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.

Friday, April 18, 2014

We were in Boston earlier this week for a few of Matthew's appointments. Matthew saw his Renal Dr. , his Mito Dr. and the OT at the Augmentative Communication Center   . We had to cancel his GI appointment because one of his other appointments ran over. His GI doctor is easy to reach by email , so we will just update him and reschedule it.  Matthew also had the labs drawn for the total gene sequencing and for OPA1. Matthew's genectic doctor found that within the region Matthew has deleted there is one gene that could possibly be of significance (autosomal recessive inheritance), OPA1.  They will sequence this gene to see if  he has a mutation in the gene (and knowing he has the other copy deleted) This would suggest a possible explanation for his severe gastric dysmotility.  This test takes 6- 12 weeks to get results.
Matthew has grown some in height. He is now 44 inches and 37.5 pounds :) He is almost 9 1/2 and  about the height of a typical 5 year old. His weight is still about the weight of an average 3-4 year old. Regardless, we are happy with any gain :)
Matthew has always had a fluid intolerance issue and he is very sensitive to even the smallest changes in fluid intake. We have been working hard at trying to continue giving all of Matthew's nutrition and fluids through his gut and not have to go back on TPN. So far, he has continue to be stable in doing this. However, he does get easily dehydrated when his system is stressed due to an illness, the weather etc. Matthew will now have a written plan for IV hydration whenever needed. He will be able to go to our local hospital to get a slow rate of IV fluids whenever he is under the weather, looking dehydrated or just not himself. This should  rebalance his electrolytes and perk him back up .
We also bumped into his surgeon in the lobby of BCH. We mentioned his  red and very raw looking Jtube stoma. She took a look and suggested putting steroid cream on it again for a week and then sending her a picture to see if it helped. So far, it still looks very red, bleeding and irritated
As for fun things we did while in Boston, there were plenty.  We stayed at the Yawkey Family Inn. Matthew loves when we stay at the Family Inn since he can play video games on a large TV. :) We took a walk to the Clayroom in Brookline and painted some very cool pottery . Everyone there was so kind to Matthew. He definitely wants to go back next time we are in town.
We  visited the Museum of Science and saw the Magic Treehouse planetarium show. We went to the aquarium where Matthew touched real stingrays and starfish. We visited Hilliards House of Candy. This is always a treat for Matthew. He loves the soft rose mints they make.
We were also able to visit our good friend Sarah at MIT. She gave us a tour of her school and showed us a few labs. Matthew was very interested and had a great time.
We do have some very exciting news. Matthew will be receiving an adaptive bike from Preston's March For Energy. We have been in contact with Deb, the founder of this organization for months now. By chance, we actually met her and her family in the parking lot to the Mall in Vermont on our way to Boston. They were there presenting another sweet little girl with her new adaptive bike. Matthew's bike will have a pulley system on the pedals that should make it much easier for him to pedal. He has never been able to go further than our neighbors on his current tricycle without having to be pushed using the parent handle.

Matthew woke up not feeling well this morning. I am hoping that it will pass and that he wont have to end up going to the doctors.

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