Category Archives: Day in the life

Sprinter: ‘Upfitted’

Progress on the VW & Mercedes Benz mash up last week. Josh Sorenson of ‘Sorenson Auto Body’ wrapped up the seat rail bracket fabrication on Tuesday, having it painted and bolted in Wednesday gave me the chance to debut the van to family and guests on Thanksgiving day. Tradition dictates that we load up family and friends for a trip into the Stillwater National Forest to harvest a Christmas tree the day after Thanksgiving. The 4×4 mobil base camp is taking shape.

Next steps involve adjusting the rials forward in the van, adding a stand alone diesel heater, ski storage boxes in the back, bike mounts, re-install the vinyl floor and insulation, sleeping solution for two people, custom lower wall panels to accommodate the needs of the back seat passengers, LED lighting, USB plugs, sub woofer etc…


Sprinter: ‘Upfitting’

Getting prepped on this side of the Atlantic for the auto chop shop Polish seat mafia Mercedes Benz + VW mashup make over… secured a heated enclosed machine shop stall in a local warehouse for next month. It’s all coming together, UPS left a giant roll of automotive Thinsulate on my porch last night, while everything is torn apart for the seat swap, i’ll add the Thinsulate in the walls and ceiling for sound and temperature upgrade.



19 Days

What can we cram into the next 19 days?

Well founded or not, Barb and I feel that a significant threshold will be crossed on April 15th 2015. I have heard myself refer to “life on the other side” of the surgery. The Hemispherectomy planned for Kate carries expectation and anxiety that life will forever be changed for each of us.

imageKate’s life will be radically changed, in several ways, some hopeful some concerning. The best outcome provides a vision of life without seizures and a bright developmental future where Kate is allowed to grow and thrive unimpeded by intractable seizure and sleep deprivation.

This will be the final post on this blog before the surgery, I will update Kate’s Caring Bridge site to share the process with family as it progresses.

Visit Kate’s Site:

Site Name: katecooke

Tonic Cafe

It’s been up and down, Kate is having a tough time with seizures at night, during the day since last week. That makes the exams difficult, she gets terrible anxiety from the sleep deprivation, that makes the MRIs challenging.

She had an MRI early Tuesday morning to map the veins and look at her old blood clot. Anxiety got bad, she had to be put under with anesthesia during MRI.

Wednesday morning she had a functional MRI to map the language and speech centers in her right and left hemispheres. We find out Thursday if the results are usable or if we will need to stay here longer for a more invasive type tests to get at the same answers for language and speech.

We meet with the neurosurgeon at 11 today, then Kate’s neurologist at 2 to review the results of the two scans and talk about next steps.

She’s a tough little person, amazes me still that she can power through the day with all the electrical chaos in her head.

Happy Place: “Tonic Cafe”
We have a favorite restaurant directly across the street from Mayo that serves locally grown food, cooked in real butter! Tonic has been a refuge each day for both of us. French toast, fried eggs, bacon and fresh fruit / vegetable smoothies. Wonderful people running the place, vibrant, loving folks that clearly know the power kindness.

Thanks for checking in, we hope to be flying home on Friday. Love Kate & Chance



Big Sky Intervention

Mission accomplished, thank you Mike and Gale for the vehicle, equipment, financial and emotional support. The trip to Big Sky was the the perfect remedy for the whole family after Barb and Kate being at Mayo Clinic for a week and half.

Being in Big Sky for the weekend, removed from all the trappings of home, surrounded instead by family, friends and the beauty of the Rocky Mountains. We focused our energy on Paetra and Isabelle with the help of the ski team community. The hurt and fear they experienced from Kate and Barb being away faded into the fabric of the weekend. The interweaving of races and family meals created a shared set of goals that brought us back together in a rapid and concise way.

Twelve hours together in a car over three days was a bit much, but it worked. The further we got from home the problems and concerns Paetra and Isabelle had built up faded. Getting out of the familiar environment and breaking the routine of home accelerated their ability to let go of what they had built up inside.

Paetra and Isabelle were forced to leave behind the feelings of sadness and neglect from the weeks prior. The races gave us an opportunity to put them back on center stage, within the context of their friends, and an activity they love.

The weekend felt like it was tailor made for our benefit, the distance from home, the hyper focused setting of the kids races and the community support for Kate made it feel like a three day therapy intervention.

New helmets, boots, speed suites and legitimate race skis gave the big girls a sense of purpose. They embraced the gear and the opportunity to apply what they have learned from their coaches to achieve a new standard of personal performance.

Paetra rose to the challenge on her final slalom run of the weekend, laying down a time that was faster than all but two of the girls in her U12 group. It is notable that she is the youngest and possibly lightest athlete in the group. Lighter than the top girl by 50 to 60 pounds, significant in a gravity sport. Her final run was benefitted by several pep talks from different parents and coaches that took her aside to work on letting go and having fun while she raced. She knew she could ski faster than she had in her first three runs but needed help finding her way. A small but significant personal measure of success was recorded when her final time was faster than her younger sisters. This fact was more significant than beating the majority of the girls in her age group.

Isabelle has become the standard for success, winning all four of her races this weekend by 4 to 5 seconds each while recording times that would put her on the podium in the the next two older age groups.

Isabelle is fiercely competitive, vigilant with details and race preparation. These traits combined with proper gear set her apart from her competition all weekend. Bayard predicted this outcome last year after she did one race on good skis.  I was guardedly proud of how she competed and delivered the beat down, but most proud of how she behaved in the limelight, exhibiting respect and humility beyond her years.

Barb was a superstar all weekend. After an exhaustive week and half living in the epilepsy ward of the Mayo Clinic, watching Kate go through hell, Barb jumped back into family life. Providing love and support for us all with no hesitation from fatigue or depression.

The regiment of Kate’s testing last week was terribly difficult on both of them. The need to record her seizure activity using 24 hour EEG and video monitoring was trying. Kate was not allowed to leave the bed where the video was recording for five days. Add to that, an abrupt 50% reduction of her anti seizure medication. Barb had to watch helplessly as Kate experienced a sequence of seizures each night that grew in frequency to around fifty in an eight hour period. Understanding the importance of these tests only gets you so far… the gap between intellectual understanding and the ability to handle it emotionally is vast.

The EEG results will be the foundation for a surgical recommendation from a team of advisors at the Mayo Clinic. We are living in an odd space for the next week while we wait for the committees review and recommendation. Knowing the implication for the result of the tests but not having the formal conversation about scheduling a surgery or seeking a second opinion…we are in a zone of suspended reality. Not having to face our fears of the surgery and the risks it brings but knowing full well this is the likely path.

More now than ever, I hold Kate a little closer, hug her a little longer, look into her eyes as she speaks with me. I want to hear her and see her with a lasting clarity as she is today, full of wit and humor, a vibrant engaged 5 year old. I am irrationally frightened by what waits on the other side of the phone call with the team at Mayo this Thursday. Knowing intellectually what is best for the “future Kate” I struggle with the potential impact for the surgical path we are on. There is an unsettling permanence to the procedure without the guarantee of a successful outcome.

On the 8th day

Optimistic about about being released tomorrow, December 24th from Kalispell Regional Medical Center. The surgeons looking after me are pleased with the progress but not not completely satisfied that the hole is healing.

Today brought an adjustment to the plan. Rather than testing the progress by clamping the chest tube, I was returned to suction until 2am tomorrow. An X-ray will follow to see if any of the “pneumo” remains.

Staying positive with a steady stream of visitors, I think I’ve done more socializing in the last 8 days than in the prior month.



Not so air tight


The rumpled mess on the left side of this image is my right lung as it looked on Wednesday morning, down to 20% it original volume.

“Spontaneous Pneumothorax” is now part of my vocabulary.

After two days of suction to keep my chest cavity / lung in proper shape, Dr Gunlickson ( surgeon) turned off the suction to test the lungs ability to hold air. After 18 hours my lung has lost a bit of volume, but there is no hole visible on the CT scan.

Christmas is five days away, Isabelle asked if I’ll be home by then… good question at this point.

Air tight

Collapsed lung on Tuesday December 16th.
Chest tube inserted on Wed Dec 17th.
The waiting game takes over two nights in the hospital hooked up to suction to keep my right lung inflated.

Wonderful visits with friends and family that slows down the pace of the holiday season. Great conversations with some favorite people.

Friday December 19th:
We are sorting out a path. The CT scan this morning did not show any holes, that’s good except that the machine I was hooked up to showed that I was not “holding air”. So we have been running gradual tests to see what’s going on.

they unplugged the suction machine that was keeping my lung inflated. X-rays at noon and 2pm to see how the lung was holding up. A few minutes ago they clamped the chest hose off to simulate its removal, we will check with an X-ray at 6pm to see if my lung stays inflated.

It’s like a seventh grade science fair project.