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.

Tuesday, July 21, 2009

Sunday we headed to The Enchanted Forest/Water park in Old Forge NY . Our friends Allison and Donna came along with us. We saw several deer along the road on the way there. Some were not even afraid of the cars.

We forgot to give Steven his "car sickness" meds before we left , so the poor kid threw up. He did manage to get out of the car first this time. Terry pulled the car over in the middle of nowhere and out Steven ran right into a big patch of Poison Ivy. So far, he hasn't broke out in a rash. I don't think he will. The park wasn't crowded at all, but it also wasn't very warm out. It didn't help that I forgot to bring jackets.


Everyone did have a good time and Bradley and Steven loved that there weren't any lines for the water slides. The water was heated but still felt freezing to me. Matthew stepped into the kiddie pool and walked to the other side and then was done. Also, too cold for him. He really enjoyed watching the tiger show . Yesterday, Matthew lounged around and was also pretty cranky. I think he was overtired. He did go outside for a bit and played ponies on our back porch.

Today, it was much more humid out. I took the boys to our local fair for a few hours. They wanted to see if they won any ribbons for their artwork they entered. All three on them won ribbons and some money. It was opening day for the fair today so from 12-1 the rides were free. Bradley and Steven went on a few rides, but Matthew said that he wasn't in a ride mood. He was too hot and wanted to stay in the shade. We only stayed 2 hours, but he looked like he was melting by the time we left. His cooling vest would have come in handy today, but I have to send it back for a smaller size. It's way too big.

Matthew had a wonderful surprise this afternoon. A friend of mine (Michelle) and her daughters brought over a huge My little Pony castle and several ponies. They wanted Matthew to have it since they don't play with it anymore. Matthew was asleep when they got here but woke up just as they were leaving. He was cranky at first (not quite awake) but after a few small snacks, he was ready to play with it. Thank you Michelle, Lacy and Allie.

Thursday, July 16, 2009

Finally A Sunny Day!

Yesterday we finally had a sunny day. I convinced Matthew that it would be fun to try to walk on the boy's slip-n-slide. We turned the water down very low and Matthew walked down the entire slip-n-slide and back and got his legs all wet.

He thought it was pretty fun and even laughed, but he chose to watch the boys slide instead of trying it again. Whoo-hoo Matthew! His PT Gina also got him to step into his little pool and try to squirt us with his new water blaster. He found this quite funny. She also got him to sit down in his pool.

He didn't want to at first but, he did sit down and had fun throwing all of the balls out of the pool. When it was our turn to throw them back in to him, he changed his mind and got out. The first few splashed him and he was done . We are still so proud of him. I'm adding video of this along with new pictures on his blog site.
We are in the process of trying to get a special bike for Matthew. He needs a bike that fits him . We found a company that makes a DCP mini bike.
http://www.freedomconcepts.com/products/discovery/dcp12-mini/#tech-specs. This would be perfect for him. It even comes with a parent handle incase he gets too tired. Right now, he only rides his bike with his therapists and only goes in our garage or down our driveway before he gives up and is done. We will have to turn it in to our insurance to see if we can get it covered.

Matthew is still tolerating the enzymes but with increased thirst and very distended belly. It seems like his belly is even more distended at times if that can even be possible. Venting does seem to help some.

Today it is raining again!!!!. Another storm is getting close as I type. I hope we don't lose power

video

Sunday, July 12, 2009

Matthew put his feet in our pool on Friday. He usually avoids water and pools. He had fun trying to splash his brother Bradley.


We took the boys and Harry to the FLW fishing derby today. Matthew even tried the little kid's jumping tent. The lady who was working at the tent let him go all by himself. He was too nervous with other kids in it.

Matthew belly has been very distended again. He is also retaining fluid.

Check out Matthew's Caringbridge site for the full update.

Sunday, July 5, 2009

Forth of July weekend

We spent the weekend in New Hampshire. We took the boys to Story Land and stayed at a hotel that had an indoor waterpark.
Harry(Matthew's dog) joined us too. He was very well behaved. Matthew was able to ride his first Roller Coaster. He still wasn't tall enough(had to be 36 inches) but the let him ride anyway. He said he was never going on it again.

Matthew even stepped into the kiddie pool at the hotel. He made sure to stay near the side and he got out every time someone came close to him.
video

Yesterday we stopped at some beautiful covered bridges , walked by the river and stayed to watch the lacal 4th of July parade. Matthew liked the parade but didn't like the loud noises from the bands, drums or trucks. He kept his ears covered.



Wednesday, July 1, 2009






Cleaning, painting and Strawberry picking. That's what we have been up to this week. I have been busy painting the kitchen and family room and cleaning the house. I did take the kids strawberry picking this afternoon. The boys had a good time. Matthew loves to pick (and eat) strawberries.


Matthew filled his whole container. He was very proud of himself.He went to his pediatrician yesterday for his routine two week check up. Dr. Watkin's e-mailed me with his cell number. He wanted Dr. Meyer to call him to discuss the enzymes. I haven't heard anything back yet... I guess that our "important" team phone conference will not be happening again this week. So far, we have nothing scheduled and with the holiday weekend coming up, I'm pretty sure nothing will be scheduled this week. Terry left yet another phone message with the GI dept. in Boston today. Again, no call back.
Matthew has spent the past few days playing with his new My Little Ponies and just lounging around. He has been going outside in his stroller for his evening walks and he has played well on our back porch. He has had a few crabby moments but he has been in good spirits for the most part. I think that he is enjoying sleeping in and not having to get ready for school.
We are planning on going to New Hampshire on Friday . We have free passes to several area parks that were given to us from Matthew's make-a wish trip. We will be going to a small theme park "Story Land" and staying overnight at a local motel. Terry doesn't have any vacation time left, so we thought that we could go on a few small weekend trips this summer. Some quality family time will do us all some good