Two Year Anniversary

FEAR.

I wake startled and disorientated, much like after having a nightmare.  Instantly, I sense that something is very wrong.  An intense pressure fills my head and its weight is so insurmountable that I am not sure if I can muster the strength to lift it.  My left arm and leg, equally as heavy as my head, have a tingling sensation coursing through them.  I panic as I realize that my face from the nose down is also tingling.  Instinctively, I open my eyes and immediately regret my decision.  It seems as though the room is spinning.  I cannot keep my eyes open long enough to determine if the objects in the room are moving or if I see numerous images of each object.  The baby, I think as my hand reacts to my thought and settles on my stomach.  It's so early.......I quickly push the thought away as I am too scared to even think about it.

In effort to distract myself, I try to maneuver myself in bed to grab my phone and check the time.  I reach once and fail.  I shift a bit further in bed figuring that I have just missed it and try once more.  I still miss.  The third time I open my eyes.  I quickly realize that I haven't been missing, but rather my left hand is physically unable to feel or grasp my phone.  I look at my hand; it looks like my hand, but it feels foreign and disconnected.  Something is severely wrong.

Patrick.  I need Patrick.

"Patrick." I say loud enough for him to hear me from the living room, but soft enough to hide the panic I feel.  "Yeah," he says as he walks around the corner.  "Something is wrong.  We need to go to the emergency room," I say flatly.  "My left side is tingling, the room is spinning, and I can't pick up my phone."  Patrick begins to move with urgency.  He quickly carries Seeri to the van and packs for the trip to the hospital.  I remain in the bed, stranded and helpless.  Violent nausea consumes me if I try to move or open my eyes.

Patrick returns shortly after with my shoes.  I feel my leg being lifted, but I cannot feel the touch of his hand.  Instead, it feels as if a ball of small nails are being rolled along my leg.  "Is my shoe on?" I ask, dreading the answer.  "Yes," he says softly.  I hear the fear in his voice.

CHOICE.

My mom kisses my forehead.  I hear her breath catch as she tries to fight back her emotion.  My dad goes next, silent and stoic, just like on my wedding day.  As they leave, they both tell me they love me and to rest.  I can sense that there is so much more that they want to say, but can’t.  My nausea has finally subsided, but I still can’t move or open my eyes.  I know there is something seriously wrong with both my vision and my left side at this point.  I can’t even feel the blood pressure cuff tighten around my left arm.   

At this point, I have no idea what caused my stroke.  I have listened to doctor after doctor come in and tell my family members about my bleak prognosis all while I lay in my hospital bed, eyes closed, and unable to even roll over on my own.   How can I possibly comfort them?

“I’m going to be okay,” I blurt out.  “I am strong and I am a fighter.”  

This will NOT be my life.  I WILL fight.  

HOPE.

I sit at the edge of the bed.  I take pride in that.  The steady growth of my belly from my pregnancy in combination with the deficits from my stroke makes every movement labor intensive, mentally challenging, and uncoordinated.   The last two and a half weeks have taught me more about myself than anything I have ever experienced.  My faith, mental strength, courage, and positivity have all been challenged.

My PT asks me to stand; an act that becomes a bit easier every day.  He secures the gait belt around my waist as Patrick, him, and I exchange pleasantries.  His final tug gives me the cue to start walking to the physical therapy gym.  This too is becoming easier every day.  My sensation is starting to return a bit and all of the exercises we have done have helped me regain some of my balance.  As usual, Patrick and my PT talk all the way to the gym as I focus quietly on the task at hand.  The nurses, doctors, and therapists all greet me with happy hellos and big smiles.  This is not anything new, but I see their eyes linger a little longer than usual.

Could it be?  Am I really feeling what I think they are seeing?  I don't think my PT is holding on.  Am I really walking on my own?

We arrive at the gym and I walk to the bench.  I turn in a 180, back up until I feel the back of my legs touch the bench, and slowly sit.  I look up to the glowing faces of Patrick and my PT.  Instantly, I know.  I did it.  I walked on my own.

BLESSED.

My eyes are closed.  I think only of taking deep, slow breaths to regulate my heart rate and blood pressure.  And I pray.  I pray fervently.  I feel the warmth of Patrick's hand and hear the hustle and bustle of the operating room.

Then I hear her.  

Her beautiful cry fills the room and tears immediately fall from my eyes.  Patrick squeezes my hand, kisses my forehead, and whispers, "She’s here.  You did it."

PURPOSE.

I feel her shoulders shake softly and her voice quiver as she whispers thank you after thank you to me.  She pulls away, holds my hand, and begins to say a prayer over me.  I struggle to hold my composure.  Every piece of me knows in this moment that this was God's plan for me.  Finally, I surrender and let the tears escape from my eyes.

******************************************************************************

I wrote the above on October 7, 2015.  It is now October 8, 2015.  It is a beautiful day; it is Jaelyn and my mom’s birthdays.  This is also the anniversary of the day that my friend’s son was diagnosed with cancer.  And as of an hour ago, it is now the day where I found out that my dear friend had a brain aneurysm and will be undergoing surgery this afternoon. 

Life can change in an instant.  I have lived it.  And when you have experienced something like that, the memories, the feelings, and most of all, the fear that it could all happen again is ALWAYS with you.  

Hearing the news this morning took me to a place I hadn’t visited in a while.  My heart broke when I heard; I was speechless, I was numb.  This woman is one of the people that would send me the kindest, most beautiful messages nearly every day after my stroke.  She is, without a doubt, the kindest soul I have ever met.  She has been through so much and still remains faithful, positive, and kind.  She is my hero.

I cannot take my mind off of her.  I am desperately worried about her well-being.  But, I have the curse of being able to visualize her there.  I have met the same neurosurgeons and had the scary conversations.  The same ICU nurses cared for me and I remember the exact layout of the ICU bay and individual rooms.  EVERY memory from the first week of my stroke came flooding back and it is extremely overwhelming.  Even after two years, those memories are as clear as if it happened yesterday. 

And those memories brought back to me the FEAR that it could all happen to me again.  That fear is always with me.  

My first thought every morning is, Is today the day?  Is today the day I have another stroke? I panic every time I get a headache or feel sluggish.  Am I experiencing symptoms?  Whenever I exercise, Listen to your body, plays on repeat in my mind.  

It can be exhausting.  I have to make a conscious CHOICE every day to live.  This is not to be confused with life as in living or dying.  I have to choose to enjoy life, be present, realize my blessings; I choose to live.  I have slowly learned to allow myself to listen and acknowledge my fears rather than let them rule me for an entire day for fear, worry, and self-pity only take away the precious energy I need to live.  I have also learned it’s all about perspective.  It was not fun to suffer the initial pain of a stroke, relearn how to walk, balance, and move my hand, retrain my eyes to blink and move, or be pregnant through the entire process.  But, it could have been much worse.  Through it all, I still had so much that so many others do not.  I was incredibly grateful for that.   

Yes, God has truly BLESSED me.  I have recovered well, Myah is healthy, and we are finally starting to settle back in to being us.  Not only that, I finally feel like myself.  My slight lack of functioning and strength in my left hand and leg are my new normal.  And I finally took the plunge and had eye muscle surgery in April.  I will never forget the pure joy and relief that I felt when I opened my eyes and only saw one image for the first time in 16 months.  My vision was restored, but the surgery also took away the one visual tell-tale that I had suffered a stroke.  I now can look in the mirror without seeing the constant reminder of my stroke and I am not self-conscious when I meet new people. That alone has been a game changer for me in the recent months.  

I have not recovered by myself, though.   My family, my friends, my co-workers, my fellow gym rats, MY ARMY, all have motivated me along the way.  The amount of love, friendship, and support that we have received from others over the last two years has truly changed our lives.  YOU all gave me the powerful gift of HOPE when I needed it the most.  Your kindness helped me to believe in myself.  Your compassion inspired me to do more.  Your generosity helps me give HOPE to others who need it.  

YOU have all helped me find my PURPOSE.  YOU have all helped me make my stroke matter.  I cannot adequately explain in words the enormity of that gift.  

Every 10 weeks I have the honor of organizing and implementing numerous fundraisers to help families suffering from medical emergencies and the Do Better. Be Better. Scholarship program.  Since January we have gifted 12 families $1000 each and given two $400 scholarships (they will be $800 this year!).  We are currently hoping to help 2-4 more families this session with our efforts.  And as of last Thursday, Do Better. Be Better. received $10,000 from the 100+ Men Who Care: Cedar Valley Chapter to be used to help others (blog post on that to follow!).  I CANNOT WAIT to finish the year helping so many families!   

Every fundraiser is a lot of work and tons of fun.  I leave with renewed inspiration and a full heart every time.  Even better, they remind me of how Do Better. Be Better. came to be. 

I still remember laying in my ICU bed on that first Friday night.  I was alone, as everyone wanted me to sleep.  How could I sleep?  The constant visits from the nurses and the numerous teams of doctors had completely overwhelmed me.  Plus, I was trying my best to be strong and present in all the conversations I had with all my family members.  And all the messages Patrick had read me throughout the day had left me paralyzed with gratitude.  I needed to say thank you; people needed to know how much I appreciated them and everything they were doing for us.  

So, I grabbed my iPad with my right hand.  I quickly realized I wasn’t going any further than that when I opened my eyes to type and saw more than one iPad.  I called for my brother to come in because I knew that he would be the most strong.  He sat next to me as I recited what I wanted him to write.  I will never forget the first paragraph.

I wanted to say thank you to all my family and friends. Your generosity and kindness has overwhelmed me. I have been praying that God saves a special place for all of you in His kingdom. You have motivated me to do better and be better. I am starting today. I love you all. I love you all from the bottom of my heart.

I still feel that exact same way.  I pray for you all daily.  Your generosity and kindness still motivate me every day to be a better version of myself.  I love you all; I love you for believing in me, for inspiring me, and for supporting Do Better. Be Better. and all that it involves.  You have given me the opportunity to make my stroke matter, not only for myself, but for my children.  You have helped me create something that I hope they will be proud of me for and that they can be an integral part of the rest of their lives.  I will do everything I can to repay your for that amazing gift.

So, I leave you with this.  A month ago, I was awarded the Rehabilitant of the Year award from Covenant Rehabilitation Center.  It was the first time that I had been back there since I finished outpatient therapy in January of 2014.  Wow, did the memories come flooding back!  It was so great to see all the therapists, nurses, and doctors.  It was wonderful to introduce them all to Myah, too.  As we were leaving, the front desk nurse pointed out a flower to me and explained to me that it was ours.  It took a second for me to remember that we had left a few of our flowers behind for the staff because we couldn’t fit them all in our car when we left.   This flower was just a little guy when we left it.  The doctors and nurses have cared for it for the last two years and now it looks like this.  I feel like it is the perfect symbol to represent both my journey the last two years and how amazing the staff is at Covenant Rehabilitation; they amount of love and care they give ANYTHING is truly remarkable.  

And finally, this is a video of Myah leaving Covenant Rehab that day.  She was a part of me the last time she walked out of those doors.  As I took it, I had a flashback of the day I left; walking out on my own, uncertain of what was going to happen next. 

  


To see her walk out of there that day took my breath away and showed me once again that

MIRACLES DO HAPPEN.

LIFE IS FULL OF CHOICES.

YOU CAN WRITE YOUR OWN STORY.  WRITE IT WITH PURPOSE.



Special thanks to all who are involved with making Do Better. Be Better. work behind the scenes:

My husband, Patrick Smith

Next Level Extreme Fitness: Ryan Downs, Creed Harkless, Matt Just, Luke Schuver, Danielle Carlson, Sarah Alborn, Allison Mitchell, Jordan Young, Nikki Carney, Natasha Hadacek, and Stacy Doughan, Mary Jo Vrba

Key West Tanning and Fitness Owners and Staff, especially Heidi Dohlman

Spread The Care non-profit and Lincoln Savings Bank, especially Alan Shakespeare 

Cedar Falls High School and Student Senate, especially Erin Gardner

Dunkerton High School and Leadership Group, especially Justin Urbanek

Dunkerton Class of 1999, especially Kelli Snyder

Sara Fitzgerald, Do Better. Be Better. graphic design liaison

Craft Cochran Screen Printing, especially Keith Sandvold 

100+ Men Who Care: Cedar Valley Chapter
  

Newspaper Articles

Rehabilitant of the Year Award

Do Better. Be Better. Color Dash

Our Family after the Rehibilitant of the Year awards ceremony.

Katie Jo Funk (my OT) with Myah and I.

 

The flower that we left the nurses and doctors after we left Covenant Rehabilitation.   Wow, has it grown!

Paying it Forward: Session 3

The third session of the 'Do Better. Be Better.' was once again a HUGE success.  The fundraisers this session were: week one returner's only gauntlet (CF only), a Buffalo Wild Wings night, a Chuck E. Cheese night, a golf benefit, and a sweaty t-shirt theme day.  We were able to raise $4000!  Better yet, we helped THREE families in need and donated $800 to the Dunkerton Do Better. Be Better. Scholarship fund!!!! Thank you to all of you for making these events so incredibly successful.  They would not be possible without the generosity of all of you.

The stories below briefly highlight those who we all helped.  Each family wanted to make sure that I extended their deepest appreciation, love, and gratefulness to all of you.  Yes, the monetary donation to them was incredibly helpful.   But, all of them were quick to say that the thoughtfulness and kindness behind it was even more powerful and truly overwhelming.  All of the families were inspired to pay it forward and are hopeful that they will someday help us in our efforts to help others.

Angela Gamerdinger

At my yearly exam June 3, 2014, my doctor found a lump in my left breast.  I was sent directly to mammography, then directly to radiology for an ultrasound, and then back for another mammogram.  I sensed through all of this that I was a breast cancer patient now.  The doctor told me I had cancer before I even had a biopsy.  I suddenly felt doomed.  The doctor told me I had a 4.7 centimeter cancerous tumor and I would have to undergo chemo and radiation.
 
I don't remember the drive home.  Ten days later I had a left breast mastectomy.  I want both breasts removed, but due to a bleeding disorder called, Von Wilbrands disease, I was only able to have one removed.  I was then sent to the Cancer Treatment Center where I was told I would have 16 chemo treatments from July to December.  This was a very arduous journey.  I did become so sick with these treatments that I had to take a leave of absence from work.  Maintenance chemo began in January and lasted most of 2015.  This chemo was not as harsh, thank God.  In January, I also started 33 radiation treatments.  

This has been a long journey that is coming close to completion. The good Lord, family, friends, and perfect strangers have played a huge part in my journey which I so greatly appreciate!!!  The doctors will never tell me it's gone, but I try to live my life like it is gone. Thanks to all of you for being part of my journey as I continue to battle this horrible disease.

Tiana Williams (written by her mother, Dawn Laws)

Tiana began to walk at 11 months old and from the moment she walked I knew there was something not right.  Tiana's legs were bowed more than I thought was normal.  She is my 3rd child, so I didn't feel like I had new mom paranoia.  I expressed my concern to her pediatrician on every doctor visit and check-up.  Finally at her 18-month check-up, she was referred to an orthopedic surgeon at the University of Iowa Hospital.  At her appointment, there was a visual exam and x-rays. Her doctor said that 99% of children with bow legs correct on their own. When he returned, he told me she was not going to correct on her own and would only get worse and would cause crippling without surgical correction.  Tiana was diagnosed with a rare bone condition, Blount's disease, on August 20, 2014.  This occurs in less than 1% of bow legged children.  There is little information available about the disease and it is listed as a rare disease.  I was numb to the situation. 

I was given two different options of surgery plans.  The first option was a bilateral osteotomy on her tibias. With this they would cut and straighten both legs and cast them for 6 weeks.  The second option was a new procedure called 8-plate surgery.  This is minimally invasive where they would put plates in her legs to make room for her growth plates and stop growth on one side of her tibia to let the other side of her bone catch up and straighten her legs.  I decided to to go with the 8-plate surgery suggested by her ortho surgeon and trust in him and his team of doctors that this would correct her.  She had the the 8-plate surgery done on September 23, 2014 in Iowa City.  She did stay over night after the procedure and she was up trying to walk a couple days after surgery.  There were no restrictions.  

Since then, we have had numerous visits to Iowa City with close monitoring or her growth pattern. She also is in chronic pain and was fitted for a KAFO brace to wear on her left leg to support it because the left is the worse.  Unfortunately, her first surgery was medically determined a failure June 29, 2015.  The measurement of the left leg was worse than suspected and the right measurement was slightly improved, but not enough to continue with the plates.  She's young, so we didn't want to waste time.  On July 7th, she had a second surgery to try to straighten her legs and her casts were removed on August 21.  From the moment the casts came off, I again felt that there was something not right with her left leg.  

She recently had her follow-up appointment and I was assured her bones aren't broken (as I thought after I saw her X-rays) and will straighten out on their own.  Her orthopedic surgeon will be retiring in November and we will see her one more time.  Currently, I'm seeking a second opinion at the Mayo Clinic. This is not fixable over night, so we take it one step at a time. I hate that my baby is going through all this, but is necessary for her to live a productive life.   I just hate to think that Tiana may have to have more surgeries in the future. I know her left leg was more severe, that it still isn't straight, and that it will need time to heal.  But, my motherly instincts haven't failed me yet and I feel like our journey isn't over.

Tiana is a very strong-will, determined little girl!  I love her so much and want nothing but the best for her.  She endures chronic pain and it breaks me down to see her suffer. She wants to keep up with kids her age, but can't.  She currently doesn't like to bear any weight on her left leg and scoots on her bottom to get where she needs to be.  She has a wheel chair that she uses at daycare, but doesn't really like to be in there.  For the moment, though, we wait for the final outcome of this surgery and wait for the next step.  

To learn more about Tiana and follow updates on her condition, please join the Facebook group page, 'Tiana's little legs, a journey with blount's disease.'

Gabriel James and Nora Melissa Ackerson 

Gabriel and Nora were born at 23 weeks on December 13, 2014 in Cedar Rapids, Iowa. The children were born at St. Luke's Hospital weighing less than 2 pounds each because of premature labor caused by an infection. Gabriel has been at St. Luke's since his delivery and Nora has split time between St. Luke's and the University of Iowa Hospitals and Clinics.

Nora suffers from hydrocephalus, which is an accumulation of fluid build up on her brain. She currently has a reservoir in place that allows the excess to collect into an area on her forehead that requires a doctor to withdraw three timesa week. The only current treatment available in Iowa is to have a shunt inserted with a tube that runs from her brain into her abdomen where the fluid is absorbed into her body. Once a shunt is installed, it possiblyneeds to be replaced at least every 10 years. This means, Nora would have to undergo at least 8 more replacement surgeries in her lifetime. Shunts also can have negative effects on equilibrium, cause difficulties with flying and potentially keep her from athletic activities for the rest of her life. 

Please visit http://ackersonstrong.com/ to learn more about Gabriel and Nora.  



Our next fundraiser is the Do Better. Be Better. Color Run on Saturday, October 3 at 9 am at Pfeiffer Park in Cedar Falls.  It costs $20 to participate and a t-shirt is included.  All proceeds will be divided evenly between the Do Better. Be Better. Scholarship fund and families in need.  Please use this link to sign up online: https://secure.getmeregistered.com/get_information.php?event_id=122459

Paying it Forward: Session 2

The second session of the 'Do Better. Be Better.' events were once again a HUGE success.  There were three fundraisers this session: week one returner's only gauntlet, a co-ed dodgeball tournament,  and a blacklight gauntlet at each location.  We were able to raise $5500!  Better yet, we helped FIVE families in need!!!! Thank you to all of you for making these events so incredibly successful.  They would not be possible without the generosity of all of you.

The stories below briefly highlight those who we all helped.  Gifting the money to these families was an experience I will never forget.  They all wanted to make sure that I extended their deepest appreciation, love, and gratefulness to all of you.  Yes, the monetary donation to them was incredibly helpful.   But, all of them were quick to say that the thoughtfulness and kindness behind it was even more powerful and truly overwhelming.  All of the families were inspired to pay it forward and are hopeful that they will someday help us in our efforts to help others.

Seth and Jessica Lorenz

I received the nomination to help Seth and Jessica on June 1.  Unfortunately, Jessica passed way the next day.  This family has been through SO much and I feel absolutely honored that we were all able to help them.  In Seth's own words, "The funds will help our family to pay for the medical bills and other bills that we occurred during the caring process of such a beautiful soul."

Below, is Jessica's story.  She also kept a detailed blog (www.turnonthelightdotcom.wordpress.com).  I encourage you to visit it.  From speaking to Seth and reading the nomination submitted, I think Seth and Jessica were two people that embodied what Do Better. Be Better. truly means.  

Jessica was diagnosed with mucinous carcinoma of the appendix in October 2014.  It is very rare; only 600 to 1000 Americans are diagnosed with it each year.  It is even more rare for a 31-year-old, as most who are diagnosed are in their 50's.  Jessica underwent chemotherapy treatments in Iowa City and evaluations in Omaha.  She had a 16-hour dubulking surgery on April 1, 2015 to remove all of the cancerous organs and tumors that had spread throughout her abdomen.  She also had HIPEC, from which recovery from both of these procedures was very long and difficult.  Jessica spent 5 days in ICU and another 5 days in another section of the hospital.  They were released from the hospital but were to remain in the Omaha area for another 2 ½ weeks in case of complications.  They eventually came home for a few days at the end of the month in April.  But shortly after that, complications began and Jessica’s began to have fluid filling her lung cavity and had developed an infection.  She was hospitalized for about a week locally before she was transported by ambulance back to Omaha to be under the care of Dr. Jason Foster.  In Omaha, Jessica continued to have more and more complications.  She had two chest tubes attempting to drain the fluid entering the lung cavities and a nephrostomy tube to help drain her kidney.  Jessica then entered renal failure from the cancer progression and was placed on a ventilator due to the trouble with her breathing.   

On June 2, 2015 Jessica Leslie Lorenz was released from her worldly body. She is survived by a loving husband Seth S. Lorenz and three children, Mackenzie 13, Carter 10 and Greyson 21 months.  

Scott and Alicia Hyde

Scott was diagnosed with Hemolytic Uremic Syndrome at the age of 1.  When Scott was 10, he received his first kidney transplant with a donation from his mother.  In 2000, his kidney failed and he was placed on dialysis.  The kidney failure was discovered days after his brothers kidney transplant; he was diagnosed with the same disease at the same time as Scott.  While on dialysis, Scott endured many hospital admits, infections, and surgeries.  In March and September 2010, Scott suffered with endocarditis.  The episode in September led to open heart surgery and a mechanical heart valve.  Scott needed to go on disability a year later as working full time (40+hrs/wk) and dialysis, 3 days week 5 hours at a time, had taken its toll after 11yrs.  We continued with surgeries, infections, and admits.  In 2013, Scott received a kidney from his aunt, but it never worked.  The doctors to this day have never seen anything like it and have no explanation.  We continue with dialysis, surgeries, hospital admits and infections.  Scott also suffered a stroke, has partial blindness in his left eye, and suffers from migraines.  We are currently working on getting him placed on the transplant list again for a third kidney. In the words of Alicia, "We keep our heads up, stay positive, and move forward.  It is what it is and somebody has always got it worse."

Chelsy King and Family

Last April 15, 2014 at 19 weeks pregnant, we found out we were having a boy and that he has Spina bifida.  It was the worse day of our lives!  The next day we were introduced to Dr Mansagar, who told us about a procedure available at Vanderbilt University in Nashville.  At Vanderbilt, they perform inter uterine surgery to repair the opening in the spine.  We went to Nashville and Sutter and I had surgery.  He weighed 1lb. 15oz. during this first surgery.  Surgery went awesome and I managed to keep carrying him until 36 weeks.  When he was born, there was a little spinal fluid leaking so they operated again when he was 3 days old.  He only stayed in the NICU for a week and we were sent home and life was "normal" again!!   They continued to monitor fluid in his head and spinal cord but all was going well for a while.


On February 18, 2015, our 11-year-old woke us up saying there was a fire.  Our kids lost everything but luckily we were all safe.  Thanks to all the amazing people in our life, we were able to keep life semi-normal for our kids and made it through that fiasco!   During the midst of construction, Sutter had his 9-month MRI and they found fluid on his spinal cord.  On May 19, he had his third surgery and they put in a shunt.  He is doing well since then, but we go back to the surgeon in July to discuss another lower back surgery.

Franco Troiano

 This was submitted by Gio, Franco's brother, and is written from his perspective.

Franco is a 22 year old, soon to be 23 year old, kid. I say kid because that's how I've always seen my, birdmaning every workout, little brother.   He's always making me laugh and I find myself enjoying life more when he's around.  

This past February we received devastating news that he has cancer.  The full diagnosis is Stage 3/Pre-stage 4 Hodgkins lymphoma.  The lymph nodes in his stomach and neck are infected along with areas along his spleen and spine.  He's been fighting this monster hard and will be until late September/October.  I mean he's a boss. The dude won NLXF in his second session. Fighting, he does well. 

He has chemotherapy treatments every Friday (great way to start the weekend right?).  We've had a few scares here and there, but my brother is a champ when it comes to perseverance.  He must have gotten that from watching me all these years!  We started a GoFundMe account and the wonder family that is Next Level (holla!) have helped us out in so many ways.  All the money raised for my brother has been going to pay his medical expenses as they rapidly pile up.  

He had his midway PET scan, and results were promising. There was some shrinkage in his lymph nodes in his abdomen. Come this September/October, we'll have a re-evaluation and determine what to do next for his treatments, if any. Despite all this, Franco has remained very positive and is still making us laugh. 

We are greatly thankful and humbled by all the kind words and things everyone has done for us and we really can't say thank you enough.  There aren't words for the gratitude we have for you all. On a side note, I had to promise not to slander Franco while writing this, so if you see him, could you do me a solid and let him know big brother had nothing but good to say, that would be great!

 

The Bartlett Family

I did not want to bother that Bartlett Family during this difficult time.  If you would like to read about their story, you can visit Orchard Hill Church's website:

Bartlett Family Update   

Eye Muscle Surgery

On April 7, 2015 I had eye muscle (strabismus) surgery to correct the double vision that still remained from my stroke.  The date was less than ideal because it was Myah's first birthday.   However, we were hoping that all of Myah's birth 7's would bring us good luck.

They did.  My surgery was a success!

Let me back up first, though.  Patrick and I left for Iowa City at 1 pm to get to my pre-op appointment at 2:45.  My doctors rechecked all of my measurements to make sure they were all still stable and talked to us further about the specifics of the surgery.  By specifics, I mean arrival time, when I had to stop eating for the night, etc.  I still to this day have no idea what they actually did to my eyes.  All I do know is that they worked on one muscle on the inner corner of each of my eyes.  I don't want to know because I don't think I would have been able to go through with it if I did.  If I ever need brain surgery someday, I will do the exact same thing.  You can't be scared of what you don't know.  I was frightened enough by the little I already knew.

After the appointment, Patrick and I did some shopping, went to our nephews baseball scrimmage, and went out to eat.  Once we got to the hotel and settled in, I became nervous.  The busyness of the day was gone and I was left to my thoughts.  So, in true fashion, I made myself busy.  I created a 'Do Better. Be Better.' Facebook page and organized some things for Adopt-A-Family.  I finally fell asleep at 11 pm only to wake up at 5 am wide awake.  I decided to write my first Facebook post to the Do Better. Be Better. page to clear my mind and it actually worked.

I was also bombarded by Facebook posts, messages, and snapchats of people wishing me luck and wishing Myah a happy birthday.  The love I felt from those and the busyness that reading them provided made the morning go by very quickly.  Minus the fact that I was absolutely starving!

We arrived at the hospital at 8:30 am.  We only sat in the waiting room for about 3 minutes before we were called back to the outpatient room.  The time before my surgery was spent getting dressed, getting an IV, and meeting with the anesthesiologists and surgeon.  My mom, sister, and brother-in-law were there too. Everything was going fine until we spoke with the first anesthesiologist assistant.  She gave us a rundown of what was going to happen and when she finished, we asked a few questions.  She had NO clue about anything that was in my health history.  It was so bad that Patrick actually stopped her and jokingly asked her if she was drunk.  Needless to say, it was a little unnerving.  The only part of my surgery that we were worried about was being put under general anesthesia and the anesthesiologists didn't know my health history....my rather MAJOR health history at that???  Shortly after she left, the main anesthesiologist came in and calmed our fears.  He was hopeful that since my blood pressure was used to fluctuating from exercise that being put under would be a minor stress to my body.

The anesthesiologist came and got me fifteen minutes after my scheduled surgery time.  My brother-in-law had left for the waiting room a little before that so he had already wished me good luck.  I hugged my sister first, who like my brother, is always strong in these instances, so I was able to hold back my emotions.  Next, was my mom's turn.  Like my sister, she said good luck and I love you.  But also choked out, "everything is going to be okay."  I could tell she was trying to hold back many different emotions which in turn made me emotional.  By the time I hugged Patrick, I was trying really hard to hold back tears.  He gave me a very tight squeeze and nuzzled his head in to my shoulder as I nuzzled my head in to his chest.  He said, I love you and I responded with the same.  I could barely get it out.  In that moment, there were so many things I wanted to say to all of them; if this happens, remember this, tell the girls this...but I couldn't.  I didn't want to believe that anything could happen.  If I were to act like it, then something bad actually could happen.  I didn't want to put it out there in to the universe to be known.  So, instead I said nothing and prayed that they all just knew.  In retrospect, I am still not sure if that was the right decision.  What if something would have happened?

Nice hair net!

I know that this all sounds a big dramatic considering I was having a routine surgery.  I would have never been scared before.  But, I know what kind of evil is living in my brainstem and it could literally burst at anytime.  It could burst in my sleep when I am completely relaxed.  Imagine how much more a risk it is for my CM when it is stressed.   I realize that I go on with my normal day; I work, I exercise, I go 100 miles a minute, but it is different to be medically induced to sleep.  At least when I am awake, I can tell someone if I need help.  I can feel the symptoms happening and give people a warning.  When I am sleeping I can't.  Yes, I was hooked up to a million machines that were monitoring my blood pressure and heart rate.  But still, it is the simple fact that I couldn't speak for myself or feel that was the most frightening.  If something had happened, I would have never known.  I wouldn't have been able to prepare myself for the fight....I would have just woke up to it.   

I actually walked back to the operating room.  The anesthesiologist had me lay down on a table that was barely wider than I was.  He then told me that he would give me some medicine to calm down and I would be out very soon.  The gas mask was placed on my face right after I laid down.  I told them my name and birth date when asked, took three deep breaths, and was out!

Immediately after surgery. 

I woke up to a nurse saying, "Jamie, my name is Greg.  It is time to wake up now."  My first thought, "No!  That was the best sleep I have had in a long time!"  The next thing I knew I was back in the original room, my left eye bandaged, covered in blankets, and surrounded by my family.  Apparently, I made a lot of comments about having a great rest, being GSD in my dreams, and adamantly stating that I wasn't loopy.   My family also told me that I actually got myself off of the bed they rolled me in on and sat down in the chair all on my own.  I do not remember that at all!  I remember all of this; however, I must have sounded much crazier than what I personally thought I did. 

Shortly after that the surgeon and two of his assistants came in.  They were there to check and see if the surgery had been successful or if they would need to adjust my eyes further.  They told me that I would need to open my eyes and let them know if I saw one or two images.  Naturally, I opened my eyes to try.  HOLY SHIT.  The pain.  It literally felt like I had a million shards of glass stuck in both of my eyes.  The second I opened them tears ran down my face.  I remember thinking, "I cannot even open my eyes, nor can I see anything through all the tears when I do.  How am I going to tell them if was successful or not?"  Thankfully, the had numbing drops to put in my eyes.  I LOVE NUMBING DROPS!!  If only I could have taken them home with me!

After the eye test.  Swollen and painful eyes!

Once my eyes were free of pain, they had me focus on the restroom sign out in the hallway.  When they asked me how many images I saw, I joyfully responded, "I see one.  I see one. (insert pause)  I only see one."  I was in complete disbelief.  After nearly 18 months I could finally see one image!  The doctors and my family expressed their delight and then I said, "If I could feel my eyes, I would be crying right now."  To which my mom responded, "We are all crying for you."  Up to that point, I was so consumed with what I could see that I didn't hear the sniffles coming from Patrick, my mom, sister, and brother-in-law.  At that point, Patrick and my mom both stood up and kissed me on my forehead.

After I confirmed that I could see one image, my family had to step out so they could tie off my stitches.  The doctors numbed my eyes a bit further and then surrounded my head.  One doctor had two utensils that resembled crochet hooks and used them to grab what looked like strings.  Keep in mind that my eyes were open watching all of this.  I felt nothing; not even a pull.  But, I watched her manipulate the strings with her utensil and then cut them off.  When I was originally told about this step, I was terrified.  I assumed that it would be painful and gruesome and it was neither.  Actually, it was quite fascinating.

Throughout the surgery, Patrick had been in contact with our family and closet friends.  It was very entertaining to read back through that message chain once I could open my eyes long enough.  I had many heartwarming messages that day, but my favorite was from my friend, Nicki.  She sent Patrick and I this snapchat after he told the group that I was okay and that I had just confirmed that I only saw one image and the surgery was a success.  I really have the best people in my army.  Hands down.


Once the surgeons finished up, I was on my way.  It only took five minutes for the pain to return.  I tried to keep my eyes closed.  I could only keep them open for about 10 seconds before the pain was unbearable.  When we took this picture, I opened them when my sister said 3.  Notice how I still have the marks from where they marked where my eyes were.  Like the surgeon joked, hopefully they didn't really need to use those marks to find my eyes, but it is protocol no matter what surgery they are performing.  Once we got outside, the sunlight was unreal.  My eyes were extremely sensitive.  Even having them closed wasn't completely comfortable.  I could feel the stitches at the top and bottom of my eyelids.  So, if I would move my eyeballs while they were closed, it still felt like shards of glass cutting my eyes.

Car ride!

We stopped at Culver's on the way home.  I was famished.  I ate with my eyes closed and only opened them to see where my drink was.  As soon as I finished, I laid the seat back and tried to sleep off the rest off my anesthesia.

We arrived home around 3 pm.  We walked in the door to all of our girls screaming and running at us, which is our normal welcome home when we have been gone.  Immediately, they asked me what was wrong with my eyes.  I had them open so they could see the redness (my eyeballs looked like they were floating in blood) and my eyes were watering like crazy.  Naturally, they asked why I was crying and was concerned that I was hurt.  I explained to them that my eyes hurt but they were all better and showed them my prism free glasses.  I only stood there and talked to them for 45 seconds with my eyes open, but that was 40 seconds too long!  THE PAIN!!

I quickly rushed to my bedroom to lay down with my eyes closed in the dark. And that is where I stayed the rest of the night.  I couldn't watch TV or read; I literally just laid in my bed with my eyes closed and nestled in with my thoughts.  Later, Linden joined me to go to sleep.  She instantly asked me if I was feeling better.  I told her that my eyes hurt very badly, but I was very happy that they were fixed.  She then said, "Mommy, roll over and I will rub your back and make you feel better."  We always give the girls back rubs when they aren't feeling well so this was incredibly endearing.  She only lasted for about a minute before she fell asleep, but it was an amazing way to end my day.

The next week and a half continued much of the same.  I spent most of my time up until Sunday afternoon laying in bed with my eyes closed.  Patrick did get me some books on tape which was great.  On Thursday the watery eyes finally stopped.  By Friday, I could last a good hour before I felt like I needed to rest my eyes.  Monday-Wednesday was good other than the continued redness, quick fatigue, and light sensitivity.

My check-up went great on Wednesday.  The doctor mentioned that I had more redness in my eyes than most patients at that time, but he was not concerned.  I could see well and he was pleased with the results of my surgery.  I go back at the end of May for hopefully my last visit to the neuro eye clinic EVER!

I started wearing contacts three weeks after my surgery.  AMAZING.  To see clearly, to see one image, and have nothing on my face was wonderful.  To workout without glasses on, well, I can't even put in to words how great that was!  At this point, my eyes are still red, but it looks more like pink eye.  They still fatigue easily so I do not wear my contacts everyday or for as long as I used to pre-stroke.  Simply having the option to wear contacts is a beautiful thing.   

To have my double correction fixed means more than being able to see.  It means that, minus my slight left-sided deficits, I have beat my stroke once again.  It means life is moving forward.  It means my stroke hasn't defined me.

Cheers to many years of being able to literally being able to see things in a brand new light!