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.
Thursday, July 3, 2014
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.
Posted by nyveggie at Thursday, July 03, 2014