Friday, December 12, 2014

Friday Photo

A single photo, every Friday. No words required.

Wednesday, December 10, 2014

So Fort Collins

We love our home town.

Fabulous Adaptive Bike Trailer by Wike

Very happy to support our neighbors!

Whatever you celebrate or don't celebrate, a very merry season's greetings to you all!

Monday, December 8, 2014

Quotations for Health and Sanity: George Herbert, "Love (III)"

Quotations for Health and Sanity

George Herbert, "Love (III)"

Love bad me welcome: yet my soul drew back,
Guilty of dust and sin.
But quick-eyed Love, observing me grow slack
From my first entrance in,
Drew nearer to me, sweetly questioning
If I lacked anything.

"A guest," I answered, "worthy to be here":
Love said, "You shall be he."
"I, the unkind, ungrateful? Ah, my dear,
I cannot look on thee."
Love took my hand, and smiling did reply,
"Who made the eyes but I?"

"Truth, Lord; but I have marred them; let my shame
Go where it doth deserve."
"And know you not," says Love, "who bore the blame?"
"My dear, then I will serve."
"You must sit down," says Love, "and taste my meat."
So I did sit and eat.

Friday, December 5, 2014

Wednesday, December 3, 2014

Muscle Clinic Day

It's time for Muscle Clinic again.

As far as general health, Rain is doing fantastic. My little boy remains an outlier. After a babyhood of extreme motor skills delays (he learned to walk at 2 years 8 months), Rain has seemed to ride a wave of ever improving health and strength. He continues to hold stable on his North Star assessment and other tests. His breathing has improved so much since the summer that his pulmonolgist says we can wait a year before we see him again (we will continue to have Rain tested for lung function twice yearly with a respiratory therapist, as is standard at our clinic). At age 7, Rain is pushing the boundaries of muscle growth outpacing (or equal pacing) muscular decay. We'll take it. I know you're wondering-- Rain remains medication-free (no steroids) at this time, though we have serious conversations about it at clinic and at home on a frequent basis. The bottom line is that, right now, Rain is doing so well--holding so steady--that he stands little to gain from an initiation of steroids at the moment, especially in comparison to the virtual guarantee of side effects that nobody wants, least of all Rain. So we'll keep doing what we've been doing: daily vitamins; twice daily stretching; weekly massage. Therapeutic swimming and horseback riding. Nasal rinsing and Flonase spray. Using his manual wheelchair (someone else pushing) for long distances at school and in the community. Good food, plenty of love, independent play both indoors and out. It seems to be working for him.

We did find out that Rain's brand new wheelchair is several sizes too small. I am not feeling very loving about our local monopoly wheelchair vendor. We worked with a vendor at Clinic to make some emergency adjustments while a new new chair is ordered. Hopefully we can pick it up in January when we're in the city again for Neuropsychology.

Working under the hood with tools and a good, experienced mechanic

And then we stopped by the enormous mobility devices warehouse.

Do you remember this look (it's the second picture from the top)? Well, here it is again. What cracks me up is that he always starts by going backwards. Once he figured out how to shift gears, he zoomed (forwards) all around the place.

First time driving

Time marches on and we like to look at our options early. Rain will be 8 in the spring and he's planning to go to camp this summer. He's old enough to drive himself. I'm not sure if I'm ready. But, really, isn't this a decision that should be all about him? Look at that smile. We all know what's coming next.

Monday, December 1, 2014

So Much to Be Thankful For


Grateful to our neighbors for raising a turkey just for us: 31.5lbs and absolutely delicious!

The chef and his bird

Beautiful to watch the kids find backyard treasures for a lovely centerpiece.

Table set by Hazel

Joyful to hear our first-grade Thanksgiving presentation about the Pilgrims and Wampanoag people.

Explaining the map

Showing the Mayflower

Talking about differences in dress and lifeways

Demonstrating the Wampanoag farming style

Planting the Three Sisters: Corn, Beans, Squash

Family. Food. Neighbors. History. 
So very Grateful.

Friday, November 21, 2014