Friday, July 31, 2009

Kylie's Story

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!

Old Faithful Area

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Thursday, July 30, 2009

No connectivity at our cabin.

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

Wednesday, July 29, 2009

Yellowstone

Yellowstone.

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Yellowstone.

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Yellowstone.

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Tuesday, July 28, 2009

Zion pictures - Utah Olympic Center

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.




Monday, July 27, 2009

Lydia's Story

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!

Sunday, July 26, 2009

Grand Canyon Pictures

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.


Saturday, July 25, 2009

Grand Canyon last night and

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

Friday, July 24, 2009

Pictures

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

Thursday, July 23, 2009

Caroline Vetter's Story

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

Thanks to our new sponsors:

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

Yosemite Pictures

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

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.


Leaving Yosemite, back in the connected world.

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Wednesday, July 22, 2009

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

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.

Tuesday, July 21, 2009

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!
Test post.

Sunday, July 19, 2009

Thanks, News, Into The Wild

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

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.

Saturday, July 18, 2009

Signs of Jess

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....

Mt Shasta California

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

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Crater Lake National Park

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Friday, July 17, 2009

Ups and Downs, Highs and Lows

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:





The ocean is big.

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

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

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Thursday, July 16, 2009

Waiting for the ferry. We are veerrrryyyy excited.

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Seattle Sunset

Wednesday, July 15, 2009

From Glacier to Seattle

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

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.

Tuesday, July 14, 2009

videoLake 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.

Monday, July 13, 2009

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

Sunday, July 12, 2009

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.

Saturday, July 11, 2009

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.

Friday, July 10, 2009

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.