to cheer us all on... although we can tell that sometimes he feels left out. It's difficult to find activities to get him into with is disability.
So we've been pretty busy lately and apologize to all of you who follow our family's blog... We'll try to update more frequently... Especially since we are looking down the road at Andrew having another surgery in September. We'll update more as the information comes to us. The blogs were a great way to update you all on his progress and recovery during his last surgery, so we'll be sure to keep this up and running again.

Veteran's Day Photo Tribute

We would like to take this time to thank all our veterans for their Duty, Honor and Courage. We thank you for all of the sacrifices you have made for our country. Sacrifices so honorable… so that we can live free.

Wow, it's been a while...

I guess the daily challenges of life have gotten in the way of our blog updates! Ya think??
So since my last post we have been VERY busy!!! We had a great busy summer. We were able to do some camping, traveling to visit family, parties and cookouts with friends... but the best was taking the boys on their first trip to New York City! We were given some great tickets to go see the Yankees play in the new stadium. The boys LOVED it! We were given tickets that were just to the right of the Yankee dugout and 18 rows up from the field. We spoiled the boys while at the game of course and we got a great deal on on hotel right in the city. They were amazed at the sights, smells and sounds of the city. They can't wait to go back. They got to ride the train there, rode in their first taxi ride and subway ride. We had great food, great shopping and an all around wonderful time... we can't wait to take them back.
Andrew continued his horseback riding therapy (Hippotherapy) this summer at Medicine Horse. As always, he loved it. We've seen some huge improvements this year. He continues with PT, OT and speech to help him achieve his goals. He had a doctors appointment with his Orthopedic doctor here with a great report. He shows no signs that he will need heel cord lengthening at this time. His hip, knees and ankle xrays looked great. His hip dysplasia that was forming is no worse than before his Selective Dorsal Rhizotomy surgery. Although his heel cords seem tight to us and he tends to have days where he walks on his toes aggressively, the Ortho said that he does not need surgery yet! whew! Basically, Andrew has gone through a huge growth spurt this summer and his body can't keep up. So we have to just stretch stretch stretch. Otherwise, he's doing great. He's started first grade this year and is coming along nicely in school. Today was picture day, can't wait to see them! Will post when they come in. :)
Matthew had a fun filled summer playing t-ball again this year. He really seems to like it and loves the Yankees. His favorite part of the summer was going to see them play in real life. He was excited to get to see Jeter hit a home run too. He's doing great in kindergarten... Can't believe he is actually in school now. He has a hard time getting into the routine of the classroom, but seems to be learning a lot. He's doing a great job with reading... we're so proud of how talented he is when it comes to being creative. He loves to write his own books, staple them together and bring them to school to share with his class.
So we plan to try and get them into a winter activity. We're torn between Karate or just swimming. We would love to do both, but with it both being on Saturday, it may not be possible.
We've been so busy and we're looking forward to the holidays... yes, holidays already.
Hopefully we can update our blog more often. I guess if we continue to keep it up, we won't have to write such long ones all at once!

Check out some of our pictures from our busy summer...

hectic last few days...

Well, to start it all off, Sean and I have been committed to getting fit and training for some marathons.  So, because of that "get fit" idea, now I (mel) have severe leg pain that just will not go away.  The doctor has ordered a bone scan of both legs and we're awaiting results.  Hoping that there is no signs of stress fracture.  Also, PT was ordered to find out where all this pain is coming from and how to prevent further injury.  It's something that we really want to do and it feels good too.

So then, Matthew ends up with Strep throat on Sunday.  The first sign was on Saturday when our "ball of fire" zonked out in the car at 6:00 pm without any warning.  We barely did anything all day and it is not like him to take a nap.  We got home and he didn't want dinner and just went to bed. His friend at school had strep last week so I just put 2 and 2 together... besides, mommys know best and I knew right away by the smell of his breath that it was strep.  Sean brough him in on Sunday morning to the ped and sure enough it was positive.  He basically vegged out all day on Sunday and was in bed by 7pm.  BUT , all night he had a high fever between 102-103.  Sean had to run to the store at 10pm to get more children's motrin since tylenol was not even touching it.  after cold washcloths and lots of tylenol and motrin, it wasn't until after midnight that his fever started to go down.  

And TODAY, he woke up with the biggest grin and asked "is it the next day yet?".  We told him yes and he said "I am so excited, this is my kindergarten day!".  He was up and happy to know that he was going to his kindergarten registration and screening today.  He did a great job and scored really well on all areas... except social skills (which is not believable since he is so very social) but they combine listening skills with social skills so that is def. the reason why.  But otherwise they said he is more than ready for Kindergarten. We treated him to lunch before I had to get back to the final part of my bone scan.  The rest of the day was pampering and spoiling him on his special day!  He still didn't feel good today and just lay on the couch till dinner (which he didn't eat) and was in bed by 7pm.  Hopefully he will be better for school tomorrow and hoping that no one else in the family gets it.

Andrew was very excited today to see Matthew come to visit school.  His teachers told us that he was proud of Matthew! (so cute)  So we popped in to visit Andrew and he was not in class but was at Art Class.  Andrew came out of the classroom and gave Matthew a huge hug and was very excited for him.  It was so "big brotherly" of him!

Here's a little pic of Matthew in front of school.  It was REALLY windy and very cold out today, and the camera wasn't working right so we only got these crazy shots of Matthew.

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more on the weather...

BURRR is all we can say!!! The freezing subzero temperatures are taking its toll. Friday morning we woke up to finding out that school was closed because it was TOO COLD and then we realized the we had no heat in the house! Apparently the 25 below zero night had frozen our pipes, so we had no heat. We thought we were doing the right thing by having our thermostat set to go down to 65 degrees at night while we slept and to come back on up to 73 at 5am. But when we got up, the house was frigid. We have a comfort zone heater to supplement our heat to save on fuel but we soon found out that since the heat is set for 73 during the day that the furnace does not kick on and circulate the heat for hours while the house cools down to 65. The hot water stayed dormant in the pipes while the 25 below cold air was busy freezing the pipes in the front section of the house. Because the way the house was built 15 years ago, the builder placed the pipes too close to the outside wall of the house causing the pipes to be more exposed to the elements. Thankfully, with the supplement heat, the natural gas fireplace downstairs and the thermostat being left turned up downstairs helped to keep the house warm during the night, but it was not enough to keep those pipes from freezing.
When we got up in the morning, my dad came over to check the furnace, which was fine. When we could not get the heat to circulate upstairs we called a heating specialist who came over and informed us that we had a frozen pipe somewhere and speculated that it was on the front wall of the house, which by the way, is precisely where our 52" plasma tv is mounted on the wall, along with all the wiring for it installed in the wall and all of the in-wall speakers. It's also the wall where my computer and work files are and other tons of wiring for the house! So first things first! Sean had to take the day off from work to figure this all out. Andrew was home from school, so that added to the need for help. Unfortunately, since I could not take the day off from work... we were doing an "inaguration page" test run for the front pages of the newspaper for next tuesday and I had to be there while the press was running it off and we had to do color correction (it's a historical day, you know, and we are trying not to screw it up) It's my responsibility to be sure it goes as smooth as possible along with getting ads and other pre-press things finished before the weekend. The newspaper does not stop for frozen pipes! So anyway, Sean was left to take care of it all. I brought Matthew to preschool (which was thankfully open) and headed off to work. Sean had to prepare for the attempt at thawing the pipes so he had to move as many things as he could since there was a chance that the pipes would burst! BUT it's not like you can just take the tv off the wall. If the pipes burst, we would have a lot of water damage. He worked at it all day and was instructed to go slow with a blowdryer since thawing too quickly would cause the pipes to burst. Finally, I could get done work and come home to help. No sooner had I left from work when Sean said that he got the pipe unthawed but that for some reason the water was spraying out from the furnace pipes. He called the heat guy back and he came over and replaced a valve that had blown on the furnace because of the built up pressure in the pipes.
WOW, got to love the weather around here! We were lucky this time and now we've learned that when the weatherman calls for below zero, we have to keep the heat up! So much for trying to save on fuel! We figure that it's not worth trying to save a few bucks on fuel since it would cost us MUCH more if our pipes froze, exploded and damaged all of our belongings! Lessson learned.

Blogging about the weather!

Well, at this point we're ok with winter. With all the snow, we've found ways to really enjoy this winter... so far anyway. We've had to buy the boys new sleds since the one sled cracked in half and the other just isn't fast enough according to the boys. So now they have 2 new sleds that we tested out in the fresh new 4-5 inches of snow from last night. This was that fluffy snow so it was no good for building anything with. They boys did enjoy building their snow fort the last few days from the snow from the last Noreaster that we just got a few days ago. The forecast for that storm was calling for about a foot of accumulation but since we had a mix of sleet at one point, it kind of packed it down a bit. It didn't help much with shoveling since it made it quite heavy. But with all of the snow we've gotten so early this year we have yet to see any grass below since after Halloween. Thankfully the boys really enjoy playing outside and now that We're ALL winter equipped with snow pants, new boots and long johns, mittens, hats, scarves and anything else to help keep us warm, we can actually try to make the most of our long winters. I refuse to subcome to the "cabin fever" that I've suffered the last few years. Forcing ourselves to get out no matter how the weather is, is a goal for this year. So today we took a trek out into the woods near our house down by the river. There had been a snowmobile that made tracks for us in the deep snow so it was a bit easier going. I would have loved to have had some cross country skis. Wearing those boots in the deep snow pulling the boys on sleds is a great workout though. It was so beautiful out there in the winter. People had been snowshoeing out there and there were lots of animal tracks for the boys to follow. Matthew was a little concerned about mosquitos so we had to explain that they don't live in the woods in the winter and then came the questions about the bears. We had to remind him that the bears hibernate in the winter so not to worry. Last summer when we went out to the trails the mosquitos were so thick they could carry you away... even doused with bug spray. But it really was nice to get out in the freshly snow covered trails with the sun shining through the trees. Thankfully Andrew is still young enough to drag along in his sled, because otherwise we would have never made it as far into the woods as we did. I think at one point the boys were laying on their sleds and were falling asleep!

Besides the weather, we're really struggling to find a place to send Andrew for the summer school break. It seems like any program that we've found is either not enough hours during the day or it is just not the right program for him. The last few programs we've looked into were more like just a babysitting service. For the money that we'd pay, it just does not seem like a worthwhile investment. We're better off to hire a teenager to come over every day. We know that it is quite beyond our control, since in this area there are NO programs available for a child like Andrew. There are many camps in our area but nothing that is full time summer care that is accessible for Andrew. These programs are for the average child and include activities that would not be possible for him to participate. It seems like the older he gets, the less there are for options. Besides just having a place to send him to be looked after for the summer, we're also running into the issues of where he will receive his summer services. We anticipate that he will definitely have PT during the summer but we plan to push for OT also. His academics are suffering since he was behind to begin with, so the ideal program for him would have to be an "educational" summer program... but good luck finding such a thing around here. I know that kids look forward to summer break but we want Andrew to have the most educational experiences that he possibly can now that he's too young to realize the it is "summer vacation". I think the only other option is for us to stay home and work with him, BUT, it's just not an option. It's awful to say that our jobs have to come first... it's sort of like a snowball effect. We can't take the chance of taking summer off from work, mostly because we can't afford it financially, but these days you just can't risk the possibility of not having a job at all. I just don't know what everyone else in the world does in the summertime. Where do all of these kids go in the summer. I assume that they must go somewhere but it seems like everyone I talk to has the same problem. Our community really has to do something about this. Everyone talks about the kids that get into trouble when they can't keep busy, But do you see anyone providing a place for all these kids to go. It may be that just because we're new to this that we just have to learn, but where else do you go, who do you talk to. But realistically, there is no place for Andrew. He needs structure. He needs that 1:1 attention. He needs the education. Never in a million years did we ever think that it would be this difficult to just have someone take your child for the summer months so that we can work. Nothing like making you feel like a horrible parent that there is nothing you can do about it except to just keep trying. In the end I'm sure it will work itself out. But like everything else, nothing with Andrew is simple. It's always a fight to get him what he needs. But we are his advocate and that's what our lives consist of at this point.
Matthew on the other hand is getting excited that he will be going to kindergarten in the fall. It seems so far away but yet so close! He can't wait for kindergarten. He wants to ride the bus. He wants to go to the big school. He wants to pick out his backpack. He wants to have all of his own school supplies and when he visits Andrew at school he goes right to the art area. Andrew told him about art class and Matthew cant wait. Andrew has told him about lunch time and recess and seems to really love school, so now Matthew can't wait! It's a good thing that Andrew rarely argues about going to school. I think that this year has gone by so smoothly so far. It's really unbelievable that he likes school this much still. Matthew has decided that he wants to be a runner like daddy. So we told him since he is good at riding his bike and running, that all he has to do is learn how to swim and he can be like Uncle Jay and run in the Iron Man Triathalon when he gets older. How amazing would that be. It would be so good for getting out his energy. So when the next enrollment for swimming lessons comes up, he will be there.
Speaking of, Sean has really been getting into the running. He goes regularly and has these little spikes that hook up to his shoes so he can go in the ice and snow too. He's trying to convince me to do this marathon in vermont this spring. It's in May and is a 5 leg marathon. He actually thinks I will be ready to do the first leg by May, yeah, whatever. I plan to try and it's something that he really wants to do together. but I really don't think my body can take it. So now it's on... I HAVE to keep active and motivated. He's trying to suck me into his "healthy life", but I swear I will NOT give up chocolate, potato chips or Mountain Dew... I swear!