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.

Monday, June 29, 2009

Matthew's Preschool Graduation Party!!!

A wonderful weekend for Matthew. On Saturday we had Matthew's Preschool Graduation party. He was super excited . We had an BBQ for family and friends. Matthew played with his friend Emily on the swings for a bit and he played for a long time in his play house on our back porch.
He was so happy when he opened his presents . He got several new "My Little Ponies "and he even got a Nintendo DS with a DS my little pony game.
I made him a special sugar free cherry pie with cool whip and a Kix cereal crust. He just loved it. Toward the end of the party he did go back inside and wanted to lie down in the living room and take a break. Yesterday, Matthew spent the day playing with his new ponies and resting. He was very mellow and quiet for the entire day. He didn't go outside or move around much. I think that he just needed the extra rest from all of the excitement of his party the day before. Just before bed he touched the light bulb in the living room and burned his pointer finger. He has a pretty good size blister on it , but he says it feels ok. He's so strong.It's a rainy day so far this morning. The boys have been watching TV and I have been cleaning as usual. I have already e-mailed his doctors this morning and Terry is going to be calling them as well on his lunch break. Hopefully one of us will get in touch with someone today!

Thursday, June 25, 2009

Matthew's Preschool Graduation!!!!

Matthew had his preschool graduation today. He was very excited and did a wonderful job talking when it was his turn. He even told a few of his favorite jokes. He was sad this afternoon when he asked if there was one more day of school. I told him that school was over and that most of his friends will be going to different schools in the fall. He cheered up when I told him that we could have some of his Friends over this summer and that he would still be able to play with them. He does want to thank everyone who made his day special.

He also wants to thank Krystal for his new packs of gum, Dani for his new lollipop shirt and princess jewelry, his friend Saige for the cool ball and his Friend Regin for a really cool popeye shirt. He loves everything.

The temperatures here have been in the 80's the past two days. Matthew was very overheated yesterday. His class went to the beach in the morning for one last picnic before vacation. Matthew played a little bit there and stuck his toes in the water but he didn't stay for long. He was getting hot and not having very much fun. By afternoon he was very hot even at home. i had to dunk him into our pool to cool him off. If anyone heard a screaming boy around 3 PM yesterday, it probably was Matthew. He did not like being dipped into the pool. He did feel better after and was much cooler.Still no news from his doctors. No news on the enzyme status or about the team phone conference we were having this week! Last Friday was the last that I heard from his GI doctor in Boston. He said that he would call us on Monday, get the conference set up, and start the enzymes. We have e-mailed him everyday this week and nothing back yet. I'm sure he will call or e-mail us again this Friday evening(when nothing can be done until the following week) to tell us that he's working on a "NEW PLAN". It's very frustrating when a few months ago his doctors were telling us that Matthew can not stay in this "starvation" mode forever and that something needed to be done if he is to survive in the future. That being said, here we are almost two months after being discharged from Boston without a plan.

Sunday, June 21, 2009

Matthew had a wonderful weekend. On Friday we had a picnic with preschool at a local town park. Matthew played some on the playground and loved his picnic lunch. His belly was very distended by the time we got back home.

He didn't seem to mind that it was that big.We received an e-mail from Dr. Watkins saying that he was going to call us and Dr. Meyer to get the enzymes started. Hopefully, we can start them this week. The team phone conference should also happen sometime this week. We have several things to discuss and a new plan to come up with.

Matthew and Steven helped make breakfast for Terry this morning for Father's Day. They had fun wearing chef hats and giving Terry his gifts.

Bradley was at a friend's house for the night. He didn't get home until afternoon. We went for a walk to the mall this afternoon, ate dinner and walked back home. Matthew has his preschool graduation on Thursday morning. He is very excited to be graduating but he also wants to stay in preschool.

Wednesday, June 17, 2009

Matthew's PICC line is out. We brought him to the hospital this evening and it was taken out by one of the IV nurses. He was very brave and sat on my lap and even said it tickled. No news yet about when the team phone conference will be. Matthew also went to his pediatrician's office today for his routine two week check up. She hasn't heard from his doctors in Boston in quite some time and said that she will also be available anytime for the conference. She still thinks that Matthew needs insulin.

We had yet another one of Matthew's favorite activities at preschool today. The class tried out a brand new sprinkler. Matthew went through the sprinkler one time(with the help of his aide and our OT therapist). As you can tell by the attached picture, he didn't like it, but he didn't cry.
He had a much better time sitting with his friend Saige on a towel and watching his friends get wet.

Beach Day!

Matthew had another field trip today with his preschool friends. We walked to the beach for a picnic. The city beach is just down the road from our school. Matthew had a good time riding in his stroller, but did not enjoy being at the beach. The entire class with the exception of Matthew went in the water and played in the sand. Matthew wanted to be carried and did not want to be put down on the sand. He did sit for a few minutes, but only with a towel wrapped around him.
It was very windy and his eyes watered the entire time. I thought that by seeing his friends playing and having fun, he would want to join in. Well, that wasn't the case. He watched them play but had no interest in joining them.His blood sugars were on the high side again today. (196 and 189). We still don't have an answer as to why they run high. He will also be getting his PICC line out tomorrow evening at our local hospital. His line will stay out until his doctors come up with a new plan.He did have a good PT session this afternoon and had fun riding in his stroller this evening on our walk.

Sunday, June 14, 2009

A good weekend.

Matthew 's fever is gone. He ending up coming down with a cold this weekend. It seems to be just in his nose and eyes. He has a green runny nose but he hasn't been coughing. We had wonderful weather the past two days.

Matthew had yet another Birthday party yesterday. It was a for his friend Ava. She turned six and had an American Doll/ baby doll party. Everyone brought their favorite doll to the party. Matthew brought "Little Matthew"(his cabbage patch doll that has a Matching mic-key button and PICC line). He had a good time but didn't want to be outside when the girls were on the slip-n-slide. he went up to Ava's room with another one of his friends and dressed up in "girl" dress-up clothes. He came back downstairs wearing a very pretty dress, hat and wearing handcuffs!

All of the girls thought he was so cute and he decided to keep the dress on while he ate. To top it all off, Ava's mom (who is Matthew's preschool teacher) gave Matthew a big bag of very "GIRLY" dress-up clothes that he could keep. He has had so much fun trying them all on the past two days.

Of course he isn't allowed to wear them outside of the house. We told him that they are only for play and that he has to wear his "boy " clothes when we go anywhere. I'm sure that there are many parents out there that would think it's wrong to let a boy play with "girl " toys, but he's just a kid having fun. I'll post some pictures of him all dressed up on his blog site.Today, Matthew played inside for most of the day but had a big burst of energy this evening. One of his little friends from down the road stopped over and the two of them went in our bouncy house. Matthew also ran the farthest we have ever seen him go on our walk tonight. He wanted to race his friend while she rode her bicycle. He did get tired after a few minutes and finished the walk in his stroller. We were very proud of him. We did check his heart rate when he got into the stroller since he was out of breath. We noticed that his heart rate was actually slower than usual. After all of that running it was only 96 . We took it again a few minutes later after he had been sitting in his stroller and it was back up to his normal 120 range. Terry did talk to Dr. Watkins(GI in Boston) and he did confirm that Matthew's PICC line should be removed. They havn't been able to figure out how to give Matthew the PN without the side effects or why it's happening. Matthew will be started on Pancreatic enzymes and he is to stay on his motility medicine. We still will be having the team phone conference, but not for another week. Matthew's metabolic doctor is out of town until the 19th. We will be discussing what to do next and also getting the Botox injections scheduled. We should also hear back from Matthew's Peditrician about where he needs to go to get the line removed. We might have to go to Vermont.

Monday, June 8, 2009

It was a very busy weekend.Matthew had a high blood sugar reading on Friday afternoon. I took it twice and it was in the 260's. I took him for blood work and it took our local hospital an hour to get an IV nurse to get down to the lab to draw the blood. By the time we got back home it had been 1 1/2 hours sinced I had last checked his sugar. I checked it again just to see if it had gone down and it was down to 69. To me, that seems like a big drop in a short amount of time. We also missed Dr. Watkin's call while we were at the lab... Terry called him back and he didn't answerOn Saturday, we had our annual garage sale and made over 300 dollars!! Matthew also went to another birthday party for one of his preschool friends. He had a wonderful time and the weather was nice. He went in the bouncy tent when it was empty and when he noticed only a few other kids were in it. Most of his friends went swimming, but he didn't mind. He doesn't like to get wet. He had just as much fun squirting his friends with a water blaster from outside of the pool

I took him tomTarget after the party to get some new My little ponies. His friend Pam sent him some money and he wanted to use it to buy ponies! Thank you Pam.

Matthew had a good day at preschool today. He only has a few more weeks left before he graduates. He keeps saying that he doesn't want to leave preschool. The boys have dentist's appointments this week in Albany and Matthew has an appointment to have his AFO's checked in Albany as well.