Wednesday, July 30, 2014

We Never Do Anything Fun Around Here

As you read in Hazel's and Rain's interviews last week, We NEVER Do Anything Fun Around Here. And none of it is ever related to or inspired by Duchenne or my feelings about Duchenne. I'm sure you believe them. We will explore this theme through photography over the coming days to illustrate their point.



How about horseback riding every week, together as a whole family? The kids and I are each on horses, and Scott sidewalks for Rain. Uh huh. No fun here.

Fun level: 95%
Because of Duchenne level: 99.9%


Tuesday, July 29, 2014

We Never Do Anything Fun Around Here

As you read in Hazel's and Rain's interviews last week, We NEVER Do Anything Fun Around Here. And none of it is ever related to or inspired by Duchenne or my feelings about Duchenne. I'm sure you believe them. We will explore this theme through photography over the coming days to illustrate their point.


Since we had to be in Denver for a doctor's appointment anyway, when we finished at the hospital we went out for a really fancy, avant-garde lunch, followed by an afternoon at the Natural History Museum. Nobody had any fun at all, I assure you.

Fun level: 80%
(Demerits for the long drive and doctor visit.)
Because of Duchenne level: 98%

Monday, July 28, 2014

Rain Delay

We finally got the results from Rain's latest sleep study, which was performed as a follow up to his most recent surgery. Prepare yourselves....

Rain's sleep apnea/hypopnea index is now NORMAL, probably as a result of getting his adenoids out of the way.

We now return to our regularly scheduled Duchenne programming, which calls for a sleep study at the onset of full-time wheelchair use and/or at the onset of poor sleep symptoms. Rain gets to "sleep naked" for a few more years (well, not naked because, of course, he has to wear his boots now). Still I guess it's good to know that we're ready for BiPAP when it comes, because it isn't a question of if.

Saturday, July 26, 2014

Quotations for Health and Sanity-- Special Current Events Edition: Psalm 122



Quotations for Health and Sanity

Psalm 122


I rejoiced with those who said to me,
'Let us go to the house of the Lord.'
Our feet are standing
in your gates, O Jerusalem.
Jerusalem is built like a city
that is closely compacted together.
That is where the tribes go up,
the tribes of the Lord,
to praise the name of the Lord
according to the statute given to Israel.
There the thrones for judgment stand,
the thrones of the house of David.
Pray for the peace of Jerusalem:
'May those who love you be secure,
and security within your citadels.'
For the sake of my brothers and friends,
I will say, 'Peace be within you.'
For the sake of the house of the Lord our God,
I will seek your prosperity.

Friday, July 25, 2014

Friday Photo


Friday Photo

A single photo, every Friday. No words required.


Thursday, July 24, 2014

We Never Do Anything Fun Around Here

As you read in Hazel's and Rain's interviews last week, We NEVER Do Anything Fun Around Here. And none of it is ever related to or inspired by Duchenne or my feelings about Duchenne. I'm sure you believe them. We will explore this theme through photography over the coming days to illustrate their point.





We went to a drive-in movie/rock concert and stayed up until one in the morning! If that isn't fun, I don't know what is.


Fun level: 90%
Because of Duchenne level: 25%

(Mainly because I'm not the kind of mom to let my kids stay up that late, but I figured it was a peak experience that would never be repeated, so with Duchenne in mind, we'd better seize the opportunity now.)

Wednesday, July 23, 2014

We Never Do Anything Fun Around Here

As you read in Hazel's and Rain's interviews last week, We NEVER Do Anything Fun Around Here. And none of it is ever related to or inspired by Duchenne or my feelings about Duchenne. I'm sure you believe them. We will explore this theme through photography over the coming days to illustrate their point.

We had a lovely 4th of July with all the trimmings.

We spoke with our favorite veteran. Thank you, Grandpa Tom!




We had a BBQ picnic with friends and relations.



I made the kids earn their pie with a history lesson.



We played picnic games.



We roasted marshmallows.



And we had fireworks-- sparklers in the backyard and a view of the city display through some trees.



Fun level: 90%
Because of Duchenne level: 5% 
(I never would have agreed to the sparklers if I hadn't been thinking about how living with Duchenne makes the risk:benefit ratio shift toward doing more dangerous stuff just because there's a co-occuring chance of awesome.)