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, December 20, 2009

Matthew has had a very busy weekend. He seems to be feeling much better.

On Saturday we had Steven's 11th birthday party at the Bowling Alley. Matthew was very well behaved and everyone had a good time.

Today we drove 2 1/2 hours to Albany for the Starlight Holiday party. It was so much fun. The boys had fun playing the free video games and eating pizza. Matthew enjoyed seeing his friend Colbie and her sister Tiffany. Colbie was able to talk Matthew into getting an airbrush
tattoo on his cheek. He got a Tinkerbell tattoo.
After the party we stopped to the Six Flags Holiday in the Park event. We had free passes from Matthew's make-a-wish trip.
It was freezing cold, but very festive. Matthew was wrapped in a blanket in his stroller. All of the buildings were heated so it was just the walk in between that was cold.
A very Fun Day! We have also received several gifts from some very wonderful people. I would like to thank everyone wh​o has sent cards, gifts , or have signed Matthew's guest book. Matth​ew's face lights up every time he goes to the post office to get his Happy Mail.

Mat​thew also goes for his EEG tomorrow morning. We should get the results of it soon afterwards.​

Sunday, December 13, 2009

Matthew has had a very busy weekend.

Yes​terday I took him to see some of his friends perform in a Holiday Irish Step Recital. He enjoyed seeing his friends dance.

We also spent the evening at our friend's house. Matthew helped build a blanket fort and even had more fun knocking it down.

This morning we went to our friends Allison and Donna's house for an early Christmas. Everyone had a good time eating breakfast, playing games and opening gifts.
He is pretty worn out this evening and has big red bags under his eyes, but he is still in good spirits.

He did have more staring spells this weekend. He has his EEG scheduled on the 21st of this month. It will be done at our local hospital

Sunday, November 22, 2009

We leave for Boston tomorrow. Matthew will have the Botox procedure done at 8AM on Tuesday. We have to arrive at the hospital at 6 AM. Matthew also has an appointment with his metabolic doctor in the afternoon. If everything goes well, we should be home by Tuesday evening. After another meeting with his bosses, Terry was allowed the time off. They will discuss his position when he gets back. Matthew has had a very busy weekend.

Yesterday he received some wonderful packages from his friends. He received a whole bag full of ponies from our friends Mikey and Gabi. He also received a belated birthday present from his friend Linda, and several nice letters and cards from online friends around the United States. A very special thank you to everyone who made him smile yesterday.

Today we sold paper Make-A-Wish angels at the mall. All donations go directly to granting wishes in our local area. Harry came along with us and was very well behaved. Matthew has had one new symptom develop. A few times this week has complained of his legs getting wobbly. He doesn't have his new braces yet, so I am not sure if its from not wearing his old ones. His orthopedic doctor in Boston didn't think his old braces were helping much, so he hasn't been wearing them.

Saturday, November 7, 2009

Matthew had a wonderful time at his Royal Birthday Ball today. He was so happy to see his preschool friends from last year. All of the girls had beautiful dresses on and the boys were handsome princes.

Matthew couldn't wait until it was time to eat his special royal pudding. He ate every last bite and even licked the cup clean. After all of the presents were opened, everyone went to the tumble gym.
Matthew didn't want to stay very long in there and ended up getting hurt on the way out. He was kicked in the chest and belly by his friend who was swinging on a rope. He flipped and fell and his bag of lollipops broke open. It took him a few moments to catch his breath and after resting in the other room for a few minutes, he felt better. Other than that, he had a blast.

Sunday, November 1, 2009

Another busy weekend for us.

Yesterday, we spent most of the day cleaning up around the house. I carved Matthew's pumpkin for him. He didn't want to touch it. We took the boys trick-or-treating last night. they had a good time and got way too much candy and treats.

Today, we went to the bowling alley for an MDA Bowl-a-thon event. It was put on by the Plattsburgh Letter Carriers. Matthew started off the event by rolling the first ball.
He was is a good mood while we were there. He told jokes, walked around visiting everyone, colored pictures, and drew the winning tickets for the raffles. Despite still having new belly issues, he had a wonderful weekend. Hopefully it will continue into this week. His Birthday is this Friday. He is counting down the days until he turns 5.

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.