Matthew's Journey: November 2013

The last few months since camp have gone by very quickly. Ryan took Matthew to Remicade in August. I was away on a Scrapbook weekend with the girls. Ryan said when they got there to do the IV start a different guy walked in. When Matthew saw him he looked at Ryan and said "too bad we didn't get the good one" and Ryan explained that we always get the same guy and he does an awesome job with Matthew. Then around the corner came Arik. He had been hanging out in their office with the other tech when that tech got the page. Not knowing who it was for he followed. So the other tech let Arik start the IV. Other than that nothing exciting happened which is great!

Braden, Matt and Zack started school on Sept. 6th. So far the school year has gone pretty good for all of them. Matthew hasn't had any major health or bathroom issues yet other than on bout of Strep Throat. The Nurse Practitioner at the Express care said she didn't think it was strep because he didn't have the white/yellow spots. But it came back positive and he got put on meds right away and it took care of it very quickly.

We met with Dr. Tung on Sept 17th. She told Matthew that he was a celebrity because they used his picture on a fundraiser flyer that was sent out to a bunch of Doctors! We also talked to a study coordinator. She asked to put Matt in a study that the company that makes Remicade is running. It consists of meeting with them every 6 months(at his normal GI appointments with Dr. Tung) and an extra teaspoon of blood at his remicade appointments. And the most important part is that its a paid study! $40 every 6 months! While Dr. Tung was asking questions to Matthew about how he has been feeling, she thinks that maybe the remicade is not working as good as she hoped. He has tummy aches still sometimes and his poop is not always hard. So we had to do another poop test as matt likes to call them! We will get the results of those soon hopefully.

We had one more Remicade since then. We didn't get Arik but Matthew was a Rock star. I was working again so I brought him to Ryan and we both were there for the first 45 minutes or so until I had to head down stairs. Its nice that it is in the same building that I work in so I can sneak up and see him if I have to work. Ryan said everything went good again.

Way back in March when we went to the education summit we won tickets to an event. We were not sure what they were to but it didn't matter. So a few weeks ago we received an invitation in the mail to The Evening of Hope, Annual Crohn's and Colitis Gala at the Radisson Blu in Bloomington. We were not sure what it was going to be like. Then a few days later we got an email from the director of the CCFA, Jill. Jill asked if we were coming and if so would we please bring Matthew. We also got a itinerary for the day. On that it said Black tie optional-semi formal. Well that meant I had to go shopping!

Day of the event I took the other two in to Rochester to meet Jamison and Whitney. They took the boys to pick apples and then out to my moms to spend the night. Ryan, Matthew and I got ready and headed to the Mall of America and then the Radisson. Here are a few pictures of us.

The event consisted of a silent auction, dessert auction, wine pull with a chance to win a plane ticket from delta and a chance to win diamond earrings, H'ourderves, cocktails, dinner, a few speeches and stories and great conversations. Dr. Tung, her husband Andrew and her appointment coordinator Jennifer were there. Ruby from Camp, Tovah from the Take Steps walk, Jill of course and a bunch of other great people from camp, campers and counselors, and a whole lot of other GI doctors, donors and families who have been touched by Crohn's or Colitis. We got to meet Aria Love and her family! Aria attended camp with Matthew and she was also on the top of the donation letter that was sent out to the doctors! We spent a lot of time out front with the Love family. Her parents Antonio and Jill are really great people. The also brought their other 2 children also. Matthew and the girls ran around and played for a while before dinner.

During dinner we sat with Jill Edsen, Tovah and a few others from the CCFA right up front in the middle! While we were chatting Tovah asked Matthew if he would be the Honored Hero at the 2014 Take Step walk in Rochester! She told us that we will need to fill out a form and send it back and she will put his story on the website and that there will be news stories possible on TV but in the news paper for sure! We will also get up and say a few words at the walk and then Matthew's team will lead the walk!

Aria and her family were at the next table and Dr. Tung and her guests were at the table on the other side of us. Dr. Tung won a dessert in the auction as Jennifer shared her piece of cake with Matthew.

After Dessert the speeches started. They gave away a few "of the year awards" and then they showed a news clip of Aria and her Family. Here is the ling to the news clip. http://www.youtube.com/watch?v=mcOl9gxTT0o After they showed it the reporter got up and told her story and then Jill Love and Aria got up to tell her story! As Jill told Aria's story he bawled and so did I. To hear the story of another Mother going through kind of the same thing is very emotional. One thing that Jill said was that one day as she was talking to her mother saying what we have all said, why me, why us, and her mother said why not you, what makes you better than anyone else. That really made me think about us. Why would it not happen to us, I mean look at my family with all the people in my immediate family what has happened? The Twins were born early and are now doing amazing, but other than that we have had barely anything medically wrong with us. I work at the Mayo Clinic, I have Great medical insurance and some of the best doctors in the world around me everyday, we are lucky to be where we are. God won't give us more than we can handle, we can handle this. What doesn't kill us makes us stronger! Matthew is one Strong little boy!

Matthew and Aria on stage with Jill!

Jill Edsen got back up on stage after that. She called Aria and Matthew up on stage to pull the name for the earring drawing. She talked a little about them at camp and showed the picture of them dancing, the picture on top of all the donation forms that were sent to the doctors! Matthew pulled the name and gave the winner her plane ticket and Aria gave her the earrings!

Aria's little brother won an overnight stay at the hotel!

We all mingled for a little bit and swapped info with the Love family. Hopefully we will get a chance to know them better! We said our good byes and headed home! It was an amazing evening and I am really glad we got to attend! It was a big day and Matthew was very sleepy!

Matthew's Megalodon's team is already registered and raising money for the 2014 walk. You can go to this link and sign up or donate! We have 22 walkers so far and the number keeps climbing! We want to have the most walkers this year!!!

http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-MinnesotaDakotas/2087423030?pg=team&fr_id=4391&team_id=147780

Wow! I just realized how long it has been since I updated Matthew's Blog! Well we sent Matthew off to Camp Oasis! It was pretty sad but we knew it would be good for him!

Everything he needed for the week besides the sleeping bag!

When we got to Camp Oasis, we were greeted by a bunch of the counselors. We put his stuff to the side and headed in to the main lodge to get him checked in. We got to the table to sign paper work where 2 people were there helping all of the families. We took up both of those ladies! There was one helping me fill out all the forms and the other one was Ruby, who Matthew and us had met a few times before! Matthew and Ruby talked and talked and held up the line. Who would have guessed Matthew to talk someones ear off?! Just kidding we all know how much he talks! He got his name badge and then we headed in to the big mess hall to get the medical "OK" and turn in meds. We ended up getting sent to Matthew's Doctor, Dr. Tung to get our Medical "OK". She had to take his temp and check for lice and etc. It made us and Matthew a little more relaxed and calm about him staying. After we got that all done we headed over to me Tyrel, one of Matthew's Counselors. Tyrel took us and another family outside to grab all of the campers things. We then Headed over to the Blue Cabin. We unpacked all of Matthew's things, made his bed and met Jake, his other counselor. After we got him settled we headed out side to meet his other Cabin mates. They were all kind of shy and we got nervous that leaving was not going to be easy. Then Miracle came over and introduced himself and then we were OK. They were all in line to play "GaGa Ball" A game they play with a ball while they are all in a pen. Looked like fun and they were having a blast! We said our Good Byes and told Matthew we were leaving. His response was "OK see ya later"

Our trip home was long. We had a 3.5 hour drive one way to camp and then back again and we did it in one afternoon. The next week was hard on the rest of us. We knew he was having fun but it was hard to not miss him. Ruby did an awesome job making sure we knew he was having a good time. Here are two pictures she sent us!

Matthew and Aria at the dance!

Matthew's first night he got a new blanket!

Friday night we decided to head up closer to Willow River so the drive wouldn't be so long in the morning. Braden and Matthew got to have a fun night too! The next day when we got there to get him, he was very excited to see us! All of their stuff was piled up so we just had to go check him out and pick up his meds, check lost and found and we were on our way! He had such a great time. He didn't talk as much on the way home as I thought he was going to but he did eventually open up! He had such a great time that he has not stopped talking about going back! Here are a few more of My pictures and a few from them link they sent us!