Rare Disease Day

Today is Rare Disease Day. For those of you who don't know, NORD (National Offices of Rare Diseases) defines a rare disease as one that has fewer than 200,000 patients in the US or about 1 out of every 1000 people. Shwachman-Diamond Syndrome, which is what the Wiz has, is one of these diseases: the incidence of SDS in the US is 1 out of every 75, 000. There are so many of these diseases (most of which are genetic) out there.

If you'd like to learn more about the rare disease in our life, here are more links:

http://www.shwachmandiamondamerica.org/index.html (Wiz's picture is in this website!)
http://www.shwachman-diamond.org/
http://marrowfailure.cancer.gov/SD.html

The Wiz is actually sick right now. He has a sinus infection (hence the CT scan). His only symptom was his asthma was worse. That's the way life is sometimes. (Wish us luck--he has to have a CBC today.)

Quick Tuesday

Today was busy.

I taught.
I washed laundry.
I made phone calls about the camp survey and sent emails out for that.
I took the Wiz to the allergist (asthma is acting up, probably due chronic sinusitis. CT scan tomorrow, because I haven't spent enough time at St. Mary's recently.)
Game Boy had his Almost Spring Band Concert. (BBFs--he now can play the Michigan Fight Song. Do you have sheet music so he can learn the OSU one?)
I found out how much he loves playing trumpet--he plans (and was recruited for) jazz band which practices before school. Jazz band is cool.

Now I am sitting down for a bit. I'm tired.

Oh, and 10 more posts, and I have posted here 500 times. I can't believe it!

I finish things.

On Saturday, I made an apron. I love the colors: chocolate brown, mint ice cream, sunny yellow.
The daisy fabric for the ties and waist band make me happy, too.

On Sunday, I started a hat. Another Unoriginal Hat from the Yarn Harlot.
This is some of the yarn that manxomeKal sent me. It knits up into a mighty fine hat. Perfect for skiing, if I ever go. Or maybe ice skating.

He's 8!

Today was a big day for the Wiz.
It's his 8th birthday. He went to school, he chose our dinner menu which he helped cook (the menu was pulled pork sandwiches, cole slaw and roasted potatoes).

He also opened presents.
Game Boy gave him a monkey birthday card, quarters to buy monkeys, and a monkey house that he made for the Wiz's monkeys. The Wiz loved it. The Collar gave him a game we played at a friend's house: Apples to Apples, which can be hysterical. He also gave him some smokey pink marbles.I found a jousting game set for the knights that the boys have been collecting and been receiving for years. This was how they ended the evening.

Splinted!

Today at 11:15, we went to the hospital so that the Collar could be knocked out so he could have his nose fixed. We got home at nearly 3:00, which is a pretty long time for a 10 minute procedure. I guess everyone was having out patient surgery today.

We'll see how it looks on Monday morning, when they take off the splint. I'm not sure if I feel really bad for him, or am jealous that he doesn't have packing or a nose sling. He has his meds, he'll sleep pretty well tonight, and this will all be in the past.