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.

Wednesday, July 30, 2014

I can not believe it's almost August already. The summer is flying by. Matthew loves his new adaptive bike. He has also been back in the pool and relearning how to swim a bit. He is able to swim underwater about 6 feet back to the ladder. He enjoyed camping even though he came back home at night. It was easier to do his meds etc at home. A good share of his summer days in between outings has been spent relaxing on the couch with his ipad and beanie babies.
Matthew had allergy testing done last week . He was tested for environmental things like trees, grass, dogs, cats etc and he did not show an allergy to any of them . He was also retested for eggs and nuts since he had an allergic reaction a few years ago from cracking the shells of some mixed nuts during the holidays. We were never sure what nut caused the reaction. Well, he still shows an allergy to eggs but he reacted to the nuts more. Within 5 minutes, the skin test marks were big hives and after 10 minutes , the hives started to blend into each other and he also started to get hives on other parts of his arm. They concluded that he reacted to all tree nuts, peanuts and  coconut.  He was very itchy and said the hives hurt when he touched them. They eventually started to go away and after two days , they were gone.
Tomorrow , Matthew is having a Gastric Emptying Scan done at our local hospital. His last scan was over 4 years ago . Matthew so desperately wants to be able to eat solid food even if just a few tiny bites. This test will give us a little more updated  information about how well if anything his stomach empties food. He is super excited to be allowed to eat oatmeal tomorrow for the test even knowing that it is probably going to cause stomach pain. We will not be able to vent his stomach at all until the test is complete. This usually is at least 4 hours long.
We will also be going to Boston on August 13. It will be a short stay for just a few appointments. He will have more appointments in September and again in December.


Thursday, July 3, 2014

It was a crazy busy month of June. Our oldest son Bradley, graduated from High School. He is off to Suny Potsdam in August with a full scholarship . He will not have to take out any loans or pay anything out of pocket. His education will be covered 100% including his dorm room and meals. We are very proud of all of his hard work . Steven will be going into 10th grade and Matthew in 5th. On the last day of School Matthew rode home in style. Our friends from the Essex County Sheriff's Department picked Matthew up in a Humvee . :) Matthew  though it was the coolest ride home. :)
Matthew is enjoying the first week of summer break. The weather here has been super hot and humid (I love it) , so Matthew has been relaxing in the pool and sitting by the fans. He was swimming a little bit last year , but can not swim yet this year. I tried a few times with him , but he can't keep his head up out of the water.
On Saturday Matthew will be receiving a new bright green "Mighty Matthew" adaptive bike from Preston's March for Energy. We will be meeting Preston and his family so they can present him with his bike. Matthew has tried for years to ride regular tricycles , but he never gets more than a 100 feet before he can no longer pedal it. This bike will have a pulley system that should allow him to use less energy and to ride with his friends. Our friends from Goss Dodge Chrysler will also be there to see Matthew receive his bike.
On a medical note, Matthew's labs have been off more than his usual the past month. His sodium which is always low , has been even lower. A few weeks ago it was 130.  He also was treated for a J tube and G tube infection. They were pretty nasty looking and building up quite a bit of bleeding granulation tissue. His J tube looks much better, but the G tube still has some healing to do.
A few weeks ago, Matthew was complaining of increased hunger. He was sneaking foods and drinks and then telling us, so we could syringe the food back out through his G tube. I was also called two days in a row at work while he was in school. He was caught twice eating food out of the garbage. As much as we wanted to be angry with him, its too hard when he cries and says he is so hungry. He tells us that his brain knows what the food will do to his stomach , but its his heart that tells him to take it. 
We contacted his GI doctor and with his approval, stopped giving him his Ciproheptadine. One of the side effects of this med is increased hunger.  This medication is also used to dull stomach pain . The hunger issue seems to be better now that he is off of it, but he now has stomach pains and pressure and is complaining of increased thirst. We spoke to his GI doctor once again and he started Matthew on Gabapentin. He started him on a low dose and will increase depending on how handles it. So far , Matthew's only side effects from it are headaches. Since its only been two days , we are hoping the headaches stop as he gets used to the med.