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, September 10, 2013
We had a very busy weekend in Boston. We left Saturday morning and arrived at our ever so familiar Hotel in Boston. Matthew's Gramma, Papa, Uncle Johnny and "Hat" Sue were also staying the night there. "Hat" Sue gave Matthew a big bag filled with new clothes. Matthew tried on an outfit right away. He also was given two huge boxes filled with freeze pops, lollipops and a few water toys from his Aunt Kathy and Aunt Barbara.
Matthew's big surprise was later that evening. Our friends Nichole and Ava decided at the last minute to drive from Plattsburgh to Boston to surprise Matthew. He was speechless when he opened the hotel room door and saw Ava and Nichole standing there. :)
We had a beautiful day for the MitoAction on Sunday. They raised over 100 thousand dollars. Team Mighty Matthew raised almost 1300 dollars of it. A huge thanks to everyone who joined us or donated. Together, we can raise awareness and help find a cure.
Matthew had an orthopedics appointment on Monday morning. He will getting new Afo's with more padding and support build in. His current ones are only about 8 months old, but they have been hurting his feet.
His renal appointment went ok. Dr F is so very compassionate . He really has been trying to figure out Matthew's complex system, but has no answers for us. We have increased Matthew's formula rate from 58 ml/hr to 60 ml /hr in the past 4 weeks. In that time frame, Matthew had tripled his urine output and lost almost a pound. It makes no sense. Matthew's system is so very fluid sensitive that the slightest change in fluid intake causes his body to go wacky.
We still need to discuss things with Matthew's GI doctor, but the plan is to increase to 61 and see what happens.
Matthew is still not on part of his Mito Cocktail. This is the very expensive compounded one that is over 800 dollars a month. His insurance is currently not covering it.
Matthew will be having his sleep study done on the 26th in Vermont. Hopefully we can figure out why he is up so much during the night.
Posted by nyveggie at Tuesday, September 10, 2013