Dear PSW Community,
 
We are down to our last day of operations at the office we want to take this opportunity to give our thanks and share our final updates on a few exciting announcements we have.

Above all, THANK YOU to our warriors and their families. You’re the reason we started PSW and we have been honored to hear your stories and serve you through our programs over the years. Thank you to our volunteers and board members, past and present, as well as our medical advisory team! We are so thankful for your work and support behind the scenes. Thank you to our donors and hospital partners, you have made what we do possible from the start. And finally, thank you to Kaysee and Trapper Hyatt, our founders, for believing change was possible and setting out to make it so. Kaysee has served as our president, and more recently our executive director. Kaysee, thank you for your time, talent, expertise and passion to make change.

It’s with excitement that we share our final updates with you upon our closure today:

• A final gift will be made to the Pediatric Stroke Fund at Seattle Children’s Hospital (SCH) totaling $100,000. The team at SCH will continue to provide excellent support and care for families as well as further clinical pediatric stroke research and education for years to come. Click here to read an update and thank you from Dr. Amlie-Lefond. If you feel lead and would like to make a donation directly to the Pediatric Stroke Fund as a legacy gift to PSW, you can do so here.
• Secondly, we are humbled to announce that The Pediatric Stroke Warriors Family Toolkit will continue to be published and made available through the International Alliance for Pediatric Stroke Organizations (IAPS).

A note from the Mary Kay Ballasiotes - Executive Director with IAPS

"The recent news of Pediatric Stroke Warriors closing is a loss for the childhood stroke community. Over the years since PSW was created, we have proudly collaborated with them on many initiatives and projects. We are so honored that PSW has asked us to take ownership of their essential Family Tool Kit. This book has been an incredible help for so many families, and we will make sure it is available for everyone in the future. IAPS will make an announcement when the updated version is available via our website, Facebook, Twitter and our newsletter, so please make sure to connect with us!

Although we will miss hearing from our friends at PSW, their incredible support, resources, and work has made a lasting impact on the pediatric stroke community. Thank you Pediatric Stroke Warriors for being the guiding light for pediatric stroke families worldwide! "

• Lastly, while all of our daily operations and programs will be completed on July 31, our website, www.pediatricstrokewarriors.org, will remain available through 2020. Our continued hope is that these resources and information will be available to serve families during this season. ​

Please know that although we made the difficult decision to close PSW, it does not change the amazing impact we have had through the years. It’s with heartfelt thanks and a sense of celebration for all that we have been able to accomplish that we say goodbye. 

Sincerely,

Lyndsey Watson
President of Pediatric Stroke Warriors, on behalf of the PSW Board

We want to take this opportunity and share our utmost appreciation to the International Alliance for Pediatric Stroke, our years of collaboration in efforts and their ongoing commitment to the Pediatric Stroke Community. Today, we are honored to announce that our Pediatric Stroke Warriors Family Toolkit will have a new home, and a continued impact as we transition this resource to IAPS.

We are a living testimony, of the invaluable life-changing impact of the Pediatric Stroke Warriors nonprofit organization. We are a brain injury/stroke warrior family and our son Evan has received the support from the Helping Hands Therapy Grant program. We don’t know what we would do without that support. Literally. Evan’s life would be different today. His outcomes going forward in life would in very real ways be impacted. We know this.

Let me start back to where it all started for us, as our Evan was impacted at birth. Before I do though, let me begin with who Evan is. Evan is not stroke. Not seizures, even though his life has been impacted greatly by them. Evan is a vibrant and wonderfully opinionated little toddler, who has taught his mum mum and daddy so much.

He has taught us already, to give your best and not let anything in life hold you back. Evan is a lover of people, being so affectionate with his family and with animals. Evan loves the outdoors
and will try anything, even when it is incredibly difficult for him. He loves music, art, as well as “playing hockey” with his papa.

The majority of pediatric strokes actually occur in the perinatal period. To many people’s surprise, the most focused period of risk for ischemic stroke in your lifetime is the week you are born, and for our Evan, as in most perinatal strokes, a cause cannot be found for sure.

For the most part, besides nasty morning sickness, my pregnancy was healthy and doctors were seeing no issues with Evan growing even in ultrasounds and other testing before he was born. My water broke at 36 weeks and 5 days. He was ultimately born later at 36-6, once day later. This meant that he came one day pre-mature.

So much of Evan’s birth was a blur, in that I was pushing with Evan, and that I knew at some point, the doctor said that Evan was losing oxygen, which ultimately we found out that he also had a knotted umbilical cord that may or may not have impacted this loss of oxygen in the blood. After multiple attempts at traditional birth and Evan already being in the birth canal, the doctors ultimately rushed us into emergency C-section.

I cannot even recount how scary this time for us was. Both my husband and I had no idea what was happening, if our baby was going to be okay or even why oxygen was dropping. We were trying to make sure my mom in wait-room knew what was happening, and trying to get my father back from a mission trip from Cuba (which he did make it back). Hearing Evan’s heart beat on the monitors in the C section room and my personal faith was what kept me going in that room. I will never forget how Evan’s warm cheek felt on my cheek after he was out, as I was shivering from the shock of the traumatic birth. My baby warmed me on my cheek and then he was taken for observation.

My husband and I did not get to hold our Evan until the following day after his birth, as Evan was taken to the NICU at Evergreen health for monitoring right away after c-section. A doctor in the c-section room from the NICU had been monitoring (their protocol for C-sections) and wanted to continue to watch Evan. For this, we will be forever grateful for this doctor’s attentiveness and we let him know after Evan was ultimately out of the NICU.

I begged to go up to the NICU the next day (both me healing from vaginal and C-section) by wheelchair. Holding Evan for the first time, he had seizures, neither my husband and I even knowing it. It was awful. The kind of seizures that Evan has presented with to this point, are where his body does not visually move around, rather, getting his attention is not possible after many attempts of different kinds. Lots of professionals quickly flooded his NICU room. After they stabilized him, they rushed Evan down to get his first set of MRI of his brain. We waited for an hour or two to get the results and then my husband and I had to ask if our son was going to live (as we were not told clearly the impact that this would have on Evan’s life). We were told that he was being transported to the NICU at Swedish First Hill Seattle, where we were told that Evergreen had a contract with for neurology. They even had us hug and love on our child before letting him go with a special team by ambulance. We knew what this meant. Some babies didn’t even make it to the next hospital. We prayed and prayed. We had more people in our faith community pray.

31 days our newborn child was in the NICU, due to strokes at birth, manifest as seizures. Seizures are a common symptom of perinatal stroke. They usually start 12 to 48 hours after birth and repeat. Our doctors say that we will never know for sure, but the strokes happened sometime in the 48 hrs before his birth. Some babies have no clear symptoms for weeks or months after their stroke. Often parents, caregivers and doctors do not notice any signs of perinatal stroke until age 4 to 6 months, when the baby starts to seem weaker or partly paralyzed on one side of the body (hemiplegia or hemiparesis).

For us the positive was knowing what was in front of us once they told us what was happening, but it was still terrifying and left so many questions.

It is an understatement to say that we valued every hold and connection with our boy, traveling daily back and forth from Monroe to Seattle. We prayed with him, sang to him, held him, read to him. We were told by teams of neurologists (regular doctors were clearly scared to tell us too much that might be inaccurate) who would make their way through our area of the hospital, that children surviving stroke, about 60% will have permanent neurological deficits, most commonly hemiparesis or hemiplegia. Hemiplegia/hemiparesis (total or partial paralysis on one side of the body) is the most common form of cerebral palsy in children born at term, and stroke is its leading cause. We know now that Evan has right-sided hemiplegia, paralysis of his right side, his right side being weaker than his left.

We will never forget the first time a neurologist showed us the MRI images of “damage” to Evan’s left hemisphere of the brain. Evan also had around a handful. Of EEG’s, brain electrodes tracking his brain activity, to monitor the frequency and severity of seizure activity in his developing brain. This was also after having him be put on a heavy dose of anti-seizure meds to stabilize him. The neurologist could only estimate potential issues that Evan could have as he got older. Only guesses. Can you imagine the fear and anxiety as a new parent? Every parent wants their child to be successful and have every chance possible to make a great different in this world of ours.

We knew that long-term disabilities caused by a stroke in childhood could include cognitive and sensory impairments, epilepsy, speech or communication disorder, visual disturbances, poor attention, behavioral problems, and poor quality of life. We were told, do everything that you can early-early intervention.

I knew this-early intervention-as I am a Social Worker by trade. Having your own kiddo impacted by something like this, is a whole other story. I knew very little about strokes, seizures, and quite frankly, the variety of disabilities, before our family was impacted.

When Evan got home, we got him involved in both private and community-based birth-3 services. He started PT first at 4 months of age, then adding additional therapies.
This was all during the time that we were beginning to wean him off the anti-seizure medication, which while it stabilized his brain function, it also made our baby very lethargic and impacted feeding. We needed to see if he could be without the meds and not have seizures. What a scary season. Amazingly, he did not have any seizure activity that we knew of until a couple of months ago. Neurologist is currently monitoring for any others, but so far so good. If he continued to have them, we would be looking at medication.

Today, what we know the brain damage has impacted: to this point: He has a diagnosis of Hemiplegic Cerebral Palsy (weakness of the right side with balance and mobility), visual (thankfully not hearing), possible sensory issues, speech issues, poor attention. We know as Evan grows, additional areas could come up and at any point seizures could come back or not.
He currently sees therapists weekly for physical therapy, occupational therapy, and speech therapy, working both with private and the birth-3 community-based agency in our area.

Evan’s brain injury impacts him in a real tangible way, in that for him to be able to walk, he requires the use of an AFO, ankle foot orthotic to keep from falling/losing balance.
Evan has participated in constraint therapy an intensive series of lessons over a 2-3 weeks period, wearing casting on the dominant hand/arm, to motivated the child to use the affected size. Research continues to show that this dorm of therapy can increase awareness and quality of movement required for two-handed activities. Evan will continue to participate in this type of therapy throughout his therapy life with time in between and as recommended.

Though Evan will likely always be left-handed, he is using the right side of his more. This will help prepare him better for school in writing, playing, doing activities that other kiddos enjoy.

We cannot say enough about the heroes who work with our Evan and us weekly, as we practice these exercises daily, to give Evan the best possible outcomes. Anything that Evan wants to try, we let him. Nothing will hold him back. At one point, providers were not sure that Evan would be able to crawl even, getting up on his hands (which ultimately can help kids use tendons in his hand to be able to write later), but Evan proved otherwise. Evan is a fighter. He shows us all how to fight!

Our journey with stroke began in 2012 with the birth of our youngest, Addison. My sunshine mixed with hurricane. We welcomed this beautiful red head into our family on December 5th and despite complications during pregnancy, we were assured she was in excellent health.

Addison wasn’t our first child, so we knew bringing a newborn home was a big journey. We knew the lack of sleep, the newborn tears, and that wild but beautiful ride of those first months, all parents know what I mean. We thought we knew what to expect. But, with Addison, it was different.

Her first month home was as joyful as much as it was trying. Our daughter had extreme difficulty sleeping and eating. Every other hour like clockwork she would wake and cry. While she had the appetite – she lacked the ability to eat well. She would struggle and it was horrible to see her so uncomfortable. It was a heartbreaking cycle to witness your baby struggle to simply eat.

We lived in survival mode those first months, carting her around to a number of appointments. So many discussions on colic, acid reflux, and possible allergies. I sought support from lactation specialists, therapists trained in reflux, and made countless calls to her pediatrician. Most attempts proved futile, with the constant reassurance that she was healthy and gaining a small amount of weight. It was just enough.

By the time Addison was 4 months old she had developed a strong preference to her right hand. She didn’t use her left to manipulate any toys or reach out, most often her left hand remained in a tight fist. I would literally have to pry her left hand open to clip her nails. It was strange to me. Each time I mentioned this to her pediatrician I was told to watch and wait, that it could still be her newborn refluxes- that there was no cause for alarm. But, In my mind and in my gut I was certain something was wrong. I refused to accept this was typical for an infant.

I took to newborn books, searching for any answers that I could possibly relate to with my daughter. When nothing about hand dominance came about I took to searching Google, which is not a parent’s friend. You cannot diagnose your child through a google search and not but all lose your mind. I wanted answers, but with no direction I only found new worry.

At her 6-month checkup her pediatrician recommended we see a neurologist for an MRI. Although he didn’t completely agree something was wrong, he was willing to put the referral through. I had seen stories shared of Cerebral Palsy and pushed for all the possibilities of what could be happening with our daughter. It was then in a very light conversation that her Pediatrician mentioned there could be the rare possibility of a stroke being the cause of her difficulties.  

A Stroke? How does a child, an infant, have a stroke? I was confused and I was scared and rightfully so. The truth be told, stroke in children is not rare, its simply not discussed. Even among my early google days, stroke never popped up. I had to know what to look for, and quite honestly stroke was the furthest thing from my mind.

Addison’s MRI results confirmed she had suffered from a Perinatal Stroke during my pregnancy. That the damage to her brain was what was responsible for all the difficulties she had experienced. Because the stroke occurred in the right side of her brain, her entire left side was weakened. Her hand, her leg, her mouth, the ability to swallow, and her digestion were affected by this stroke. It was all clear to me now. Clear, but still devastating.

I wrestled with every possible emotion, just as I am certain any parent does when they receive a major diagnosis for their child. I was angry that after months of appointments and specialists- not one of them had mentioned a stroke as a possibility. I was filled with guilt that I didn’t fight harder for my daughter- that I failed at protecting her. I was scared for her future and what it may look like. Was she going to walk, talk, would she have another stroke? And No matter how much I wanted these answers, the truth was again, only time would tell. 

Up until this point in my life, I was sheltered from this life that many parents navigate when their child has a developmental need. The one certain thing we were told was that Addison would benefit from ongoing Early Intervention. That only through therapy, could she reach her greatest potential. 

That first call to seek therapy was hard.  It’s hard for me to ask for help. It was hard for me to admit that my child had developmental delays. It was scary and I had no idea what to expect.

So, when this beautiful team of therapists knocked on our door days later for her evaluation, I was surprised that it felt like opening a door to fresh air. I had wondered, what does therapy look like for an 8-month old child?  And they showed me. They brought me hope, they brought us a plan and they saved our family from experiencing this alone.

The team coached me as a parent on how to support Addi in our daily routines and carry out those strategies between sessions.  They taught me how to thicken formula and showed me special exercises for my daughter’s mouth, so we could strengthen her ability to eat comfortably.

They showed me how to focus play on her left side to incorporate the use of her left hand and leg and how to strengthen her core muscles so she could potentially learn to sit on her own. 2 to 3 times a week these therapists were at our home, navigating this journey with me and my daughter. This team was our village. And to this day, they still are.

Addison is 7 now and let me tell you - this girl has crushed so many milestones. After early intervention, we began the often “routine” of ongoing therapies needed to continue to help her reach her greatest potential, and we realize therapy may be a part of her childhood. But, I’ve witnessed first words, first steps, leaps & bounds beyond what any doctor foresaw in her future. She does it all in her own way and in her own time, and I will always be her biggest cheerleader.

A brief, tiny moment in my daughter’s life during my pregnancy changed the course of her future dramatically. In many ways Addison is your typical child, and in some ways, she has to work much harder at the things that come easy to most, because of her stroke.

The biggest message I have ever shared to anyone is that my daughter, our children- are bigger than any diagnosis, they will amaze and inspire us with their ability to overcome. Never lose sight of that.

Our warriors name is, Brandon.

On October 31, 2017 four days after his High School won their State Cross Country title our son collapsed after Cross County practice in our bathroom. He was healthy, in the best shape of his life and only 17 years old.

Immediately, I recognized the signs of a stroke since my best friend had a stroke the year prior. The next 48 hours was intense, draining and overwhelming after calling 911. The medical community whether it was the EMT's or Dr's at the ER did not believe or want to believe my healthy son was having a stroke. It was like everything was in slow motion and as parents we had to advocate the best we could to get the treatment our son needed. After 3 hours it was determined that Brandon was having a stroke and it was one of the deadliest forms; a Basilar Artery stroke. After being transferred via ambulance to a trauma hospital an emergency surgery was performed to remove the blood clot and the journey began. The stroke left Brandon without use of his left side, speech deficit and memory & vision loss.

Brandon participated in Occupational, Physical, Vision and Speech therapy in the coming months. He worked hard and he got stronger and his left side came back to life and things started to look up. But then, he was told by his Hematologist that due to the medication he was taking he would never run again. This was not something Brandon would accept and he was up for the challenge to prove the Dr. wrong.

We decided while we have top Dr's. in Kansas City where we live we were going to travel to Mayo Clinic in Rochester, MN to receive the remainder of Brandon's treatment. Once at Mayo we were given hope. Mayo changed Brandon's meds and he was back in the saddle to start running again. Brandon got a whole treatment team and they carefully devised a plan for Brandon. Every 8 weeks we returned for testing, treatment, or procedures.

Once therapy was completed and Brandon was back at school he started to gradually start building up his stamina so that he could run and learn again. It was overwhelming & emotional to do the thing he loved (running) so much because it was like starting all over again but he pushed through the pain and he pushed through the voices in his head.

All the hard work Brandon put in the Winter & Spring of 2018 not only got him back on the track but he won his Conference 800m race. Then, he did something that no one saw coming - he qualified for the State meet at the Regional race for the 800m and 4 x 800 events. It was validation for Brandon and that is something he desperately needed at the time. The year prior, Brandon, had won the 800m race at the State meet so to be able to go back in front of a crowd of 30,000 people and race again his senior year was exhilarating. While the State race did not go as he had hoped he ended his senior year on a high note knowing he defied every odd that was stacked against him. Brandon went on to College and ran at Washburn University on their Cross Country and Track Team his Freshman and Sophomore year.

As a parent when you see your child suffering you want to trade places with them so much when they are hurting. Since we cannot we have to love them, support them and sometimes be the punching bag. We did all that with Brandon and continue to. Like any young adult he has his good and bad days but we try to focus on the positive and move forward and celebrate the accomplishments along the way.

Some advice that I can give to parents that are just experiencing this with their child is to reach out and use social media to connect with others in a similar circumstance. The Children's Stroke Foundation of the Midwest was founded by 2 friends of mine whose children had strokes in utero. The foundation reached out to our family immediately and gave us resources and hope. Also, do not be afraid to ask for help or accept it. I learned very fast that while I wanted to keep every thing running it was not humanly possible. And, if you need to cry then cry. If you need to scream then scream. Take care of you along the way.

I will finish with this quote that someone said to be when I was struggling through this journey:
"In life their are some things we never really "get over". Sometimes, the best we can do is just "get through"."
​

I never ever thought I would be a mother to a stroke survivor, I didn’t even know children could have strokes until our warrior Hannah fell gravely ill with gastro.

On the night of May 2, 2016 Hannah our 6-year-old daughter appeared at my bedside just after midnight to say she had a headache, sore tummy and diarrhea. Within half an hour she was violently ill and this continued for the next 10 hours. Gastro had been making the rounds in our household and at school, so I didn’t think anything of it. Her temperature rose and I administered Panadol, but due to severe vomiting she couldn’t keep any fluids down.

The next morning, I made a bed up on the couch in the front living room for her complete with water, hydrolyte, and a bucket. I covered her up and got her comfy and continued to open all the windows, it was a sunny day in Perth and I wanted to air the house out and get rid of the germs. I then went to lay down as I was still recovering from my bout of sickness the day before. In the meantime, my mother–in–law called to check on us both.

I awoke suddenly at 4:45 pm to the sound of my eldest daughter alerting Nannie (my mother–in–law) that Hannah was shaking her left leg and arm in the air with such force that she fell off the couch to the floor face first. Both my mother–in–law and I raced to the front living room to find Hannah face down. We rolled her onto her left side frantically calling her name—her breathing was shallow, there was a blue tinge around her mouth and lips, her eyes rolled back in her head and she was unresponsive. My mother–in–law lifted her into her arms and ran towards the front door as we tried to decide whether to take her to the doctor or ring for an ambulance.

My mother in law rang triple 0 and I put my other children to bed. I was worried about them witnessing the treatment Hannah would receive from the paramedics. The ambulance arrived swiftly and asked for background information on Hannah, did her vitals and offered her glucose. As Hannah and my mother–in–law settled in the back of the ambulance I blew her a kiss, I still thought she was just severely dehydrated from gastro. I then notified my husband of the situation who was away at work.

A few hours later, I received a call from the emergency room doctor. He told me that Hannah was unresponsive, having continuous seizures, she had been placed on a ventilator and they were preparing her to be transferred to Princess Margaret Children’s Hospital. He advised that he couldn’t make a diagnosis at this stage, but that she was extremely sick. I was shocked by his concern thinking she may have just had severe gastro and asked if they were sure they had the right child. I then spoke to my mother–in–law who confirmed it was definitely Hannah. The doctor advised me to contact my husband and have him and any other close family members make their way to PMH to see her and say their goodbyes.

I rang my husband and tried to convey the message the doctor had given me as calmly as I could and told him he needed to get home ASAP.

When I saw Hannah, I could not get over how tiny and frail she looked on the huge hospital bed. She had a ventilator, cannulas, tubes and wires everywhere, and was seizing down the left side of her body, and her complexion was grey. I was afraid to touch her in case I accidentally pulled out a tube, I told her Mummy was here and that she was strong, and that I didn’t know what was wrong but that she was in a safe place and to fight as hard as she could. I told her Mummy & Daddy both loved her very much.

The next morning as we sat at Hannah’s beside we were greeted by a team of 12 doctors, specialists, nurses, and a social worker. That morning they planned to wean her off the 4 different anti-seizure meds to wake her from the induced coma to see what she would do. It was during this as her tiny body went into continuous seizures that my husband arrived. I remember hearing his voice and his bags hit the floor. I felt a sense of relief that I wasn’t alone on this horrific journey. Hannah’s tiny body continued thrashing about, unresponsive to her name and making sounds neither of us had ever heard before. I stood fixed by her bedside squeezing her hand trying to desperately plead for a sign that she was going to be her typical self.

On day 3 in the PICU Hannah had a CT scan which showed swelling on the right side of her brain pushing on the left side. Her team ordered an MRI and were discussing putting in a stent to remove the fluid. The initial MRI showed 3 small bleeds on the right side of Hannah’s brain. A week later she still wasn’t improving and a second round of tests were organised. It was on day 8, that our neuro consultant sat with us at Hannah’s bedside with tears in his eyes and confirmed that our Hannah had suffered a right front parietal ischaemic stroke of unknown causes on May 3, 2016 and was in fact fighting for her life. I remember being read a list of side effects and asking him ‘How does a perfectly healthy 6-year-old have a stroke!?’.

Hannah spent 12 days in the PICU in an induced coma on life support. On day 9 she threw her right hand up in protest as her nurse attempted to do oral care and suction her mouth. Tim & I had tears in our eyes, our little girl was fighting, and it gave us hope that we could fight too. 4 days later when they woke her from her induced coma, she stopped seizing and tried to raise her right arm to wipe a hair off her face. She recognized Tim and me, although she was confused as to where she was, but she was awake.

Later that night once off the ventilator, she was discharged to a regular ward to begin her next challenge. I was now her full-time carer and her voice. I buzzed the nursing staff when her meds were late or when she was crying in pain. We faced many challenges during that time and she was checked hourly. She also continued to have finger pricks, urine checks, nappy changes, nasal tube feeds and sponge baths. The second week we were on the ward where we were introduced to a team of therapists (Physio, Occupational Therapist, Speech and a social worker). We were shown different chairs for her sit in, wheelchairs, shower chairs, commodes, hoists and she was fitted for an AFO for her foot, one to wear during the day and one to wear overnight as well as a second skin arm splint. Hannah and I spent the next month in the hospital learning how to roll over, pull herself up into a sitting position, how to crawl, how to stand up, how to walk again, how to swallow again, drink from a straw to a cup, to feed herself, how to say simple words, and then how to string sentences together.

She was discharged from hospital on June 7, 2016 and began PMH’s Intensive Rehabilitation Program under a multi-disciplinary rehabilitation team to improve her left upper and lower limb function, mobility and to address her cognitive and psychosocial needs following her acquired brain injury due to stroke. Since Hannah’s ABI (Acquired Brain Injury) she has been diagnosed with left sided hemiplegia, sensory impairment throughout her upper left arm, left sided hemianopia (visual field deficit), impairment with her attention control, executive function, awareness difficulties, fatigue and epilepsy with uncontrolled seizure activity.
​
Nearly 18 months on and Hannah is back at mainstream school full time in year 2 with her peers. She attends weekly Physio and Social group therapy sessions, fortnightly occupational therapy, speech therapy and psychology sessions. Our biggest issue is that Hannah looks ‘normal’ other than her second skin arm splint which she wears 5 days a week. It is hard when she fatigues after 3 to 4 hours and melts down. It has affected our other 3 children in different ways as well as my husband and myself. We slowly creep out of our ‘bubble’ to sadly retreat back, as it’s just easier most days but very lonely for all of us on other days. We are still trying to find the ‘balance’ as to how much intervention and therapy is too much or not enough. When to just breathe and let Hannah be a typical 8-year-old girl. Despite everything she has endured since her stroke, she is a very strong, determined, happy little girl who loves to laugh, spend time with her family, friends and dog Georgie. We truly believe that without our faith in God she wouldn’t be where she is today, and despite the odds stacked against her we believe our warrior is destined to do great things! Go Hannah!

On the morning of October 19th, Karsen had an episode of dizziness and vomiting. Throughout the day, he continued to feel ill and by late afternoon he was having issues with his mobility and was not responding normally. We called the ambulance and Karsen was taken to Unity Point Marshalltown where a CT scan showed a mass in his brain.

Karsen was transferred by ambulance from Marshalltown to the University of Iowa Stead Family Children’s Hospital. Shortly after arriving in Iowa City, even though it was just after midnight on a Sunday morning, the doctors and staff called for all hands, not just the routine weekend crew, to provide Karsen the best care and assessment possible. After many tests, scans, and different avenues considered, they determined that Karsen had suffered a stroke caused by a blood clot in his cerebellum. The stroke affected strength and coordination on the left side of his body but after a week of observation along with amazing care and rehab, he was released.

After returning home, Karsen had been through a week and a half of physical and occupational therapy and was working on getting back into his school routine when he had another episode of dizziness and vomiting on November 7. He again was taken by ambulance to Iowa City where stayed one night for observation as tests and scans did not show any changes. Throughout the night his symptoms subsided and the next morning Karsen was sent home to continue his therapy and rehab.

On the night of November 16 Karsen symptoms returned and he was again taken by ambulance to Iowa City. Tests and scans this time, however, showed that Karsen had suffered another stroke that was now affecting the strength and coordination on the right side of body along with his speech and his balance. After another week of amazing care and rehab at the Stead Family Children’s hospital, Karsen was again sent home begin working through therapy and rehab to retrain and strengthen his body.

Going home after the second stroke was more challenging, both physically and emotionally, as Karsen could not walk or stand without help. His spirit had also taken a huge hit as the joy and confidence that his previous progress had brought was gone along with his trust in the treatments and medications that he had been told would help him. This challenging and concerning low point, however, was brief as Karsen began putting his whole heart and effort into his therapy and he began to show progress that even his doctors and therapists can’t explain. We do remain a little weary though as the doctors have not been able to find an explanation or cause for the clots and therefore cannot rule out the chances of more incidents.

Karsen continues to receive blood thinner injections daily and goes to Marshalltown for therapy three times a week. Three weeks ago he was released from speech therapy and just recently his physical therapists have expressed confidence in him being done with therapy in a couple months as he has progressed so amazingly. Karsen has also been working to get back into his school routine and is now going to school every day with at least a couple full days each week. He does continue to have check ups and appointments in Iowa City and the doctors there have had nothing but positive and encouraging news.

Throughout this whole ordeal we have been able to experience the amazing healing power of sports. One of Karsen’s driving goals has been to get back to wrestling. In fact, the only time he really cried was during our first stay in Iowa City when we had to tell him he wouldn’t be able to wrestle this year. Even though he hasn’t been able to actively participate, the support and brotherhood that the club and school wrestlers and coaches have shown Karsen and our family has been amazing. He’s been told to come to practice whenever he wants and the couple times we have gone have provided excitement and a sense of normalcy that is unexplainable. The amazing things we’ve seen, however, aren’t limited to wrestling. When we opened the shades in Karsen’s room during our first stay in Iowa City he instantly recognized the bricks of Kinnick Stadium at which point he knew where he was and it made his face light up. In fact, every game we’ve watched since, he recognizes and points out the window he got to see the field through when they show “The Wave”. After the first time Karsen was released, several boys from the high school football team decided to come to our house and spend an evening with him and it was awesome to see the enjoyment they all got from entertaining each other. ​

My daughter Brooke had a stroke at 16 months. Here we are now 4 years post stroke. She still has so many hurdles in her day to day life. Speech therapy, occupational therapy, behavior therapy and doctors visit after doctors visit. But there is one thing she never minds doing. That’s therapeutic horse back riding!

Without a grant from Pediatric Stroke Warriors, it would not have been possible for Brooke to partake in such an amazing therapy. Our insurance doesn’t cover it. But because of PSW, Brooke was given the gift and has been working on core and leg muscles and balance. Her therapists tell us she making great gains in her strength. Brooke enjoys going each week and bonding with Kay who is her horse and Chesapeake Therapeutic Riding.

​We are blessed in so many ways to be connected with Pediatric Stroke Warriors, from receiving her brave box when we were first diagnosed, to receiving this amazing grant. It takes a village for which I am so blessed to be a part of. ​

Like all of our little warriors, Jonah is strong.
Strong in love.
Strong in laughter.
Strong in spirit.
There’s a million stories I could share.
About how he had the stroke before he was born.
About the countless of hours of therapy he’s been through.
About how hard he worked to learn to walk or use his right hand.
About his seizures.
And while all of those stories are a part of his history, they aren’t all he is.
He’s so much more.
He loves to tell everyone he meets obscure facts about the solar system.
He loves to put on his George Washington costume and go about his day, as if he isn’t dressed as an 18th century world leader.
He loves to entertain anyone who will watch with his make believe cooking show or artwork.
Our kids are strong.
Strong in spirit.
Strong in heart.
And our little warriors made us, those that love them, stronger than we ever knew was possible. ​

Jaxton had a stroke at birth that caused right side hemiplegia. He is also diagnosed with partial epilepsy and moderate autism. But, so much more than any diagnosis - He is a happy and energetic six year old who is loved so much! ​

From a very early age (just a few months) I noticed my son Lennox who was my 3rd child, was developing differently. He wasn’t using both sides of his body. We went to all the specialists and later at 10 months found though an MRI scan that Lennox had suffered a Left MCA.

I was sad but also immediately ready to take on whatever challenges may come in the road ahead. But something that hit my so profoundly, was that my precious baby was ready too. From a very young age Lennox showed the fighter and warrior that he was. He never was the baby to sit out. Since 4/5/6 months of age, Lennox created ways for him to participate in our fast paced family. Being the youngest of 3 at the time, all he wanted to do was keep up with his older siblings. At 6 months when he couldn’t reach something on his own, I remember him taking something long to pull it closer. He never learned to crawl but he made his own little tummy scoot (commando crawl). He started walking later than his siblings but he walked and then quickly began running. His therapists for years have said they are so impressed with his persistence, tenacity and never quite attitude.

I guess what I’m saying is, like I read in a Joanna Gaines magazine, we all were “made ready”. We may not have realized it at the time but Lennox, his siblings, and us his parents were already equipped with what we needed to support him and the strength and patience to seek out what we lacked. He shows us everyday that he has it in him.

I believe all of us and our little warriors are ready for what is to come. It doesn’t mean that it will be easy or without challenges but whatever comes our way we can handle. And we must for our precious little gifts. ​