Matthew has not been doing the best in terms of his feeds. We have attempted to get more weight on him by increasing his feeds. He was getting his feeds and 58/hour and over a period of 5 weeks we slowly increased the rate to 61/hour. Unfortunately Matthew has lost a pound during this time. He is almost 9 years old and only 34 pounds. This is our 3rd time trying to get Matthew past this point and he has done the same thing each time.
Terry spoke to Matthew's GI doctor in Boston and he wants to put Matthew in the hospital to see if we can get some weight on him. He had us lower the rate back to 58/hour to see if Matthew can gain back the weight he lost. Matthew's doctor is going to try and think of some different ideas to help Matthew. A different formula, another supplement or possibly putting Matthew on TPN even for a short time. We are hoping to avoid a hospitalization but will do it if there are no other options.
Matthew is still without his Mito Cocktail as his insurance stopped paying for it. Terry is working on some things that may get it covered. We can't afford to pay for it ourselves as it costs $800.00 - $1000.00/month.

Matthew had his overnight sleep study done last week in Vermont. He didn't mind it at all and fell right to sleep. We should get the results this week.

Despite the current medical issues, Matthew is enjoying 4th grade. He likes seeing his friends and he loves his teachers. He also looks forward to weekend play dates with his friend Ava. They are super silly together. Last weekend, they spent the day together in Albany for a Starlight function at the Pottery Place.

                                  

We are in the midst of Mitochondrial Awareness week. We have been posting pictures of Matthew and our friends helping raise awareness for a disease that claims more children than pediatric cancer does. We have some really wonderful pictures of people showing their support of ridding us of this horrible disease.

We are not having the best week ourselves though. We are having a hard time with Matthew's insurance once again. We are still trying to find a way of getting his Mito Cocktail covered. The insurance was covering it and then they decided to change what they will cover. This has affected us but many other people as well. Another problem is getting his feeding supplies to us. Every so often the insurance requires an authorization to continue covering the feeding supplies (formula, bags, tubes, etc). It is always a nightmare because it takes so long to get and Terry spends a lot of time with the insurance and supply company to get this taken care of. We are always very close to running out of his formula and it gets very stressful. If he runs out of food we would have to bring him to the hospital.

 Matthew had his checkup with his pediatrician yesterday who has taken care of him for almost nine years. Just like every visit both the nurse and doctor went over his medicines and allergies. He is allergic to eggs and nuts and a couple of medicines. His pediatrician prescribes Matthew an Epipen for egg exposure.
Matthew has never been able to get the flu vaccine because of his egg allergy. There is a new egg free flu vaccine that doesn't use eggs in the manufacturing of it. Terry asked for the egg free flu vaccine for Matthew because of his egg allergy. He asked 6 or 7 times if the vaccine being brought in was egg free. He was told by the nurse giving the nasal FluMist that it was egg free. He wasn't given a fact sheet on the flu vaccine that Matthew received. I looked online and found out that the vaccine Matthew received is not for people with egg allergies and/or metabolic disorders (Matthew has Mito disease). Matthew had a reaction to the vaccine with muscle spasms, itchy legs and twitching around his mouth(luckily no swelling, hives or shortness of breath). Terry called the pediatrician and we did not get a phone call back from her. Terry called Matthew's metabolic doctor in Boston and was told Matthew needed Benadryl and would need to be brought to the ER if he got worse(he didn't).
Terry called the flu vaccine manufacturer and had to fill out an adverse reaction report because under no circumstances should Matthew have gotten that vaccine. He was told by a pharmacist for the manufacturer that the CDC doesn't recommend nasal FluMist for egg allergic people or people with metabolic disorders because there are NO clinical studies showing if it's safe or not in those kinds of people.
Terry talked to the nurse who gave Matthew the vaccine and was told she didn't know he was allergic to eggs (it's on his chart and Terry asked several times if the vaccine was egg free). The nurse claims Terry asked about an ingredient we have never heard of, Thimerasol a preservative. She said she was sorry for what she did and is glad Matthew is doing ok(he seems to be ok at the moment). Matthew now has a live vaccine inside of him that he should never have gotten. Imagine the fear of not knowing what the hell to expect  because someone screwed up.

Mito Superheros

Hero

We had a very busy weekend in Boston. We left Saturday morning and arrived at our ever so familiar Hotel in Boston. Matthew's Gramma, Papa, Uncle Johnny and "Hat" Sue were also staying the night there. "Hat" Sue gave Matthew a big bag filled with new clothes. Matthew tried on an outfit right away. He also was given two huge boxes filled with freeze pops, lollipops and a few water toys from his Aunt Kathy and Aunt Barbara.

Matthew's big surprise was later that evening. Our friends Nichole and Ava decided at the last minute to drive from Plattsburgh to Boston to surprise Matthew. He was speechless when he opened the hotel room door and saw Ava and Nichole standing there. :)

We had a beautiful day for the MitoAction on Sunday. They raised over 100 thousand dollars. Team Mighty Matthew raised almost 1300 dollars of it. A huge thanks to everyone who joined us or donated. Together, we can raise awareness and help find a cure.




Matthew had an orthopedics appointment on Monday morning. He will getting new Afo's with more padding and support build in. His current ones are only about 8 months old, but they have been hurting his feet.




His renal appointment went ok. Dr F is so very compassionate . He really has been trying to figure out Matthew's complex system, but has no answers for us. We have increased Matthew's formula rate from 58 ml/hr to 60 ml /hr in the past 4 weeks. In that time frame, Matthew had tripled his urine output and lost almost a pound. It makes no sense. Matthew's system is so very fluid sensitive that the slightest change in fluid intake causes his body to go wacky.




We still need to discuss things with Matthew's GI doctor, but the plan is to increase to 61 and see what happens.


Matthew is still not on part of his Mito Cocktail. This is the very expensive compounded one that is over 800 dollars a month. His insurance is currently not covering it.

Matthew will be having his sleep study done on the 26th in Vermont. Hopefully we can figure out why he is up so much during the night.

 

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.