Matthew is the youngest of our three boys. He has been diagnosed with Mitochondrial Disorder Complex I and III, Chronic Intestinal Pseudo Obstruction, FTT and Glucose Intolerance. He has been through countless tests and procedures in the past 8 years . We do not know what the future holds for him, but we are going to do our best to cherish every day with him. Stay strong little man.

Sunday, October 25, 2009





We had a wonderful turnout for the MDA Stride-N-Ride. Thank you to everyone who supported the MDA today. Almost 11 thousand dollars was raised. Woo Hoo!Matthew was super excited and had a great time. He did sneak a few pieces of sugared gum and lollipops, so his sugars were running on the high side when we got back home(219). Matthew won two costume contests today. One at the MDA walk for "Best Overall Costume" and for "Cutest Costume" at the Mall trick-or-treating this evening. He was dressed as the "King of Lollipops and Gum".
Check out both blogs for new pictures.

Bradley is feeling much better. He just still has such a nasty cough. He will be going back to school tomorrow.

Matthew's braces situation hasn't been resolved yet. The MDA might be able to help us out with getting him a new pair made by a different company if we can't get his fixed. We are also in the process of getting the medicaid waiver for Matthew. They would also cover new braces, but we are not sure how long it will be before all of the paperwork is completed. We have a medicaid meeting this Wednesday morning, but it might have to be rescheduled again. Terry didn't get the time off approved yet.

Monday, October 19, 2009

A good weekend for Matthew. He had a great time spending Friday evening with our friends. The highlight of his night was being able to roast and eat a marshmallow. He enjoyed every bite of it.

I came down with the nasty stomach bug on Saturday night. It's going around our classroom and made its way to me. I was in bed all day yesterday. I'm feeling better today but still not great.

The orthotics company sent Matthew's braces back to us today saying they were fixed. They put white straps on them to keep him from hyper extending his knees. They are worse than before. Now he can't even stand up straight. I'm sending them back. They are useless and I am very frustrated with them.


Matthew woke up with a belly ache this morning but seemed to feel better as the day went on. He took a good nap when he got home from school and is watching some TV and drawing some pictures before he goes back to bed. His belly is very distended .We were able to vent some air a few minutes ago but it's already getting distended again.Matthew received a package in his happy mail on Saturday. It was from our Caringbridge friend Makaylah and her family. Makaylah's sister Hannah who is 10 years old wanted to use her birthday money to buy Matthew something from Disney. She bought him Disney Princesses and some really cool goofy lollipops. Thank you so much Hannah. That was super sweet of you. Matthew loves everything.



Sunday, October 4, 2009

Saturday we went to a Make-A-Wish volunteer lunch. Terry spoke about Matthew's wish . Matthew was shy and didn't want to get up in front of everyone, but he was very well behaved. His wish lady Diane presented him with a gift(scooby books,a stuffed lizard, Make-a-wish hot wheel car, and a big purple lollipop) from our local Make-A-Wish chapter.
Bradley and Steven loved the food and helped out by drawing the winning tickets for the door prizes. Matthew ended up spending quite a bit of time talking with the bar tender and waiter. They even brought him into the kitchen to meet the chef.
Later on Saturday afternoon, we drove to the Lake Placid Fire Department. The Plattsburgh Fire Department and the Lake Placid Fire department held a street drive to raise money for the MDA. They invited us to join them for dinner after the drive .


Matthew enjoyed sitting in a very big fire truck and meeting the firemen. They raised over $3000.00 in one afternoon.
On the way back we stopped at the Lake Placid KOA campground. Friends of ours were camping there. Matthew had a great time talking with Ms. Nichole and telling her his new riddles.
He spent today resting at home while the rest of us did some fall cleaning.

Our next big event is the MDA Monster Stride-n-Ride walk. It is being held on October 25th at Champlain Centre Mall in Plattsburgh . We had a wonderful team last year and are hoping that many more can join us this year. Our main team is the "Mito Marchers" and you can walk along with us on team "Mighty Matthew". It should be lots of fun with pumpkin decorating and yummy treats.

Monday, September 28, 2009

Matthew's week went well. He still is enjoying school. His class invited Grandparents in on Friday for a special grandparent get together. They sang a few songs, and ate some special treats together
Matthew was shy during the performance and didn't sing much, but he was very happy to have his Gramma, Grandpa and Nana there to visit.
We went to our friends Friday night for dinner and Matthew had a blast playing with his friend Ava. He insisted on wearing her pink vest and her old Baby pants(size 0-3 mos) home that night. He is just so cute.
We heard from Boston this morning. They are still working out a time for Matthew to have the Botox injection done. It should be sometime soon. Matthew's new AFO's are ready . We are going down to Saratoga this Thursday afternoon to pick them up.
Medical wise, everything is the same. Nothing more, nothing less. We are just enjoying every good day he has been having.

Monday, September 14, 2009



Matthew and his new friend Ava at the 2009 Mito walk



Matthew and Eithene having fun with some ribbons and Matthew wearing Eithene's sun glasses.

Matthew and his new friend Colbie at the Mito walk.





Sunday, September 6, 2009

We have been finally enjoying some summer weather. It has been beautiful the past few days. Summer has arrived just in time for Fall.

Matthew went to the beach on Friday with friends of ours. He played in the sand but did not go near the water. He even let a friend of mine bury his legs and make him look like a mermaid.
He wore his cooling vest and it worked great. He didn't complain of being hot and didn't look like he was wilting.
Yesterday we went on a walk at a local state park. Matthew rode in the backpack carrier and had a good time. Matthew's first day of Kindergarten is on Tuesday. He will be picked up in the school mini van. He isn't allowed to ride on the bus since it's against New York State law to put a car seat on a big school bus. He will be the only child in the van and they will bring him directly to and from the school.

Friday morning we have to leave for Boston around 4 AM. We have to be there for our 10 :30 meeting. We will be staying there through Sunday. We are walking in the Mito walk on Sunday. We are very excited to be meeting some of our caringbridge friends at the walk.

Today is another beautiful day,. Matthew has been resting in the living room so far, but I am going to get him up and outside soon.