Monday, April 30, 2012

Jake

Today was my first training day with Jake.

I could talk about the day for a very long time, but I'm goosed!

For now, here's a video of Jake and his brother - Diesel - enjoying some down time

Friday, April 27, 2012

Love is not a weakness

I was singing Ashlie's praises the other day.

I've heard that Ashlie's effort to spread the word by selling my bracelets has been met with derision by one particular boy.

Ashlie, I have a few thoughts:

  1. He's an imbecile - that's the most polite way I can say it
  2. You are taking action while others stand by
  3. You exhibit compassion and empathy, while other's are obviously uncomfortable with such considerate, kind behavior.
  4. Sadly, this won't be the last time people try to bring you down while you're doing the right thing: stick to your guns.
  5. This song's for you...

Monday, April 23, 2012

Julie Rivera

Julie paid us a visit yesterday, and the results are amazing. Please check out Julie's site, and keep her in mind when you want memorable photographs!

Find more of Julie's work at http://julierivera.blogspot.com/

I See You

News programs only seem interested in the most shocking stories sometimes. Violence, crimes, and scary stories dominate.

That's why it's so refreshing to hear from my parents about Ashlie: a young lady that used the money in her Easter basket to get some Don't Shrink bracelets, which she is taking to school to sell and spread the word.

Ashlie, I see you. Thank You.

Sunday, April 22, 2012

Myrtle Beach

Amanda and I took the girls to Myrtle Beach this past week, and had a wonderful time. Our week away was sandwiched by visits with all of our family, which made the week even more special.


We stayed overnight with my parents; it was a good way to break up the long journey and to enjoy some quality time with my folks. We arrived in Myrtle Beach at dinner time on Saturday. The van was unpacked as expediently as possible, Louise was thrown into her pjs, and we made a bee line for the beach.

There is a rejuvenating quality to watching a child frolic in the sea, and Cora was only too happy to frolic.




Sunday was also Easter Sunday, so Amanda and I decided we wanted to enjoy a special Easter brunch. We made our way down the coast and eventually found Tommy Bahama's. It wasn't exactly authentic local cuisine, but it had the right atmosphere, a great seafood menu, and quality food. It was a wonderful meal. And even though we had already spent one night at the beach, the brunch felt like it kicked off our vacation in style.

We couldn't help but partake in some retail therapy during the journey back to our beach house. We found it impossible to resist the lure of the outlet mall; I got trainers, Amanda got a dress, Cora bought ice cream with pocket money from Nana and Pop, and Louise got a much-needed sun hat.

Monday brought an enjoyable trip to the beach! Louise was wearing her sun hat and Cora Mae was playing with her bubbles. The weather was slightly brisk at first, but soon warmed up. Louise tried to eat some sand,  and Cora tried to build castles with it. Our time at the beach was always going to be dictated by how Louise was doing, and she hung in there for a good few hours before we headed back for lunch and shade. Cora made her first visit to the swimming pools by the beach house that afternoon. Over the next few days, the indoor pool, outdoor pool, and even the hot tub were all used by Cora. Needless to say, the warmer indoor pool and hot tub were more to Cora's choosing than the chilly outdoor pool. 


Cora's enjoyment of the indoor pool, and my fondness for the hot tub meant that it was a no-brainer for us to hang out at the pools on Tuesday. Cora continued to practice her swimming, and Louise hung out in the swimming pool for the first time.

Wednesday brought an early departure for Brookgreen Gardens, a 9000 acre public gardens on the grounds of several old plantations. We enjoyed meeting animals at the zoo, a brief visit to the butterfly house, and a wonderful walk through the gardens before taking a boat ride through the rice fields of the old plantations.





The boat ride also brought us in close proximity to a wild alligator. We had a wonderful day in the gardens, but made our way back north for dinner and ice cream at Flynn's Irish Pub.


Thursday would be our last full day at the beach, and we wanted to make the most of it. We visited the Ripley's Aquarium, where we came face-to-face with sharks, crabs, and a variety of fish. It wasn't a lengthy visit, but it brought lots of looks of amazement and enjoyment to Cora and Louise.
Louise loved the tunnel under the tank!



The aquarium was located at Broadway at the Beach. We gave Cora her fill of rides, games and tattoos, before heading off for dinner.



Cora's first tattoo... a 3 inch Mickey Mouse!
Our final dinner at the beach was at P.F. Chang's. Friday morning was a good opportunity for Cora to say goodbye to the turtles that graced our pond before leaving the beach for Lexington, SC. 
Cora attempts to use chopsticks!


Amanda's former colleague, Sidni, and her husband Jeremy live in Lexington; our journey home presented a rare opportunity to swing by for a visit.
After lunch with Sidni, we traveled north back through Charlotte where we stayed with my brother and Julie for the night.


We made our way home on Saturday afternoon after more quality family time in Charlotte.   We arrived back in Lexington at dinner time, relaxed from our vacation, but slightly road weary. Regardless, the long journey home didn't take away from a fantastic break at the beach. Our break was rounded off perfectly on Sunday with visits from David and Phyllis, and Claudia and Renata. 

Saturday, April 21, 2012

Pre-launch


The proof of my Don't Shrink hat arrived, and it looks absolutely amazing.

As I prepare to make a bulk order, I thought it would be nice to make an offer: pre-order a hat and I'll knock it down to $20.00 instead of $25.00.

The hats are original flex-fit; a slightly elasticated band keeps a snug fit on your head bone.

Please contact me @ conwayap@gmail.com if you are interested.



Friday, April 20, 2012

ALS MND Daily News Digest

ALS patients differ on treatment choices in later phases of disease
EurekAlert (press release)
NEW ORLEANS – Two new studies analyzing treatment decisions in late-stage amyotrophic lateral sclerosis (ALS) patients shed light onto treatments aimed to extend the duration and quality of life in this progressively debilitating neuromuscular disorder ...
See all stories on this topic »
Playing for Dad: Rick Cook lost his battle to ALS, but daughter Carlie carries ...
Tulsa World
He put up a brave fight before dying of Amyotrophic lateral sclerosis (ALS) - Lou Gehrig's Disease - at 49. "Even though I can't see my dad, he's always with me in my heart," Carlie Cook said. "Every time I step on the field, I know he is watching me ...
See all stories on this topic »
Giving as Receiving: The True Rewards of Charity
The Nonprofit Quarterly
She founded the nonprofit Hope Loves Company after losing her first husband, Kevin O'Donnell, to Amyotrophic Lateral Sclerosis (better known as ALS, or Lou Gehrig's Disease). ALS is a degenerative nerve disease. Patients gradually experience muscle ...
See all stories on this topic »

Thursday, April 19, 2012

ALS MND Daily News Digest

Cytokinetics Announces CK-2017357 Receives Fast Track Designation From the FDA ...
MarketWatch (press release)
... its fast skeletal muscle troponin activator, has received Fast Track designation from the US Food and Drug Administration (FDA) for the potential treatment of amyotrophic lateral sclerosis (ALS), also commonly known as Lou Gehrig's Disease.
See all stories on this topic »

My list revisited

With some - most - of my original list having been achieved, it seems high time I added some more things:

  • I want to attend the Masters
  • I want to help film a segment of/for Top Gear
  • I want to visit Yosemite, Yellowstone, and the Grand Canyon
  • I want to go white-water rafting
Meanwhile, a post about our week away is in the works...

Tuesday, April 17, 2012

Growing By 1

Great news: the wonderful folks at St. Francis Service Dogs feel that Jake, a black lab, is a great fit for us, and want to start my training soon!

A good day...
Cora getting Jake some liquid refreshment!

Monday, April 16, 2012

Friday, April 6, 2012

Jake

I got to meet Jake today. Jake is a two year old black lab at Saint Francis Service Dogs. It was a meeting to check how good a match Jake might be for our family.

As usual, the staff were wonderful throughout.

So was Jake.

We must temper our hopes; Jake will meet other applicants in an effort to find the best match, and that may not be us.

Still, it was a good visit


Wednesday, April 4, 2012

ALS MND Daily News Digest

Top Doctors in Chicago: Teepu Siddique
Chicagomag.com
Last summer, the Feinberg School of Medicine at Northwestern University announced that its researchers had uncovered a common cause for the various forms of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). That dramatic breakthrough could ...
See all stories on this topic »
Israeli Researchers Find Possible Cure for ALS
NTDTV
So far, Amyotrophic Lateral Sclerosis—or ALS—is an incurable disease. It manifests in atrophy of the nervous system. It mainly harms the motor nerves that allow muscle activity. "The mental abilities of these patients is not harmed at all, ...
See all stories on this topic »
Top Doctors in Chicago: Other Specialties
Chicagomag.com
773-702-6222 RAYMOND P. ROOS Amyotrophic lateral sclerosis (Lou Gehrig's disease) (ALS); multiple sclerosis; neuromuscular disorders. CHICAGO. 773-702-7852 SUSAN M. RUBIN Multiple sclerosis in women; migraine in women. GLENBROOK.
See all stories on this topic »

Hump Day

Smokey



I had a wonderful, relaxing weekend with my parents at the Smokey Mountain Country Club. Our accommodation overlooked a few tricky holes on the course.

We made some enjoyable excursions to Bryson City and to Cherokee, enjoyed great food, and had a thoroughly peaceful time in the mountains of Carolina.

ALS MND Daily News Digest


A Little Device That's Trying to Read Your Thoughts
New York Times
Called the iBrain, this simple-looking contraption is part of an experiment that aims to allow Dr. Hawking — long paralyzed by amyotrophic lateral sclerosis, or Lou Gehrig's disease — to communicate by merely thinking. The iBrain is part of a new ...
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Monday, April 2, 2012

From Parents...

...and much appreciated. Don't forget; you can enlarge an image by clicking on it