Monday, September 15, 2014


Rain's teeth are a mess. He has a tiny little mouth (thank you, Duchenne) and great big teeth (sorry, kiddo) trying to crowd their way in. Braces are in his future, but right now the orthodontist is content with semi-annual check-ins until Rain's "6 year" molars come in. Judging by his sister, those "6 year" molars might be done working their way in when he's about 10.

When he was a baby, before he learned to walk, Rain used a little toy bicycle to get around. We lived in a tiny townhouse with more stairs than you could shake a stick at. One day, I left the safety gate open for just a minute, and Rain and his bicycle tumbled down a short flight of stairs onto a tile floor. Straight onto Rain's face. He chipped one front tooth and bruised the other so badly that it never recovered, but rather stayed right where it was, dead and brown. I was so grateful that he didn't break his nose or get a concussion that I didn't really worry about his teeth. The teeth weren't loose at all and didn't seem to cause him any trouble. Until this month.

Rain lost his first tooth recently and the others seem eager to get out of the way of those huge permanent teeth that are trying to scootch in. The last couple of weeks have seen a loosening of Rain's front teeth, which is perfectly normal and to-be-expected. But this was unexpected:

Something funny in Rain's mouth

Rain got a funny spot in his mouth. It was squishy, not painful, very mysterious, and growing. We took him to the dentist. She recommended an endodontist. The endodontist sent us back to the dentist. (I hate it when doctors do that!)

The dentist went ahead and pulled the dead front tooth and the one next to it, in the hope that this would cause that funny thing to go away.

It hurt a lot, Rain said. So he spent the rest of the day on the couch watching as many episodes of Sir David Attenborough's Life series as he wanted. I think he saw 10. Sir David makes everything bearable.

The tooth fairy came in due course. The funny spot remains, a little less than a week later. It seems to be shrinking but it isn't healing quite the way I had hoped. Maybe when that other front tooth, now hanging by a thread, comes out the funny spot will release.

Rain's new smile, for now
Rain's dentistry/orthodontistry saga is just beginning. Dental issues are common in people who have neuromuscular disorders but most dentists aren't trained in specific treatments for these patients. Many children's hospitals have dentistry programs for kids with special needs. Ours does. People with Duchenne can have further specialized dental needs. Read about some issues here.

Friday, September 12, 2014

Friday Photo

Friday Photo

A single photo, every Friday. No words required.

Monday, September 8, 2014

Quotations for Health and Sanity: Phillip Lopate on The Art of the Personal Essay

Quotations for Health and Sanity

Phillip Lopate, in his introduction to "The Art of the Personal Essay"

"To essay is to attempt, to test, to make a run at something without knowing whether you are going to succeed."

Sunday, September 7, 2014

World Duchenne Awareness Day

"Duchenne muscular dystrophy is a devastating disease which affects approximately 250.000 children around the world. The vast majority of Duchenne patients are boys and young men who progressively lose their physical functions before they inevitably die of this cruel disease.
Duchenne Muscular Dystrophy is one of the most common fatal genetic disorders which affects on average 1 in every 3500 newborn boys, with very few girls suffering from the disease. Duchenne boys first lose the ability to walk during their childhood days and as they grow into adolescents they also lose the ability to use their arms, carry out everyday activities such as writing or feeding themselves, and their ability to breathe deteriorates as well. And some boys havelearning issues. As they grow into young men Duchenne boys finally succumb to the disease and die due to respiratory problems or heart failure. But many don't reach adulthood in the first place.
Duchenne patients urgently need good medical care. This improves not only their quality of life but it is also proven to prolong life spans by between 10 and 20 years. The knowledge about good medical care is widely available, but the majority of Duchenne boys still doesn’t have access to good care and facilities. We need to address this and find ways to improve the situation for all Duchenne patients. There is currently no cure for Duchenne Muscular Dystrophy but for the first time ever there are several drugs under development. For a very small group of patients a first drug recently received Conditional Approval in Europe. Now we have to make sure that all Duchenne patients will benefit from new developments as soon as possible!
To achieve our mission Raising Awareness about the disease is key. You can help us raise awareness in any means possible. Please watch and share the video, help us to make sure as many people as possible will understand we all need to do something!"






Little steps




Land for Hope


SMDF, Sweden


Progena Foundation

Friday, September 5, 2014

Friday Photo

Friday Photo

A single photo, every Friday. No words required.

Wednesday, September 3, 2014

How the Days Fly By


June blooms
July steams
August ripens

September rushes!

Monday, September 1, 2014


My baby is a big kid now. He has just graduated from his first wheelchair to his second. Amazing how the time flies by.

Rain gets a rundown on his new chair's features
from our vendor/repair/fit specialist.

You may not be able to see how vividly gold the new chair's frame is. Plus all the black trim. Rain has decided to call him the Bumblebee.