Mighty Matthew

2012-01-29T18:12:00.003-05:00

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.

2012-01-17T19:58:00.003-05:00

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.

2011-12-23T22:53:00.008-05:00

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.

2011-11-04T16:06:00.003-04:00

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)

2011-10-01T17:32:00.002-04:00

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.

2011-08-25T20:54:00.003-04:00

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 :)

2011-08-19T22:38:00.001-04:00

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.

2011-08-02T12:32:00.003-04:00

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.

2011-07-06T22:03:00.002-04:00

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.

2011-05-17T16:23:00.002-04:00

A few pictures from last week.

At the Tulip Festival

At the Circus with his friend Colbie.

2011-04-20T09:54:00.002-04:00

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

2011-02-25T16:03:00.002-05:00

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.

2011-02-02T22:02:00.004-05:00

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.:)

2011-01-19T16:22:00.003-05:00

We made it back from Boston a day later than expected, but we are home. We left Boston yesterday around 3. After 5+ hours of driving in an ice/snow storm, we called it quits and found a hotel for the night. The roads were better this morning, but still like a sheet of ice through the mountains. We got home around 1 this afternoon.:) Matthew's CT scan was scheduled for 8:30 yesterday morning. We had to be at the hospital by 7 :15. We waited for an hour in the waiting room before asking why it was taking so long. I guess that they forgot about us. We waited some more and asked again. Finally we were brought back to our room. Matthew had to have two 4 oz. cups of contrast 45 min. apart put into his G-tube. 8 oz. is quite a bit of liquid in Matthew's belly at one time. He also had IV contrast as well during the scan. Our 8:30 scan didn't happen until 11:30. Three hours late. Matthew was wonderful for the entire time and was very happy when it was over since it was his lunch time. :)

We saw the surgeon after the scan. She said that the scan did not show a fistula by his intestines. She said that it did show a very large distended stomach. Matthew's poor belly.:( This we already knew and doesn't explain the belly button drainage. She wanted to take a close look at Matthew's belly button and stoma to see if she could figure out what was going on. When she pulled back Matthew's bag, his belly button was again leaking. Both the surgeon and her assistant could not see where the fluid was coming from. they looked for any obvious sores or inflammation, but his belly button looked ok. So, we really do not have an answer yet as to why it's still draining. They put silver nitrate on it just to see if it would help. They also gave us some Aquagel to help absorb some of the fluid, so his bag would stay drier. If the silver nitrate doesn't work, Matthew will probably have to have exploratory surgery around his belly button area to figure things out. The surgeon said that he could possible have a stitch or scar tissue from his ileostomy surgery that may be "festering" infection. YUCK. As of last night, his button is still draining.
We were able to visit with Eithene. She was just waking up from a nap when we got there. Matthew got up on her bed and gave her his bag of goodies that he fixed for her. Eithene seemed to enjoy her gifts and loved her new baby pony. Eithene made Matthew a beautiful heart message that he hung on our fridge as soon as we got home.

2010-12-27T14:48:00.003-05:00

Merry Christmas!

Christmas morning

Gift from our friend Jess! He loves it

Matthew loves Pajamas! He got several new pairs. This one is one of his favorites!

Resting under Aunt Colleen's tree.

Christmas morning

Matthew's Christmas Dinner (cereal)

2010-12-07T16:38:00.003-05:00

Matthew with Santa.

Matthew at the Make-A-Wish party. He wrote a beautiful letter to Santa.

Matthew with his friend Colbie.

Matthew having himself drawn as an Elf.

Matthew with Santa at the Starlight Christmas party.

2010-11-21T18:04:00.004-05:00

Matthew is still not feeling the best. He has a cold and still running a low grade fever. He spent the day resting at home, watching TV and catching up on his school work.

Friday's appointments went fairly well. He weighed 12.7 Kilos(almost 28 pounds) and was 93.5cm(almost 37 inches). He has been growing very slowly since the TPN trial back in April 09.

His GI doctor who has been following Matthew since he was 18 mos old was again, not very helpful. He is a brilliant man but not helping much with Matthew's current nutritional status. Even with the ileostomy, Matthew can not digest fat or any complex foods. He has to eat simple foods such as dry cereal, soft veggies, soft or dehydrated fruits and small amounts of natural turkey slices etc. His food variety has decreased a lot since last year. We really need to find a supplemental formula that will agree with Matthew's GI system. We stressed this fact to his doctor and also mentioned that his genetics doctor is quite concerned about his nutrition. He did a little research on his computer and said we should try Portagen. It's a formula made for both children and adults who can not break down fats. This was only after he wanted us to try Avocados and Ostrich eggs . He mentions this every time we see him despite the fact that we tell him that Avocados upset Matthew's belly and that we have no idea where we would buy Ostrich eggs!!!!!! Seriously........

We dropped the script for the portagen off at our pharmacy and we are just waiting to see if his insurance will cover it. It needs a prior auth. His doctor also said that this can be bought at any grocery store in the baby formula section. I am not sure about anyone else, but I have never seen or heard of it before. It must be located right next to the ostrich egg section :)

Matthew's orthopedic appointment went well. She said that his AFO's are working well and to keep them the same. His knees still hyper extend and bow in. She also noticed that his hips rotate inward and have too much flexibility. This is something that we just have watch for now.
Also on Friday we had a chance to visit Eithene again. She was awake this time but not feeling well at all. Matthew talked with her some and tried to sing her a song, but she just wasn't feeling up to it. She did tell us a few things like : her favorite princess in Cinderella, she wants to see the new movie"Tangled", and she doesn't like Scooby Doo. We didn't take her picture with Matthew. I don't think she was feeling well enough and I didn't want to upset her. Don't forget to visit her site. www.caringbridge.org/visit/eithenerosehilliard

Matthew also met a new friend Emalie. She is 3 1/2 and a sweetheart like Eithene. Matthew said," Now I have 8 girlfriends."

On our way home yesterday, we stopped at Birchgrove Baking . This is the bakery where Matthew's Birthday cake was made. Matthew took his picture with Jenn. She is the one who made his cake.

Hopefully Matthew will be able to go to school tomorrow. He only has one day of school this week before Thanksgiving break.

Matthew had a chance while in Boston to visit a Build a Bear store. He was given a gift card from a very special person for his Birthday. Matthew picked out the only food related bear. A bear with candy corns. He spent a few minutes just holding the heart and making his wishes. It was so cute. Thank you Melissa.:)

2010-11-07T21:42:00.003-05:00

Matthew had a wonderful and busy Birthday weekend. His cake from www.icingsmiles.com was just amazing. Jenn from www.birchgrovebaking.com created a woodland fairy cake for Matthew. He was so happy when he saw it for the first time. He looked at every little detail and told us what he wanted to eat first.
He was nervous when family and a few friends started to arrive at our house, but it didn't last long. He was excited for the rest of the day and enjoyed opening all of his presents and getting to eat a small piece of his "special" cake. The cake never left his belly. Matthew said it must like it there. After several hours we ended up venting over 20 ounces of chocolate liquid out of Matthew's belly. It just wasn't moving anywhere. He enjoyed eating the cake so much that it was worth it. He ended up having a belly ache this afternoon and into the evening. His belly was much more distended tonight but not as big as it would get before his surgery. This is the first time since his surgery that we have noticed that much belly distention. I am assuming it's from the cake yesterday. Again, as long as his belly settles down in the next day or two, it was worth it and I am sure Matthew would agree. He loved his birthday and his birthday cake.:)))

This morning we also attended the MDA bowl-a-thon put on by our local postal workers. Matthew started the event by rolling the first ball. He had a good time watching everyone bowl while he colored in his new coloring books from his friend Linda.

The rest of the day was spent resting at home. He is exhausted...

2010-11-02T15:45:00.003-04:00

The MDA lock up event last week was a big success. They had over 70 "Jail birds" who were "arrested" and had to get donations for their bail. Our friend Melissa raised 1300 dollars. Matthew was there to handcuff her and cheer her on.

It ended up being a very cold Halloween. Matthew went to our friend Jacob's costume Birthday party in the afternoon. They are only one week apart in age. He had fun trying to break the pinata.
Since it was so cold out, Matthew didn't go trick or treating. He handed out candy to the neighborhood kids. 23 in all. He counted every one of them.
Matthew's sweet Friend Eithene www.caringbridge.org/visit/eithenerosehilliard dressed as Tinkerbell for Halloween and Matthew was Peter Pan. They are such a cute pair that I couldn't resist putting both of their pictures together. Such sweethearts. :) Eithene really needs some extra prayers. She is still inpatient at CHB and dealing with yet another infection. :((( Matthew's 6th Birthday is less than a week away and it's the first time that he will have a cake that he will be able to try. www.Icingsmiles.com is arranging a special egg free cake to be made for Matthew's birthday. It will be a Tinkerbell/fairy themed cake. I am so happy that an online friend of ours told us about this wonderful organization. Thank you Donna. :)

2010-10-09T22:22:00.003-04:00

Matthew has a four day weekend. He is super happy about it. Today I brought him to his friend's birthday party at the movie theater. It was the perfect party for Matthew. He could sit and watch a movie and then have some snacks. He had a great time. I also had him go outside with his brothers to do a photo shoot for their fall pictures. They came out very cute.

2010-09-23T16:50:00.004-04:00

This was how Matthew looked after two days of being discharged from Boston after his ileostomy. He was so dehydrated despite drinking a ton.

His poor eyes were sunken like I have never seen before

This was the night we brought him to Fletcher Allen Jospital. He looked very bad. :(

After six days in the hospital again, he was looking much better:)

The Mito Action Walk

Team Mighty Matthew!

Matthew and Ava!

Still not feeling well at the walk.

Monday was Matthew's first day of first grade. A few weeks late, but he made it.

2010-09-09T22:45:00.007-04:00

Matthew playing in the closet in his hospital room.

Matthew chilling out watching TV

Matthew the night before his ileostomy.

Just after surgery.
Going for a ride in the garden at CHB

Matthew's lost weight this past week from his surgery. He needs to put the weight back on . He's so thin. It took us so long to get some weight on him. I hope it's not the case this time.

Matthew's sweet friend Eithene. She wasn't feeling well and didn't want to smile. Smile or no smile, she is a beautiful little girl. :)

2010-08-23T11:46:00.003-04:00

Well, the call we were waiting for from Dr. Rodriguez, hasn't happened yet. We waited until Wednesday to call and check since he was just getting back from vacation last Monday. Terry spoke to his secretary and she said she would give him the message. Friday morning, still no call. I emailed Dr. Watkins. He emailed me back Friday evening saying that he had spoken with Dr. Rodriguez about Matthew and we should e-mail his office on Monday to get the ileostomy set up. We still have several questions to ask Dr. Rodriguez about the procedure before we schedule the ilesotomy.

Terry had a phone conference with a Dr. Cherrick from Matthew's insurance on Thursday evening. She was going to do a home visit but decided the phone conference would be a good start to gather a history, etc.. Dr. Cherrick is the medical director of the Compassionet program and is board certified in Hospice and Palliative care. She wanted to talk about what we have gone through and see where we stand right now. The program she oversees deals with chronically ill children so she has lots of experience dealing with families like ours. She talked to Terry for about 45 minutes. The main reason for her call was to discuss starting a new medicine for Matthew. She has had a couple of kids who have had severe GI and food tolerance problems. She went to a conference that talked about using neurontin to help kids with GI problems. Neurontin is a medicine that is mostly used for pain but affects the nerves. She has used it with great success on three of the kids in the program. This certainly isn't a huge group to say with certainty that it will work but it's worth a try and there are few side effects according to her. The hope is that it will help with Matthew. Dr. Cherrick said she would not start the Neurontin without the clearance of Matthew's docs that know him best. If she gets the ok to try it she would manage the start and increasing of the doses. She was very helpful and it doesn't hurt to have another doctor trying to figure things out.

Matthew had a pretty good week. He spent a good share of the week resting and playing with his toys in the living room, but he did get out and do a few things. We went to a local sand sculpture contest on Wednesday. Matthew stayed with his Gramma and Papa for the first few hours and met us at the beach later to help with the finishing touches of our sculpture. We made "Hamm" the pig from Toy Story and won second place in our catergory. :))
We also had a fun day on Thursday. We went to the Great Escape in Lake George compliments of the Starlight Foundation. Matthew had a cairicacture done while we were there. He wanted to be Buzz Lightyear holding a My Little Pony. Only my Matthew. :) They also had a wonderful picnic lunch. We were able to visit with Matthew's friend Colbie and her sister Tiffany. Colbie brought Matthew two very cute pony gifts. Thank you Colbie.:))

2010-08-17T16:36:00.002-04:00

Matthew in the garden at CHB

Matthew visiting Eithene

Matthew and Eithene playing ponies and blowing bubbles. :)

Matthew in our back yard (AUG 2010)

Matthew at our friend's wedding this past weekend.

2010-08-08T20:14:00.004-04:00

So far, the lock on the fridge is working well for Matthew. It stinks that the rest of the family has to lock and unlock the fridge door, but everyone is getting used to it now. Most importantly, Matthew says he is happy that the door is locked. Now he knows he can not be tempted into sneaking food from it.
Matthew did however eat part of a chocolate chip cookie yesterday. The boys and their friend Hali were having a garage sale to raise money for the Mito Action walk. They were also selling cookies. Matthew ended up sneaking part of a cookie and immediately started to cry and get very upset with himself. He kept saying that he tried not to do it but couldn't help it. Terry brought him inside and gave him a bigger dose of Benadryl. I managed to suction most of the cookie out of his tube. Within a few minutes he had hives on his face, but otherwise was ok. I checked the cookie ingredients and it listed eggs as less than 2 % . The garage sale went well. The kids worked hard and made 155 dollars. They each kept 30 dollars and donated 65 dollars towards Matthew's team. We are very proud of all of them.

Today we went to our first annual street party. Matthew had a very good time. The weather was perfect for him. It was cloudy and 68-70 degrees. He had fun playing with two of his neighbor friends, Ryan and Michaela.

Matthew's tree fort is almost done. We just need to find some rock wall rocks that are not so expensive. We have a busy week ahead. Matthew has PT tomorrow, an eye appointment in VT. on Tuesday and we leave for Boston on Wednesday. Matthew has appointments at both CHB and Tufts on Thursday. All three boys will be coming with us this time. We found a hotel with a pool, so Bradley and Steven will have something to do.

2010-07-19T20:29:00.003-04:00

We had a great weekend camping. We stayed at a local campground about 15 minutes from our house.I was able to bring Matthew home a few times to rest, cool off and to take a bath. He enjoyed the beach and even played on the shore. He had a good time sitting in the water and digging in the sand. He tried fishing a few times and caught a small Sunfish. His favorite part of the day was the campfire. He couldn't wait to roast his mini marshmallows over the fire

2010-07-07T10:31:00.001-04:00

Our 4th of July weekend trip to NJ

Matthew's new lollipop tie from Miss Beth.

2010-06-27T17:06:00.004-04:00

Matthew's Busy Week!

Matthew took pictures with several of his lollipops from his collection. They were starting to melt so we had to get rid of some of them. I did let him lick some of his favorites. Mmmmmm

Matthew visited his old preschool class. His friend Lexie will be going to Kindergarten in the fall.

Matthew having fun playing with his new toys.

Matthew's new quilt that he received from a group of wonderful ladies from all across the United States.

Graduation cake for the boys and my niece. Mmmmm

Matthew sitting in his new chair with Harry.

2010-06-08T10:17:00.002-04:00

Eithene smiling at Melanie's baby sister Bella

Melanie's baby sister Bella

Melanie and Matthew finally met eachother.

Matthew always with his big smile

2010-06-07T08:13:00.002-04:00

We made it to Boston early this afternoon. Our Angelflight pilot had to cancel because of the weather. We were able to fly out of Plattsburgh on a local airline that allows Angelflight families to fly for free. The flight took just over an hour, much better than the 5 hours we normally drive. The flight was very rough and Matthew ended up getting sick during the flight. He was a trooper though and made it through the rest of the flight ok. We spent the afternoon walking through Downtown Crossing and Chinatown. It was interesting seeing the signs in Chinese. Poor Matthew was all confused as he is just learning how to read.

Tomorrow will be a busy day. Matthew has an appt tomorrow morning with a GI doctor at Tuft's for a second opinion regarding his status. After that appointment it's back to the hotel to pack up and head over to Children's to get him admitted for his 24 hour video EEG.

We are hoping to meet with some of hour friends while we're at Children's. Matthew won't be able to leave the room once he gets hooked up to the EEG monitor.

2010-05-29T11:33:00.007-04:00

We are back from our mini vacation to the Great Escape Lodge/indoor waterpark. We went there to celebrate Bradley's 14th Birthday. Matthew who usually hates pools, was very excited when we arrived. It wasn't crowded at all and no lines for any of the water slides! This was a big plus for getting Matthew to go in the water. He doesn't like to be spashed and he is always afraid of being knocked over. I brought him to the toddler section and the water was warmer than bath water. Matthew loved it. He did go down the smallest slide a few times but still held onto the side of it. I guess he just never like slides. He was in the water for over an hour. We even got him to go down the big family tube(ONCE). He didn't like it at all but we were very proud of him for trying it.
That evening we had a dinner at Johnny Rockets and about ten of the workers came out and sang Happy Birthday to Bradley. His face was bright red!

We went back to the waterpark on Friday morning, but Matthew didn't want to go in the water. I guess the excitement of the park was over. He was tired and wanted to go. However, he did enjoy getting a "Mito" turtle tattoo. We spent the rest of the day walking down in the village of Lake George while Bradley and Steven went to the Great Escape park. Everyone had a wonderful time.

2010-05-03T16:22:00.002-04:00

This was sent to us from Matthew's PE teacher. She took it while he was taking his nap at school. He looks so sweet.
Matthew was enjoying a coolwhip cone on my Birthday.

Matthew was so exhaused Saturday night after the garage sale and BBQ. He passed out cold in the car and didn't wake up til the next morning.

Matthew selling lollipops

2010-04-06T21:57:00.002-04:00

Easter Morning.

Matthew showing off his SUGAR FREE peeps Crazy Easter grass hair!

My little man!

Matthew's new pillow case from Carrie!

2010-03-20T11:07:00.003-04:00

Matthew outside of Tufts Hospital in Boston. Matthew's good friend Eithene.

Matthew and Eithene. Matthew has his new doll. He named him Pancakes.

Terry And Matthew

Matthew and his Statue friend at CHB

Me and Matthew

2010-03-14T21:42:00.002-04:00

The 2010 Make-A-Wish Gala in Saratoga, NY.

Wish Children

Matthew saw the stars on the ceiling move and he said it was time to make a wish.

Not feeling well by the end of the evening, but still had a wondeful time.

2010-02-24T21:37:00.003-05:00

It's a SNOW DAY here!!! No school for all of us. This morning I convinced Matthew to go out in the deep snow. He actually had fun and stayed out for almost 20 minutes. I was so proud of him. He walked in the snow and helped put a face on a snowman that Steven made. Our snow day did get a bit STRESSFUL after Matthew came back inside. He found and ate a small snack size Snickers candy bar that was in Steven's room. At first he just had a belly ache , so I was trying to vent his belly. Then I noticed that he had some hives starting on his face and he was complaining that he couldn't breath right. I found the ingredients online and the last ingredient listed was "egg whites". I immediately gave him some benadryl. He was still complaining about his breathing and his cheeks were swollen.

I was hesitant about giving him his epi -pen since we have never had to use it before. At that point, Terry had just come home on his lunch break. He looked in Matthew's mouth and said that his tongue and throat looked swollen. By the time Terry was ready to go back to work, Matthew was starting to look a little better. I think that the benadryl was starting to kick in. Matthew spent the rest of the afternoon on the couch. He's taking a nap now and he is feeling better but worn out.
Also , we never did find his "Picky Blue" blankie. I just want to thank everyone who spent time looking for it. I know that every store in the mall has been contacted and they have notices about it hanging up.
We have again been playing phone tag with Matthew's GI office in Vermont. Matthew's button won't come out and it needs to be changed. He screams every time I try to remove it. He will need to have it done in Vermont.

2010-02-17T08:34:00.005-05:00

Matthew received some Happy mail this week for Valentine's Day. Thank you to everyone. Matthew wanted to take a few pictures with his gifts.

This cute bear was from Matthew's friend Linda.

These are two new pages for Matthew's scrapbook that was made by two wonderful girls who follow Matthew's site.

Matthew also received a package full of ponies from his online friend Mackensie. Thank you so much!!! He loves them.

Matthew with Kelly( MDA fundraiser rep) at Gander Mountain .

Matthew signing his name on his MDA Shamrock at our local Lowes store.

2010-02-09T21:26:00.003-05:00

A very busy weekend and even more busy week so far.

Saturday Bradley performed in the all county music concert, Steven had a basketball game and we took a ride up to Saranac Lake to see the ice castle.
Sunday we drove down to Albany to see the Harlem Globetrotters. The boys including Terry loved the show. Matthew laughed so much. His favorite part was where one of the players got his pants pulled down and he was wearing a pink Tutu.

Yesterday, both Bradley and Matthew had appointments for their ears in Vermont. Matthew's ears looked GREAT, but Bradley's right ear had a tear in his ear drum. This happens often when his tubes are out. He has had tubes five times. Looks like we might be going for number six in the near future.

We did get our appointments for both CHB and Tufts Hospital in March. The good news is that we got them all in one trip. We will be in Boston the 16th-19th. Matthew will be seeing Dr. Korson at Tufts and his regular doctors at Children's Hospital.

2009-12-25T21:42:00.001-05:00

Merry Christmas!

2009-12-20T23:30:00.005-05:00

Matthew has had a very busy weekend. He seems to be feeling much better.

On Saturday we had Steven's 11th birthday party at the Bowling Alley. Matthew was very well behaved and everyone had a good time.

Today we drove 2 1/2 hours to Albany for the Starlight Holiday party. It was so much fun. The boys had fun playing the free video games and eating pizza. Matthew enjoyed seeing his friend Colbie and her sister Tiffany. Colbie was able to talk Matthew into getting an airbrush

tattoo on his cheek. He got a Tinkerbell tattoo.
After the party we stopped to the Six Flags Holiday in the Park event. We had free passes from Matthew's make-a-wish trip.
It was freezing cold, but very festive. Matthew was wrapped in a blanket in his stroller. All of the buildings were heated so it was just the walk in between that was cold.
A very Fun Day! We have also received several gifts from some very wonderful people. I would like to thank everyone who has sent cards, gifts , or have signed Matthew's guest book. Matthew's face lights up every time he goes to the post office to get his Happy Mail.

Matthew also goes for his EEG tomorrow morning. We should get the results of it soon afterwards.

2009-12-13T18:50:00.003-05:00

Matthew has had a very busy weekend.

Yesterday I took him to see some of his friends perform in a Holiday Irish Step Recital. He enjoyed seeing his friends dance.

We also spent the evening at our friend's house. Matthew helped build a blanket fort and even had more fun knocking it down.

This morning we went to our friends Allison and Donna's house for an early Christmas. Everyone had a good time eating breakfast, playing games and opening gifts.

He is pretty worn out this evening and has big red bags under his eyes, but he is still in good spirits.

He did have more staring spells this weekend. He has his EEG scheduled on the 21st of this month. It will be done at our local hospital

2009-11-22T17:38:00.003-05:00

We leave for Boston tomorrow. Matthew will have the Botox procedure done at 8AM on Tuesday. We have to arrive at the hospital at 6 AM. Matthew also has an appointment with his metabolic doctor in the afternoon. If everything goes well, we should be home by Tuesday evening. After another meeting with his bosses, Terry was allowed the time off. They will discuss his position when he gets back. Matthew has had a very busy weekend.

Yesterday he received some wonderful packages from his friends. He received a whole bag full of ponies from our friends Mikey and Gabi. He also received a belated birthday present from his friend Linda, and several nice letters and cards from online friends around the United States. A very special thank you to everyone who made him smile yesterday.

Today we sold paper Make-A-Wish angels at the mall. All donations go directly to granting wishes in our local area. Harry came along with us and was very well behaved. Matthew has had one new symptom develop. A few times this week has complained of his legs getting wobbly. He doesn't have his new braces yet, so I am not sure if its from not wearing his old ones. His orthopedic doctor in Boston didn't think his old braces were helping much, so he hasn't been wearing them.

2009-11-07T21:25:00.003-05:00

Matthew had a wonderful time at his Royal Birthday Ball today. He was so happy to see his preschool friends from last year. All of the girls had beautiful dresses on and the boys were handsome princes.

Matthew couldn't wait until it was time to eat his special royal pudding. He ate every last bite and even licked the cup clean. After all of the presents were opened, everyone went to the tumble gym.

Matthew didn't want to stay very long in there and ended up getting hurt on the way out. He was kicked in the chest and belly by his friend who was swinging on a rope. He flipped and fell and his bag of lollipops broke open. It took him a few moments to catch his breath and after resting in the other room for a few minutes, he felt better. Other than that, he had a blast.

2009-11-01T21:04:00.002-05:00

Another busy weekend for us.

Yesterday, we spent most of the day cleaning up around the house. I carved Matthew's pumpkin for him. He didn't want to touch it. We took the boys trick-or-treating last night. they had a good time and got way too much candy and treats.

Today, we went to the bowling alley for an MDA Bowl-a-thon event. It was put on by the Plattsburgh Letter Carriers. Matthew started off the event by rolling the first ball.

He was is a good mood while we were there. He told jokes, walked around visiting everyone, colored pictures, and drew the winning tickets for the raffles. Despite still having new belly issues, he had a wonderful weekend. Hopefully it will continue into this week. His Birthday is this Friday. He is counting down the days until he turns 5.

2009-10-25T20:35:00.002-04:00

We had a wonderful turnout for the MDA Stride-N-Ride. Thank you to everyone who supported the MDA today. Almost 11 thousand dollars was raised. Woo Hoo!Matthew was super excited and had a great time. He did sneak a few pieces of sugared gum and lollipops, so his sugars were running on the high side when we got back home(219). Matthew won two costume contests today. One at the MDA walk for "Best Overall Costume" and for "Cutest Costume" at the Mall trick-or-treating this evening. He was dressed as the "King of Lollipops and Gum".
Check out both blogs for new pictures.

Bradley is feeling much better. He just still has such a nasty cough. He will be going back to school tomorrow.

Matthew's braces situation hasn't been resolved yet. The MDA might be able to help us out with getting him a new pair made by a different company if we can't get his fixed. We are also in the process of getting the medicaid waiver for Matthew. They would also cover new braces, but we are not sure how long it will be before all of the paperwork is completed. We have a medicaid meeting this Wednesday morning, but it might have to be rescheduled again. Terry didn't get the time off approved yet.

2009-10-19T19:40:00.002-04:00

A good weekend for Matthew. He had a great time spending Friday evening with our friends. The highlight of his night was being able to roast and eat a marshmallow. He enjoyed every bite of it.

I came down with the nasty stomach bug on Saturday night. It's going around our classroom and made its way to me. I was in bed all day yesterday. I'm feeling better today but still not great.

The orthotics company sent Matthew's braces back to us today saying they were fixed. They put white straps on them to keep him from hyper extending his knees. They are worse than before. Now he can't even stand up straight. I'm sending them back. They are useless and I am very frustrated with them.

Matthew woke up with a belly ache this morning but seemed to feel better as the day went on. He took a good nap when he got home from school and is watching some TV and drawing some pictures before he goes back to bed. His belly is very distended .We were able to vent some air a few minutes ago but it's already getting distended again.Matthew received a package in his happy mail on Saturday. It was from our Caringbridge friend Makaylah and her family. Makaylah's sister Hannah who is 10 years old wanted to use her birthday money to buy Matthew something from Disney. She bought him Disney Princesses and some really cool goofy lollipops. Thank you so much Hannah. That was super sweet of you. Matthew loves everything.

2009-10-04T21:43:00.010-04:00

Saturday we went to a Make-A-Wish volunteer lunch. Terry spoke about Matthew's wish . Matthew was shy and didn't want to get up in front of everyone, but he was very well behaved. His wish lady Diane presented him with a gift(scooby books,a stuffed lizard, Make-a-wish hot wheel car, and a big purple lollipop) from our local Make-A-Wish chapter.

Bradley and Steven loved the food and helped out by drawing the winning tickets for the door prizes. Matthew ended up spending quite a bit of time talking with the bar tender and waiter. They even brought him into the kitchen to meet the chef.
Later on Saturday afternoon, we drove to the Lake Placid Fire Department. The Plattsburgh Fire Department and the Lake Placid Fire department held a street drive to raise money for the MDA. They invited us to join them for dinner after the drive .

Matthew enjoyed sitting in a very big fire truck and meeting the firemen. They raised over $3000.00 in one afternoon.
On the way back we stopped at the Lake Placid KOA campground. Friends of ours were camping there. Matthew had a great time talking with Ms. Nichole and telling her his new riddles.

He spent today resting at home while the rest of us did some fall cleaning.

Our next big event is the MDA Monster Stride-n-Ride walk. It is being held on October 25th at Champlain Centre Mall in Plattsburgh . We had a wonderful team last year and are hoping that many more can join us this year. Our main team is the "Mito Marchers" and you can walk along with us on team "Mighty Matthew". It should be lots of fun with pumpkin decorating and yummy treats.

2009-09-28T16:10:00.003-04:00

Matthew's week went well. He still is enjoying school. His class invited Grandparents in on Friday for a special grandparent get together. They sang a few songs, and ate some special treats together

Matthew was shy during the performance and didn't sing much, but he was very happy to have his Gramma, Grandpa and Nana there to visit.

We went to our friends Friday night for dinner and Matthew had a blast playing with his friend Ava. He insisted on wearing her pink vest and her old Baby pants(size 0-3 mos) home that night. He is just so cute.
We heard from Boston this morning. They are still working out a time for Matthew to have the Botox injection done. It should be sometime soon. Matthew's new AFO's are ready . We are going down to Saratoga this Thursday afternoon to pick them up.
Medical wise, everything is the same. Nothing more, nothing less. We are just enjoying every good day he has been having.

2009-09-14T22:35:00.002-04:00

Matthew and his new friend Ava at the 2009 Mito walk

Matthew and Eithene having fun with some ribbons and Matthew wearing Eithene's sun glasses.

Matthew and his new friend Colbie at the Mito walk.

2009-09-06T11:59:00.003-04:00

We have been finally enjoying some summer weather. It has been beautiful the past few days. Summer has arrived just in time for Fall.

Matthew went to the beach on Friday with friends of ours. He played in the sand but did not go near the water. He even let a friend of mine bury his legs and make him look like a mermaid.

He wore his cooling vest and it worked great. He didn't complain of being hot and didn't look like he was wilting.

Yesterday we went on a walk at a local state park. Matthew rode in the backpack carrier and had a good time. Matthew's first day of Kindergarten is on Tuesday. He will be picked up in the school mini van. He isn't allowed to ride on the bus since it's against New York State law to put a car seat on a big school bus. He will be the only child in the van and they will bring him directly to and from the school.

Friday morning we have to leave for Boston around 4 AM. We have to be there for our 10 :30 meeting. We will be staying there through Sunday. We are walking in the Mito walk on Sunday. We are very excited to be meeting some of our caringbridge friends at the walk.

Today is another beautiful day,. Matthew has been resting in the living room so far, but I am going to get him up and outside soon.

2009-08-24T21:12:00.002-04:00

Some pictures from our camping trip this past weekend. Everyone had a great time. Check out more pictures on our family blog site.

Matthew with his friend Bella.

Matthew sleeping on the bunk bed in our cabin.

Matthew and Bella

Matthew on our friend Nichole's boat.

Matthew and Nichole

2009-08-17T16:18:00.006-04:00

We had a wonderful weekend. On Friday we went to our local Sand Sculpture contest at the City Beach. My mom brought Matthew about half way through and he was great there. He ate lunch and helped spray our sculpture of Snoopy with water .

He even stepped into the water and enjoyed it. We ended up winning first place in our category. Bradley and my niece Courtney made a" Hippo Head " and won third place and Steven and his friends also won third place for a "race car" sculpture.

On Saturday, we went to a Balloon Festival in Canada. It has the worlds largest inflatable amusement park. Matthew loved going through the different jumping houses and obstacle courses. He didn't like the slide parts.

That evening we watched as over 50 hot air balloons took flight. It was amazing. The boys really enjoyed it.

The only down side of the day was that it was very hot out. (High 80's) Matthew wasn't tolerating the heat well at all until we put his new cooling vest on him. He seemed to do so much better once it was on.

Yesterday we took the boys downtown to see a motorcycle parade. Over 300 motorcycles drove by.

Now for the medical stuff. Matthew went to the doctors this morning for his routine check up. His doctor still wants us to contact the Mayo Clinic to see if he can be seen there to get another opinion on treatment. I did e-mail them this morning and we should hear something back from them within two days. Matthew's sugars have been getting higher. He had two readings of over 400 and his fasting base line reading is around 116-120. He is also still having daily leg issues where his legs go numb. He says that they get "soft" and that he has to hold them up. This has been lasting around 10-15 minutes each time it happens.
We also have a tentative meeting date in Boston on September 11th. We will be meeting with Matthew's doctors and the PACT team. We will also be walking in the Mito Walk on that Sunday.

2009-08-01T23:08:00.002-04:00

On Wednesday morning, we went Blueberry picking .
Friends of ours joined us and everyone had a good time. Matthew loves to pick anything food related. Of course, he ate more than he picked.Later on in the afternoon, Gina (his PT) was able to get him into the pool. It took some time and he wasn't the happiest camper, but he got into his little doggy float and went around the pool a few times with Gina. I was very proud of him.

Matthew also received a special surprise in the mail this week. Online friends of ours sent him some new ponies. He just loves them . Thank you Gabi and Mikey!!!

2009-07-21T19:45:00.003-04:00

Sunday we headed to The Enchanted Forest/Water park in Old Forge NY . Our friends Allison and Donna came along with us. We saw several deer along the road on the way there. Some were not even afraid of the cars.

We forgot to give Steven his "car sickness" meds before we left , so the poor kid threw up. He did manage to get out of the car first this time. Terry pulled the car over in the middle of nowhere and out Steven ran right into a big patch of Poison Ivy. So far, he hasn't broke out in a rash. I don't think he will. The park wasn't crowded at all, but it also wasn't very warm out. It didn't help that I forgot to bring jackets.

Everyone did have a good time and Bradley and Steven loved that there weren't any lines for the water slides. The water was heated but still felt freezing to me. Matthew stepped into the kiddie pool and walked to the other side and then was done. Also, too cold for him. He really enjoyed watching the tiger show . Yesterday, Matthew lounged around and was also pretty cranky. I think he was overtired. He did go outside for a bit and played ponies on our back porch.

Today, it was much more humid out. I took the boys to our local fair for a few hours. They wanted to see if they won any ribbons for their artwork they entered. All three on them won ribbons and some money. It was opening day for the fair today so from 12-1 the rides were free. Bradley and Steven went on a few rides, but Matthew said that he wasn't in a ride mood. He was too hot and wanted to stay in the shade. We only stayed 2 hours, but he looked like he was melting by the time we left. His cooling vest would have come in handy today, but I have to send it back for a smaller size. It's way too big.

Matthew had a wonderful surprise this afternoon. A friend of mine (Michelle) and her daughters brought over a huge My little Pony castle and several ponies. They wanted Matthew to have it since they don't play with it anymore. Matthew was asleep when they got here but woke up just as they were leaving. He was cranky at first (not quite awake) but after a few small snacks, he was ready to play with it. Thank you Michelle, Lacy and Allie.

Finally A Sunny Day!

2009-07-16T16:21:00.008-04:00

Yesterday we finally had a sunny day. I convinced Matthew that it would be fun to try to walk on the boy's slip-n-slide. We turned the water down very low and Matthew walked down the entire slip-n-slide and back and got his legs all wet.

He thought it was pretty fun and even laughed, but he chose to watch the boys slide instead of trying it again. Whoo-hoo Matthew! His PT Gina also got him to step into his little pool and try to squirt us with his new water blaster. He found this quite funny. She also got him to sit down in his pool.

He didn't want to at first but, he did sit down and had fun throwing all of the balls out of the pool. When it was our turn to throw them back in to him, he changed his mind and got out. The first few splashed him and he was done . We are still so proud of him. I'm adding video of this along with new pictures on his blog site.
We are in the process of trying to get a special bike for Matthew. He needs a bike that fits him . We found a company that makes a DCP mini bike.
http://www.freedomconcepts.com/products/discovery/dcp12-mini/#tech-specs. This would be perfect for him. It even comes with a parent handle incase he gets too tired. Right now, he only rides his bike with his therapists and only goes in our garage or down our driveway before he gives up and is done. We will have to turn it in to our insurance to see if we can get it covered.

Matthew is still tolerating the enzymes but with increased thirst and very distended belly. It seems like his belly is even more distended at times if that can even be possible. Venting does seem to help some.

Today it is raining again!!!!. Another storm is getting close as I type. I hope we don't lose power

2009-07-12T20:27:00.006-04:00

Matthew put his feet in our pool on Friday. He usually avoids water and pools. He had fun trying to splash his brother Bradley.

We took the boys and Harry to the FLW fishing derby today. Matthew even tried the little kid's jumping tent. The lady who was working at the tent let him go all by himself. He was too nervous with other kids in it.

Matthew belly has been very distended again. He is also retaining fluid.

Check out Matthew's Caringbridge site for the full update.

http://caringbridge.org/visit/matthewcech

Forth of July weekend

2009-07-05T12:16:00.004-04:00

We spent the weekend in New Hampshire. We took the boys to Story Land and stayed at a hotel that had an indoor waterpark.

Harry(Matthew's dog) joined us too. He was very well behaved. Matthew was able to ride his first Roller Coaster. He still wasn't tall enough(had to be 36 inches) but the let him ride anyway. He said he was never going on it again.

Matthew even stepped into the kiddie pool at the hotel. He made sure to stay near the side and he got out every time someone came close to him.

Yesterday we stopped at some beautiful covered bridges , walked by the river and stayed to watch the lacal 4th of July parade. Matthew liked the parade but didn't like the loud noises from the bands, drums or trucks. He kept his ears covered.

2009-07-01T20:28:00.002-04:00

Cleaning, painting and Strawberry picking. That's what we have been up to this week. I have been busy painting the kitchen and family room and cleaning the house. I did take the kids strawberry picking this afternoon. The boys had a good time. Matthew loves to pick (and eat) strawberries.

Matthew filled his whole container. He was very proud of himself.He went to his pediatrician yesterday for his routine two week check up. Dr. Watkin's e-mailed me with his cell number. He wanted Dr. Meyer to call him to discuss the enzymes. I haven't heard anything back yet... I guess that our "important" team phone conference will not be happening again this week. So far, we have nothing scheduled and with the holiday weekend coming up, I'm pretty sure nothing will be scheduled this week. Terry left yet another phone message with the GI dept. in Boston today. Again, no call back.

Matthew has spent the past few days playing with his new My Little Ponies and just lounging around. He has been going outside in his stroller for his evening walks and he has played well on our back porch. He has had a few crabby moments but he has been in good spirits for the most part. I think that he is enjoying sleeping in and not having to get ready for school.

We are planning on going to New Hampshire on Friday . We have free passes to several area parks that were given to us from Matthew's make-a wish trip. We will be going to a small theme park "Story Land" and staying overnight at a local motel. Terry doesn't have any vacation time left, so we thought that we could go on a few small weekend trips this summer. Some quality family time will do us all some good

Matthew's Preschool Graduation Party!!!

2009-06-29T10:30:00.003-04:00

A wonderful weekend for Matthew. On Saturday we had Matthew's Preschool Graduation party. He was super excited . We had an BBQ for family and friends. Matthew played with his friend Emily on the swings for a bit and he played for a long time in his play house on our back porch.

He was so happy when he opened his presents . He got several new "My Little Ponies "and he even got a Nintendo DS with a DS my little pony game.

I made him a special sugar free cherry pie with cool whip and a Kix cereal crust. He just loved it. Toward the end of the party he did go back inside and wanted to lie down in the living room and take a break. Yesterday, Matthew spent the day playing with his new ponies and resting. He was very mellow and quiet for the entire day. He didn't go outside or move around much. I think that he just needed the extra rest from all of the excitement of his party the day before. Just before bed he touched the light bulb in the living room and burned his pointer finger. He has a pretty good size blister on it , but he says it feels ok. He's so strong.It's a rainy day so far this morning. The boys have been watching TV and I have been cleaning as usual. I have already e-mailed his doctors this morning and Terry is going to be calling them as well on his lunch break. Hopefully one of us will get in touch with someone today!

Matthew's Preschool Graduation!!!!

2009-06-25T19:39:00.003-04:00

Matthew had his preschool graduation today. He was very excited and did a wonderful job talking when it was his turn. He even told a few of his favorite jokes. He was sad this afternoon when he asked if there was one more day of school. I told him that school was over and that most of his friends will be going to different schools in the fall. He cheered up when I told him that we could have some of his Friends over this summer and that he would still be able to play with them. He does want to thank everyone who made his day special.

He also wants to thank Krystal for his new packs of gum, Dani for his new lollipop shirt and princess jewelry, his friend Saige for the cool ball and his Friend Regin for a really cool popeye shirt. He loves everything.

The temperatures here have been in the 80's the past two days. Matthew was very overheated yesterday. His class went to the beach in the morning for one last picnic before vacation. Matthew played a little bit there and stuck his toes in the water but he didn't stay for long. He was getting hot and not having very much fun. By afternoon he was very hot even at home. i had to dunk him into our pool to cool him off. If anyone heard a screaming boy around 3 PM yesterday, it probably was Matthew. He did not like being dipped into the pool. He did feel better after and was much cooler.Still no news from his doctors. No news on the enzyme status or about the team phone conference we were having this week! Last Friday was the last that I heard from his GI doctor in Boston. He said that he would call us on Monday, get the conference set up, and start the enzymes. We have e-mailed him everyday this week and nothing back yet. I'm sure he will call or e-mail us again this Friday evening(when nothing can be done until the following week) to tell us that he's working on a "NEW PLAN". It's very frustrating when a few months ago his doctors were telling us that Matthew can not stay in this "starvation" mode forever and that something needed to be done if he is to survive in the future. That being said, here we are almost two months after being discharged from Boston without a plan.

2009-06-21T21:27:00.002-04:00

Matthew had a wonderful weekend. On Friday we had a picnic with preschool at a local town park. Matthew played some on the playground and loved his picnic lunch. His belly was very distended by the time we got back home.

He didn't seem to mind that it was that big.We received an e-mail from Dr. Watkins saying that he was going to call us and Dr. Meyer to get the enzymes started. Hopefully, we can start them this week. The team phone conference should also happen sometime this week. We have several things to discuss and a new plan to come up with.

Matthew and Steven helped make breakfast for Terry this morning for Father's Day. They had fun wearing chef hats and giving Terry his gifts.

Bradley was at a friend's house for the night. He didn't get home until afternoon. We went for a walk to the mall this afternoon, ate dinner and walked back home. Matthew has his preschool graduation on Thursday morning. He is very excited to be graduating but he also wants to stay in preschool.

2009-06-17T22:59:00.004-04:00

Matthew's PICC line is out. We brought him to the hospital this evening and it was taken out by one of the IV nurses. He was very brave and sat on my lap and even said it tickled. No news yet about when the team phone conference will be. Matthew also went to his pediatrician's office today for his routine two week check up. She hasn't heard from his doctors in Boston in quite some time and said that she will also be available anytime for the conference. She still thinks that Matthew needs insulin.

We had yet another one of Matthew's favorite activities at preschool today. The class tried out a brand new sprinkler. Matthew went through the sprinkler one time(with the help of his aide and our OT therapist). As you can tell by the attached picture, he didn't like it, but he didn't cry.

He had a much better time sitting with his friend Saige on a towel and watching his friends get wet.

Beach Day!

2009-06-17T07:28:00.003-04:00

Matthew had another field trip today with his preschool friends. We walked to the beach for a picnic. The city beach is just down the road from our school. Matthew had a good time riding in his stroller, but did not enjoy being at the beach. The entire class with the exception of Matthew went in the water and played in the sand. Matthew wanted to be carried and did not want to be put down on the sand. He did sit for a few minutes, but only with a towel wrapped around him.

It was very windy and his eyes watered the entire time. I thought that by seeing his friends playing and having fun, he would want to join in. Well, that wasn't the case. He watched them play but had no interest in joining them.His blood sugars were on the high side again today. (196 and 189). We still don't have an answer as to why they run high. He will also be getting his PICC line out tomorrow evening at our local hospital. His line will stay out until his doctors come up with a new plan.He did have a good PT session this afternoon and had fun riding in his stroller this evening on our walk.

A good weekend.

2009-06-14T22:08:00.007-04:00

Matthew 's fever is gone. He ending up coming down with a cold this weekend. It seems to be just in his nose and eyes. He has a green runny nose but he hasn't been coughing. We had wonderful weather the past two days.

Matthew had yet another Birthday party yesterday. It was a for his friend Ava. She turned six and had an American Doll/ baby doll party. Everyone brought their favorite doll to the party. Matthew brought "Little Matthew"(his cabbage patch doll that has a Matching mic-key button and PICC line). He had a good time but didn't want to be outside when the girls were on the slip-n-slide. he went up to Ava's room with another one of his friends and dressed up in "girl" dress-up clothes. He came back downstairs wearing a very pretty dress, hat and wearing handcuffs!

All of the girls thought he was so cute and he decided to keep the dress on while he ate. To top it all off, Ava's mom (who is Matthew's preschool teacher) gave Matthew a big bag of very "GIRLY" dress-up clothes that he could keep. He has had so much fun trying them all on the past two days.

Of course he isn't allowed to wear them outside of the house. We told him that they are only for play and that he has to wear his "boy " clothes when we go anywhere. I'm sure that there are many parents out there that would think it's wrong to let a boy play with "girl " toys, but he's just a kid having fun. I'll post some pictures of him all dressed up on his blog site.Today, Matthew played inside for most of the day but had a big burst of energy this evening. One of his little friends from down the road stopped over and the two of them went in our bouncy house. Matthew also ran the farthest we have ever seen him go on our walk tonight. He wanted to race his friend while she rode her bicycle. He did get tired after a few minutes and finished the walk in his stroller. We were very proud of him. We did check his heart rate when he got into the stroller since he was out of breath. We noticed that his heart rate was actually slower than usual. After all of that running it was only 96 . We took it again a few minutes later after he had been sitting in his stroller and it was back up to his normal 120 range. Terry did talk to Dr. Watkins(GI in Boston) and he did confirm that Matthew's PICC line should be removed. They havn't been able to figure out how to give Matthew the PN without the side effects or why it's happening. Matthew will be started on Pancreatic enzymes and he is to stay on his motility medicine. We still will be having the team phone conference, but not for another week. Matthew's metabolic doctor is out of town until the 19th. We will be discussing what to do next and also getting the Botox injections scheduled. We should also hear back from Matthew's Peditrician about where he needs to go to get the line removed. We might have to go to Vermont.

2009-06-08T22:07:00.006-04:00

It was a very busy weekend.Matthew had a high blood sugar reading on Friday afternoon. I took it twice and it was in the 260's. I took him for blood work and it took our local hospital an hour to get an IV nurse to get down to the lab to draw the blood. By the time we got back home it had been 1 1/2 hours sinced I had last checked his sugar. I checked it again just to see if it had gone down and it was down to 69. To me, that seems like a big drop in a short amount of time. We also missed Dr. Watkin's call while we were at the lab... Terry called him back and he didn't answerOn Saturday, we had our annual garage sale and made over 300 dollars!! Matthew also went to another birthday party for one of his preschool friends. He had a wonderful time and the weather was nice. He went in the bouncy tent when it was empty and when he noticed only a few other kids were in it. Most of his friends went swimming, but he didn't mind. He doesn't like to get wet. He had just as much fun squirting his friends with a water blaster from outside of the pool

I took him tomTarget after the party to get some new My little ponies. His friend Pam sent him some money and he wanted to use it to buy ponies! Thank you Pam.

Matthew had a good day at preschool today. He only has a few more weeks left before he graduates. He keeps saying that he doesn't want to leave preschool. The boys have dentist's appointments this week in Albany and Matthew has an appointment to have his AFO's checked in Albany as well.

2009-05-12T20:56:00.003-04:00

Matthew went on a class field trip to a local farm. he was very excited and had a good time. His favorite part was feeding the goats and pigs stale bread. He thought it was funny that there was a big wheel barrell of old bakery bread. Enjoy the pictures.

Matthew and his friend Tyler.

Matthew and his friends Ella and Jillian.

Matthew (4 1/2)

Matthew feeding the pigs.

Matthew in the field.

2009-03-23T21:18:00.004-04:00

Matthew's "Wish Ladies" came over tonight and presented Matthew with his Wish Adventure Booklet and "The World's Biggest Lollipop". He was very excited when they were here and had a ton of energy. He showed them how he could hop and jump and he was quite silly at times. Thank you for everything Diane and Jessica. You guys are great.

Matthew wanted to take his giant lollipop to bed with him.

Matthew with his new shirt.

Matthew's Wish Ladies (Jessica and Diane)

Matthew with one of his new crowns.

2009-03-19T15:39:00.002-04:00

Matthew's new Prince Robe that he will be wearing with his Tux when he eats with the Princesses at Disney. He loves it.

2009-03-15T11:16:00.000-04:00

Matthew in part of his "Prince Outfit" for his Disney MAW trip.

2009-03-14T21:45:00.002-04:00

We had a small Make A Wish party for Matthew tonight. We had our family over for pizza and cake. Matthew had a good time . Only 16 more days until Disney...........

2009-03-05T21:11:00.004-05:00

Matthew's "Wish Ladies" brought him over this adorable lollipop countdown calendar. He gets to eat a lollipop everyday as he counts down the days until his MAW Disney trip. Thank you to Matthew's "wish ladies" Diane and Jessica.

2009-02-19T11:56:00.003-05:00

I was playing around with my camera today and took a bunch of new pictures of Matthew. He loves to have his picture taken and poses so well all on his own. These are just a few of them. He seems to be feeling much better so far today.

2009-02-17T21:15:00.000-05:00

Matthew's new button.

2009-02-13T22:25:00.002-05:00

We had a class bake sale today at preschool. Matthew was super excited to be able to help sell the baked goods. All of the money raised was given to our family. We are very grateful for everything that was done today.

2009-02-11T19:14:00.002-05:00

Matthew went on a field trip with his class to Auntie Anne's Pretzels yesterday. He had a great time making his own pretzels and meeting Mr. Twisty. He made his own"special " pretzel that he could eat.

2009-01-28T12:34:00.002-05:00

Matthew with his new cousin Riley. He was born on January 27th and weighed 9 lbs 12 oz.

Riley James

2009-01-18T09:14:00.006-05:00

Matthew had fun playing at Steven's basketball game yesterday. He played with two of his friends Nate and Ben. They were wonderful with him , making sure that they didn't knock him over. They even let him win a race. Enjoy the two videos. This is the most active Matthew has been in quite some time.

2009-01-11T12:41:00.005-05:00

Just a few pictures of Matthew with some of his giant lollipops. He loves to pose for the camera.

2009-01-03T11:43:00.003-05:00

Today, Matthew received a box filled with gifts. It was from a High school class in Floresville, Texas. He was very excited to open it. Thank you Floresville High School.

2008-12-26T10:18:00.002-05:00

Merry Christmas!!! Matthew had a wonderful Christmas. He enjoyed opening presents and playing with his new kitchen set!

Matthew in his chef outfit playing with his new kitchen set!

Matthew on Christmas morning with his new kitchen set!

Matthew was exhausted after a long Christmas day. He fell asleep in the car on the way home.

2008-12-19T21:56:00.003-05:00

This video is of Matthew singing a part of "What A Wonderful World".

2008-12-19T21:44:00.002-05:00

Matthew received some special Christmas gifts from his friends at our local post office today. Thank You Linda, Gene and Pat. He loves everything! He even likes to get into the gift bag.

2008-12-14T13:19:00.001-05:00

This is Matthew's new puppy Harry. He will be flying from California next week. Matthew is very excited.

2008-12-06T09:25:00.003-05:00

We are back from yet another trip to Boston. We had a little bit of time in between several doctors appointments and tests to see Matthew's friend Eithene, meet a new friend Nicole, and do some night time site seeing. We stayed at the Family Inn while we were there. You can go to Matthew's caringbridge site for details of our visit. www.caringbridge.org/visit/matthewcech

Matthew(4) with his friend Eithene(2). It was a long day for the both of them and Eithene wasn't in the mood for a picture. She was being admitted to the hospital while we were there. Matthew was very happy to see her. He talks about her all the time.

Matthew having his EKG done. He was very distended and retaining fluid in this picture.

Matthew in a Lobster pot in downtown Boston.

Matthew with some Lollipops from the Rainforest Cafe.

Matthew with his new friend Nicole. Nicole does a different charity each year. This year she decided to collect gifts for some children on the Make a Child Smile web site. Matthew is on that site. It was so nice that we were able to meet. She brought Matthew a wonderful bag of gifts. Matthew loved playing with her and we hope to stay in touch.

Matthew with his statue friend at the hospital.

Matthew all tired out after a very long day at the hospital.

2008-11-23T13:55:00.001-05:00

I took some Santa pictures of Matthew. He was being silly in some of them . Enjoy!!

2008-11-17T20:45:00.003-05:00

Our class went on a field trip to the grocery store today. Everyone had a good time. We even had a chance to touch a live lobster. A group picture is below. Matthew is the one in the back in the shopping cart.

2008-11-08T22:01:00.003-05:00

We had Matthew's 4th Birthday party today with friends and family. He was in a very crabby mood this morning but was super for the entire afternoon. He enjoyed his cake and ice cream and loved opening his presents. He did get what he asked for for his birthday: cereal, jelly beans, lollipops, slippers and pajamas. He also got a lot of other nice gifts that he also loved. By the time the party was over, his belly was quite distended. We hooked him up to his Farrell bag and it seemed to help.

Matthew with his cake!

Matthew with his presents and his pink kitty card from his cousin Amanda.

Matthew trying to break the pinata in the garage.

Matthew's tummy a few hours after eating his birthday cake.

2008-11-06T22:11:00.004-05:00

Matthew had a wonderful 4th Birthday . He wanted to wear a tie to preschool today. He brought pudding to share with his class. Matthew also had a special pumpkin cookie party with Gina this afternoon. So many friends had gifts for Matthew. We can't thank you enough for making his day special. A very good friend of his bought him princess pj's. Yes, PRINCESS PAJAMAS. He loves them. He also won a birthday cake from a local radio station and he picked out a pink one. The pictures that I took tonight are going to be priceless some day when he's older. We will also be having a small family party for him on Saturday. Enjoy the pictures.

2008-11-04T21:54:00.002-05:00

Matthew received an unexpected early Birthday surprise today. His "Wish Ladies" sent him a giant lollipop bouquet with a huge balloon. Matthew was so happy when he saw it. He had just finished up with his PT session and was about to take a nap when it arrived. A big thank you goes out to our special "wish ladies" Diane and Jessica. Thank you. You made his day!

2008-11-02T10:33:00.002-05:00

Matthew had fun at preschool on Friday. Both of us were dressed as lions. He fell asleep when we got home and took a long nap before we went trick or treating.

2008-11-01T20:49:00.004-04:00

Matthew has been liking the whole "princess" thing lately. It's pretty cute. He dresses up like princesses at preschool during free play time. He has also been watching Cinderella over and over . I took this picture of him the other day at school. I'm sure he'll love it when he is a teenager! Ha! Ha!

2008-10-27T21:50:00.001-04:00

Matthew's Wish:

To go to Disney and get the Biggest Lollipop in the world!!!!!!!

2008-10-26T21:09:00.002-04:00

Matthew was exhausted after Trick-or Treating at the mall tonight. He rode in his stroller and made sure to say thank you for every piece of candy that people gave him. While waiting for the judges to decide on costume winners, he wanted to get out of his stroller. He didn't go far. He plopped himself down on the dirty mall floor and wanted to go to sleep.

2008-10-25T21:31:00.005-04:00

Matthew won a costume contest at our local Borders store today. He was dressed up as a Ninja Turtle. He won a cute book about manners. He was just happy to be eating a lollipop.

Matthew waiting to be judged .

Matthew with his prize.

2008-10-19T21:28:00.003-04:00

Just a few pictures of Matthew in his turtle costume for Halloween. He wanted to be a turtle because he likes the story "The Tortoise and the Hare". Matthew says ,"slow and steady wins the race".

2008-10-12T11:05:00.004-04:00

Yesterday we went over to South Hero Vermont for their annual applefest. Matthew had a good time although his belly was still bothering him. The weather and the trees were beautiful.

Matthew and me at the applefest.
Matthew on a tractor at the applefest.
Matthew having a snack under a big maple tree.
Matthew on Terry's shoulders.

2008-10-06T21:52:00.002-04:00

Matthew on a few rides at Six Flags Great Escape. We went there on Sunday for Fright Fest. Matthew had a good time.

2008-10-02T16:56:00.003-04:00

Matthew went on his first class trip today to the Pumpkin Patch/ Apple Orchard. He was very excited to go even though he wasn't feeling very well. It was a little colder than he had expected and I carried him the whole time. We only stood him on the ground to take a few pictures. He kept asking when was it going to be over. Poor kid. He said that he didn't like the wagon ride or seeing the animals. He did really enjoy the last part of the trip.(snack time) I gave him an apple since he couldn't eat the donuts but the apple upset his tummy. He did also get to lick a bit of rock candy.

2008-09-20T20:12:00.002-04:00

Matthew had a great time at his benefit dinner last night. He looked like such a little man. By the end of the evening he was collecting items in his hat to take home. At one point he had a salt and pepper shaker, some dental floss, the bowl full of sugar packets, and some money. We told him that he had to put everything back except the money and a few sugar packets. He was happy with that.

The weekend

2008-09-14T20:35:00.002-04:00

Matthew has been fighing off a cold this weekend but has rested well and was a good mood. It's a welcome change from last week. He was in the worst of moods last week. He loves to go to school but he gets exhausted and very crabby when he gets home. We need to find a way that he can rest more while at school and in the afternoons.
I brought him outside this evening to take a few pictures. We didn't stay out long since the bugs were attacking us! Here are a few pictures from tonight.