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.

Monday, October 12, 2015

We will be traveling back to Boston later this week for the first of three trips in the next month. Matthew will be having his motility studies done on Friday. We will also be seeing a genetic counselor and then have our blood drawn for the Whole Exome Sequencing testing. This is a very expensive test that took us a long time to get approved by both the hospital and Matthew's insurance . We are glad that it's finally getting done.It's been almost 3 years.  We are trying to also fit in an orthopedic clinic appointment while there. Matthew has been having increased foot pain in both feet now. He has been limping off an on daily.


The second trip will be on Matthew's Birthday in November. Matthew will be having a repeat gastric emptying test done. He is super happy that he will be eating radioactive oatmeal for the testing. He said its a great Birthday treat. Only Matthew would think that radioactive oatmeal sounds good. We will be staying through Saturday the 7th to see the Fenway Spartan Race. A team of "Mighty Matthews" will be participating in the race . It should be pretty cool to see .

Our third trip is also in November. Matthew has some follow-up appointments with Cardiology, Metabolism, Complex Care and possibly Nephrology.

I put together a new video and used it for Mito awareness week.

https://youtu.be/9X84sXDQ22E

Also, Matthew attended a family camp weekend a few weeks ago and performed in the talent show with his new freinds .

https://youtu.be/f7hXNN-p8BE