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 2, 2014

Nice weather has finally reached us here in NY. Matthew has been able to go outside the past few weeks. Spring is his
favorite time of year. With the exception of today, the temperatures have been perfect .Less than a month of school left before Matthew is on Summer vacation and finished with 4th grade.  Soon, most days will be too hot for Matthew to enjoy much time outside. His portable fan and cooling vest will be his best friends. Hopefully he will go swimming in our pool more than a few times. I am sure his friend Ava can convince him to go swimming.
We have had a busy month. Our oldest son Bradley and our niece will be graduating High School in a few weeks. We've been working hard to get the house fixed up as we're having the party here. Fingers crossed that the weather will be nice as we are planning for an outdoor party.
We had a friend of ours raise money to help us with our medical and travel expenses for Matthew. She suffered a spinal cord stroke in her twenties and uses arm crutches to get around. She decided to run, yes run, a marathon to honor Matthew. She says Matthew is her hero and looks up to him for inspiration. On Sunday May 25th she did the Vermont City Marathon going the whole 26.2 miles using her arm crutches. She had Matthew and her son meet her a few hundred feet from the finish line and they all crossed together. It was an amazing sight to see.
Matthew is still struggling to gain weight and our latest attempt to advance his j feeds didn't go to well. He started having problems with the increased rate and we had to lower the rate down from 74ml/hr . His stomach was bothering him and there was a huge amount of air trapped in his stomach. He has done much better once we lowered the rate. We will continue to try again to advance the feeds. He is currently at 73ml/hr for a total of 1533 ml per day which equals 1,533 calories.
We have follow up appointments in Boston in July.

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