Blog Archives

Warrior Strong Story - Meet Beaudin

5/18/2020

This little man is a fighter! Beaudin suffered a perinatal stroke around the time of his birth, and as a result, suffers from complications of hemiplegic cerebral palsy. Just don't tell him that because he's never let it slow him down. Beaudin is a smart, clever, jubilant, and determined kid who has never shown any signs of backing down from a challenge. He's often too smart for his own good (and by that, of course, we mean his mom and dad's own good). Whether it's showing off his utensil skills he is so proud of in public, chasing his dogs around the yard, or picking all his favorite books before bedtime, Beaudin is driven to keep experiencing everything his ever-expanding world has to offer. He proves to us every day that his disability will have to keep up with him, not the other way around.

While our world may be full of doctors appointments and therapy we would not have it any other way. We know we are very blessed to have our little boy with us everyday. As new parents to our first born child we never expected a NICU stay let alone to find out our child had a stroke. We had a perfectly normal pregnancy and our little man was full term and not so little. I am thankful we live so close to a children's hospital and could be transferred to our amazing care team there. While this was not the life we had imagined it has taught us so much as parents and we love that we get to celebrate our little warrior!

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Warrior Strong Story - Meet Dakota

5/18/2020

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It's hard to look back at pictures or videos of our son Dakota as a baby and not think about how he was fighting a battle we didn't even know was possible then. Pediatric stroke was not a diagnosis that was ever mentioned to us at any of his doctor's visits or therapy sessions.

The first time we ever heard that term, our son was 5 and a half years old. His symptoms just didn't raise the right flags and his stroke, that most likely occurred in utero and went undiagnosed for years. A seizure led to the test that revealed his stroke. It was hard to comprehend that he could have had this happen and yet here he was right in front of us doing things we would not have thought possible for anyone with this diagnosis.

He is such an amazing and sweet person. He always works hard to overcome his struggles. He is always brave about having tests done and never complains about taking his medicine. We are so very grateful for him every day, and although he is still a brave warrior fiercely fighting this battle we are now better armed to help him along the way.

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Warrior Strong Story - Meet Mayson

5/18/2020

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Our Mason is our Superhero! He has overcome every obstacle with a smile! He is a determined, stubborn, smart 6 year old! He had a stroke in utero and has been in therapy to work on his left hemiplegia. Luckily with the help of his wonderful therapists, he has come a long way and only has very minor left hand deficits!

So proud of our superhero!

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Warrior Strong Story - Meet Jayvian

5/18/2020

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This is Jayvian our warrior.

A mothers instinct is a very powerful thing. Jayvian was misdiagnosed twice at the age of two. I continued to seek medical attention for my warrior because deep down I knew he was going thru something serious. Sure enough 4 days later he was finally diagnosed properly with having three ischemic strokes.

It has been 2 years since. Throughout these two years he has had brain surgery, botox procedure and battle physical and occupational therapy weekly. One thing I know about my warrior is he doesn't let anything get in his way. We are so proud of our warrior!

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Warrior Strong Story - Meet Sloane

5/18/2020

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This is our little warrior Sloane. She had a perinatal stroke and was diagnosed at 8 months after we noticed limited use of her left arm. She is 2 years old now and gets stronger every day through occupational therapy and wrestling with her 5 year old brother. I am so proud to be her mom.

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Warrior Strong Story - Meet Hayden

5/18/2020

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Our son had a stroke at or around the time of birth, but we didn’t learn this until he was 6months old. The signs were there - favoring his left hand, right hand was always in a tight fist, crying uncontrollably for lengthy periods of time - and although I brought these things up several times, it was dismissed or thought to be colic.

That all changed on the evening of Dec. 10, 2018. Our son had his 6 month immunizations that afternoon and then that evening, I noticed these rhythmic/pattern like crunching movements along with eye rolls. My husband and I called the after hours pediatric care and they said he’s probably just tired, but advised us to keep an eye on him. My ‘mommy instinct’ knew it was more than that and I called our pediatrician the very next morning. They scheduled a 30minute EEG later that week.

After getting those results, we were told to head straight to Riley’s Children’s Hospital in Indianapolis. Our son was admitted and had a 24hr EEG, which determined he was having Infantile Spasms. He, then, had an MRI, which showed the stroke damage which had occurred 6months (or so) prior. Thankfully, our son’s Infantile Spasms were stopped quickly with high dose steroids. He, then, began multiple therapies within two months of his diagnosis. He currently has PT, OT, and Speech Therapy and continues to show great progress!

Our son will be 2yrs old at the end of this month (May). He is a true warrior and miracle from God. He can walk/run, say/sign several words, use his right hand to clap/blow kisses (and more). He also loves to dance with his two older sisters and play outside.

First and foremost, we are thankful to God for being with us every step of the way on this continuous journey. We have also been blessed with amazing family, friends and therapists who have been our son’s biggest cheerleaders. Knowledge is power and my hope is that by sharing our son’s story, others will learn stroke awareness AND if they are blessed with a stroke warrior that they know they are never alone.

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Warrior Strong Story - Meet Paisley

5/18/2020

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Meet Our Pediatric Stroke Warrior Paisley! She had a stroke while I was pregnant with her and was having seizures at birth. She has damage in all 3 lobes on the left side of her brain - but this does not stop her! She just turned 5 and is doing great! We are blessed she has done so well and look forward to her going to pre-kindergarten this fall.

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Warrior Strong Story - Meet Freya

5/18/2020

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My pregnancy with Freya was complicated. I went into preterm labor that took almost 24 hours to stop completely at 28 weeks pregnant. Freya has IUGR during pregnancy.

Freya was born at 39 weeks.

The first few months we could not tell Freya had suffered a stroke during my pregnancy. Around 6/7 months we noticed she preferred her right hand and had low tone. By her first birthday we were seen by an aerodigestive team where they figured out Freya most likely suffered her stroke during my pregnancy.

Freya is beating all the odds! Although she sees neurology for her stroke, immunology, pulmonology, and ENT for other health problems she is thriving. There are some signs of stroke. Her left side is not as strong and she still has low stone. She suffers from muscle tremors. Freya also has sensory processing disorder and a speech delay, but none the less is the most happiest, bravest child and we couldn't be more proud.

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Warrior Strong Story - Meet Jace

5/18/2020

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Jace suffered from a perinatal ischemic stroke in utero resulting is Cerebral Palsy. He wasn’t diagnosed until 6 months old. It has been a long journey, but he is our family’s little pediatric stroke warrior.

We are so thankful for organizations like Pediatric Stroke Warriors who bring awareness to pediatric stroke. So many people out there do not know that this can happen to our babies and children.

Jace is overcoming so many obstacles that have been put ahead of him with a smile on his face, and a spirit of gold. He is my reminder to be brave, be strong, and be mighty. And as his mother, it has taught me to be an advocate for him and help others know about Jace and be aware of pediatric stroke, along with his family.

To anyone out there going through this similar journey, you are not alone. It is a long, but rewarding journey through and through watching our warriors grow. And hopefully with organizations like this one, the outreach will help bring more awareness and research for these little warriors!

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Warrior Strong Story - Meet Lorenzo

5/18/2020

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LJ is our rock and our super hero! He is 10 years old and the strongest person I know. He had a prenatal stroke and a right hemi :) At the age of 4 he developed epilepsy, even with all his meds and struggles he has daily - he always has the biggest smile for the world to see ❤️ He keeps me going and reminds me every day to NEVER give up!

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Warrior Strong Story - Meet Jawzlyn

5/18/2020

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10 YEARS!

10 years since a clot changed our lives forever.
10 years since we were unexpectedly educated in childhood stroke.
10 years since complete right side paralysis.
10 years since a 6 year old relearned to walk.
10 years since a 6 year old retrained her brain to write with her non-dominant hand.
10 years of seeing God's miracles one after another through you.
10 years since we unknowingly could have lost you.

10 wonderfully, hard, beautiful, transforming years.

10 years since a 6 year old girl changed our view on what perseverance looks like.

10 years...We love you our Sweet 16 Girl.

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Warrior Strong Story - Meet Thomas

5/18/2020

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We started noticing our son showing preference to his left hand around 6 months of age and thought it was so cute because we have a couple family members who are left-handed. But we were also concerned because he wasn’t rolling, or meeting other milestones. We didn’t realize the two were connected until he had his first seizure at 10.5 months old. An MRI confirmed that he had suffered a stroke in the neonatal stage of life. We were shocked! We had never heard of such a thing happening in little babies.

It will soon be the 3 year diagnosis anniversary date and it’s been quite a journey so far! We’ve been blessed with kind and patient doctors, therapists and support workers. Our lives have grown in so many ways because of the people we’ve met along this path. And we’ve had certain people intentionally step right into our lives and we love them so dearly because of their presence.

Our son is brave. He is fierce. And he is so loved!

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Warrior Strong Story - Meet Anthony

5/18/2020

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Anthony's Story

On June 21st, 2013 I gave birth to my precious Anthony. I had a very normal, healthy, textbook pregnancy. I didn't have bad morning sickness, just slight nausea and sleepiness during the first 12 weeks. At 28 weeks I got food poisoning and went to the ER and was given zofran and lots of fluid. That was really the only bump in the road I had during my pregnancy. At 39 weeks I was already 4cm dilated, I was induced at 40 weeks 6 days. I asked for my epidural about 3 hours after I arrived and after several attempts I was all hooked up. After that was finally done I was able to rest and things were going smoothly. At around 8 or 9 cm they noticed Anthony's heart rate was low so they put me on oxygen. Then when it was time for me to start pushing my doctor had to switch shifts which infuriated me because I was ready to go! Finally the other doctor came in and after only about 6 mins of pushing Anthony was out and crying and perfect. We did all the normal routines at the hospital, pediatrician came, he was checked out and everyone said perfect and healthy, and he seemed it!

The morning of day 4 we were at home, the whole evening before he wouldn't eat much and we noticed the twitching. It would go from one arm to the other, then to one leg to the other and even his head would twitch. I never imagined it was seizures that were happening, I never heard of such a thing and everyone at the hospital said he was fine. Plus when I thought of a seizure I didn't think of little twitches, I thought of someone shaking uncontrollably because that's all I've ever heard of. He had even seen our pediatrician the day before because we were concerned about some little red spots on his cheeks which the dr said it was fine and he looked like a perfectly normal newborn. I only assumed the twitches were his little nervous system figuring things out, that was until I was holding him and he began to twitch more often and he stopped breathing, his lips turned blue and his eyes looked blank. That was only for a couple seconds but it seemed like an eternity, we had no idea what to do or what was happening. So we went right to our pediatrician who witnessed the twitches and told us to go right to the ER at Le Bonheur Children's Hospital. So there we went, Anthony still wouldn't eat and was still twitching every few minutes. Our pediatrician called the hospital and told them we were on the way so as soon as we got there we were taken back where the nurses witnessed him twitching too and knew right away he was seizing.

Everything after that was a blur & literally felt like an out of body experience. How was this happening? My pregnancy was perfect, everyone said my baby was perfect, all of my friends and family have perfect babies. Why was this happening to us? I watched as my tiny little infant was poked many times for blood tests, given a CT scan, an MRI, a spinal tap an EEG and every other test you can imagine. I could hardly look after he was sedated & intubated, he looked completely lifeless. At this point I was hysterical. I learned quickly never to ask a nurse if someone is going to die, she couldn't give us an answer. We were moved up to the PICU and on the way there a nurse was squeezing a bag connected to my tiny newborn, that was literally breathing for him. Each squeeze his little chest would go up and down. Once we were in the room things were quiet. Anthony was hooked up to a billion things. He was put on keppra, an anti-seizure medicine, and monitored very closely to watch for swelling. The tests showed he had lost oxygen to the back of his brain that caused bleeding which caused the seizures and the next afternoon we were told it was all caused by a neonatal ischemic stroke. I still didn't really understand. As far as I knew strokes only happened to older people. I was NEVER told this could be a possibility for my baby, for ANYONES baby for that matter. So again we asked is he going to live? Is he going to be "normal"? Is he going to walk? Is he going to talk? Is he ever going to be able to do anything? When did this happen? How did this happen? They couldn't answer any of those questions. Only time would tell. Finally I asked, is there hope for him? Yes. Finally. I held onto faith and hope from then on out. As long as there was hope for my baby then I could breathe. I put all of my worries and fears in Gods hands and held onto that tiny bit of hope that there was for Anthony.

On the third day they began to take him off the sedation and I was able to hold him again and see his little eyes open. Anthony looking at me was a huge deal. The damage on the back of his brain was in the occipital lobe, the part of his brain that controls your vision. So if this stroke were to affect him it would more than likely be his vision. We were told by many doctors that babies brains have a lot of plasticity and damaged areas could basically "reroute". This was wonderful news. We were able to leave the hospital after 6 days and told to take it one day at a time and just to see how he develops and reaches his milestones, Anthony was kept on the anti-seizure medicine and over the next year we had many follow up appointments, 2 more EEGs, and a visit to a pediatric eye doctor that he amazed with how well all the nerves in his eyes looked after what he had been through. Anthony rolled over for the first time at 8 weeks old, crawled at 7 months and walked at 9 months, he was always such strong baby! He can spot tiny airplanes way out in the distance and read words from a distance that I can hardly see! He was taken off the seizure medicine at 14 months old and his neurologist told us he saw no need for anymore follow up appointments.

Anthony has amazed me every day since he has been born. He will turn 7 this June and start 1st grade in the fall. He is doing wonderful with learning to read and is so good with math and numbers. He loves playing with his cousins, playing video games, and making us laugh. He loves playing outside, he learned to ride his bike recently too! He is the silliest and boy and has so much love in his heart for others. I still hold on to that hope even all these years later and trust that God knows what he's doing and everything that has and will happen is for a reason. Every milestone, even now, for Anthony is worth over rejoicing. I wish more people were aware of strokes in newborns and were educated on what to look for. I wish I had been. I feel like this is a topic that should be brought up in preparenting classes and in those "what to expect" books. I've been told and read that many children have this happen to them but they don't have seizures, so don't know it's happened until they are older and notice weaknesses in an arm or leg or whatever else. I struggled for a long time with the thought of getting pregnant again, I was so scared that this would happen again. I also wondered if there's something wrong with me or if I did something wrong during my pregnancy that I didn’t even realize. We ended up getting pregnant again in 2017 but that pregnancy sadly ended in a miscarriage. I finally got pregnant again in 2018 and seeing Anthony be such a wonderful big brother to his little brother is the greatest blessing we could ever ask for. My testimony to others is to not live life in fear, trust in God because He will get you through the darkest storms. I'm so grateful for my healthy boys and all the wonderful nurses and doctors who saved my baby. I pray that every other family that has gone through a similar experience knows that there is ALWAYS hope and remember God is in control. <3

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Warrior Strong Story - Meet Stephon

5/18/2020

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Stephon was diagnosed at 18 months of age with Left Hemiplegia. We found out shortly after that he had a pediatric stroke around 8 to 9 months of age. He had met most of his milestones; however he was using few words and did not start to walk until age 15 months. I would ask the pediatrician questions about that and he told me not to worry. Stephon would walk and talk when he was ready.

I felt something was wrong when he started to walk and had a profound limp. I went back to my pediatrician and asked for a referral to a specialist. When I first heard that Stephon had a type of cerebral palsy, I broke down in the doctor's office and blamed myself. Did I work too much, not eat the right foods, not get enough rest, etc. The doctor had to reassure me that it was not my fault.

We got Stephon in OT and PT immediately after. We found out at age 3.5 years of age that Stephon had a hole in his heart. He had a 6 hour open heart surgery in July 2010. He suffered his first seizure 10 days before his 5th birthday. He was nonverbal until age 6. Stephon has participated in many therapies (SLP, OT, PT, aquatic therapy, and CIMT camp) to assist him in strengthening and using his left side more.

Stephon will be 14 on May 8, 2020 and continues to amaze us with his hard work, determination, strength, and beautiful personality. He does not want to be treated differently from his peers. He loves sports and participates in Special Olympics! He is such a great big brother, son, cousin, nephew, grandson, and friend. WE LOVE YOU STEPHON! YOU ARE OUR WARRIOR!!

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Warrior Strong Story - Meet Brady

5/18/2020

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Brady was diagnosed with a frontal parietal stroke on the left side of his brain a few months before his 2nd birthday. He was always a happy baby however at about 5 months we noticed he constantly clutched his right hand/thumb in a tight fist. His pediatrician kept telling us he would “grow out of it” however at a 15 month checkup we were finally referred to an orthopedic specialist.

At first we were told it could be a skeletal or muscular issue. After numerous x rays and finally an MRI we received this unexpected diagnosis. At the time my husband and I were both shocked and devastated. Next came numerous blood tests, genetic tests, and more specialist visits (cardiologist and hematologist) to determine what caused the stroke and when. All tests came back inconclusive and to this day we have no idea when the stroke occurred (in utero, during delivery, or early infancy) or why.

All these years later the why, how, or when doesn’t matter as much as what we have done to help our son thrive. We immediately were started with occupational, physical, and speech therapy every week. At age 3 Brady no longer needed speech therapy but the occupational and physical continued. His therapies also continued into school with our state’s IU. Brady worked so hard, never complained, and never gave up!

2 days ago I received the amazing news that he no longer needs these therapies on a weekly basis but will only meet with his therapists once a month for maintenance. While he still has many obstacles to face, I cannot be prouder of how far he has come. Brady never feels sorry for himself or thinks he is different than any other kid. He IS a pediatric stroke warrior and my hero.

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Warrior Strong Story - Meet Zachary

5/18/2020

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Zachy was only three when he had his four-wheeler accident. They weren’t wearing helmets and when the four-wheeler flipped over he was thrown to the side and it landed on him. He died twice that day.

Once we were at Children’s Hospital in Denver he was in the PICU for a month. During that time Zach suffered two different strokes. They didn’t expect him to walk or talk. Four months later we were able to go home.

Lots of years and lots of surgeries and therapies later he is a happy little ten year old boy! He is our miracle and we thank God everyday for him. Wear your helmets, please. Zach was lucky.

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Warrior Strong Story - Meet Jett & Payton

5/18/2020

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Jett Smith from Oklahoma & Payton Downs from Texas have both suffered strokes do vertebral artery dissection (Bowhunters), they have both had to under go spinal fusions due to this condition. Our families both met after we were connected through Pediatric Stoke Warriors!

They have a unbreakable bond & have become such good friends. This photo is of them today, May 6th 2020, Payton 4 years post stroke & Jett 3 years post stoke!

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Warrior Strong Story - Meet William

5/18/2020

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Up until he was 18 months we had no reason to think anything was different about our first born. He met most of his milestones right on time. When he wasn’t using his left hand as much we mentioned it and was referred to specialists. Within a month he was diagnosed with left hemiparesis (mild cerebral palsy) due to a perinatal stroke.

They told us perinatal means he may have had the stroke just before birth, during, or soon after. That was gut wrenching, not knowing when this happened.

We are 6 years post diagnosis and he has surprised he all with his drive, passion, and ability to play basketball. He is smart, capable, and has never let any limits that have been placed in him stop him! We had no idea 6 years ago what his future would look like and now we spend our lives giving people the hope we so needed during that time.

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Warrior Strong Story - Meet Raelyn

5/18/2020

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Raelyn had her first stroke at 2 months old, followed by a seconds stroke 2 weeks after. She was then diagnosed with moyamoya disease. We are unaware what damage the strokes have caused, but she amazes us every day with the obstacles she overcomes!

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Warrior Strong Story - Meet Claudia

5/18/2020

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Our daughter, Claudia, had a stroke on July 31, 2017 when she was 8 years old. She was perfectly healthy one minute and suffered a stroke the next. Thanks to our babysitter, we were notified right away and the paramedics were called. The responding EMT immediately realized that Claudia was suffering from a stroke. We were dumbfounded. How could a perfectly healthy 8-year old child have a stroke? Those only happen to older people, not children, right? That is what I said to the EMT, only for him to tell me "As long as you have blood pumping through your veins, you can have a stroke".

We were in the ambulance and on our way to Cincinnati Children's Hospital, one of the best hospitals in the world, within 1 hour of her first symptoms. After a brief exam, they knew she had a stroke. We were immediately taken into the trauma unit, and Claudia was surrounded by doctors and nurses. Everyone was asking her to do the same stuff - try to say some random words, try to lift your arm, try to follow my finger with your eyes - and she was failing all of those tests. Her speech was really slurred. Her smile was was drooped, she couldn't lift her right arm, and she had a terrible headache. She later said she felt like she was being hit in the head with a hammer.

Claudia was taken in for a CT scan and then an MRI. Then, another CT scan. The stroke was confirmed, but the cause of the stroke was not. The CT scan and the MRI were showing conflicting information regarding her left carotid artery. We knew where the stroke occurred, and we knew that the vessel that caused the stroke was fed from that carotid artery, but we didn't know why. The CT scan showed a possible dissection of the carotid artery, but the MRI did not. We needed to know why. The two big questions with a stroke are "What caused the stroke to happen" and "What do we need to do to prevent it from happening again". She was placed on a heparin (blood thinner) drip, and we were admitted into the ICU. A place we never thought we would be. The Critical Care Unit. The neurologist put in an order for her to have neuro checks every hour, 24 hours a day, a spinal tap, and a cerebral angiogram. We still needed to know why it happened. If it was a dissection of the carotid, it would be treated one way, if not, another way.

After the angiogram, ,it was discovered that the carotid artery did not have a dissection, which was great news. Now, how were we going to treat it? The neurology team had recently discovered a study that had come out of Switzerland just 3 months prior that showed progress in treating this type of pediatric stroke with high-dose steroids, along with blood thinner, and for Claudia, we also had to elevate her blood pressure. So that was the plan. We started the steroids, and continued checking her every hour 24 hours a day.

After a 5 night stay in the ICU, Claudia had improved enough to move to the main neurology floor!! We were so excited. She was like a Rockstar! The team of doctors was so excited to see such amazing progress in just a few days. This small study that they discovered, and we agreed to was working. Just 3 days after she was moved to the main floor, we were released from the hospital. Eight days after she had a stroke, we were home. Her official diagnosis was "Focal Cerebral Arteriopathy. My husband and I had to learn how to give her blood thinner injections, which we did twice a day for almost 7 months. She was on steroids for several weeks, and we gradually stepped down the blood pressure medicine over the next few weeks. That was it.

She had to do some therapy - mainly occupational, but for the most part, she was back to herself. She had some minor weakness in her right arm, her handwriting was different, and she no longer had any interest in reading. After some therapy and testing, we discovered that the part of her brain that was affected by the stroke was where her reading comprehension was stored. Our once avid reader no longer wanted to read. AT ALL. What once came so easily to her no longer did, so she didn't want to do it. She could read the words, but couldn't comprehend what she had read. So, we started all over. I started reading to her again like I did when she was a baby. Before we knew it, she started asking if she could read to us. Then, next thing we knew, she was back to reading just like before. Her brain just had to reroute, and find a new place to go for reading comprehension. The brain is an amazing organ!

Now, here we are, almost 3 years later, and Claudia is 100% back to where she was before her stroke. After the blood thinner injections, she was on an aspirin regimen for another 18 months, but on August 1, 2019, she was taken off of that too. She is on NO medicine and has NO therapy. Her recovery has been nothing short of miraculous. We signed her up to be part of the international pediatric stroke study, and she goes to the stroke clinic once a year. That's it! And there is not a day that goes by that we aren't grateful for everyone who made that happen. Our babysitter for acting SO fast, the EMT who prepared the hospital for a pediatric stroke victim, the incredible team of doctors and nurses at Cincinnati Children's Hospital, and of course, the families that allowed their children to participate in the stroke study that came out of Switzerland. We are so grateful to those families!

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Warrior Strong Story - Meet Abram

5/18/2020

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We found out right before Abram's first birthday that he did, in fact, suffer a stroke. Our lives were thrust into a world of every kind of therapy, teams of doctors and specialists.

We joined many support groups and along the way found Pediatric Stroke Warriors.

Abram has come a long way, and has a long way to go, but with the support of families like ours it isn't as hard as it was doing it alone. Our support community is the best. I always encourage everyone I meet that is just finding their way into the stroke world to join the support groups. You are never alone! We are in this together for our stroke warriors!

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Warrior Strong Story - Meet Olivia

5/18/2020

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Fifteen and a half years ago me and my husband were blind sided with the news that our baby girl had a stroke before she was even born! We had never heard such a thing. Nobody we knew had heard that this could even happen! We felt so alone. We were told, she may not walk until she’s 2 or older, she may have other cognitive issues...on and on and on. We were just speechless. No where to turn, nobody to talk to.

We stumbled through the first 8 years without any support, except from the PT, OT and doctors in Seattle. Then we found CHASA, and that led us to Pediatric Stroke Warriors. Our lives for ever changed!

Our mission now is to spread the word that kids, babies and even unborn babies can have strokes! My biggest pet peeve is when I tell people she is a stroke survivor, I hear “I didn’t know that could even happen!” I’ve even heard it from Nurses, and Doctors!! Everyone needs to know.

Olivia has had multiple tendon transfers, heel and arch reconstruction and hours upon hours of PT. She suffers from anxiety, and all the other things teenage girls go through. But she is our warrior!

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Warrior Strong Story - Meet Isaiah

5/18/2020

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Long story short, my son was born premature. I was diagnosed with preeclampsia ending up having him early. Skip to him being 6/7 months I started noticing him neglect his right side. I immediately when to his pediatrician which they started physical and occupational therapy. We did notice some improvements, but therapists suggest to see if maybe we could get a referral to a neurologist. It wasn’t until 15 months of age where we got referred to a neurologist (persistency is key!). We were scheduled an MRI and confirmed a grade 4 hemorrhage! Luckily he was already doing therapies and we just added speech to our list!

He is doing AMAZING! I’m so thankful for our therapists, doctors, support groups we have joined, and family for his amazing development!

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Warrior Strong Story - Meet Piper

5/18/2020

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Meet Piper! Piper Strong!

My pregnancy was pretty uneventful. No gestational diabetes, no high-risk pregnancy, no complications, just…. uneventful.

We had just closed on our home and moved to a new town that was roughly an hour away from my doctor and hospital. This truly worried me and gave me such an uneasy feeling. About half way through my pregnancy, we decided that we wanted to be induced. We had many people ask why we would do such a thing and not let baby girl come when she is ready. I did my research on being induced and there were definitely mixed feelings. We really didn’t have an answer to why, but decided to pursue it knowing deep down that it’s what we wanted.

At 39 weeks and 1 day we headed to the hospital! We were ready to meet our baby girl! About an hour after arriving at the hospital and getting prepped, my doctor came in stating that she had been watching baby’s heart rate and it was higher than she liked. I received something for the pain and the rest is honestly a blur. I was told I was going to need an emergency C-section due to baby’s heart rate and that we were going to meet her sooner than expected! From that point on, all I remember was the shaking, the uncontrollable shaking! When Piper arrived, she was as perfect as can be! She ended up having a little fever due to an infection but she got over it quickly! And there she was. My perfect baby girl that I had been dreaming about for so long! I was in Heaven, My husband was over the moon, and our family couldn’t have been happier for us!

When we got back to our room, we tried to settle in the best we could. Piper would scream at the top of her lungs out of nowhere for about 30 seconds and then stop. She would scream to the point where she would get beet red every time and this happened over and over. Eventually the nurse took Piper to the nursery and gave us time to rest since we had her so late at night. The next morning, Piper came back into our room and was still screaming every 5 minutes or so. I thought, “Is this really normal for a newborn? It must be. No one else seems concerned.”

When it came time to give Piper her first bath, Piper started screaming like normal but this time instead of turning red, she was blue. Completely blue and she wasn’t breathing. She started seizing and she was rushed to the NICU before we could even understand what was happening.

Our daughter stayed in the NICU for 18 grueling days as doctors worked around the clock to figure out why she had those seizures. Piper had two MRI’s, an EEG, stomach ultrasound, and an echocardiogram. She was hooked up to a feeding tube, IV, and a breathing tube. We were in absolute pain as there was nothing we could do to help. After a lot of testing, the doctors eventually found that Piper had a left sided stroke sometime in utero.

This broke me.

All I felt was guilt. More and more guilt. It took me a long time to deal with this guilt and it truly never goes away… The crazy part is, is that if we did not schedule to be induced that Sunday night, the doctors don’t know if Piper would be with us... God sure works in mysterious ways!

After 18 days, we were able to take Piper home and begin the journey of PT, OT, Infectious Disease, Ophthalmology, and Neurology appointments. Fast forward Piper is almost 2 and is doing amazing!! She has an outgoing personality, and for sure shows her personality! Piper has officially been diagnosed with spastic hemiplegia secondary to her stroke. She has slight weakness and tight muscle tone on her right side, but so far that’s it! If she has more issues down the road, we will work with it and help her the best we can! She is my biggest hero and she has overcome something I didn’t even know was possible.

Piper is our perfect, spunky little girl and we are so blessed!

The Harms Family

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Warrior Strong Story - Meet Solomon

5/18/2020

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“Hi.”

I thought it’d be appropriate to start out our story with a typical Solly greeting: “hi.”

It’s such a simple word for a 5 year old to say, but in Solly’s case, he wasn’t supposed to ever be able to say “hi” or any other word. He wasn’t supposed to see, hear, eat orally, or be independently mobile. At birth, Solomon - known to all as Solly - had 3 massive strokes which destroyed over half of his brain. It’s a miracle that he can say “hi”. It’s a miracle that he’s alive. Solly is a pediatric stroke survivor. I’m Camie, Solly’s Mom, and this is our story.

Rewind to October 9, 2014. It was 4 a.m., I was 39 weeks pregnant and my water just broke. I was in the worst pain I’d ever felt. I’d had a very easy pregnancy and was mentally ready to give birth to my first child - ready for the contractions, ready for the pain, and ready for the joy on the other side. I knew the pain I was feeling was not normal. We called our doctor and rushed to the hospital. After being admitted to Labor and Delivery and hooked up to the fetal monitor for just a few minutes, the doctor came into the room and said, “We need to deliver this baby. Right now.” Our baby was in distress and his heart rate was dropping fast. There wasn’t time for Mike, my husband, to change into scrubs and come back with me for an emergency cesarean. In fact, there wasn’t time for anything. The doctor quickly put me under to deliver Solomon, who was not breathing.

Fortunately, the hospital doctors were able to revive him within a short amount of time. We didn’t deliver at a hospital with a neonatal intensive care unit, so Solly was admitted to a special care unit for further monitoring. They assured us that once he was able to regulate his body temperature, he would be moved into our room.

Two days passed. During those two days, Mike wheeled me into the nursery for all of Sol’s feedings, so we got to spend some time with him, but we were anxious to have him in our room so we could snuggle and bond with him. The attending doctor called our room to let us know that he seemed to be on the mend, his body temperature was stable, and she was discharging him to send him up to our room.

Five minutes passed. She called again.

Solomon had rapid eye movement. The doctor suspected he was having seizures and she was calling Georgetown University Hospital to send for an ambulance to transfer him to the NICU there.

Our hearts dropped. I was so upset that I couldn’t speak, tears falling uncontrollably, I actually felt like I was in a nightmare. I begged myself to wake up from it. I had an easy pregnancy. My baby was healthy the entire time. This couldn’t be happening.

After we were transferred to Georgetown, the neonatologist performed an MRI on Solly which confirmed that he’d had multiple strokes and his brain was swelling and covered in blood. The strokes were big enough that his brain had shifted to one side of his head. The prognosis was not good - they suspected he’d live his life in a vegetative state. It was a nightmare.

They hooked him up to oxygen, gave him a nasogastric feeding tube, and kept him on a warmer. They also attached what seemed like a million sensors on his head for a continuous electroencephalography (EEG) to monitor his seizures.

And then we waited. For days, we were unable to hold him, so we sat next to him, holding his hands, talking to him, reading to him, letting him know that we were there.

As the days in the NICU passed, things began to look up. After a couple of weeks on a heavy dose of phenobarbital, the doctors controlled his seizures and switched him to Keppra. He began to maintain his body temperature and breathe on his own. One of his nurses, Judy, began introducing him to a pacifier. At first, he let it sit in his mouth, but after a few days of work, he started sucking on it, and then he learned the suck-swallow reflex needed to eat orally.

After exactly a month in the NICU, we were discharged. As we were getting discharged, the neonatologist performed another MRI that showed the brain swelling had gone down and the blood receded. His brain was back at midline. The doctor confirmed that Solly had had three massive strokes and suggested that Solly would have some challenges, specifically with his gait, speech, and motor planning. However, he also said that the “MRI did not match the child”, meaning that had Solly had the same strokes at an older age, his outcome would have been drastically different. Because he was so young and his brain was so plastic, his brain was already rewiring itself, making it so difficult to predict just what his life would look like.

Fast forward to present day. Solly is a smiling and loving 5 year-old. He’s typical in that he’s a jokester, he wants to be independent, and he loves to be WILD. He gives the best hugs, likes to pick on his little sister, Bea, and laughs at any noise that sounds like a fart. As doctors predicted, he is delayed in all areas and when he turned 1, he was diagnosed with triplegic cerebral palsy, meaning his right arm, both legs, and trunk are weak and struggle to do what his brain asks of them. He isn’t walking (yet), has few words, and is totally dependent on us to do everything for him. While we started a standard regimen of physical and occupational therapies in the NICU and continued those therapies once we were discharged, once Solly hit 2 years old, we realized that Solomon was no longer responding to typical PT and OT appointments. We began exploring alternative therapies like Anat Baniel Method, Hyperbaric Oxygen Therapy, Hippotherapy, Aquatic Therapy, and intensive models with great success. We’ve seen so much progress in his abilities over the past couple of years thanks to these therapies.

We don’t know what the future holds for our Solly, but what parent knows what the future looks like for their child - typical or not? All we know is that every day that we spend with Solly is one filled with love, happiness, and hard work. We believe that the sky is the limit for Sol and that he will do everything on his own timeline. Solly has already overcome so much in his life, he’s changed our lives for the better, and there is no doubt that he will have a big impact on the world!

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