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.

Sunday, November 16, 2014

We are home from Boston. It was a long but pretty productive week mixed with some fun.

First the medical update and then the fun stuff.
Complex Care- appointment went well. Matthew was 38 1/2 pounds , and 45 3/4 inches tall. Matthew will be getting referred to physiatrist to assist with strengthening his muscles to possible help increase his endurance. Since our Mito doctor has left Boston, they have agreed to help us with school and insurance letters.
GI- This was a follow up to his fecal impaction from a few weeks ago. Overall the doctor is pleased with how Matthew is doing. He continues to very slowly gain weight and grow taller. He would like to see more growth but he is happy that Matthew's growth charts are following a nice curve and Matthew hasn't lost weight or plateaued like he has in the past. We talked about ways to prevent future impactions, two being enemas or physical therapy. We did find out that there are some new supplements similar to the Polycose that Matthew was on before. Polycose had been discontinued and we were given samples of 2 different brands to try and see if Matthew can tolerate them. This allows us, if Matthew tolerates it, to add more calories to his feeds without increasing the rate or volume.
Metabolism - Matthew's doctor also agreed to help with school and insurance letters. The main focus of the visit was on the testing Matthew had done for OPA1 which the doctor thought might be the genetic reason for Matthew's Mitochondrial Disease. The testing came back ok showing he didn't have this. The doctor ordered the Gene Exome testing for Matthew which tests over 22,000 genes. We had been part of a research study which our entire family had been tested but we never received results. The doctor hadn't received them either and since the test is now available commercially he wants it done. Matthew had the labs drawn and we are waiting to hear if the rest of us need to be tested.
Cardiology - Matthew had an Echo and EKG done and saw the doctor. The Echo and EKG were normal and we discussed some issues Matthew has been having with chest cramping and palpitations. She didn't think there was anything to worry about, but she is ordering a 24 hour monitor just to be on the safe side.
Orthopedics - The easiest appointment we have but one of the most frustrating because they are always way behind (this time 1 1/2 hours). Everything looks good, Matthew only has to wear his AFO's when he is going be active for a long time (gym, recess, walks). His current ones still fit but we have to get them adjusted since he has developed a bony growth "pump bumps" on both ankles.
Matthew has started a new medicine prescribed by his Nephrologist, sodium chloride, which is salt water. He has been having problems with low sodium and chloride recently. His doctor is hoping that this will correct these issues and also force his body to hold onto more fluid which would help with his chronically dehydrated state. If it works we might be able to decrease his potassium supplement and in turn improve his motility and his absorption of calories. 
Dentist- Matthew had his two incisors removed yesterday. His mouth is small and there is no room for his adult teeth to come in. He has had 9 out 12 baby teeth removed the past year and a half by his dentist.

Now for the fun stuff !
-We visited Hilliards House of candy when we first got to Boston. This is Matthew's favorite candy store and the only candy store that makes Rose Mints that Matthew can eat :)

- We were able to visit the Stone Zoo where Matthew was able to see a real Tree Kangaroo named Kakota. Tree Kangaroos have been Matthew's new favorite animal since he read about them last month in school .We practically had the zoo to ourselves since its almost winter and it was a school day when we were there.

- Matthew was able to eat a small sliver of his Icing Smiles cake that was delivered to the Yawkey Family Inn where we were staying. The baker, Stephanie was super nice and the cake was great. Matthew ended up having a big upset stomach after he ate it, but he said it was worth it just to taste real food. I was able to vent most of it  back out through his G-tube and he felt much better .

-We visited Sarah at MIT. She took Matthew up to see the Shutter Lab. Matthew loved it and had a great time. Its always a fun time when we see Sarah.
-The new Seacrest Studios opened up on Friday. We were caught up in Matthew's last appointment and missed seeing Ryan Seacrest and Usher, but Matthew was able to be a guest in the studio. He was on air and televised for about 45 minutes and was not shy at all. That kid is made for entertainment. He loved every minute of it.

Monday, November 10, 2014

Matthew had a wonderful Birthday weekend. Members from SUNY Plattsburgh Baseball team stopped over on Thursday night to wish him a Happy 10th Birthday. They stayed and visited for awhile and even had a mini dance off. We had a small family party on Saturday and Matthew took a few of his friends to see Big Hero 6 on Sunday. He loved the movie and now is interested in trying to build his very own robot. :)

We leave for Boston in the morning. Matthew has his routine appointments and testing through Friday. Friday afternoon we will be driving to Albany for the night and then off to Glens Falls Saturday morning. Matthew will be having his two incisors removed by his dentist. He needs some room for his adult teeth to come in.
 Its going to be a busy week medically but we are trying hard to fit some fun things in while we are there. Matthew will have an Icing Smiles Cake on Thursday. This will be a "Matthew Friendly" cake that he will be able to taste and maybe eat a small piece.  We are also going to the Stone Zoo to see a Tree Kangaroo. Matthew has been reading about Tree kangaroos and wanted one for his Birthday. We found out that they have one at The Stone Zoo which is only 9 miles from where we are staying. Since its not possible to actually own one, he will at least be able to see a real live one at the zoo. :) He is super excited.