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.

Saturday, October 1, 2011

We are celebrating today. Matthew has successfully tolerated a full week on 24 hr/day J feeds. We had a slight bump in the road on day three. His J tube started to pour out fluid and formula. It lasted about 12 hours and finally slowed back down. Both Terry and myself were beyond frustrated. He is allowed to take very small sips of water about two ounces total each day. He is also allowed to eat lollipops, small bites of maple sugar candy and gum. He isn't really hungry and for the most part just sucks on an ice cube and chews gum most of the day. We are keeping his belly vented all of the time . He is getting 1200ml of formula/day which equal 1200 calories. He is also still losing about 500-600 ml/ day through his g-tube. He also hasn't gained any weight yet, but we are hoping that we start seeing some weight gain soon. He looks so very thin. He is going to his very first sleepover tonight at our friend's house tonight. I will also be sleeping over . :) He is very excited and has been talking about it all day.