Journey For Jess

For Now

2010-01-30T13:02:00.001-06:00

For now I will repost this slideshow from the Journey For Jess.

Updates

2010-01-28T18:40:00.000-06:00

Hey everyone. For those of you that typed in www.journeyforjess.com, you may be surprised to be here. For financial reasons we have shut down the Journey For Jess website. Turns out that it is expensive to keep an online store running.

We are happy to tell you that the Journey For Jess raised over $9,000 that was then split between the Epilepsy Foundation and TS Alliance over the last two years. If anyone has continued interest in donating you can do so at their websites, http://www.efmn.org/ and http://www.tsallianceuppermidwest.org/

I will be working on a way to get some of the better pictures into a gallery and will update when I get that done.

Thank you so much for checking in on us, and for all your support.

Jason, Amy and Noah

JFJ Pictures

2009-08-24T22:18:00.001-05:00

Click here to see the best pictures from the Journey For Jess.

http://www.journeyforjess.com/smaller/index.html

Calendar Preview

2009-08-17T20:49:00.002-05:00

Here is a first look at the upcoming calendar. I will have it available for pre-order at www.journeyforjess.com sometime tomorrow night.

Pictures

2009-08-12T20:02:00.003-05:00

Here are what I consider to be the best 25 pictures from the Journey For Jess. 13 horizontal and 12 vertical. I am thinking of doing a calendar of each (vertical and horizontal). I will let you know more once I have more information on the calendars. I am working on updating the store to make the new pictures and calendars available and should have that ready sometime next week.

Hello

2009-08-08T18:08:00.004-05:00

Hello everyone. Sorry it has been so long. It has been a busy week catching up with friends and family and trying to catch up on things that were left undone while we were gone.

I am still sorting through all the pictures trying to put the best few together for the calendar and as thank you's for the sponsors. I hope to have them ready some time this week and will then make them available to be ordered sometime in the next few weeks.

Here are a couple that I like that I don't think I have posted before.

We're Back - New Sponsors - Numbers

2009-08-03T18:54:00.005-05:00

Thanks to our new sponsors:
J Peterson
Scraper family
Iverson family
Johnson family

Here are some numbers I put together:

7800 Miles
1882 Pictures
45 different states license plates we saw (we did see Alaska and Hawaii)
30 + Miles of hiking (more for Jason)
24 times we went swimming
22 Nights at 14 places
14 National Parks and Monuments
10 Nights in Cabins without TV
9 States visited
8 Days over 100 degrees
4 Hours to drive the 60 miles from Grand Teton to Yellowstone (Road Construction)
2 Mornings under 40 degrees

Grand Teton & Yellowstone

2009-08-02T18:16:00.004-05:00

We made it home yesterday, driving all the way from Yellowstone. Here are some of the better pictures from Grand Teton and Yellowstone. We will post more when we have adjusted to being back home.

Kylie's Story

2009-07-31T12:21:00.001-05:00

We have internet connection but can't connect the camera.

Here is Kylie's story as told by her mom, Maria.

All my life, I wanted to be a mom. I imagined holding a sweet baby in my arms, dressing her up in cute clothes, rocking her to sleep. I imagined going on long walks, watching her at dance recitals, watching her play softball, maybe even play 3rd base, like her mom did. I imagined the shopping trips, getting our nails done together and sharing all of my favorite books with her. I imagined the conversations we would have, answering all of the "Why?" questions, the long talks at night and soothing her broken heart over a boy. Little did I know, it would be my heart that was broken.

Kylie Jo Gibbons arrived on September 20th, 2004, the perfect gift to celebrate her parent's 1 year wedding anniversary. Instantly, I fell in love and knew I would do anything for her. 4 short months later, as I snuggled in bed with my sweet girl, I watched as she had her first seizure. Two weeks later, our lives were forever changed as the words "Tuberous Sclerosis" entered our world. I knew then that our lives would never be the same again.

In the beginning, it looked like Kylie would have a mild case. She did not have any tumors in any of her organs, aside from 2 tiny spots in her brain. She had a few white patches of skin and a tiny white patch of hair. But her seizures were relentless. Thousands and thousands of seizures those first few years, many hospital stays and a trip to Detroit to see if she would be a good surgical candidate. We could not imagine putting our girl through such a horrendous brain surgery to stop her seizures, yet when we found out she wasn't even a candidate for surgery, we were devastated and knew we would never see an end to these seizures. She has been on 10 seizure medications, some which have wrecked havoc on her immune system. By age 2, she had 3 ear surgeries, 3 sinus surgeries, iron infusions, long term IV antibiotics, numerous PICC line insertions and finally a port-a-cath placed, and revised, numerous times. We finally had it permanently removed this past April, when it caused a huge infection in her little body.

We met the Beecher family right after Kylie got diagnosed. Amy was holding this sweet, beautiful little girl, whith shocking white hair, in her arms. I remember how Jess's head kept dropping, over and over again. It broke my heart. Over the next few years, everytime Kylie was in the hosptial, Jess would be right behind, or vice versa. We got to be very good friends with Amy and Jason, as well as their extended family. It was obvious how much they loved their sweet girl and how much they loved ours. The girls loved giving each other "moochies" and even just pulling each others hair. Our hearts were broken when Jess lost her battle to the seizure monster but were filled with love when we heard about "Journey for Jess". What an amaving testimony of a parents love for their child.

Kylie is almost 5 and is still the sunshine in our lives. Although most of her organs still remain free of tumors, we did find out she has 26 tubors in her brain and a giant cell astrocytoma, which is a tumor in the ventricle of her brain. She has MRIs every 6 months to monitor it's growth. If it grows, she would most likely have surgery to remove it. How ironic to have a brain surgery that wouldn't even help to stop her seizures. She still has seizures, although is down to a handful a week, thanks to a medication that is not yet approved by the FDA. It has been life changing for us. The hardest part of this disease in the beginning was the seizures. 5 years later, I would have to say the hardest part now is the delays. Whether it be from all of the seizures she had, from where the tubors are in the brain or just from the disease itself, we will never know. Her speech has been improving every day and she is currently speaking in 4-6 word sentences but we are still waiting for those long conversations. She walked at 26 months and does get to dance and play t-ball, with her special ed friends. We are working at potty training, learning to pedal a bike and dressing herself. She does know her alphabet, is counting and drawing pictures. She receives 6 hours a week of combined PT, OT and Speech therapy. She still sleeps in our room at night, as many of the seizures she does have are at night. Every day is a battle but one Kylie fights with a smile on her face.

My dream is for no other parent to ever hear the words "There is NO cure". Please help make this dream become a reality and donate to "Journey for Jess". Thank you for fighting for our children!

2009-07-31T09:22:00.001-05:00

Old Faithful Area

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No connectivity at our cabin.

2009-07-30T09:38:00.001-05:00

No connectivity at our cabin. Limited connectivity in parks. Will update more if possible

Yellowstone

2009-07-29T18:30:00.004-05:00

Yellowstone.

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2009-07-29T18:30:00.003-05:00

Yellowstone.

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2009-07-29T18:30:00.001-05:00

Yellowstone.

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Zion pictures - Utah Olympic Center

2009-07-28T20:56:00.005-05:00

We left Zion this morning headed towards Grand Teton national park. To split up the drive we are staying in Park City, Utah, home of the Winter Olympics. Went to the Olympic park and watched some people practice ski jumping. I included one of the better jumpers in a sequence below.

Wupatki and Zion day 1 pictures.

2009-07-28T11:43:00.005-05:00

Lydia's Story

2009-07-27T12:08:00.000-05:00

Lydia Fiesel was born on October 26, 2002, as a “failure to thrive” baby. She didn’t gain weight at first, and we found out that she had grade 3 reflux and aspiration. Not a big deal. At 5 months old, I saw her first seizure. She was having myoclonic seizures. Her whole body would jerk in spasms anywhere from 30-90 seconds. They seemed to happen most when she would wake up from sleep. So of course, waking her up was the worst part of my day. She continued to lose weight during this time, and we tried Keppra, which didn’t seem to help with the seizures. At 8 months old, she got a feeding tube to help with weight gain. A week after her surgery, her seizures stopped. Her last seizure was on July 18, 2003. She is now taking Topamax for the seizures and is finally on the charts for weight. Her EEGs show that she has “spikes,” potential for seizures, but for now, the storm is calm. Lydia has since been diagnosed with cerebral palsy. She uses a wheelchair and a walker. She is non-verbal, but her smiles warm my heart. She is the light of my life!

Grand Canyon Pictures

2009-07-26T23:28:00.002-05:00

We left the Grand Canyon area this morning and got to Zion this afternoon. One of the more enjoyable drives so far as we got to see Wupatki National Monument, Lake Powell and lots and lots of cliffs and canyons. We enjoyed the pool at the hotel when we got here this afternoon as it was once again 100+ degrees. I think the heat may be following us. Did I mention we got hailed on the other day while driving in northern Arizona? Weird. Also had a few moments of torrential rain. I thought this was the desert?

We hiked to the Weeping Rocks today where water literally comes out of rocks. The guide said the water fell as rain over 4,000 years ago. It was pretty cool.

Well, here are some pictures from the Grand Canyon. Will post today's pictures tomorrow.

Grand Canyon last night and

2009-07-25T15:43:00.001-05:00

Grand Canyon last night and this morning. Historic Route 66 this afternoon. Will try and post more tonight.

Pictures

2009-07-24T09:48:00.001-05:00

I posted a couple of albums of pictures I have taken so far.
http://journeyforjess.jalbum.net/

Caroline Vetter's Story

2009-07-23T22:29:00.000-05:00

On the evening of February 14, 2005 – Valentine’s Day – Caroline had her first seizure. She was just 2 ½ years old. It was a grand-mal seizure that lasted at least 90 minutes. It was such a huge seizure that it left her paralyzed on her left side for weeks. The doctors told us that the seizure was a fluke, that she had probably spiked a high temperature and that it wasn’t likely to happen again. But just a few weeks later, she had another massive seizure. And then a few days after that she had another, and then another. Caroline’s seizures began to snowball out of control. Within just a few months of that initial seizure, she had a seizure so severe that it could not be stopped with any kind of medication. She was flown from Fargo to St. Paul Children’s Hospital by LifeFlight for treatment in their Pediatric Intensive Care Unit and then later their Children’s Epilepsy Unit. This would be the first of many long hospital stays and emergency flights to treat her seizures. As Caroline had more seizures, she developed many different kinds of seizures – from grand-mals, to staring seizures, myoclonic jerks, sub-clinical and complex-partial seizures, and even laughing seizures. As we learned more about seizures, we realized that Caroline had probably been having them since the day she was born.

As the seizures grew worse and more medications, and combinations of medications, were tried to stop the seizures, we started to notice that Caroline began losing skills that she once had had. She began talking less, her mobility lessened, and she stopped growing cognitively. She even stopped eating and drinking. By Christmas of 2005 – less than a year after her first seizure – she had a feeding tube surgically placed, and she was diagnosed with Lennox-Gastaut Syndrome. LGS is a rare, severe type of seizure disorder that is characterized by severe, difficult to control seizures that slowly rob the child of much of their cognitive abilities. This syndrome usually develops in children who have some other kind of brain abnormality. At the time, we thought that it was because of a suspected brain injury that has happened before she was even born. Little did we know at that time that it was so much worse than that.

After Caroline’s LGS diagnosis and several new anti-seizure medications we tried, she went about 6 weeks without a seizure. That would be the last time that Caroline would ever go any length of time without a seizure. Over the next year, the seizures continued relentlessly. No amount of medication would stop them. Her doctors even implanted a type of electronic brain pacemaker called a Vagus Nerve Stimulator in the hopes of slowing the seizures, but they never stopped. Just a year after her LGS diagnosis, Caroline had a bad reaction after a simple tonsillectomy, and she stopped breathing and her heart nearly stopped. Caroline was in a coma and on a ventilator for weeks. She ended up suffering permanent respiratory damage and had a breathing tube (tracheostomy) placed. When she was stable enough to be moved, she was transferred to the Mayo Clinic Children’s Hospital where they rapidly diagnosed the underlying cause of the LGS – leukodystophy, a degenerative neuro-metabolic disease that was causing her brain to literally shrink from the inside out. She was started on a special diet in the hopes of slowing the progression of the disease, and after several months in the hospital, she was sent home with breathing support and full-time home nursing care.

Just a few months later, Caroline started seizing so bad that she was put in a drug-induced coma in the hopes of stopping it. A week later when the doctors tried to bring her out of the coma, the seizures were still there and unstoppable. This time Caroline, just shy of her 5th birthday, was sent home under the care of Hospice. Over the next 7 months, Caroline continued to deteriorate and to have hundreds upon hundreds of seizures every single day and night. She never went more than a few seconds without a seizure. At one point, she was on 10 different anti-seizure medications at once in the hopes of slowing them down. Every anti-seizure medication available to her was tried in vain. She was on many, many more medications to help treat the side effects of the anti-seizure medications and the other effects of the leukodystrophy. She stopped speaking almost completely and lost most of her vision. Eventually after many weeks and months of pain and multi-organ system failure, Caroline Ruby Vetter passed away at the age of 5 ½ on March 26, 2008. She left behind her two older brothers, Andrew and Benjamin, and her little sister, Danielle, and her parents, Tyler and Abigail Vetter.

Caroline was laid to rest next to Jess Beecher. Tyler and Jason Beecher first met as coworkers. Jess and Caroline were only hospitalized together once, and not on the same unit. They always seemed to “take turns” in the hospital – as one came home, the other would be admitted. The two families supported each other throughout their many trials, and Abigail and Amy would become dear friends, and eventually also coworkers.

To get to know Caroline and her vibrant personality, please visit www.caringbridge.org/visit.carolineruby

Thank You

2009-07-23T22:19:00.002-05:00

Thanks to our new sponsors:

Johnson Family
Gist Family
S Cwikla
K Norman
Graning Family
S Nemeth

Yosemite Pictures

2009-07-23T22:13:00.007-05:00

We made it to Arizona today. A little further than we planned but it was a good day in the car. Here are a few more pictures from Yosemite.

Leaving Yosemite Update

2009-07-23T15:04:00.006-05:00

We are on the road again, leaving Yosemite to try and split the 10+ hour drive to the Grand Canyon into two days. It is over 100 degrees again as it has been everyday that we have been in California. It may not be as hot in the mountains, but it's still over 100. Yosemite National Park is amazing. There is so much to do. Especially if you don't mind hiking straight uphill. Here are a few pictures to highlight our time in Yosemite. We will try and post again tonight once we get checked in somewhere. We are looking forward to air conditioning and a pool as our Yosemite lodging had neither.

2009-07-23T11:04:00.001-05:00

Leaving Yosemite, back in the connected world.

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2009-07-22T18:05:00.001-05:00

No internet again. We have had a great day here at Yosemite. We hiked about 4 miles to Vernal Falls with about a thousand other people. Seriously busy.

Yosemite

2009-07-22T10:09:00.003-05:00

Good Morning. We finally found a wireless signals. We also found that we can text from our phones but not send pictures or videos, and while we can make calls they seem to go in and out of range. We also can't check voicemail. Not sure why that would be.

Yosemite is amazing, and busy, and hot. It was over 100 again yesterday. It makes doing things in the afternoon more difficult, so we have tried to do everything in the mornings and late afternoons. We have hiked to the base of Yosemite and Bridalveil Falls, as well as Glacier Point. I also hiked part of the 4 mile trail, but not the whole thing. (It gains about 300o feet in 4 miles)

Having trouble posting pictures so I will try again in a few minutes.

2009-07-21T13:04:00.001-05:00

Sorry it has been awhile since our last post. We are in Yosemite & have limited service. Hot here 102. Went to falls- BEAUTIFUL! Noah says hi! love to all!

2009-07-21T12:54:00.001-05:00

Test post.

Thanks, News, Into The Wild

2009-07-19T21:12:00.002-05:00

First, a big thank you to our new sponsors:
Shannon and Rand Olson
Verlee Sullivan

Second, some thoughts on our progress on achieving our goals. We have still not had the "big break" we are looking for with our story outside the Fargo-Moorhead area. I have submitted our story to the news outlets in the towns we have been going through, but none of them have picked up the story. While this may keep us from achieving our financial goal, we do feel that we have done well in raising awareness. Of course there are 2 weeks left to go and I will continue submitting our story so maybe our luck will change.

Lastly, we are headed into Yosemite National Park tomorrow. There is very, very limited internet and cell phone service, so we are not sure when, or how often we will be able to update. We will do our best to update as much as we can.

Thanks for checking in on us. Here is a picture of Crater Lake, which ws amazing.

The Gist's Story

2009-07-19T11:28:00.002-05:00

Fletcher , age 14, and Elijah, age 7, are loving brothers that happen to have a devastating disease called Tuberous Sclerosis Complex ( TSC) . TSC is an uncommon genetic condition that causes tumors to form in many different organs . They have tumors in their brains , hearts , kidneys , eyes and skin .
These tumors are considered benign , meaning noncancerous . However , that does not mean they don’t cause any problems . The brain lesions have caused both boys to have severe daily uncontrollable seizures . As a result , Elijah has a surgically implanted Vagal Nerve Stimulator (VNS) inserted to help control these daily attacks . Unfortunately , it has had little success . Fletcher also had the VNS but his was explanted due to complications . Fletcher’s seizures are so severe and he injures himself frequently as a result, he had brain surgery to help with these seizures. We knew it wouldn’t be a cure-all, but at best a palliative measure to provide some relief. The surgery he had was a Corpus callosotomy . This actually cuts the nerve fibers between the two hemispheres of the brain. The idea behind this approach is that the seizures can’t / won’t spread as fast to engulf the entire brain, thus making them less severe. Wishful thinking. The seizures found a new pathway, and he still struggles with relentless tonic-clonic (grandmal) seizures every single day. Frequent trips to the emergency room for prolonged seizures lasting over 30 minutes are a pretty common thing in our house. We also use Versed at home to intervene and try and stop the seizures before it gets too bad. Versed is typically an anesthetic sedative used during surgery procedures. However, it is the only medicine that is potent enough to bring some of the seizures to a halt. During these seizures they require oxygen and monitoring by a pulse oximeter machine that measures oxygen saturation rate, heartrate, etc... Needless to say, our house looks like an infirmary with all the medical equipment.

Due to their neurological decline, both Fletcher and Elijah are also feed by a feeding tube. Elijah has significant issues with his kidneys as well and requires catheritzation . Elijah also requires oxygen support while sleeping at all times. Day to day care involved for both of them is time consuming and sometimes overwhelming. The physical and emotional toll is equally hard on them as they face these daily battles head on and difficult on us, the 24/7/365 caregivers.
If I had a genie, and could have one wish, it would be TO FIND A CURE. I can’t snap my fingers and make that magical potion appear. However, the mission of JourneyForJess CAN help the cause. The Beecher’s lost their precious daughter, Jess, to severe seizures. Help them turn their pain into a plan. A plan to raise funds and awareness for research towards a cure for epilepsy and Tuberous Sclerosis. Please join and support JourneyFoJess so that another innocent child does not become a sobering statistic and lose their life to the beast of uncontrolled seizures. Elijah and Fletcher are counting on you.

Signs of Jess

2009-07-18T23:18:00.003-05:00

Today brought a few undeniable signs to us that our sweet Jess is with us on this journey.

The first came as we made our first stop in Crater Lake National Park. It is a breathtaking park and the lake is indescribable. As we climbed to the top of a path, we were surrounded by butterflies. They were everywhere and they wouldn't sit still long enough for Jason to get a pic of them.

Our other sign of our sweet girl, came this evening. We checked into our hotel in Anderson, CA and it was still over 100 degrees at 7:15 so we promptly headed to the pool. There were two young boys in the water. We got in and started our usual game of volleyball with Noah and everywhere we went the boys seem to swim right around us. It was a bit annoying, to be honest. Finally after about 15 minutes, Jason and I headed to the hot tub and Noah asked them to play. They began to play together and Noah asked their names. You guessed it- Noah and Jesse. I am not kidding I almost cried. Noah played better with these two boys than he has with any kids in the pool and he was less afraid of the water. Jason even ended up joining in the fun with the kids. I told the boys' mom and dad our story and how much their children's names meant to us. It was soooo cool.

So we are believers in angels, we are believers in signs.

Thanks sweet Jess for the signs today we love you sweet angel....

2009-07-18T18:18:00.001-05:00

Mt Shasta California

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2009-07-18T15:35:00.001-05:00

Crater Lake. So many butterflies here. Jess is with us.

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2009-07-18T14:33:00.001-05:00

Crater Lake National Park

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Ups and Downs, Highs and Lows

2009-07-17T22:40:00.004-05:00

It's been an up and down day. We started in Sol Duc Hot Springs (Olympic National Park) which is one of the most remote places I have ever visited. Olympic National Park is beautiful, but it takes a lot of time to get from one place to the next. Thursday afternoon we were at Hurricane Ridge in the heart of the mountains. Then off to Sol Duc Hot springs in the forest. Then the highlight of today at Beach 1 on the Ocean. Finish it off with a drive through the rain forest on our way out and we had quite a diverse trip to Olympic National Park.

Leaving Olympic around noon, we realized that we would have to decide between visiting Mt. Raniier or Mt. St. Helens. It was a beautiful day and I wanted to photograph both, so I decided to drive between the two parks thinking I would have views of each. Bad decision. Once we left the Interstate we didn't get a decent view of either mountain for over 40 miles. We decided to head to Mt. St. Helens because it was on the way towards Portland where we would be spending the night. Another bad decision as by the time we got there the light was terrible and I didn't even get 1 picture. (and I didn't find the picture Verlee was looking for. :( Sorry) It then took 3 hours of winding roads to get to Portland at which point we had all been in the car waaaaaayyyyyy too long. Thankfully the hotel I got us for $50 on Hotwire was a BRAND NEW HOLIDAY INN EXPRESS. Very nice hotel, and cheap.

Here are some pictures from yesterday and today:

2009-07-17T13:24:00.001-05:00

The ocean is big.

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2009-07-17T11:21:00.001-05:00

Just got back in range. Here is hurricane ridge from yesterday.

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2009-07-17T11:20:00.001-05:00

Just got back in range. Here is hurricane ridge from yesterday.

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2009-07-16T12:26:00.001-05:00

Waiting for the ferry. We are veerrrryyyy excited.

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Seattle Sunset

2009-07-16T10:35:00.001-05:00

From Glacier to Seattle

2009-07-15T21:27:00.003-05:00

We made it to Seattle. The highlight of the drive was seeing a bald eagle on the river by the road. Very cool. We are off to Olympic National Park tomorrow and the forecast looks good. We will take the ferry from Seattle which will be a first for all of us. We plan on hiking to Hurricane Ridge and Merymere Falls before reaching our destination of Sol Duc Hot Springs, all within Olympic National Park. Here are a couple pictures I got of the bald eagle.

Going to Seattle

2009-07-15T09:38:00.002-05:00

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.

2009-07-14T21:35:00.001-05:00

Lake McDonald

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Reese's Story

2009-07-14T09:51:00.000-05:00

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

2009-07-14T09:47:00.001-05:00

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

2009-07-13T18:56:00.001-05:00

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

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

Update

2009-07-13T15:53:00.003-05:00

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

2009-07-12T17:21:00.002-05:00

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

2009-07-12T07:42:00.005-05:00

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.

2009-07-11T23:30:00.003-05:00

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

WDAY - Journey For Jess

2009-07-11T07:10:00.002-05:00

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

2009-07-10T21:45:00.003-05:00

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

2009-07-10T16:20:00.003-05:00

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.

2009-07-10T12:59:00.001-05:00

teddy roosevelt national park

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New Sponsors, News, Getting Started

2009-07-09T22:33:00.003-05:00

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

2009-07-08T07:47:00.005-05:00

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

2009-07-08T07:39:00.004-05:00

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

2009-07-07T15:29:00.002-05:00

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

2009-07-03T21:24:00.005-05:00

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

2009-07-02T12:51:00.002-05:00

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

2009-07-01T07:12:00.000-05:00

Thanks to our new sponsors:

Matt and Shelly Glaesman
Lisa Sullivan
William Sandsmark

We appreciate your support.

Grand Teton and Yellowstone

2009-06-28T09:35:00.002-05:00

These are a couple of the pictures I took the last time I was at Grand Teton and Yellowstone National Parks. I'm hoping to have similar success on the Journey For Jess this year so I can use the beautiful scenery of the national parks to raise awareness for seizure disorders.

Update

2009-06-24T23:31:00.003-05:00

15 days until the Journey For Jess begins.

All the reservations have been made. The routes have been planned. (click here to view)

I'm still in the process of determining where the best places to photograph at sunrise and sunset are at each of our destinations. I have some ideas but will wait and talk to locals and see for myself when we arrive at each location.

I've been talking to businesses and trying to get in contact with media outlets, and although it hasn't gone great I do feel like we are making progress.

We will be updating periodically the next two weeks and then will update multiple times daily once the Journey For Jess has begun.

Please bookmark us and check back on our progress as we try to raise money and awareness for people affected by seizure disorders.

Thanks for visiting.

New Sponsors

2009-06-22T20:20:00.001-05:00

Thanks to our new sponsors:

Brad and Sara Anderson
Ona May Brunsvold

Jess Marie

2009-06-19T09:18:00.003-05:00

Please remember to check Jess' blog where you can see and share memories of Jess. You can also post your memories by emailing or texting journeyforjess.marie@blogger.com

Held - Part 2

2009-06-18T09:07:00.005-05:00

It's been two years since we said goodbye to Jess. It has been a long 2 years. Good days aren't as good. Bad days are worse. Days that we used to look forward to are now faced with trepidation. Birthdays, holidays and celebrations are all reminders that Jess is gone.

A couple of weeks ago I wrote about the song Held, written by Christa Wells and performed by Natalie Grant. I wrote about how the song, a subsequent conversation with Christa Wells and a sermon by Pastor Cory helped me to have a revelation of sorts. (Click here to read about it in the first Held post)

I wrote Christa to ask if she had a video of her singing Held that I could post on this blog. She responded that she had just recently started on the singing part of her singer/songwriter career and that she didn't have anything of her singing Held yet. Then she sent me another email that included this:

Christa has such a beautiful voice, and we feel so honored that she would do this "for Jess". Please visit her at www.christawells.net and check out her new album. I especially like the songs 'weightless', 'on the mountain' and 'a thousand things'.

As always, thanks for checking in on us. Especially today, Jess' second Angel day.

We miss you Jess. We love you. And we can't wait to see you again.

New Sponsors

2009-06-16T20:00:00.002-05:00

I wanted to take a minute to thank our newest sponsors:

Lorrin and Linda Beecher
Craig and Ann Anderson
Larry and Linda Manges

Thank you so much for your support.

T-Shirt Order

2009-06-08T21:56:00.007-05:00

We are going to be ordering new T-Shirts on Friday June, 12th. They will be white with JFJ in purple on the front and www.journeyforjess.com in black and purple on the back as seen below. The shirt will be an Anvil Dri Release T-Shirt which is a high performance tagless poly/cotton blend. They will be much more comfortable in the summer sun than our current, black, heavy cotton JFJ shirts. They are $20 and available in adult sizes only. We will not be ordering any extras so if you want one please email me at jason@journeyforjess.com by Thursday night, June 11th.

Donating - If You Feel Moved To Do So

2009-06-08T21:02:00.004-05:00

Thank you for visiting us and following the Journey For Jess.

If you are considering donating, there are a number of ways to do so.

To donate to the Journey For Jess please visit: www.journeyforjess.com/donate

To donate to the Epilepsy Foundation please visit: www.epilepsyfoundation.org/howtohelp/

To donate to the Tuberous Sclerosis Alliance please visit:
https://ecommunity.tsalliance.org/SSLPage.aspx?pid=184&srcid=194

This is what it means - to be "Held"

2009-06-01T09:06:00.003-05:00

Lyrics to the song Held written by Christa Wells performed by Natalie Grant

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair
[Chorus]
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

After Jess died, we were given a Natalie Grant CD with the song “Held” on it. Along with “Homesick” by Mercy Me, “Grace” by Michael W Smith, “Untitled Hymn” by Chris Rice and “You Raise Me Up” and “To Where You Are” by Josh Groban, “Held” became one of the songs that gave us the most comfort in those dark days. I tend to be a bit obsessive, so to say that I listened to the song hundreds of times is not an exaggeration. In time I began to focus my obsession on a single phrase from the song:

To think that providence
Would take a child from his mother
While she prays, is appalling

What did it mean? Was it appalling that God would take a child from their mother while she prays, or that we would think that God chose to do so? I obsessed over the question, I had to know what it meant. I researched the song and found that it was written by Christa Wells a singer/songwriter from North Carolina. It turns out that she has a website, www.christawells.net, and on it there was an email address. So I emailed her and got the following response:

Funny that you ask about that particular line, since it was that line (among others) that kept the song from being cut by other artists sooner. Natalie was the first one not to ask us to rewrite! It is a tough lyric, though, and I do understand that.

I write without a lot of self-censorship--in other words, it's important to me when I write to say what is honest, rather than what is pleasant. For better or worse. When I wrote that verse, considering my dear friend who was/is one of the strongest women of faith I've ever encountered and who had suffered so much loss, I could only think that this is true for us as we observe: it seems to us appalling that a sovereign, loving God could "do that" to "someone like that." I do believe fervently in God's sovereignty, but I also believe there are things that he --as with Job--allows rather than initiates. It is indeed appalling (to our human minds) to think He would choose or allow a child to be taken from his mother, while she's on her knees begging him not to.

Of course, that's not the end of the story, as you are more aware than I. The great "but this is what it means" MUST follow!

Finally, the answer I had been looking for. So why did I not feel satisfied?

Because I now realized that the question I had was not really with the song or with the lyrics. It is about me and how I am dealing with Jess’ death. We prayed. We prayed often and hard. And there was no miracle for us. But some people do get their miracles. Did they pray harder or better than we did? I want someone to blame, so the emotional part of me blames God. How could he let this happen? But then there is another part of me. A seemingly smaller part that says you can’t really believe that God wanted Jess to die. So the real question is how do I resolve that inner conflict between the two?

I think as Christians we want to believe that God has a plan and that everything that happens is part of God’s plan. But as Pastor Corey told us at Jess’ funeral, Jess dying was not God’s plan. There is evil, and pain, and suffering in this world.

But why? Why does there have to be pain and suffering and death in a world created by a loving God?

I’m not sure I knew the answer until last Sunday in church as I listened to Pastor Corey reminding us that we do not belong in this world.

And then something clicked. I think I understand.

We do not belong to this world.

This life, this world is just the beginning of our Journey.

And the best is yet to come.

See you soon Jess. (but not soon enough)

We love you.

Tuberous Sclerosis Walk

2009-05-29T09:13:00.001-05:00

The annual Step Forward to Cure TSC walkathon is scheduled for May 30, 2009 at Lake Phalen Pavilion in St. Paul. Thank you for all the support in the past and we look forward to another exciting year raising funds to support the goal: a cure for TSC!! Click on the TSA image to learn more.

Corporate Sponsors

2009-05-26T07:59:00.003-05:00

Just wanted to take a minute to thank all our corporate sponsors to date.

Corwin Chrysler-Dodge
All-Brite Signs
Don Smith Photography
Pediatric Therapy Partners
Eide Bailey - Fargo
Grace Lutheran Church
State Bank & Trust (Pay it forward)

FAQ

2009-05-20T11:21:00.001-05:00

One of the most common questions people we know ask us about the Journey For Jess is if we are all going. Yes, we are all going. Initially we thought that Noah would go with us for part of it and then stay with his grandparents the rest of the time, but once we started trying to work out the logistics of transporting him back and forth we realized that it would be better for him to be with us for the whole trip. This has caused us to re-think some of our lodging options as we were planning to have a couple of nights sleeping in the back of the Journey which isn’t going to work now that there are 3 of us. We also needed to find a few places that are more Noah friendly and that will allow us to shower every few days and maybe do some laundry. So depending on the prevalence of bears and other wild animals we have updated some of our accommodations to include walls. (and bathrooms and swimming pools, although that has nothing to do with wild animals) We are sticking with the original budget amounts, which are based on sales of merchandise, so that Amy and I are covering any additional expenses incurred from upgraded lodging. As a reminder, all sponsorship money is being split between the charities. Only money from the sale of merchandise helps pay for the costs of the trip.

Journey For Jess brochure

2009-05-13T12:42:00.011-05:00

Here is the inside of the brochure we had made for the Journey For Jess. It is a trifold flyer that details the reason for the Journey For Jess and what we are trying to accomplish. On the back is a form that can be filled out and mailed in for people who are interested in donating. We also have 5 page full size clear cover folders that we are using to give to businesses to try and get them to donate.

We need your help. If you know of businesses or individuals that you think would be willing to sponsor us please let us know. We can either get you the brochures and you can talk to them, or you can get us their information and we can either contact them or mail them the information.

We will be using this blog and the http://www.journeyforjess.com/ website to provide frequent updates while we are on our Journey (which is less than 2 months away).

We feel that our best oppurtunity to raise money for the Epilepsy Foundation and TS Alliance will be while we are on the road. We have contacted numerous media outlets who will be running stories about the Journey For Jess and we hope to create some 'grassroots' type buzz by having friends tell friends and having everyone checking the blog and website for updates. The more people we get to follow us on our Journey the greater the difference we can make for people affected by seizure related disorders.

Ready To Go

2009-05-12T15:10:00.002-05:00

All of my testing is complete and I am ready to tell people about my new blog. I wanted something that would be easier to update than the website and my photo blog are. With Blogger, I can post pictures and video through either my cell phone or by email. It is unbelievably customizable and super easy to use.

As soon as I figure out how to post a picture of a .pdf, I will add a post showing you the Journey For Jess brochure and asking for your help raising money.

Test posting photo by email submission.

2009-05-12T13:32:00.000-05:00

I am trying to post a photo through an email submission. The text emails work so we will see if the photo works.

“LEGAL NOTICE
Unless expressly stated otherwise, this message is confidential and may be privileged. It is intended for the addressee(s) only. Access to this e-mail by anyone else is unauthorized. If you are not an addressee, any disclosure or copying of the contents of this e-mail or any action taken (or not taken) in reliance on it is unauthorized and may be unlawful. If you are not an addressee, please inform the sender immediately.”

Newsweek Article

2009-05-11T20:16:00.005-05:00

Dear Friends,

I don’t know if you saw the April 20th issue of Newsweek magazine, but the cover story was “The Mystery Of Epilepsy – Why We Must Find A Cure”. While I’m not exactly sure what the cover picture is, it could just as easily have been a picture of Jess or any of the other estimated 50,000 people who die each year from seizures and related causes. They are the reason why we must find a cure.

More than 3 million Americans are affected by epilepsy, more than number affected by multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined yet funding for epilepsy research averages only $35 a patient. (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis). As the author, Jon Meacham, states, “It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern.”

The reason that epilepsy research funding is so low seems to be based on public perception. People think that epilepsy is not a deadly disease. We know different. People think that epilepsy can be managed through drug therapy, and while that is true for about 2/3 of people diagnosed with epilepsy it is not true for over 1 million people. Individuals with epilepsy may not have daily or even monthly seizures, but the fear of a seizure is constant. Epilepsy is not always visible to the public, but as we saw with John Travolta’s son Jett, a seizure in the midst of an everyday activity like taking a shower can be deadly.

Jess’ life and death showed us the reality of epilepsy. There were good days and bad days. We were always going down on one medication and up on another, following the charts made by Dr. Ritter. There were surgeries, hospitalizations, MRI’s and ECG’s. There was hope and despair. In the end she was taken from us by a seizure in her sleep that kept her brain deprived of oxygen for a prolonged period of time.

That is why our goal with the Journey For Jess is to raise money and awareness for people affected by seizure disorders. So that we can fulfill the Epilepsy Foundations motto and make a world where there is “not another moment lost to seizures”.

To see more of the article please go to http://www.newsweek.com/id/193586

The picture that got me interested in photography.

2009-05-10T19:43:00.004-05:00

Brother Wolf, by Jim Brandenburg.

If you like pictures of Minnesota, it's beauty and it's wildlife, Jim Brandenburg is your man. His photography, and this picture in particular, got me thinking about taking pictures.

To see more, please visit his website at www.jimbrandenburg.com

Picture practice.

2009-05-10T19:27:00.012-05:00

I'm trying to learn how to post pictures.
This was taken near Lake Crystal, MN.

New Blog

2009-05-08T22:00:00.003-05:00

Well I am going to try this out. Due to the ease of use of Blogger I am sure that I will use it more than aminus3 or the Yahoo one. Plus I can post pictures and videos from either email or my phone. That will make it much easier to update while we are on the road during the Journey For Jess.