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, July 15, 2013
We are back from yet another trip to Boston .
Matthew saw Urology, Nephrology, Nutritionist, Metabolism, a new GI doctor and an OT from the Augmentative Communication Clinic.
Urology- Matthew only pees twice a day most days. He has a very large bladder but also does not produce much urine. We had a follow up uroflow done. He was able to empty most of his bladder. They scanned his bladder when finished and about an ounce remained. The flow was also delayed , but that is common with Mito patients.
Nephrology- We just had a follow-up with Dr. F who has been in charge of Matthew's GI care for past few months. He didn't want to change anything until we saw GI and see what they come up with first. He had some labs ordered and said that we could discuss things this week.
Augmentative Communication Clinic- They are recommending that Matthew use an iPad for all school work that involves more than writing simple questions and fill in the blanks. He had a full size laptop last year, but it was far too big for his small hands.
Metabolism- A few of Matthew's meds were adjusted and they are also working on getting his Mito cocktail formulated differently. We have it compounded at out local pharmacy and has been always been covered . He took his last dose of it a week ago today. We are out of it because his insurance is no longer covering it. It would cost us over 700 dollars a month to get it filled. There are four different meds compounded into it and since he gets his meds into his J-tube, he needs liquid form. Terry will have to argue with the insurance this week and see what they say. He may have to file a complaint with the NYS Dept of Health about it.
Nutritionist- She added calcium and Vitamin D to Matthew's list of meds. He is not getting enough Calcium and since he already has osteopenia, she felt he needed the extra supplements. She will be working along with his doctors to see if there is anything that can be added to Matthew's current formula to give him extra calories. The polycose that we are adding currently has been discontinued . She said when supplies run out, we will have to find a replacement. It's not an easy task with Matthew's complicated system.
GI- We saw a new GI doctor. We really liked his personality and he took time to listen to Matthew's very long and detailed history. He also took time to listen to Matthew and joked around with him. He agreed that Matthew is not your typical case. Most mito patients need a lot of extra fluids. Matthew is just the opposite. His system does not thrive on extra fluids. He told us that he needed to discuss things with Matthew's other doctors and that he would try and come up with a plan this week.
Sweet Eithene's 2 year angel anniversary was on the 8th. We were at BCH that day for an appointment. Matthew let a balloon go in the garden with a note attached. When he let it go, he said out loud' " get ready to catch this Eithene." As chances are, we met Eithene's mom Jessica and Aunt Jill when coming off from the elevator . They were delivering beautiful roses to some of Eithene's favorite spots in the hospital. Jessica gave Matthew one of the roses. He told me that it was special and that he was going to keep it forever. That evening Matthew and our good friend Sarah wrote Eithene's name out in seashells at the beach in Cape Cod
We did fit in some fun during the week as well. We brought our older two boys along and made a mini summer vacation in between all of the appointments and testing.
We visited Hilliards House of Candy where Matthew bought his favorite rose mints and the older boys each had a huge ice cream cone.
We spent an afternoon at our friend Sarah's families house in Cape Cod. Sarah took Matthew out on a kayak and they paddled to a beach not far from her house. I think its one of the few times that I have been able to sit and relax for a few hours while in Boston.
We met our friends Tarra and Rich from Plattsburgh and ate dinner with them at the Hard Rock Café. Mmmm :) They were on vacation also. They live a few miles from us in Plattsburgh so it was weird meeting them for dinner 300 miles away from home.
We ended the week by going to Van Warped Tour. Matthew was selected to be a Dream Child by Living the Dream Foundation. This organization uses music to help children with life threatening illnesses. The Dream Child and family are given full access to the bands, are allowed on stage while the bands play and can meet the band members afterwards. The highlight of the day for Matthew was meeting Wallpaper who sing one of his favorite songs, The Best Day Everrr. He was hoping to see another band called Forever the Sickest Kids but we missed their show. However, he was able to meet the lead singer of the band and have his picture taken with him. Another band we saw called The Used brought Matthew in front of the crowd and had them chant MIGHTY MATTHEW three times.
Posted by nyveggie at Monday, July 15, 2013