Welcome Home

Home, sweet, home -- at last! After almost three weeks at PCMC, Katie is home again. As if it weren't a happy enough day, as we drove up to the house, we were greeted with welcome home signs and balloons.

Heartfelt thank you's go out to Katie's dear friend, Meg, for a completely awesome sign (complete with a pink zebra "Katie" -- so cool!) and for Aunt Jen, who decorated house and mailbox with cheery, happy balloons.

Katie was so touched, and was reminded again that she is not making this journey alone -- there are so many that continue to support her -- prayers, help and comfort in the hard days, and cheering, hugs and (gentle) high-fives in the happy days!

This was definitely a happy day.

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. ♥

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.