Saturday, January 30, 2010
Thursday, January 28, 2010
Updates
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
Monday, August 24, 2009
JFJ Pictures
http://www.journeyforjess.com/smaller/index.html
Monday, August 17, 2009
Calendar Preview
Wednesday, August 12, 2009
Pictures
Saturday, August 8, 2009
Hello
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.
Monday, August 3, 2009
We're Back - New Sponsors - Numbers
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
Sunday, August 2, 2009
Grand Teton & Yellowstone
Friday, July 31, 2009
Kylie's Story
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!
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Thursday, July 30, 2009
No connectivity at our cabin.
Wednesday, July 29, 2009
Yellowstone
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To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.
Note: To play video messages sent to email, QuickTime� 6.5 or higher is required.
This message was sent using the Picture and Video Messaging service from Verizon Wireless!
To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.
Note: To play video messages sent to email, QuickTime� 6.5 or higher is required.
This message was sent using the Picture and Video Messaging service from Verizon Wireless!
To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.
Note: To play video messages sent to email, QuickTime� 6.5 or higher is required.
Tuesday, July 28, 2009
Zion pictures - Utah Olympic Center
Monday, July 27, 2009
Lydia's Story
Sunday, July 26, 2009
Grand Canyon Pictures
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
Friday, July 24, 2009
Pictures
http://journeyforjess.jalbum.net/