Wednesday, April 23, 2014

Rain's Public Aquarium

Rain is a big fan of public aquariums and zoos. So he made one of his own. In our living room. Out of cardboard boxes, baskets, stuffed animals, and various oddments lying around the house.


We listened carefully to the guided tour.


Tuesday, April 22, 2014

Eteplirsen



No, it's not going to work for everybody. Access and price will be huge barriers. We should be talking about the interplay between governments, businesses, charities, clinics, and families ... a lot. But it is the biggest, best news we've ever had on the pharmaceutical front.

Monday, April 21, 2014

At Least

At least it isn't broken.


At least we have a hospital nearby. 
At least I remembered to tell them about Duchenne and Fatty Embolism Syndrome
At least we can get follow-up care tomorrow without missing either of the really fun field trips the Kindergarteners get to go on this week. 
At least it wasn't on his birthday. 
At least we didn't have to cancel his birthday party. 
At least the splint is keeping him out of pain. 
At least we have his wheelchair because the sling was way too heavy for him to manage.
At least Rain already knows a lot about asking for help and I already know a lot about helping him.
At least Scott is well enough to do the grocery shopping.
At least Rain was having fun bouncing on the trampoline when he fell and hurt his arm.
At least it isn't broken. It could have been worse.

He's wearing a shirt that proclaims "Live Well". Sometimes we get hurt when we're out in the world having fun. At least we are out in the world having fun. Living well, indeed.

Friday, April 18, 2014

Friday Photo

Friday Photo

A single photo, every Friday. No words required.



Wednesday, April 16, 2014

Foolery

The kids decided to try an April Fool's prank on the Tooth Fairy.

This note and piece of dried corn were to be found under each pillow.

The Tooth Fairy countered with a sprinkling of fairy dust and these notes.

Monday, April 14, 2014

Quotations for Health and Sanity: "Smile"


Quotations for Health and Sanity

"Smile," featuring Phyllis Diller and Pink Martini

Click here to listen.

Jawin'

Last week Scott broke his jaw. He was playing soccer, collided with a teammate, and his bone was snapped in half. I don't have any art for you. I have no further explanation. Suffice it to say that after much longer than it should have taken, we went with our second-opinion doctor, who did a great job of immobilizing Scott's mandible. So now I am living with a grumpy, drugged, pain-addled, hungry, and bored man whose teeth have been wired together for the next few weeks. We have a lot of soups on the menu. A full recovery is expected, but not before the summer.