First year as a Crohn's Patient...

One year ago today Matthew was diagnosed with Crohn's.  It has been a very busy and crazy year.  We could not have done it with out the support of all our family, friends, doctors and their staff, and the CCFA.

Last year on Dec. 26th we were shopping with the boys letting them spend their Christmas money. My phone rang with the generic Mayo Clinic number.  On the other end was Dr. Tung.  She slowly told me the findings of Matthew's test. Crohn's disease and lactose intolerance. She was very informative but spoke in terms a Mother scared out of her mind could understand.  She gave us some other places to seek information and support. I love the way she can talk to me like a friend and not a Doctor to explain and help me and our family.

Later that evening Matthew started to have his official flare.  He had really bad stomach cramps and a high fever.  We got him comfortable and he went to bed.  The next day it started over so we took him in to St. Mary's Emergency Room.  After a check out and some tests they admitted him to the pediatric floor. He received IV Fluids and IV Potassium over night.  The next morning we saw Dr. Tung right away. (she heard his name in the morning meeting and came straight to his room, just one more reason that shows she really cares about her patients) After a few more tests we found out his intestines were worse then they thought.  After a few days in the hospital to get his flare under control we were sent home.

Since then...

 Matthew started Remicade and has been on that since. Every 8 weeks once we got the first step up doses done. 

He was on Prednisone for a short time until his flare was under control.

We attended the Education Summit to learn a lot of information about Crohn's and Ulcerative Colitis.

We also met a lot of people that have made a huge impact on our lives at that summit.

Matthew's Monsters participated in our first Take Steps Be Heard Walk for Crohn's and Colitis!!!
     -We were 3rd overall for Fundraising
     -We were 1st for fundraising for a Camp Kid!!!
     -We were 3rd for team participants!
  I would say that was pretty awesome for our first year and only diagnosed for about 5 months!!

Matthew enjoyed swimming lessons, cub scouts and baseball over the summer!

Matthew got stitches from an accident on the playground which needed a tetanus shot which then caused him to get cellulitis at the injection site! He had to take 2 different antibiotics, one to get rid of the cellulitis and the other to make sure he didn't get an infection in his head wound!

Matthew attended his first Camp Oasis!!!  He had a BLAST and can't wait to go back!!!

Matthew met his good friend Aria!  She is his age and has(had) Ulcerative Colitis.

Matthew started the 2nd grade!

Matthew joined a Crohn's study through his Remicade! He gets paid for it! He loves that!

Ryan, Matthew and I attended the Evening of hope Gala! We got to meet Aria and her Family!

Matthew was asked to be the Honored Hero at this years walk!!!!


So it has been a very busy year and that is only Matthew!  Here is to hoping  is an easier year with this disease!

What a week

Well this week, Dec. 1st - 7th, is Crohn's and Colitis Awareness week.  So to make it even better Matthew started a small flare.  His Remicade was due last week but they were so busy we couldn't get it until yesterday.  On Saturday he wasn't feeling the greatest.  He started having diarrhea and lots of stomach pains.  It continued through Monday with some fatigue also. Ryan had to pick him up from school because he was in the nurses office sleeping. He was feeling so bad he didn't even want to go to cub scouts. Tuesday he did pretty good.  Made it through the day and had minimal pains.  I felt horrible.  I felt like the worse mom ever.  I should have been more on top of it so I could have gotten him in on time. 

 

Yesterday we headed to St. Mary's for his infusion.  We got there a little early because I was worried the roads would be bad.  They got us in a 1/2 hour early only to find out that Dr. Tung had only wrote the order for 6 months.  The plan had not changed so I assumed she had wrote a new order and she thought she wrote it for 1 year.  Oops.  Luckily she was as St. Mary's, bad part was that she was scrubbed in to surgery.  The sent her a STAT order for her to sign and send back.  That stat order took about 1 1/2 hours.  So we slowly got the IV team and Labs done, then got the acetaminophen and diphenhydramine and then finally at 3:30 we got the Remicade. (our appointment was at 2 and we got there at 1:30)  Matthew was a champ like usual.  It was a very long afternoon, we didn't get out until 6:00pm.  But it was well worth it.  Matthew is feeling better.

 

On Tuesday Dec. 10th I am heading to Lake Elmo Mn to attend a Parents seminar with the CCFA. After the defeating week I had, I felt like it would be a good thing to attend.  Dr. Tung just happens to be the presenter as well.  I am hoping to meet a few new parents that are going through the same things we are.

Last few months!

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

Camp Oasis!

 

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!


Zack and Braden waiting at the park in

Willow River to go get Matthew!

Running to Mom!



Hugging Dad!

Matthew and Jake!

 

 

 

 

Matthew loved the Rock Wall!

Aria

 

                           At the Top!

 

                                                            

GAGA BALL

 

                                             Jake and Tyrel



Getting ready to send Matthew off to Camp Oasis!

We are frantically getting Matt ready to head off to Camp Oasis tomorrow.  Camp Oasis if a camp for kids with IBD, either Crohn's or Ulcerative Colitis. It is located at Camp Heartland(One Heartland Center) in Willow River Minnesota.  It is located just of I35 about 50 miles south of Duluth.  All of the volunteers that work at camp also have IBD.  One of the 2 medical directors this year is Dr. Tung.  She was a big part of him going to camp this year.  The other one is Diane Kocovsky, APRN (advanced practice registered nurse, I had to look that one up) from Boys Town National Research Hospital in Omaha, NE. We will meet with members from the medical team when we drop him off tomorrow.  He has also met 3 of the other ladies that will be up there and one of the kids!

He is very excited to be going to camp with all kids just like him.  They have very full busy days planed with rest time, medication times, and lots of other fun activities.  Luckily since Matthew is on Remicade he only has to do his daily Vitamin while there.  They have theme days and he is excited about Favorite sports team day, he is wearing his MN Twins gear! 

I think I am more nervous about it then he is.  We don't pick Matthew up until Saturday!  He will be there for 6 long days!!!!  I will make it! :)  I am excited for the experience he will get.  They have warned us a little about what he will ask and how he will act when he gets home. 


If anyone wants to send him a letter while he is there the address is


One Heartland Center
c/o Matthew Schaefer
26001 Heinz Road
Willow River, Mn 55795

You may want to send it by Tuesday or Wednesday  at the latest to make sure it gets to him!

Only Matthew...

On Thursday, June 30th I called Ryan to tell him I where I would meet him after work and he says "Well I got a call from Cool School, Matthew had an accident. Megan says she doesn't think he needs stitches but she is not sure."  Matthew and the other boys were on a field trip in the cities all day.  They went to a place called Sky Zone to play on the trampolines and then to a park to eat lunch and play.  While at the park Matthew was walking under the Monkey Bars while another kid, Sam, was crossing them.  Sam slipped and fell right on top of Matthew.  Sam's teeth went into the top of Matthew's head.  Matthew and Sam both took it very well.  I think it upset Will, one of the college kids that works at Cool School, more than anyone.  Will was the one they went to covered in blood so he had to fill out the accident report for us.  Right after it happened Megan on of the ladies at Cool School got a hold of Ryan and told him what happened.  Ryan got to talk to Matthew and he seemed just fine.  So Ryan told them we would just meet them back at the school when they got back and we got done. 

We got there to pick him up and he was sitting with Will on the steps.  He had a big bandage on the top of his head.  We checked it out and said well we might have to at least go get it cleaned out. We got the other boys home and took another look at it. To us it looked like it was kind of healing, it had a whitish line where the cut was. Ryan put a finger on either side of it and could slide it back and forth so I packed him up and took him in. 

We got to the ETU, Emergency Trauma Unit, in about 30 minutes.  They took us right back to a room.  The resident, child life specialist and a medical student basically followed us in to the room.  The resident Dr. Comboy looked and messed with it a little bit. She was talking to Matthew about why it was a good thing he came in.  She asked him what he thought was dirtier a dogs mouth, a cats mouth or a humans mouth.  Matthew said "A humans, cuz their mouths are the grossest.   They all left and The Child Live Specialist, Sarah came back in with some art projects for Matthew to do.  He sat there and painted while they put Lidocaine on the cut.  He said it kind of stung a little. After they let it get good and numb they came back with the consultant.  It was time to clean it out.  They used 2 bottles of saline and washed it out pretty good.  This didn't phase Matt at all.  After they got it good and clean I knew for sure that we were getting stitches.  It was really deep and the "white" we saw was not it healing at all.  It was the fatty under part of his scalp.  The bottom side of it was swelling and making it roll over. Sarah left and came back with some thread that they do stitches with and a few other tools to show Matthew.  She let him feel the thread and ask questions.  So Dr. Comboy came back and started to stitch,  The needle and the thread was just about the same color at Matthew's hair.  The whole time he said Ouch twice and that was when she grabbed his hair instead of the thread and needle.  It took 4 stitches to close him up.  Then came the bad news. Because technically it is a human bite, he had to get Augmentin to prevent infection.  And Also a Tetanus Shot because of the bite and he was just over due for one.  So they got the shot already and got his leg cleaned and that is when he lost it.  Sarah had to come back in and Ice his leg to get that numb so we could do the shot.  She iced it for a few minute and then we sang America the beautiful at Matthew's request.  The nurse went to wipe his leg again and he lost it again.  So she just gave him the shot with out cleaning the leg.  He hardly screamed for that.  We got stickers and his meds and headed home. 

He did really good with the whole thing.  On that Saturday, Ryan was at scout camp with Braden and it was just me, Matthew and Zachary.  I noticed that Matthew's leg was a little red around the injection site.  I watched it through the day and it seemed to be getting bigger.  I felt it and it was hot.  I knew something was not right.  I called in to the Nurse Line and she asked a lot of questions. While on the phone, his leg was getting bigger.  The red area was now from his knee to groin and swelling. He said it jiggled when he walked.  Because of the Remicade, Matthew has a weakened immune system.  She told me to bring him in right away with all of his Crohn's issues we didn't want to take chances.  We were in and out in 30 minutes.  Matthew ended up with Cellulitus in in leg!  So a second antibiotic to get rid of that.

He was Trooper that's for sure.  He is all healed up now.  Stitches are out and Cellulitus is under control!  This would Only happen to Matthew!

Remicade Appointment for June!!!

Matthew's Remicade infusion for June went really well.  It was the first time I could not be there.  It kind of made me very nervous.  I felt like I should be there but I couldn't get off of work.  So Ryan and Braden brought him.  It was Braden's first chance to come and see what Matthew has to go through every 8 weeks.  Lucky for me I work 7 floors below the Pediatric Infusion Therapy Center.  My friends Chuck and Katie covered for me so I could sneak up and check on him. My first trip up was just in time to see the "Good Guy" Arik finish up his IV.  I poked my head around the corner and said "Yeah we got the good guy" and Matthew and Arik both laughed.  I ask Arik how he did and he said Awesome as usual.  I hung out for just a few minute and then had to head back to work for a little while.  Ryan, Braden and Matthew played on the computers and Ipods and watched movies and had snacks.  Nothing too exciting happened.  I stopped back up before I had to go catch my bus, to see how they were doing.  Ryan and Braden both complained because it was boring! Matthew was just hanging out in the chair watching a movie.  I left them to be bored a little longer, it usually takes about 3 hours.  I think Matthew is pretty used to how boring it is, but he knows it makes him feel better so it is all worth it!

Take Steps...Be Heard!!!

 Take Steps Be Heard...Walk for Crohn's and Colitis!!!

Thank you very much to those of you who supported Matthew's Monsters!  All together we raised $1520.00!!!  As of walk day we were the #3 team for fundraising and the #1 in fundraising for a Camp participant!  We were also very close to #1 for team members! 

 

 It was a very cold day but we had a great turn out.  Not only for our team but all the other ones as well!  We started on the east side of silver lake.  Before we started they had lots of activities for everyone.  They had balloon animals and a bounce house! They also had food and live music!  There was a lot of good times had by all!

As we started the walk, Bagpipers started to play. 

They lead the whole way playing the whole time! 

Uncle Tyler, Auntie Kayla, Papa Steve and the 3 king boys all made it!

 
 It was really neat! After the walk we got to go back and play some more.  We got to see Dr. Tung and Ruby!  They introduced us to some more people!  We got to meet a lot of people who will be at camp with Matthew.

During the Walk!

 

Grandpa Dan and Grandma Karen!

Our Team!!!

 



Auntie Blythe and Uncle Kyle!



Matthew and Papa Apple!

Matthew and his Brothers! :)

Auntie Hailley!

Matthew and Some of his Cousins!!



Dad's friend from High School, Angie! She also had Crohns!



Matthew and Rachel!

Our Family!

 

Thank you very much for all your support!  It means a lot to all of us!