Life Back at Home

Katie's main goal, her "mantra", while at Primary Children's Medical Center was "I Want My Life Back". When she arrived at PCMC, her body was in a broken state due to her Dysautonomia symptoms and her terrible nerve pain and overloaded nervous system. I remember the day she was admitted -- her hands were curled in pain, her body slumped in the wheelchair and her head was down as she tried to cope with the overwhelming sounds, smells and light of the entrance to the hospital. In those days, she truly was getting through one day at a time, and many days were one hour or one moment at a time.

Katie chanted this mantra as she went through the hard days of a brilliant, but intense, multi-faceted therapy program there at PCMC. She focused only on this thought as she pushed through incredible pain and did what her therapists asked her to do. Her determination and this therapy program gave her her life back! Even her Dysautonomia symptoms diminished. As she got stronger, her whole system did better. For more information on the link between physical activity and Dysautonomia, click here.

Now back home, she is stronger -- out of the wheelchair, out of bed, and is pursuing life. She still has a way to go -- her stamina still needs to be built up, and the level 9-10 nerve pain interferes with everything. It has definitely slowed down her physical recovery, but when you look at where she was In April, her recovery is still a miracle.

In just one month, Katie has attended multiple outpatient therapies (this will continue for some time) and follow-up doctor appointments, as we form an outpatient version of "Team Katie". She has met with advisors and registered at Utah Valley University for Fall 2013 classes, and is returning slowly to her editing part time job. She also tries to exercise to increase her stamina and is following a daily schedule. (Well, most days..) ;-)  Next up, learning how to drive again and buying a car! On the fun side, her Dad and I have been absolutely thrilled to be able to BE with her again. We marvel that we can go out to dinner together, and go shopping together! My favorite shopping trip so far was when we went shoe shopping for Katie. How great was it to buy shoes for my formerly-wheelchair-bound girl?! They are short trips out, but they are trips out!!! Yay!!! Katie is also enjoying going out and doing fun things with Alex. Day to day life is much sweeter for her now.

She has done all of this with her nerve pain, which adds a sour note to life's sweetness. But it also makes her continue to be my hero. She is amazing, she has a great attitude, and her Dad and I couldn't be more proud of our girl. We thank our Father in Heaven for his sweet blessings to our family. We thank you for your continued prayers for Katie. They continue to make a difference in her every-days.

The journey continues!

Best. Mother's Day Present. Ever.

Katie had a little surprise up her sleeve at the end of the week. As fate would have it, we (Mom, Dad and Alex) all came to PCMC to see Katie in separate cars that day. She greeted each of us as we arrived standing by herself, and then WALKING toward us without help! There were tears of joy from parents, and big huge bear hugs all around. We were all on a "rocky mountain high" for the rest of that day! The therapists thought it would take weeks, not days to see her walk. Amazing therapists and nurses, hard work, great attitude, faith, and prayers = miracles. For all those that have been praying and fasting with us -- wearying the Lord on Katie's behalf -- these pictures are for you.

I know it's a few days early, but I'm counting it as the Best. Mother's Day Present. Ever. No gift will ever top this.

Here are a few pictures of Dad's moment. So sweet. Enjoy.

A Super First Week

Katie was able to adapt to the new set up and got into a routine and followed a schedule for the rest of her first week. It was a pretty eventful week that, frankly, took our breath away!

We continue to drive up every day to be with her in the evenings -- her "reward", as she calls it, for working so hard during the day. The daily driving up and back, the parent meetings with doctors/therapists/nurses and keeping minimal routines going at home are keeping me pretty busy -- way busier than I thought I'd be during this time. I had looked forward to daily updates on this blog, and catching up on projects with hours and hours to myself. Hah. Not happening. ;-)

Katie is also busy -- she goes to 5-6 therapies all day -- her day begins at 8am and is finally done around 4pm. That's a full-time schedule for anyone, but we are talking a day full of physical therapies! That's a *really* full day; and she's doing it all with nerve pain. Medicines to help have been given to her, but they take anywhere up to 6 weeks to build up in the body and give real relief you can feel. They are are also "helping" Katie's pain by desensitizing the most painful areas; that means pressing down on palms and standing full-soled on feet. This works, but it's hard to tell your body, "hurting more will help me hurt less". She has accomplished so much, but she confides to me that she often feels very sick and dizzy while doing these therapies. Dysautonomia is always in the background, ever with her. That makes her accomplishments even more amazing to me.  My pink zebra is a superhero!

The doctors, nurses and therapists are all so impressed with Katie, and love her attitude and good heart.

Here are some of the things that happened during Katie's first week:

• Short term and long term goals set.
• Katie was expected to make her own daily schedule, get herself dressed and order her own meals. Yay for independence!
• Gave Katie a "toolbox" of distraction techniques to deal with intense pain.
• Lots of desensitization :-(
• Using hands to pick up game pieces and practice fine motor skills with fun things like art projects and painting nails :-)
• Practicing writing: her handwriting got better and better each day.
• Walked on a very slow treadmill increasing time from 2 minutes to 5 minutes.
• Self propelled in wheelchair, then walked with a walker.
• Practiced balance by standing on a half-round ball, and hit foam balls with a foam bat. Other kids in therapy encouraged Katie to try and bean various therapists in the room. LOL!
• Discovered music therapy is her favorite time of the 'work' day.
• Tried acupuncture (!!!) and biofeedback this week and learned some relaxation techniques.
• Vitamin D was discovered to be low, D supplements added to medications.

We are so proud of Katie; blown away by all that she has been able to accomplish! Our little family feels so very blessed. Blessed by a loving, tender and merciful Father in Heaven.

Blessed to be up here and have her be cared for in this wonderful place. Blessed by all the prayers, fasting, and sweet thoughts that have been sent our way. I know in my heart that Katie could not have endured the time we had to wait to get her here, or accomplished so much this week, without the strengthening and sustaining of all your prayers. Faith and prayers are not just pretty words; they have a very real power. Thank you. ♥

Every Day is a Good Day

 

Every day is a good day, no matter what.

Her Story, Part Two

Fresh off her triumph of graduation, and accomplishing all the goals she had set, Katie enjoyed her first summer after high school. After about a month, Katie's health began to really nosedive. She began to have many Dysautonomia symptoms we had not seen before, and at a new level. The hotter it got outside, the worse she did. Nerve pain, chest pains, difficultly swallowing, eating, and eventually an inability to stand or walk at all without blacking out. She was now forced to be in a wheelchair. From time to time, her symptoms would be alarming enough to take us to the ER. There were terribly hard days during this summer. Her Dad and I became caregivers, helping Katie through each day. Despite these setbacks, she continued to keep having a life. She worked part time at a job she loved, and pushed through the bad days. She looked forward to fun dates with her sweetheart, who has loved her through think and thin.  Her parents continued fighting insurance battles and tried to get Katie the medical help she so needed. We were finally connected to the Faint and Fall Clinic at the University of Utah, and glory be! There were doctors there that knew what Dysautonomia was! What a relief! But it also meant more tests, and appointments...

Months passed. As a family we pulled together, trying to make each day the best it could be. During a train trip north to visit family during Christmas break, we were stranded on a platform in sub-freezing temperatures. The train had broken down and ended up being almost an hour late. This exposure was poison to Katie's body, and her Dysautonomia symptoms flared to an unbearable level. Each day since has been terrible for her. Katie is in great pain all the time, and suffice it to say that every symptom she experiences (and there are many) is intense and very severe now. She needs our help in completing even the simplest things. Insurance problems continued until just recently. Despite new appointments, we have not found much relief or help for her medically. We are hoping things will soon change.

I know better than anyone else how hard each day is for her. Incredibly, Katie continues to be upbeat and happy and look for the joy in each day, and the blessings in her life. I ask myself if I could be like that carrying all that she does...the answer is no.

She is my hero.

Why a Zebra? .... and um, Pink?

This is a blog about Katie and her health stuff. So...what's up with the zebra?

And one that's pink?!

During one of Katie's ER visits, the doctor visited with me about Katie's condition.  Dr. B explained that doctors, and even specialists, are trained to look for the common and known medical conditions. They see a set of symptoms and think, "oh that looks like " _____".  And most of the time, they're right, and the patients are treated successfully. He explained it like this: "When they hear hoofbeats, they automatically think "horse."

Dr. B continued: "But sometimes hoofbeats can mean "zebra" -- and your daughter is a zebra. Your daughter needs doctors who, when they hear hoofbeats, will think zebra." That conversation and Dr. B's referrals led us to the University of Utah, where Katie is currently being treated at the Faint and Fall Clinic. They know about Dysautonomia  and treatment options for our girl there -- and what a relief that is! That has not always been the case in her medical journey, as it is with most Dysautonomia patients. But that's a post for another time.

Katie and I have kind of adopted the zebra as our mascot in all this. Now you know why. I even bought her a zebra shirt to wear to some of her doctor visits! And...why a pink zebra?

Well, if you know Katie, her nature is upbeat, happy and fun. A Type 1, if you know what that means. So, if our girl is a zebra, that zebra would have fun pink stripes! Katie is the Pink Zebra. Hence the name of the blog. Make no mistake -- Katie is going through a heartbreaking, incredibly painful, hard time right now. She takes one day at a time, sometimes one moment at a time. I am sure we will be updating you on some very hard days in the future. In spite of all that, we picked a fun, happy look to the blog and a fun name to honor Katie; and for the way she faces each day with courage and grace and a happy attitude. We are so proud of her.

We so appreciate the love, support, concern, TLC, and prayers we have received from many of you. We are so blessed.