Going to Seattle

It is 8:30 mountain time and we have already been in the car almost three hours. I got up to take sunrise pictures only to find more clouds, so no pictures and an early start on the road. We should get to Seattle sometime this afternoon and are excited to stay in a hotel tonight. (The KOA Cabins are super nice, but the beds left a little something to be desired.) I am a little sad that the weather didn't cooperate in letting me get my dream shot on the west side, but I did get a couple OK pictures that I will post later. I will leave you with a picture of a friend we met while having a picnic by the lake.

Lake McDonald

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Reese's Story

Reese was born on January 26, 2006 after an uneventful pregnancy and beautiful birth. All was “normal” until April 14, 2006 when he had his first seizure. It was small; he looked like a deer in the headlights and his right hand splayed out. Within a week he was having “grand mal” seizures. When he had four in the front carrier at his brother’s kindergarten round up, off to the emergency room we went. Reese developed a kind of seizure called infantile spasms several days later. These are called, in the literature, a catastrophic epileptic encephalopathy. Almost a year to the date of his first seizure, Reese was diagnosed with a mitochondrial disease, Complex IV deficiency. Basically, the cells of his body don’t make enough energy for normal growth and development. The abnormal metabolism in his brain is what causes his very difficult to control seizures. He has been through numerous seizure medications, several multiple times. We have finally obtained fairly good seizure control on five different meds simultaneously. He takes a host of vitamins and supplements that are thought to help kids with mitochondrial disease. He has been out of the hospital for over a year, except for scheduled procedures and one recent ER visit. He has a feeding tube, significant developmental delays, daily seizures and when he wants to be, is the best snuggler there is. He has taught us so much in the time that he has been here. . .patience, advocacy, gratitude, and a true appreciation for time and the small things in life. As much as we wish he was a “normal” walking, talking three year old, we are thankful for our intermittent smiles, many snuggles, and many lessons he has taught us.

www.caringbridge.org/visit/reesejohnson

Rained Out

So far we have been rained out on the west side of Glacier. And from the sounds of things that isn't going to change. We can't even see the mountains. :( We are headed into the park, but probably won't get to do much in the rain.

WDAY - Kevin Wallevand story

I just got the link to the story that Kevin Wallevand did for WDAY.

http://www.wday.com/event/article/id/22860/

Update

We made it over the mountains. Going to the Sun road isn't so bad if you driven trail ridge road in Rocky Mountain National Park. I have one new picture but first I want to thank our new sponsors:
Sheri
Denise
Belinda
Anita

Night 2 - Morning 3

So far the weather in Glacier isn't cooperating with me very well. I got a couple of OK sunset pictures and a couple at sunrise, but haven't had the weather to get the kind of pictures I was dreaming of. On the other hand it has been beautiful outside the park at the campground, so we have been relaxing and enjoying that. Back into the park tonight for another attempt at sunset.

Highlights from day 2

A bit longer of a drive from Billings to Glacier than I thought it would be. We did see this really cool mustard field though.



I went out to shoot the sunset last night and was back out for sunrise this morning. I bypassed a spot called Wild Goose Island where there were about 10 other photographers lined up hoping the sunrise would reflect of the mountains. It didn't. I however did get some good pictures of the sunrise shooting back over the lake at another site. I will post them later today once I have had a chance to sort through them.

just looked online and saw none of our updates today worked. gotta love technology. I'll work on it tomorrow.

WDAY - Journey For Jess

Kevin Wallevand did a great job on our story last night. You can watch it here http://www.wday.com/pages/archive10 until 10:00 tonight when it will be replaced by tonights. It is the first story of the second segment.

tatanka - prairie dog - to glacier we go

Here are a couple more from today. I am convinced Teddy Roosevelt is a park meant for exploration, not visiting. An hour definately does not do it justice.

We are off to Glacier tomorrow, and to say that I am excited would be a gross understatement. We hope to get there soon after lunch.

Well, we are about to watch WDAY news at 10:00 through their web feed to see our story. They said they will post it once it airs, so I will post that link when I get it.

TRNP, Noah's quote of the day

Disclaimer - I do not have much of a zoom lens. Translation - THIS BUFFALO WAS CLOSE!!!

As beautiful as TRNP is, I always have trouble getting a picture I like. This is as close as i got.

Noah's quote of the day. Is there a Dairy Queen in this town, cause I sure could use one.

teddy roosevelt national park

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New Sponsors, News, Getting Started

By the time you read this it will probably be Friday. Our story is supposed to run in the Fargo Forum today and our interview with Kevin Wallevand will be on WDAY news tonight.

We are leaving in the morning and should be making our first updates from the road from Teddy Roosevelt National park sometime in the early afternoon. See you then.

Thank you to our newest sponsors:

Amy Kronbeck
Heather Servaty-Seib
Roger and Kathy Haugen
Cetero Research
Ulteig Engineering
Jon Severson
Ty and Lindsay (last name unknown)

News Story

Hey Everyone. The first of what will hopefully be many stories got printed today at DL-Online.
http://www.dl-online.com/event/article/id/45807/

Also, Kevin Wallevand from WDAY is doing a story on us. It will air on Friday night at either 6 or 10PM. You can watch it on www.wday.com

Hello Montana

We will be headed to Billings, MT in two days to start the Journey For Jess. Here is a picture I took on Beartooth pass, just south of Billings, last summer.

Thank You

I just got a list of new sponsors from my foundation contact.

Thank you to the following new sponsors:

John and Lisa Hoard
Chad and Donna Mosher
Michael and Karey Stirling
Melissa McCulley, Optix Gallery
Gate City Bank
Creative Kitchen
Jennifer Nygaard
Monty and Paul Mertz
Alyssa George
Colby Forsgren

And also thank you to the following individuals for their donations:

Harvey Jensrud
Jo and Dennis Johnson
Jill Sinner
Penny Tatman
Neil and Maria Gibbons
Michael and Lisa Forsgren

A call to action

An excerpt from Newsweek magazine. Published April 20, 2009.

A STORM IN THE BRAIN

The toll of epilepsy has been overlooked—and the research underfunded—for too long. A call to action. By Jon Meacham

The statistics are stark and sobering— and for the uninitiated (which is to say most of us), startling. Epilepsy in America is as common as breast cancer, and takes as many lives. A mysterious and widely misunderstood affliction, epilepsy is a disorder in which the brain produces sudden bursts of electrical energy that can interfere with a person's consciousness, movements or sensations. Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents; one in 10 people will suffer a seizure in their lifetimes. By some estimates, the mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Between 1 and 3 percent of the population will develop some form of epilepsy before age 75.

Here is the link to the full story: http://www.newsweek.com/id/193586

Single Digits

It is 8 days until the start of the Journey For Jess.

If you ever wondered what the trip would look like in a web address, here it is:

http://maps.google.com/maps?f=d&source=s_d&saddr=West+Fargo,+ND+58078&daddr=St+Mary,+MT+to:West+Glacier,+Montana+to:seattle,+wa+to:forks,+wa+to:Portland,+OR+to:redding,+ca+to:San+Francisco,+CA+to:Yosemite+Valley,+California+to:bishop,+ca+to:williams,+AZ+to:tuba+city,+az+to:springdale,+ut+to:Park+City,+UT+to:moran,+wy+to:livingston,+mt+to:West+Fargo,+ND+58078&hl=en&geocode=&mra=ls&sll=41.869561,-111.137695&sspn=17.946019,37.045898&ie=UTF8&ll=41.738528,-110.654297&spn=17.982169,37.045898&z=5

I wonder if google maps has a limit for destinations? I made it to Q.

New Sponsors

Thanks to our new sponsors:

Matt and Shelly Glaesman
Lisa Sullivan
William Sandsmark

We appreciate your support.