We are back from Boston. The big team meeting was cancelled late  Friday afternoon due to our GI doctor not being able to attend. He claimed that he didn't know about the meeting even though the entire team had confirmed this meeting weeks ago. We had a few other appointments to go to in Boston the same day , so we went just the same.
Matthew saw ortho for the bumps on the back of his heels. They sent Matthew for x-rays of his feet. They said that his bones looked good  but that he has bursitis on both heels. They said that his  AFO braces did not cause the bursitis , but that they needed some padding to protect his heels until they heal. The most common cause of bursitis is overuse of the area affected.  In Matthew's case he is probably harming his feet with his current activities, even though he is less active than typical children are. They are hoping that the bursitis goes away  in a few weeks with rest and not over doing things.
We had an informal appointment with his kidney doctor. He has been great with us and we really like him. He is going to talk things over with his nutritionist and see if we should increase Matthew's diuretic  or try and increase the formula volume slowly again. He also recommended that we make a follow-up appointment with Matthew's urologist to discuss the absence of "feeling the urge" to urinate. Matthew usually only urinates twice a day and only when we make him go. If we don't remind him to go, he just wont. Last week , he went over 24 hours without urinating and didn't even realize he had to go. His bladder is very large, and he produces such a small amount of urine (no more than  200 cc/24 hrs).  
Also, after meeting with two members of the PACT team, we decided that we will be getting a new GI doctor. Our current GI doctor is almost impossible to reach and hardly ever gets back to us or answers our emails. This is a big problem since most of Matthew's issues are GI related. They agreed that we needed someone who would be able to be involved more in Matthew's care and treatment plans. We will keep our old GI doctor only for motility issues.
 

After our appointments , we stopped by the Boston Marathon Memorial site where Matthew placed a small lollipop bouquet on one of the trees. He also left a small message of hope on one of the signs. We also were able to have a quick visit with our friend Sarah who is currently inpatient. :) We are bummed that we were not able to fit in a visit to see our other friend Chelsea who is also inpatient. Time got away from us, and it was too late to see her. We needed to get home. :( Chelsea, we promise to see you next time :)
New Pictures on :
www.caringbridge.org/visit/matthewcech 


Deputy Mighty Matthew's slide show;
http://www.youtube.com/watch?v=5c2SSEnJp7Q&feature=share&list=UUUx3MZfRTpCHv_6fRa9oiag

We now have a new Deputy in our house. Yesterday, Matthew was Deputized in the Town of Lewis. He went on his very first patrol and captured the "Lollipop Bandits" . His reward..... close to 1000 DumDum lollipops . He had a very adventurous afternoon and smiled from ear to ear. His favorite part of the "Capture" was spraying the Bandits with training "Pepper Spray" :). We can't thank the Essex County Sheriff's Office enough for making this day so special. It will definitely be remembered .

Matthew's formula rate is up to 59 ml/hr since Friday evening. His belly is quite distended and his urine has decreased even more than normal. Yesterday, his hands were puffy . This rate might be pushing Matthew past his fluid limit. We may have to back down a bit and see if he can adjust.

Matthew's follow-up team meeting in Boston is on April 29th. Terry and I are planning on attending. It will be a busy week for us . Boston on Sunday and Monday; Bradley has surgery on his foot on Wednesday ; Confirmation on Friday for Bradley; celebration party on Saturday; and back to Boston on Sunday and Monday for more appointments.

It's been another busy three weeks.

  

Matthew had his four bottom baby teeth removed a few weeks ago. He was very brave and they were out within minutes. He is now sporting a brand new , big boy, toothless smile.

We never heard back from his GI doctor about adding a supplement to his formula, so we decided on our own to try adding a small amount of Polycose to his formula once again. Matthew is so thin and still so hungry, that we felt we had to try something. His current rate of formula is at 53ml/hr total 1120 per day. We have been adding the Polycose slowly . He gets 6 tlbs over a 24 hr period. This equals approximately an extra 140 calories. We are increasing it at a slow rate and checking his sugars often since we have been getting numbers as low as 60 and as high as 210 just with the small amount of extra sugar. If his numbers become consistently above 200, a small amount of insulin will be trialed. The trial would be done either in Vermont or Boston. If insulin is used, we would be able to increase the Polycose even more. This would add extra calories and hopefully would satisfy his hunger.

His new AFO's are working well. He says that they feel good and he loves that they have Batman on them.

We will be traveling back to Boston next week for followup appointments with metabolic, GI and Complex Care.

We were able to enjoy a few events the past few weeks. Matthew attended out local SUNY Hockey team Make-A-Wish dinner. It was a Hollywood themed event. Matthew and his good friend Ava wore matching Hollywood shirts and both had a blast.

We also attended the MDA Muscle walk in Albany this past Sunday. They raised over 67,000 dollars at the event :)

Also on Sunday, we saw the Globetrotters. After the show, we were escorted onto the court where Matthew met the team and got autographs and pictures with each of them.

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.