With the exception of a small bump in the road, everyone here had a good Christmas. Steven ended up having a high fever on Christmas eve but was feeling well enough to open gifts on Christmas morning.

 

Matthew received his "Time Machine Kit" complete with instructions on each item included. He was beyond excited and keeping it safe in his room. He also got a 2 foot homemade candy cane. He wanted to open it right away. "Delicious" is what he said when he took his first lick. He held onto it all morning until he accidentally knocked it off of the table. It broke into pieces and he was so upset. We rinsed off the pieces and told him it would be easier to eat now that they are smaller . :)

The past few days have been spent cleaning up the holiday mess, taking down the tree and organizing the new stuff. Matthew has enjoyed being in all of his new jammies and playing with all of his new toys. He has also been very busy reading his new Magic Treehouse books and his Percy Jackson series.

Tomorrow he goes for labs. Last week they were off . Hoping they are better this week. We are at a stand still with everything else. Still no real plan to get better nutrition into him without causing more problems.

Watching it snow. 15 inches so far.

Matthew started having a few issues with the increased formula rate over the past few weeks. 

 On October 1st we increased Matthew's feed rate to 52 cc/hour. On Tuesday the 2nd Matthew was seen by his PCP and was diagnosed with a double ear infection and possible strep. She started him on Zithromax for the infection. On Friday Oct 5th he woke up and his face and belly were swollen. Saturday morning , his weight was up 2 lbs from Friday morning. His face, hands, feet and belly were swollen. We turned the rate down to 51cc/hour and just watched him. Over the next few days his weight remained up and the swelling got better but we had to go back down to 50cc/hour of the feed. It took almost a full week for the swelling to be completely gone.

  Interestingly Matthew's potassium level on the 2nd or 3rd was 4.4( the best it has been in over a year). We had the labs redrawn Saturday the 6th because of the swelling. His potassium was now low at  3.0. He had labs drawn again on Monday and his level was back up to 3.8. (normal level). Dr. Fergusons office called concerned about the drop in potassum, asking if  Matthew had been vomiting? No he wasn't sick other than the ear infection and this strange fluid gain from nowhere. There was no other changes to his regimen. Dr. Ferguson had emailed us Monday thinking that we might need to try a mild diuretic to keep this from happening again.

  This fluid retention issue seems to be the biggest stumbling block that we are facing right now. Hopefully if we can get this figured out we will be able to advance his feeds and get some good nutrition in him. He currently is at 50cc/hour of the Vivonex TEN and is handling things well. We are planning on getting his labs drawn again tomorrow.

Also, this past Friday, we noticed that Matthew's Jtube is now leaking from the opening. It's over a year old and looks like now it needs to be replaced. We heard from Matthew's surgical office and they told use that they will try and schedule the procedure while we are in Boston in November. We will probably have his gtube switched out the same time as well.

We leave for Boston on Matthew's 8th Birthday on Nov. 6th. We will be seeing several of his doctors and having some of his annual testing done. We will be there the 6th-10th.

On a more positive note, Matthew decided that he wants to be a Mighty Matthew Ninja for Halloween this year. Since he cant eat the candy, he will be handing out candy again this year at a few of our local town events :)

July is almost over. Matthew has one busy little boy. He only has two things left to cross off of his summer bucket list. So far the only this that he has not like has been..... CLIMBING A TREE... and this was the number one thing he wanted to do on his list. :) We tried to find him a nice beech tree to climb because I heard that they have low branches , but we were unable to locate one. We did however find a beautiful maple tree in New Hampshire on our way back from Boston. It was in a huge field and at least we (Terry and I) though it was perfect. Matthew had a different view on it. When we placed him on the first branch, he realized that it was pretty high up and he was scared. We reassured him that we were right there and we were not going to let him fall. Then, he notice that BUGS also live in the tree and not just any old bugs........ "HUGE LONG LEG BUGS WITH PINCHERS " .. He wanted out... I convinced him to take a few pictures and then he was done. He decided that he would stick with tree houses.

 

He played frisbee with Damian, played on a big playground and went exploring on Valcour Island with our friend Nichole and her daughter Ava. He also danced with the Glengarry Bhoys at an outdoor concert.

The days in between have been spent resting on the couch with his favorite ipad. Some days he ventures out to the back porch or to the camper when its cooler.

As for his medical appointments . They went ok. We still have some decisions to make about

 some discussions that went on at our team meeting in Boston so we haven't posted about it yet. As soon as we decide on a set plan we will let everyone know.

For more recent medical updates visit www.caringbridge.org/visit/matthewcech
It's been a busy few months. Here are just a few pictures and video links to catch everyone up. : Matthew had a sleepover at his friend's house :)

Matthew danced with the Glengarry Bhoys

We have enjoyed a few really nice days outside
Matthew made a super cool Leprechaun trap.We went to see Disney Princess Live in Albany

Matthew released two balloons in honor of a special little Mito Hero, Brent.

Matthew can no longer eat the Gerber puffs we have been giving him. The small amount of puffs, along with some candy sticks were causing too much trouble for his belly. He was losing far too much fluid and his belly was becoming distended. He is back on just 24 hr. formula feeds with gum, lollipops. We do let him have bites of sugar as well. He continues to feel both hungry and thirsty at his current 54/hr rate. He was not as hunger obsessed at the lower rate, but we are trying hard to push forward with increasing his feeds since he needs the extra nutrients. He still has not gained any weight. He is the same as he was before the tube feeding began. Again, this is very frustrating since he really hasn't shown any improvement on the j feeds.

He will be going back to Boston in a few weeks for inpatient motility testing.

Last weekend, Matthew's favorite band, The Glengarry Bhoys were in town. He was super excited. He dressed in his kilt and was all ready to rock it out with the band. Unfortunately, the band had some technical difficulties and started later than scheduled. Matthew ended up getting very tired and was falling asleep on the pool table. Terry had to take him home and put him to bed. On a good note, since we are friends with the band, he was able to talk with them a bit before the show, and he even got a new patch for his backpack from Graham(the lead singer). He thought that was pretty cool.

Matthew did have a wonderful weekend. We traveled to Albany on Friday evening to see Shrek The Musical compliments of the Starlight Foundation. It was a wonderful show and Matthew laughed and enjoyed the whole show. He did fall asleep a few times but was startled awake by Shrek's loud voice. :)

Last night we attended the annual Make-A-Wish Cardinal Hockey Dinner. Matthew does not know a lot about hockey but he had a blast. He brought his good friend Ava with him and again, he made it through the entire event. He had his moments where he just had to lay down and rest on the floor, his chair and on us, but he would perk back up and he even showed some of his dance moves. :)

Today, he woke up very puffy and exhausted. He has spent the entire day on the couch. This is one of the many downfalls of having Mito. Hopefully by tomorrow he will have rested enough to be able to go to school.

Matthew singing with his class.

Christmas Morning . Matthew was so happy to get his real Magic wand.

Matthew loves this book.

Matthew on New Year's Eve.
Matthew at the Make A Wish Bridal show. He carried Eithene's special tiger "cloud" with him during the show.