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Kraig Klenke 
Welcome to my journal! I write in here to keep my family and friends updated about me. Please come back to visit often…we all love to read what you write in the guestbook and know that you are checking on me.
I am 16 years old and got the diagnosis of Mucopolysaccharidosis Type II (MPS II) a few weeks after my third birthday. You can call it “Hunter Syndrome”, if that’s easier! My body is missing an enzyme to break down complex sugars, so it stores them in my cells. Yeah, it’s really rare…only 1 in about 150,000 people have it, and with MPS II, it’s in boys about 99% of the time.
Anyway, on August 31, 2006, I got to start ERT. That’s Enzyme Replacement Therapy. It goes through an IV and into my body through the port-a-cath in my chest. It’s not much fun (it takes about six hours!), but it makes me feel a lot better. I love Elaprase!
Thanks again for stopping by my page! You can also look at the Bowl4Kraig website for even more stuff about me and my family.
Journal
Sunday, September 28, 2008 4:15 PM CDT Hi Friends!
Have I told you lately how much I hate this stupid g-tube?!?!? The g-tube site is kinda gross, so I try not to look at it too much. It was slightly better, but then it started leaking again and some tissue started building up at the bottom of the button area. Mom took me to see the GI NP a couple of weeks ago. She has been pretty helpful and hopefully can get my medical supply orders straightened out. Mom spends a lot of time on the phone with either doctors, insurance, school or the medical supply company.
I have treatment on Tuesday this week instead of my regular Thursday. That’s because the nurses have some kind of meeting. My pulmonary doctor is supposed to come down and see me during treatment to talk about ordering another machine for me to use at home. The nurse from PAWS will also come and see me to check out my g-tube site. She came down on Thursday and had a worried look on her face. She even took pictures to show the surgeon, can you believe that?!?!? Why would you want a picture of something so gross looking? The PAWS nurse checked the balloon to see if there was enough fluid in there, there wasn’t, so she had to add some more so that the Mic-key button wouldn’t fall out. When I got home and after I took my bath mom and dad redressed the site. Then later that night a bunch of goo leaked out and made a huge mess. I know mom was pretty worried about it. They ended up changing out the Mic-key button because they thought the balloon had burst, it didn’t, but since they had the new Mic-key all opened up and everything they decided to change it anyway. Ever since then there has been leakage, so I’m thinking something isn’t quite right, good think I will be at the hospital again on Tuesday so the nurse can check it out.
Last Sunday my friends Mark and Alice invited me and my family out to their farm for a picnic. The weather was perfect and I enjoyed walking around the lake. We even went on a hay ride, which was fun as long you kept your eyes open for those tree branches.
Hopefully I will be able to go to school this week, all week! I really enjoy seeing my friends there, plus I get to ride my bike and I really like to do that!
I’ll leave this link up clicking HERE. Its pictures my mom took while I was in the hospital. I wish I could have a TV like that one, I loved that thing, it was very cool!!!
Until next time,
Kraiggy
My Mom made this photo story of me for my birthday, take a look, but be patient, you need to download it first so you can see the whole thing and hear the music. It’s pretty cool! 
Happy 16th Kraig
Read Journal History
Hospital Information: Home
Links: http://www.mpssociety.org The National MPS Society, Inc.
http://www.bowl4kraig.com Kraig's bowling-a-thon website
http://mpsforum.com/forum/index.php MPS Forum
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