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, August 25, 2011

Just a few pictures of visiting the Franklin Park Zoo and Matthew's J-tube surgery in Boston.

At the Zoo the day before surgery.

Matthew and Sheldon.

Matthew loves these castles. He plays with them every time he is inpatient.
Matthew and his friend Emalie

Matthew was very quiet when his belly was hurting.

Strong enough to go home :)

Friday, August 19, 2011

Matthew's fever was gone this morning and his ostomy also started producing some output. He was able to sit up, was more alert and enjoyed the company of two little friends, Sheldon and Emalie. It was the first time meeting Sheldon who was also inpatient but just discharged today. Sheldon thought that Matthew's AFO braces were pretty cool. Emalie was full of smiles and both Sheldon and Emalie loved Matthew's favorite bedtime Mickey. Matthew loves his new smurfs , perfection game and art supplies. Thank you Nicole and Emalie . I think we might decorate his window tomorrow:)

His Foley catheter was removed this afternoon and in true Matthew fashion, he hasn't peed since. His nurse just scanned his bladder and it does show that it has urine in it. We are giving him til morning to go on his own. Vivonex ten was started through his new J tube at a very slow rate of 5 ml/hour. Since the feeds have started, he has been saying that his belly hurts. We are keeping our fingers crossed that his belly is just sore from the surgery and not from the feeds. His doctors are also keeping a close eye on his ostomy output. We have been emptying his bag almost every hour for the past 4 hours and draining 200 cc every time. This is much more that he is taking in. They decided that he should have his IV fluids restarted at a low rate to keep him hydrated.

He hasn't walked since surgery yet but he went for a short ride in his stroller and stood to get weighed. Tomorrow he needs to get up and walk a bit even if it's just around the room.

Tuesday, August 2, 2011

The "Mighty Matthew Benefit" was a huge success despite one small bump in the road.

Matthew's ileostomy prolapsed for the first time ever just minutes before the walk began. I remembered his nurse in Boston saying to pour sugar over the stoma. With the help of some of my wonderful friends, we found some sugar at a nearby house. The house we knocked on ironically happened to be the home of a school nurse. She quickly found some sugar and welcomed a group of complete strangers into her home. The sugar seemed to retract his stoma some, but we ended up having to leave the walk and bring Matthew to the ER. A little over an hour later, his stoma was in and "Mighty Matthew " was back. :) We returned for the end of the morning activities and matthew was able to release some special balloons for Eithene's 5th Birthday.

Matthew rested at home in the afternoon and had a blast at the Naked Turtle for the evening event.
THANK YOU to all that helped, supported us and shared in this magical day.