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.