|
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
Thursday, December 18, 2008 12:01 AM CST Hi Friends!
Wow, it’s been way too long since I’ve updated. I have had a lot of problems with my g-tube, and even got a new kind of button, it’s called a Nutraport. That took forever to get, mom was having a lot of problems trying to find one, and then once I got it, we’ve had problems getting the proper supplies.
My site is finally starting to heal, although there is still leaking issues, but it’s better than it has been. My infusions are going pretty good, too, although last week I had to go to the EU because I was choking then my SATS dropped into the 80’s and my HR nearly doubled what it had been all day.
Mom took me down to the EU and we stayed there for about 4 hours. They gave me some O2 and took a chest x-ray. I finally started to feel a little better so they let me go home. On our way home from Children’s Hospital mom and I got into a car accident. Someone turned right in front of us and we collided. What a terrible day!!!! Our vehicle had to be towed and mom’s hand hurt so we had to head back to another EU. The doctor checked me over and I seemed okay, but mom’s finger is fractured. She had to see another doctor earlier this week and now she has to have surgery to fix her finger. She is having that done in just a couple of hours. Hopefully she will still be able to take care of me with her left hand.
I had to miss my ERT today because of mom’s surgery, but I will go again on Tuesday. My doctor agreed to increase my infusion rate, and we have done that the last 3 times and I have done pretty well. I had those problems last week, but my pulmonary and genetic doctors both think that those issues were not related to the infusion.
I appreciate all of you that are checking in on me. It makes me feel good to know that so many people love me and my family.
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 16th 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
|
|
