Matthew gave us quite the scare . While at our friend's house last night, Matthew was having fun trying to crack nuts using a nutcracker. He was pretty quiet for a few minutes and then looked up at me and said," Do you know that I snuck a small piece of a nut... and now my throat feels funny." He has never really eaten nuts before except for a few spoons of peanut butter when he was 18 mos old and a few bites of a cashew a few years ago. Within an hour his face had hives around his mouth and nose, his lips and neck were swollen and he was saying his throat still hurt. We gave him a double dose of benedryl and called the on call Dr. He told us that we should give him his epi pen and his last dose of prednisone. He seemed to be resting fine shortly after Terry spoke to the Dr. He woke up this morning with a beat red face, hives on his upper thigh and swollen neck with a big lump on the left side. He said that it hurt to turn his head and that his face felt "tight". I gave more benadryl and he was seen at his peditrician's office as well. We were quite scared that he would have to be admitted to the hospital, but his Dr, said to give him benadryl around the clock every 6 hours for three days. She said to keep a close watch on his airway for the next 48 hours. Now, we need to add NUTS to his allergy list :( I told him that he can not sneak food and that it can be sooo dangerous. I told him that it would be sad if he had to spend Christmas in the hospital. He replied " It would be ok. Santa would know where to go and if not, my gifts would be home waiting for me to get better" .
I just hope that he understands now , just how dangerous allergies can be, and that it could even have been so much worse than it was.
Please keep all of the families who have lost their little ones in your prayers this Christmas. There are so many who have had to say goodbye to their sweet babies and so many who will be spending their first Christmas in Heaven.
Merry Christmas ^^Eithene^^, ^^Maggie^^, ^^Zach^^ , ^^Ellie^^ and so many others.

I also want to take a moment to say thank you to everyone who has sent us Christmas gifts and holiday cards. We have received gifts not only for Matthew, but for Bradley and Steven as well. We have also had several donations that we will place in Matthew's medical account. We are truely thankful for everything. Also, a big thanks for all of Matthew's "Happy mail". He gets the biggest smile on his face every time he opens up his PO Box and sees new cards and letters. Thank you.

Matthew is turning 7 in just a few days. :) He is having a small party at Micheals Store on Saturday. He invited a few of his friends. They will each be making a wish bottle and a superhero mask. Since Matthew can no longer eat, there will not be a "real " cake at his party. I made him a "smell" cake. It is a decorated foam based cake that smells like cotton candy. I am not very good with cake decorating but it came out ok and Matthew loves it . We are also having a small family party on Sunday evening. Matthew will also be attending the MDA Bowl-a thon on Sunday afternoon. He will be rolling the first ball to begin the event. :) (Matthew and Bradley passed out candy to a few hundred children at our local Trick or Treat event)
(Mighty Matthew)
Medically, Matthew is doing ok. He hasn't gained more than a few ounces from the tube feeds , but he is still tolerating the formula at 50 ml/hr 24 hours a day. We are mixing his formula with half pedialyte and then adding extra pedialyte to the mixed formula. He's no longer food obsessed but has become even more obsessed about drinking. We only allow him small sips of water or juice every few hours and his g tube is always open and draining. He can not have much at a time because his belly becomes distended and presses on his j tube which causes a blockage and then it leaks. . Its so hard to tell your child that he can not have a drink of water when he's crying and begging for one saying that he is so thirsty. He gets upset and starts saying that he hates Mito and that he wishes he could be normal and eat and drink like his friends do. :( I try to explain to him that everyone is different and that everyone is special no matter what they can and can not do. As he is getting older, it's getting harder to make him feel ok about who he is and the things he has to go through.
(He wanted to dress as a fairy to pass out candy on Halloween)
We have had some success with the K suppliments. He has been stable at around a 3.5 K level. This is in the low normal range. We continue to give him K suppliments through his J tube twice a day and now only go for weekly blood draws. :) Matthew also no longer uses emla cream to numb his arms for his lab draws. He decided that since he was almost 7 he didn't need it anymore. He is such a brave boy :) (All tired out from passing out candy on Halloween)

We are celebrating today. Matthew has successfully tolerated a full week on 24 hr/day J feeds. We had a slight bump in the road on day three. His J tube started to pour out fluid and formula. It lasted about 12 hours and finally slowed back down. Both Terry and myself were beyond frustrated. He is allowed to take very small sips of water about two ounces total each day. He is also allowed to eat lollipops, small bites of maple sugar candy and gum. He isn't really hungry and for the most part just sucks on an ice cube and chews gum most of the day. We are keeping his belly vented all of the time . He is getting 1200ml of formula/day which equal 1200 calories. He is also still losing about 500-600 ml/ day through his g-tube. He also hasn't gained any weight yet, but we are hoping that we start seeing some weight gain soon. He looks so very thin. He is going to his very first sleepover tonight at our friend's house tonight. I will also be sleeping over . :) He is very excited and has been talking about it all day.

Just a few pictures of visiting the Franklin Park Zoo and Matthew's J-tube surgery in Boston.

At the Zoo the day before surgery.

Matthew and Sheldon.

Matthew loves these castles. He plays with them every time he is inpatient.
Matthew and his friend Emalie

Matthew was very quiet when his belly was hurting.

Strong enough to go home :)

Matthew's fever was gone this morning and his ostomy also started producing some output. He was able to sit up, was more alert and enjoyed the company of two little friends, Sheldon and Emalie. It was the first time meeting Sheldon who was also inpatient but just discharged today. Sheldon thought that Matthew's AFO braces were pretty cool. Emalie was full of smiles and both Sheldon and Emalie loved Matthew's favorite bedtime Mickey. Matthew loves his new smurfs , perfection game and art supplies. Thank you Nicole and Emalie . I think we might decorate his window tomorrow:)

His Foley catheter was removed this afternoon and in true Matthew fashion, he hasn't peed since. His nurse just scanned his bladder and it does show that it has urine in it. We are giving him til morning to go on his own. Vivonex ten was started through his new J tube at a very slow rate of 5 ml/hour. Since the feeds have started, he has been saying that his belly hurts. We are keeping our fingers crossed that his belly is just sore from the surgery and not from the feeds. His doctors are also keeping a close eye on his ostomy output. We have been emptying his bag almost every hour for the past 4 hours and draining 200 cc every time. This is much more that he is taking in. They decided that he should have his IV fluids restarted at a low rate to keep him hydrated.

He hasn't walked since surgery yet but he went for a short ride in his stroller and stood to get weighed. Tomorrow he needs to get up and walk a bit even if it's just around the room.

The "Mighty Matthew Benefit" was a huge success despite one small bump in the road.

Matthew's ileostomy prolapsed for the first time ever just minutes before the walk began. I remembered his nurse in Boston saying to pour sugar over the stoma. With the help of some of my wonderful friends, we found some sugar at a nearby house. The house we knocked on ironically happened to be the home of a school nurse. She quickly found some sugar and welcomed a group of complete strangers into her home. The sugar seemed to retract his stoma some, but we ended up having to leave the walk and bring Matthew to the ER. A little over an hour later, his stoma was in and "Mighty Matthew " was back. :) We returned for the end of the morning activities and matthew was able to release some special balloons for Eithene's 5th Birthday.

Matthew rested at home in the afternoon and had a blast at the Naked Turtle for the evening event.
THANK YOU to all that helped, supported us and shared in this magical day.

Matthew has had some good days. He is able to rest so much more being out of school. We had our annual garage sale on Saturday and Matthew had a blast selling "Mighty Matthew" bracelets and lollipops. He made over 200 dollars. :) On Sunday, we went to Six Flags Great Escape. It was an overcast day which was perfect for Matthew. The park wasn't crowded and with the exception of being caught in a thunderstorm, we had a good time. :)
Matthew was able to bring his new power chair to our local 4th of July parade. He did a wonderful job driving it and being cautious of not running into other people. It was a very hot day and he needed his cooling vest and wrap along with a sun shade. he was happy to get a few of his favorite lollipops to snack on. The excitement is building for his benefit on the 31st of July. Matthew talks about it every day. He calls it his "big party". Tomorrow there will be a "Mighty Matthew" bake sale at our local hospital. Matthew will be stopping by to help out. I am sure he will enjoy it.

We leave for Boston next Thursday/ Friday for two appointments(neurology/metaboilsm). We go back again on the 27th/28th for a few more appointments( GI and mito-metabolism) and his surgery for the J-tube placement is scheduled for Aug. 18th. We have a pre-op appt on the 17th. I am not sure how long he will have to stay after surgery.

A few pictures from last week.

At the Tulip Festival

At the Circus with his friend Colbie.

Just a few pictures from the last few weeks.


Matthew in his new kilt. He loves it. !

Just leaving the hospital.

Visiting with Eithene. :)

Taking a walk through the garden at CHB

We are back from yet another trip to Boston. After three appointments, more blood work and labs , still no real plan. :( Matthew's weight was down some 27 1/2 pounds and he was about 36 3/4 inches tall. He has grown a little in height in the last 6 months, but no weight gain and looks even thinner.:( We have two new specialists that will be added to his mix of doctors who already follow his care. He will be seeing a kidney Dr. and an autonomic Dr.. We will also be seeing the CAIR team (intestinal rehab, clinic) . Terry is busy trying to schedule all of his new appointments. We already have to go back in March for his motility Dr. and urologist. It looks like we will be going sometime in April for the other appointments.
Here's a quick rundown of what went on at his last appointments. His mito Dr. thinks that nothing is going to improve with Matthew's GI function unless we try to get Matthew's fluid issues figured out. He can not handle more than 30 oz. of fluid/day without causing problems. He can not tolerate any fat or excess sugar. He is always starving but can only eat a restricted amount of food otherwise none if it gets digested and causes belly pains. His food choices are becoming very limited as more of his "normal" foods are emptying into his ostomy bag undigested.

His metabolic appointment went ok although he is more interested in figuring out exactly if Mito is primary or secondary to a bigger problem. He also wants to do more testing to figure out if Matthew has a Mito depletion. We really like him, but our main priority right now is to get Matthew growing and try to keep his GI system from getting worse or even shutting down all together.

Our last appointment, the one that we usually find useless was... well..."Useless". It was his GI appointment. After talking again for a few hours, he came up with one of his "plans".
1. He wants us to double Matthew's pancreatic enzymes (they don't seem to do anything for him)
2. He's adding another antibiotic for bacteria overgrowth (Rifaximin)
3. He wants Matthew to avoid fructose, polyols, sorbital, xylitol, maltitol etc.
4. Try to give him peanuts( he CAN NOT digest fats . That will really feel good coming out of stoma in hard pieces...)
5. Try peppermint oil, cornstarch, turkey legs and hummus..... (Seriously!!!)

The CAIR program has some very good GI doctors. Hopefully they will have more of a clue than his current Dr. Matthew's nutritional status is horrible. He is skin and bones but no one seems to know what to do. :(

On a brighter note were able to go to the Museum of Science. Matthew was not feeling well the entire day, but he never complained once. He loved the food exhibit and dinosaurs. We missed the one thing he really wanted to see...The butterflies. They filled up shows before we got there, but Terry was able to get four free tickets for next time.

Matthew was also very excited to give Pancakes a new Twin sister from the American Girl Store. He named her Waffles Eithene Butter.
We were also able to visit with Eithene, Jessica and the rest of her family. Matthew loves to draw Eithene pictures and had several new drawings to give to her. He also showed her some of his new songs on his "ipod"(touch screen MP3 player that he thinks is an ipod touch) He even sang her a few of his favorites including Baby Beluga and Ziggue Zon. We just love her.

SNOW DAY!

Me and Matthew :))))

Making a snow angel for Eithene but not liking laying in the snow.
A snow angel for Eithene!

Trying to get to our snow covered front porch.

Getting ready to go outside in the snow for the first time this winter.:)