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.

GO!

Discharge day (AKA D-Day) at Primary Children's Medical Center
with Alex and CC, her very awesome nurse-practitioner

 

D-day was on Wednesday, and Katie was able to walk out of Primary Children's Medical Center under her own power. What a great moment! Way to go, Katie!!!

Today the next chapter begins! We still have so many pictures and stories to tell from the past month -- there was just no "down time" during her stay in the hospital. I look forward to documenting them and sharing them here on the blog. I might have to backdate a few entries so the story will make sense in the future, but they will still be new entries to read and enjoy. There are also many new adventures happening now, as Katie learns to resume her life, and builds up her body's stamina to do so. Stay tuned!

(cue up the happy dance music!)

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.

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. ♥