Calmare Treatments Begin

With the green light from Dr. B to start treatments for Katie on the Calmare Device, the next thing to do was to start weaning her off of the Gabapentin medication. We called Primary Children's, and under the direction of CC, Katie's nurse-practitioner, we did this safely and as quickly as we could.  Even so, it took about a full week to bring her down from 1300 mg a day to zero.

Although Katie didn't feel like the Gabapentin was doing any good at all, we found out at the end of the week, that um, yes, it actually was helping to dampen the nerve pain a little! Her nerve pain increased once she was completely off of it, and it made for a pretty rough weekend for her. :-( Dr. B explained that the medication would get in the way of the device doing its best work, so we didn't want any "dampening" of the nerves happening. Katie was on board 100%, even though it cost her a couple of very painful days.

It's now Thursday as I write this, and Katie has had 4 treatments out of her 10 that are scheduled. (Her case is very severe and complex, and there is a possibility that more than 10 visits will be needed.) Here's how Katie's visits go:

Katie arrives and fills out a log showing where her pain is, and what level it's at. She then has her leads connected to her "sweet spots". Sweet spots are the most effective places Dr. B has identified to put the electrical leads that help her specific pain areas. In the picture, you can see her feet's "sweet spots". :-) When they're all done, she's pretty wired up. (Lots of pain areas.) :-(

The device is turned on, and Katie says it feels "buzzy"; it's not painful at all. She can feel when the algorithms change up, which is pretty often. Her treatments last anywhere from 45 minutes to an hour. Her pain levels decrease significantly, if not disappear, during the treatment. After the device is off, Dr. B checks with Katie and measures where her pain levels are at. Since the very first visit, it is always consistently much lower, and we've seen this relief last after going home -- Monday's pain relief lasted an hour, and now we are up to 2-4 hours!

Her "homework" is to log how long the pain relief lasts at home. She brings it with her to the next appointment. And, it all begins again! Katie goes every day for the next 2 weeks (more if needed). The main goal here is to re-teach the brain that everything is OK, and it's no longer necessary to recognize the pain sensations. So, Katie is taking it pretty easy for the next couple of weeks. We have canceled physical therapy appointments, work, and other events that would stress Katie's system. Gotta baby that brain. Well, she picked a great time with it being 100 degrees outside this week! Doctor says stay inside and be cool and calm and don't stress. I know -- rough life, huh? ;-) Where can I get a prescription for that?!

Her pain levels at the beginning of the week were measured at consistent 8's, 9's and 10's before they turned the device on. Today, before her appointment, her legs were at a 2, and her arms were at a 4. WHAT?! INCREDIBLE! Things are going VERY well! Keep us in your thoughts and prayers that this wonderful progress will continue, and that the pain relief for our Katie can even be permanent!

And....join me in a happy dance, will you?

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"

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. ♥

Moving Forward

We felt pretty devastated when we got the news that the insurance denied Katie's case. The official reason they gave was they "didn't see that it would do any good." (!?) The head doctor of the pediatric rehabilitation argued with them, to no avail. WW, the rehab case manager, was on the phone with me a lot that day, helping me look at all options for Katie, the costs, and answering questions. Her compassion, patience, and taking time with me was a balm of Gilead on a very painful day. In fact, looking back, all those I called that day were angels to me, full of helpful insights, and tender feelings for our family and sorrow for another setback. Mary, Kelly, Mom -- thank you.

We have had heavy decisions to make in the past couple of days. We are following the old saying, "Pray as though no work will help, work as though no prayer will help." We have spent much time in prayer, seeking comfort, but also clarification on what to do now.  We have spent time researching and discussing remaining treatment options available to Katie, all the while, 'listening' with our hearts and souls on what feels right and praying for confirmation...

We have made that decision. We are moving forward. We are taking Katie up to Primary Children's Monday morning.

Katie must have care. There is too much suffering at this point, and her health is deteriorating. Getting her better nerve pain medications and teaching her ways to deal with this pain has to happen. Getting her body stronger is key to any kind of recovery. I am completely convinced that this physical therapy program is the best care available to my daughter. I am also convinced that now is the time that she must have it. I feel peace about these things. I have no idea what's coming next. I don't know what the next few weeks will bring.

We will move forward with faith.

A Quick Update

Unfortunately, we weren't able to get Katie to the U before Spring Break, which was all last week. We were able to speak with a manager at the Rehab department at the U before the break, and communicated Katie's needs and the urgency we feel to get her in to someone that has the clout to do something about it. There is a more urgent need: lately, her nerve pain has worsened and spread to the point where it is hard to endure the day. Also, a new symptom of not being able to breathe has set in. We think it's acid reflux related, but these episodes that just come and go are frightening -- not just for Katie but for her parents! Katie's never had acid reflux in her life, and we've only seen this in the past couple of weeks. Weird. It's a combination of things coming up, and her throat constricting completely closed. No air can pass through. We are sticking pretty close to our girl these days, as you can imagine.

Her official appointment with Dr. S-N has been moved up to early May (from June), which is a blessing we'll be thankful for, but we're hopeful that our phone call last week will move the needle on getting Katie seen even sooner than that. We feel very good about the program they have outlined for her. We just have to get her in and get it started!

She is hanging in there, thanks to your prayers and well-wishes and sweet gestures. We are getting pretty good at distractions; and Katie's sweetheart, Alex, comes often to cheer her up. Hearing Katie laughing with him is sweet music to our ears. He's awesome. How lucky are we to have the Gospel and all of you pulling for her? We are blessed. Please keep up the prayers and good thoughts. We are almost there.

A Prayer Request

Dear Family and Friends,

We would like to ask you to join our family in praying for our daughter, Katie. The good news to report is that a special and specific rehab doctor at Primary Children's Hospital and physical therapy plan at the University of Utah are being put into place to help Katie. This will help her get stronger and bring some relief from the intense pain and severe symptoms she faces every day. We are so grateful for this blessing and look forward to its beginning. The bad news is just that -- beginning it! Although we are on a high priority waiting list for this rehab doctor (whose first available calendar appointment was in June), we have not been able to get in to see her. This doctor will be leaving and unavailable for at least 2 weeks (or more?) in April; which means Katie would have to wait, in her current state, until the doctor was back to even hope to be called in, get an appointment and begin medical treatment.

We are praying for a miracle that Katie will be called in before this doctor leaves, which is now just a few short days away. If it's not meant to be, we are praying that our Katie will be given the strength, sustaining and faith she will need to make it through the extra weeks she will be asked to endure. A hope that the Lord could lift the full weight of this burden from her shoulders during that time.

We love you and thank you with our whole hearts for the prayers, love, kindness, support and real help that you have given our family during this hard time. Katie has been so touched by these Christ-like gestures from you. Our hearts also hurt with the knowledge of many others we love are bearing heavy burdens as well. You are in our thoughts and prayers every day.

Thanks again for all you do!

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