Super Beans - Emma's Story

I was only 6 months pregnant on Thursday August 13^th, 2009 when I went for my regular doctor check-up.  I told my husband not to come as it was a routine check-up so he didn't need to leave work, I was wrong.  The doctor found that I had Protein Induced Hypertension and our little girl was underweight, I needed to go to the hospital right away and be admitted for close monitoring. I called my husband and he came immediately.

I saw the specialist, Dr. Butt, a few days later (she had been on vacation) for a special ultrasound and it was discovered that along with the high protein and our little girl being underweight, there were times of absent flow in the umbilical cord.  Dr. Butt was very blunt and said that I had to stay on strict bed rest and see her everyday because once she saw "reverse flow' as she called it, I would need an emergency section as the baby would go still born very quickly.  That had to be one of the scariest moments I thought in my life.  I made my husband stay with me every night, I was so scared and wanted him by my side.  For the next month I was closely monitored and I was even transferred to a different hospital for a few days when Dr. Butt went on vacation.

On the morning of September 9th, 2009 I was wheeled to Dr. Butt's office for my usual ultrasound, but during the ultrasound Dr. Butt was sure she saw a slight period of "reverse flow". She sent me back to my room and said be prepared.  Two hours later she checked again and sure enough she saw the "reverse flow" and had me immediately taken to the OR. My husband and I had a hard time grasping everything that was happening.  All I could think was I am only 27 weeks and she is underweight. Everything was a blur. We were so scared. Then at 3:53 pm we heard the most beautiful sound, our 1 lb 7 oz baby girl crying. Everyone was shocked because they did not expect her to come out so alert. The first 24 hours she did great, she was only on CPAP and doing well.

However, after about 24 hours everything took a turn for the worse and she quickly had to learn to be a fighter.  She developed double pneumonia and double pneumothorax and needed to be put on life support with a chest tube.  We couldn't see her for hours while the nurses and doctors worked on her.  Once we were finally able to see her, it was very scary seeing all the tubes connected to her, helping to keep our baby girl alive.  The next 9 days were rough as we watched the machines keep her alive.  The hardest part was having to go home every night and not being able to take her home.  On September 19th they removed the life support, but still required CPAP but she was showing improvements.  We had to be very careful with her and sterile as an infection could kill her.  She spent 3 months in the NICU gaining weight and strength and not being dependent on oxygen.  On the day of discharge we were so happy but nervous and scared, as she wasn't a typical baby going home.  We were told to keep her out of public places because if she caught anything in her lungs she would probably not survive it.  So we sheltered her a lot, but were happy to have our baby home.  It was rough though.  For the first 2 months, anytime she had a bottle (breast milk never came in) she would choke at times and stop breathing and start to turn blue - so we would have to pat her on the back and stimulate her to snap out of it.

Just when we thought things were good.  We discovered through appointments that she needed physio therapy as she was very stiff.  Over a two year span she responded well to it and eventually was discharged.  However, she required extensive work with OT and Speech.  At the age of 2 all she said was mom and dad and we were concerned along with the doctor.  She spent 2 1/2 years with extensive OT and Speech combined visits working on language and vocabulary skills. She was finally discharged earlier this year.  Her paediatrician calls her a miracle baby and I truly believe she is.

This year, our little girl, who started out at 1 lb & 7 oz and has had to fight to get where she is, started Kindergarten.  She is on par with all children her age and you would never know that she struggled so much for the first 4 years of her life.  She is a very happy child and as parents we are thrilled with the little girl she has turned out to be!

Super Beans - Lynnea's Story

Lynnea is a beautiful and bright little girl who has always been so happy and full of life. In October of 2013 she started showing signs that something was just not right, her activity levels dropped and she was much more tired than usual. It was not until late in October that a little tumble with her brother sent her into the ER, she seemed to have injured her leg and we had never heard her scream in such pain before. We rushed her in to the emergency and after a two hour wait she was up and running around again so we took her home. That evening after she awoke from her nap that same pain was back and she could not bear weight on her leg. 

In the weeks that followed we had seen several doctors who diagnosed the pain as a sprain. Seeing her deteriorate so much and her no longer being able to walk we begged for x-rays, the ER doctor was quite astonished that the level of pain Lynnea was exhibiting could not be explained and the x-rays showed nothing. The ER doctor immediately referred us to a pediatrician and Lynnea was seen that same afternoon. After combing through Lynnea’s medical history and all the events that had led us up to that day the Pediatrician ordered a simple blood test. The blood test revealed the answer we were looking for and it was not anything we had ever expected.

Lynnea was air lifted to the BC Children’s Hospital immediately, it is a 5 hour drive from our home town. We arrived there in the early morning hours on November 11, 2013 completely exhausted with our emotions in over drive. No one had been able to explain what was happening with Lynnea or what her test results revealed but when I saw we were being brought to the Oncology ward the terrifying reality set in. I spent hours talking with Lynnea’s new doctor and she explained that Lynnea’s blood test reviled a Type of Leukemia and after a series of tests it would turn out to be Acute Lymphoblastic Leukemia. Lynnea’s cancer cells were found both in her peripheral blood and her spinal fluid. Lynnea’s blood counts were at such a critically low level and she needed multiple blood transfusions before she could even begin chemotherapy. Lynnea was diagnosed just 2 weeks before her 2nd Birthday.

At the age of two and a half she has already undergone more than anyone should, she has had multiple surgeries and surgical procedures. Lynnea has had blood work and chemotherapy treatments every single week at minimum since diagnosis. These medications have left her almost unrecognizable at times, they have made her body swell and loose weight, caused pain and nausea and for her to lose her beautiful brown curls. There is not a single day where she has not been required to take some form of medication, many of which have serious side effect and required a great deal of planning in order for her to take them.

Throughout all of this she has managed to keep a vibrant and incredible smile on her face while growing into an intelligent and happy little girl. Although she is still very limited in her activities she continues to grow into her own true self. She still had 18 months of Chemotherapy treatments ahead of her and many trips to the BC Children’s Hospital in the next few years. This past few months have been extremely difficult to put it mildly and we would never have made it this far without the generosity of our community and loved ones. I wanted to provide a safe place for people who still continue to support her in her journey. This is proving to be far more expensive than anyone could have predicted with all the travel and unforeseen medical costs that are not covered. We are truly grateful to all her supporters and followers who have allowed me to spend every moment I can caring for her.

Lynnea loves clothes and the Peekaboo beans lines have meant the world to her, she love to dress up and it even makes her feel better.

Click HERE to find out more and support Lyneea. 

Super Beans - Cohen's Story

My name is Tammy, and I'm a mom of 3 boys. Cohen is our youngest and previously healthy son.  On August 20, 2012 he was admitted to the Stollery emergency with a high fever, vomiting, severe lethargy and 2 different types of rashes.  We thought he had the symptoms of meningitis, but it was a severe blood infection.

By the late evening of August 22, 2012, Cohen was admitted to the PICU.  We were told that Cohen had suffered 8-10 strokes and the infection was further attacking his heart.  August 23, 2012 was the day our little Cohen had open heart, by-pass surgery.  And it was a success.  The surgical team was able to take off the growth, but they needed to replace one of Cohen's heart valves as it was severely damaged by the bacteria.  Cohen will have to have at least 2 other heart surgeries as he continues to grow to replace the valve.  As Cohen started his recovery in the Cardiac section of the PICU, he seemed to be improving.  He was still on many IV antibiotics and drugs, but he had started speaking again and had about 8-10 words before he was moved to the ward and out of PICU.  

I'll never forget the night of September 7, 2012.  The Rapid Response Team took Cohen back to PICU.  Cohen had had an aneurysm and his head was swelling from cerebral spinal fluid, still another aftermath of the blood infection.  Cohen had a tube inserted into his brain to drain this fluid and relieve the pressure.  He had also suffered seizures.  Soon after, doctors sent Cohen in for an angiogram and glue was inserted into his head to hold the aneurysm in place to prevent further brain damage.  The aneurysm burst under the pressure of the glue, but the glue held the clot in place.

Just as this seemed to have been brought under control, Cohen then developed vasculitis and was put on high doses of steroids.  This seemed to have cleared up so Cohen was taken again for another angiogram to get a better look at his vessels and arteries.  We never thought he'd have an allergic reaction to the angiogram dye, especially since he's already been exposed to this only a week before.  Cohen had an anaphylactoid reaction.  Another completely unexpected and horrific event.  His run of “very bad luck” never seemed to end and he couldn’t catch a break.

Throughout this second stay in PICU, we still weren't sure how Cohen's vision was affected and what exactly he could see.  We knew his right side was severely affected by his first set of strokes and now the left side of his body was severely impaired from the aneurysm.  If that wasn't enough, we were extremely worried as Cohen hasn't said a word or acknowledged any sort of understanding for weeks after the aneurysm.  Because Cohen still required the tube in his head to help drain the fluid, our options were fairly limited and it looked like Cohen would need a shunt.  So, after many conversations with our neurosurgeons, we tried a 3rd ventriculostomy surgery.  Although initially his pressures looked like they were dropping, Cohen ultimately still had to have another surgery for the VP shunt placement.

On November 4, 2012, Cohen was discharged from the Stollery after 77 days, 55 of which was in PICU.  Cohen is truly our miracle child. Our ultimate goal for him is to be able to walk again and I know some day that will happen, just not for a while.  But for now, he is a happy child learning to move again on his own terms and in his own ways.  Cohen is very motivated, stubborn and determined.  All amazing qualities to have for someone who recently became very ill, recovered and is now on a new journey of rehabilitation.

Way to go Cohen!  You truly are a SUPER BOY BEAN!! 

Super Beans - Ella's Story

Ella was welcomed into her family in the early summer days of 2009.  She came with some resistance but with her chin up – a reoccurring theme in the years to come for Ella and her family. 

The first time Krista held Ella she was overcome with joy but had a lingering concern for her beautiful new child.  Her motherly intuition had been tipped off when she first gazed at Ella’s gorgeous almond eyes.  Doctors and nurses continually told the family that Ella was a perfectly healthy newborn but her struggles couldn’t help but be noticed that she was showing signs of Down Sydrome. 

Finally on day three of their prolonged hospital stay, Ella’s doctor admitted to believing there was a possibility of Down Syndrome and referred them to a specialist for further testing.

As a parent it breaks your heart when your doubts about your child are confirmed.  All you want is somebody to tell you that there is nothing to worry about and that your child is perfectly healthy.  For Ella’s family, their hearts were heavy when the doctor started talking about specialist appointments, possibilities of heart abnormalities, trips to Children’s Hospital, and everything that comes along with a diagnosis.

A visit to Children’s Hospital was not the answer.  The genetic specialist told the family that usually after the physical examination there is a 90% yes or no confirmation but Ella’s case still left the doctors uncertain.  Ella had the typical folded over ears, palmer crease, and of course, her eyes but she had better muscle tone, was more alert, and there was no history of genetic disorders in the family.  Ella had to undergo chromosome testing, which finally confirmed that she had an extra chromosome resulting in Down Sydnrome or Trisomy 21. Since children with Trisomy 21 carry an extra copy of the 21st chromosome, it means that they have an excess of any genetic material contained in it. For this reason, children often have a flattened bridge, congenital heart defects, physical and intellectual developmental delays, along with many other potential health risks. It was discovered very early in Ella’s life that she had a hole in her heart. Thankfully, it was not too debilitating and would most likely close on its own (which it did).

It hasn’t been easy, but four-year-old Ella carries the courage many of us can only hope for in her healed little heart. She has the resilience that only comes through a determination to overcome adversity and stereotypes. She has people who believe in her, give her the opportunity to fulfill her potential, and who not only want her to succeed but who know she will succeed. And when you have a child with special needs they are not to be taken for granted. They are a rarity in the world that focuses on the ability instead of the disability. It is because of encouragement from her cheerleaders and her own hard work that Ella is able to live a very full life. She goes to preschool, has friends, dances, runs, makes art, sings, laughs and fights with her older brother.  She never stops playing in the midst of her struggles.  In September, Ella will start kindergarten – at a French Immersion school.

Ella is one amazingly inspiring Super Bean that we can all learn from!

Super Beans - Jacob's Story

When we read the story of what Jacob and his family went through, we knew right away that he was a true Super Bean.  His spirit of play never stopped through his diagnosis of a brain tumor the size of a tennis ball.  He played hockey and soccer, and pushed through his symptoms everyday just to do what he loved doing.  The undiagnosed tumor was taking up a quarter of this six year olds brain causing severe headaches, which had been passed off as migraines by many experienced doctors.  He even had troubles pushing and lifting his right leg while playing hockey, depending on his stick for support; but nevertheless, Jacob kept playing!

Finally, after the whirlwind diagnosis, Jacob had to undergo an emergency surgery the following day to remove the tumor.  This is any parent’s worst nightmares come true.  Watching your child getting wheeled into brain surgery is not something that any parent, or child, should have to go through.

Over the next couple of days, a team of doctors and nurses monitored his progress and were given the positive news that the tumor was benign!  Even with this optimism, the recovery was still a windy road full of frustration, courage, tears, laughter, anger, but mostly determination.  There were days when Jacob could not walk and felt like he would never walk again, but once he made up his mind, he went for it.  He was rearing to go, so much where his first day of walking on his own two feet he took it upon himself to battle his father in a backyard water fight!

Jacob’s spirit of play was only growing in the following weeks.  He quickly returned to camping, sports, school, and of course, playing with family and friends.  Throughout the struggles Jacob had to go through, he had a special light that kept shining and kept inspiring.

This is a real life hero. This is one amazing Bean!