SSCD The Beginning of the End

It is a dream to finally write, we see a beginning to an end.

After years of suffering and misdiagnosis, Derek’s diagnosis of  SSCD has forever changed us. It took Derek to endure a pioneering journey across country, lose his hearing in his left ear, multiple surgeries he should have never had, all while fighting horrific symptoms to finally have answers that are actually beginning to produce amazing results.

SSCD is NOT an easy surgery.  This is not the type of surgery where 6-8 weeks you are back to work. Each patient is different and recovery varies. Up to 12 -18 months even. The recovery  is like taking 3 steps forward, 2 backwards every day. But progress IS being made.

Each passing week, like peeling an onion layer by layer, we are seeing more and more positive changes. Every expectation Dr. Gopen and Dr. Yang told us, is happening just like they said it would.

There is always the chance he may have some residual problems from all the damage the rest of his life. But Derek and I don’t go there. The outcome will be, exactly what God wants it to be. Anything will be better than what Derek has had to endure.

You can chose to not believe in permanent damage.

We chose to never stop believing in miracles.

7 weeks out from surgery, the first month was brutal. His left side was screaming at him. The pressure was awful. The right side was healing from a big surgery.

It was a long 6 weeks.

But I’m THRILLED to share with you the things he is beginning to notice. NOTHING has ever touched the horrific symptoms like this surgery has.

Derek is making short videos to his surgeons and to educate the world what he is experiencing. To shed light on this disabling condition. Sharing of his miraculous changes. They will be posted on Sarah Hein the Pioneer Facebook page. Hear from his own voice instead of mine. It is unbelievable. His left side is of course still miserable. However, he is really beginning to notice the difference on the right side, where he had surgery.

Walking is really important for SSCD patients after surgery and throughout recovery. We try to take small hikes everyday. When Derek’s heart rate goes up, he suffers horribly. The noise of his heart beat and increase pressure in his head, goes to a point of no return. Forcing him back to bed because the chaos of noise in his head is miserable.

On our hike today, Derek is realizing the swelling from surgery is beginning to subside. Exposing some real results.utah9

Derek couldn’t hear his heartbeat shouting at him on his right side.

(I will be posting a video of this exact moment. A miracle )

Thank you GOD.

His left was pounding like crazy still but Derek can’t remember the last time his right side felt normal.

Look how proud and excited Gavin was.

As swelling continues to subside from surgery, the right side is becoming quieter as the days goes by.

What we were told was impossible, is becoming POSSIBLE.

His balance is still quite off. We are addressing this issue. However, what makes the most sense is until the left side is repair, he will only get so far with therapy. Derek has been all over the country for vestibular therapy. He never made huge progress because the root of the problem was never identified. Once the root cause is repaired, we will hit therapy hard. His brain and eyes have been working the wrong way together for a long time, we need to retrain them to work together again.

Whenever I think of Dr. Michelle Massa, Dr. Li, Dr. Yang and Dr. Gopen, I smile from ear to ear. They all are true heroes to us. Each in their own way, they never gave up on my sweet Derek.  Taking the great risk with us, after so many said it couldn’t be done.

Whenever I think of the original group of prayer warriors, a small group of woman who relentlessly believed with us for years, in a miracle for Derek, I am humbled. When everything in our lives was falling apart, they never stopped praying. Instead, a small group of women inspired thousands to pray for Derek around the world. Derek’s vast army of prayer warrior angels-all of you, have strengthened our faith and brought others to faith.

The adventures of the Long Long Trailer are underway. Checking off some of Derek’s bucket list destinations, allowing him continue to heal and prepare for the next big surgery, which will be Oct. 12th.

To all of Derek’s army of angels,who relentlessly prayed. Please mark your calendar for this day.

Until then, on Derek’s  good days we visit national, state and county parks.

Zion National Park Utah

Bryce Canyon National Park in Utah.

The rough days we STILL get him into nature. Fishing, laying in a hammock, and just enjoying nature itself is healing. Of course, the famous Snickerdoodle is always at his side.

 

utah2Yes, Snickerdoodle is wearing a life jacket. She is NOT the best swimmer.

No matter where we end up, I’m so grateful,I can take my work where ever I go.

Not to bad of an office view heh?

There are so many national and amazing parks around us. Nature is healing.Taking small hikes and seeing God’s creation is beyond breathtaking. And its FREE to walk.

Keeping Derek and my own mental health in tip top shape is key. It’s real easy to get down, and land in the pity pool of sorrow. We miss our family, our old way of life. During the grueling days of recovery we are realizing many things. All that we have learned. The wonderful people we have met, stories that have inspired us, and the generosity of prayers and financial support have encouraged us. Beyond measure.

When you live life with blind faith, not knowing all the answers, but trusting in a greater plan, it won’t ever turn out like you imagine. It will turn out to be so much more.

Miracles happen when you have blind faith.

We can sit here and feel angry and depressed at the years lost. Years of fighting insurance companies, medical doctors, and watching what felt like our lives and finances slip between our fingers.

OR, we can stand back up

I learned as a little girl a valuable lesson. I lived next to an amazing family. They taught me the heart of the volunteer from the time I was 10 years old. When their own son died at a young age tragically, I witnessed this family rise up in the worst heartache.

Helping others, healed them.

Derek and I want to give back. Encourage anyone who needs a cheerleader. A calling to cheer on others with long term- chronic illnesses is our new mission.  Long term illness is NOT fun. For the patient or the caregiver. We have had so many reach out to us, sharing their stories of Diabetes, MS, Crones, Colitis, Stroke, Cancer, SSCD, Lyme disease, anxiety, depression and many more debilitating diseases.

The letters, emails, and text messages we have received inspire us to keep sharing. Keep encouraging. Keep laughing. Keep believing. Keep living. Keep on keeping on.We are told over and over again, that what we are sharing is encouraging others in their own battles in life. We love to hear your stories. Your stories encourage us.

These  messages are from patients, caregivers, moms, dads, sons and daughters, strangers we have never met literally from around the world.  We hear you all loud and clear. You need support.

We understand the devastation of not having any support. We also know what it’s like to have unbelievable support.

We will continue to step out of our own comfort zone and share our experiences.

You are not alone. Our hope is to encourage anyone to stand up to insurance companies, find the right doctors, heal in a positive environment and in nature, be adventurous, keep your body and mind healthy, and feed the soul. To shed light that no matter how dark and hopeless your situation is,  there is always hope. Miracles do happen. You just can’t give up HOPE during the challenges of life.

We do not have all the answers. Instead, we are pioneers.

Sharing what has worked, what didn’t,  and what we have learned, all while cleansing through tears and laughing through the pain. FYI, laughter IS way more fun.

 Most importantly, the years of hitting our now calloused knees, we have learned the best solution. Rely on FAITH. (And it won’t cost you a dime. It’s free.)

Stay tuned as we are building a support group for anyone who needs support. You have two of the biggest cheerleaders here for you. And may Derek’s pictures of being in nature and videos overcoming his horrible condition, encourage you in any struggles you are facing. Imaging trying to hike when you are dizzy, off balance, and the simple noises of the world are screaming at you, making your brain feel like it’s blowing up like a balloon creating a pressure so bad your head feels like it will blow up.

May Derek inspire you as he does me every single day.

The Long Long Trailer – Miracle Machine is on the move.

Derek has been given a second chance life. And let me tell you, together we plan on doing, seeing, being all that we can be. Most importantly, we will forever share this story. Because we ARE witnessing an unfolding miracle. No one can deny the crazy awesome GOD journey we have been on.utah4

Except a miracle!

Sarah Hein the Pioneer

 

 

 

2 thoughts on “SSCD The Beginning of the End”

  1. With God all things are possible. Anyone who doubts there is a God needs to take a trip to Bryce and Zion. Prayers and Blessings coming your way

    Like

  2. This is so awesome to hear of the progress. God definitely lead you to all the right people. So happy for your entire family. May each day bring more good news.

    Like

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