Calmare... with a side of Calamari

Early in June, John and I saw a KSL news story about an electrical device called Calmare that helps chronic pain and re-training the brain's pain signals. Those words -- "retrain the brain" -- immediately got my attention! Primary Children's was a place of miracles for Katie, but they could help very little with her chronic, severe nerve pain. (She was put on a pretty good dose of Gabapentin daily, but Katie felt little relief.)  Katie was coached often that the way out of this intense chronic pain would lie in "retraining her brain", and that this would be much harder than her physical or occupational therapies. Many techniques for coping with chronic pain were taught, but even so, it's been hard for her to face getting back into life with level 9 and 10 pain every day. While so very grateful for the miracles we have received so far, we assumed we would be in for the long haul for a complete recovery for Katie.

So, you can bet my ears perked up when I heard those key words "retrain the brain" from the news and -- wow -- the success stories and the accompanying video of past patients! Amazing. Miraculous! I got pretty emotional when the news story spotlighted its successes with nerve pain, specifically. Could this be a solution for Katie?

The funny thing is, I knew about this machine already. Katie's childhood friend, Alex Lambson, has used it (click here to read his story); he and this machine have been on the news before. There was even another story in 2011, about this device helping a Utah boy who suffered from a nerve disease. I don't know why I didn't connect the dots before. I can only thank Heaven for having KSL do a third story on this device now, just at the perfect time for our daughter. Yet another tender mercy and small miracle in this journey.

So, just what is Calmare Pain Treatment Therapy? Here is a description:

"Calmare Pain Therapy Treatment uses a biophysical rather than a biochemical approach, avoiding the adverse side effects and addictive properties linked to narcotic pain killers. A 'no-pain' message is transmitted to the nerve via disposable surface electrodes applied to the skin in the region of the patient's pain. The perception of pain is cancelled when the no-pain message replaces that of pain, by using the same pathway through the surface electrodes in a non-invasive way. Regardless of pain intensity, a patients's pain can be completely removed for immediate relief."

Hmmm, that's pretty techy. I can tell you it's a big step up from the TENS machine. The Calmare device uses multiple algorithms that scramble... I would encourage you to watch/read the three news stories I've included in this post for a greater understanding. Here they again if you missed the embedded links:

FDA-approved device offers non-drug option for pain (6-7-13)
Medical device gives new life to Utah boy (7-29-11)
Teen hit by lightning trying out new device to deal with pain (12-23-10)

We contacted the doctor interviewed in the story the first chance we got -- his office is located just 10 minutes from our house. Another blessing! It was arranged that Katie would come in the next day and be tested to see if her body would respond to the treatment. Katie was there for 2 hours being tested. Her body did respond to the treatment, and despite the severity of her pain and the complexity of her case, she was deemed a good candidate! Plans were made to have her come in for regular treatments. We were so excited!

As soon as Dad got home from work, we celebrated by taking the family to dinner at Olive Garden, where we ordered... what else? Calamari -- to mark the occasion. (Yeah, that's *squid*, to those that don't know!) Calmare...Calamari...get it?

Don't worry, this is how it looked when we ate it:

...and this is how Katie looked when she tried it:

but she DID try it! Woo-hoo Katie!
And don't worry, she survived the experience:

What a happy day, and we made a great memory together.

So...what's next? Katie must be weaned off the Gabapentin, and that will take all next week. Things might get a little rough. But it will be worth it. Stay tuned!

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!

Count Your Many Blessings...

The first Sunday we were home was a special one. This is just one of those little stories I want Katie to remember...

Katie is doing so much better, but she is definitely still in the 'recovery' stage. She wanted to attend church, but an early 9am start time is still out of reach, physically. Katie was able to slowly get herself ready and put together in time to attend Relief Society with me. Well, almost in time -- we arrived just a couple minutes late -- "hurry" happens at a slower speed than it did before.

I so looked forward to having Katie be among these special women in this meeting -- these dear, neighborhood women that have prayed, fasted, helped, and served Katie through her hard days. Their hearts have gone out to her.  I couldn't wait to show them what their prayers and service had helped bring about.

We ended up coming in just as the opening hymn was being sung. I should clarify -- we walked in -- Katie, WALKING! The hymn? "Count Your Blessings". As we sat down, we heard these words..."count your many blessings, see what God hath done!" What a moment.

The moment didn't end there. The lesson that day was on faithfulness in times of trial -- a subject our little family was learning about right now, in real time. This lesson spoke to Katie: it was as if it were a meeting created just for my daughter, ahead of time. Her special Sunday continued as so many came up after the meeting was over, many with tears in their eyes, hugging her and telling her how happy they were to see her, and to see her so much better... that she was a walking miracle.

She was surrounded by love. It was a very special Sunday. You can bet I was counting my many blessings.

 

picture credit: Willow Tree figurine, "Surrounded by Love"

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.

Ready, Get Set….

We got the news that Katie comes home on Wednesday! These last days will be busy with lots of instruction and training on how to transition from a very successful Primary Children’s environment to home. The goal is to duplicate the therapies, schedules, and hard work – to keep the momentum going without a break.

Katie will finish up her last therapies, get appointments scheduled for the outpatient
versions, and be very busy saying goodbye to doctors, nurses and therapists who have become dear friends during her 2+ week stay here. ”Team Katie” has worked miracles! We are thrilled to be going home, but we are sad to have to say goodbye to some pretty amazing, talented and compassionate, caring people and to Primary Children’s Medical Center itself.  This is a very special place. We were so blessed to be able to bring Katie here!

Our Favorite Scripture

 

Isaiah, chapter 40, especially verses 28-31,
has a very special meaning to our family.

We have watched this scripture come alive this week,
and we are so grateful to our Father in Heaven
for the blessings He has sent to our family.

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. ♥

Flood

Day #1 at Primary Children's Medical Center. 

We arrived Monday -- a beautiful warm Spring morning, to smiles and warm welcomes from nurses and WW, our rehab case manager who had worked with me so patiently and worked so hard to get Katie up there early. Katie's private, corner room was all ready complete with a welcome sign on the wall. Her room is directly behind the nurses' station. If you peek out to the left of her window, you see the giant "U" on the mountain. (That's for the University of Utah for you out-of-towners...) If you had a really strong arm, you could probably hit the U if you threw a rock at it. PCMC is tucked up into the mountains here.

Katie got familiar with her room, while the day nurse gave us parents a tour of the floor and the resources and amenities available to the parents. Among them: a shower, ice/water machines, food and snacks, a resource center, and even a laundry! As we returned, Katie had her first visitor, a therapy dog named Molly, that was making the rounds to the children on the floor. Katie was a little anxious about what lay ahead for her, and a friendly, furry face helped to relax her and get her comfortable.

The next goal was to order some lunch for Katie, and then have Katie and I "move in". We had been told to expect a stay of two weeks.

These two small things took the rest of the afternoon to do. So began "the flood". One after the other, with probably only 5 -10 minutes between them, nurses, doctors and therapists met with us. They introduced themselves, heard Katie's story and her symptoms, and talked about what they would be helping her do. My head was spinning; I couldn't keep track of everyone and everybody. I couldn't take it all in. As you can see in the picture, Katie also started in with therapies. It didn't matter that it was our first day -- no time was going to be wasted.

The day nurse finally came in with a grumpy face and made it all stop for a minute so we could order some food up to the room, saying that Katie hadn't eaten all day! The last doctor/nurse/therapist came and visited with us as 5pm approached. We finally were able to get some food in Katie, unpack our things, and have Alex visit in the evening. It was after dark that I was finally able to eat something down in the cafe downstairs. What a day! Katie and I were exhausted and we both slept very well that night. When I woke up the next morning, it took a minute to remember where I was. I was here, at Primary Children's Medical Center, with my daughter, getting help. I laid there for a while, as Katie slept on. A polite little flood of tears came in the quiet of the morning, as I prayed to my Father in Heaven with a heart full and brimming over with gratitude and relief for this blessing.

A flood of visitors in our room that day. A flood of compassionate and expert help available to us. A flood of emotion. The word of the day is "FLOOD". :-)

Here We Go!

Several hours after writing my last post, the call from Primary Children's FINALLY came! YES!!! (insert happy dance here) After months of waiting, I can't think of a better quote to illustrate how we feel:

We go in on Monday and several doctors and therapists will assess Katie's condition and decide whether or not she will be admitted for the week. Our daughter has a long, hard journey in front of her as we try to get her stronger. But, as Katie said, "anything is better than waiting!", and I agree. We are ready to start this journey. Her mom and dad, Alex, and so many others will be with her every step of the way.

Thanks for all your powerful prayers, help and support -- we are getting in earlier than scheduled  -- and you helped bring that about. Thank you!

Here we go...

picture credit

Every Day is a Good Day

 

Every day is a good day, no matter what.