Worthy Wednesday: Streak for Stroke

While pregnant with twins Kim had preeclampsia which caused Mikey to have a stroke in utero.  Read about  Mikey who now has Cerebral Palsy and how he and his family are trying to “Streak” for Pediatric Stroke Awareness.  See how they are raising money for CHASA to help other kids with CP

Let me introduce myself by letting you know I’m a what-if kind of gal. I go through all kinds of ridiculous scenarios in my head to help prepare myself for what may or may not happen.  Let’s just say I have my actions and reactions all planned out in my head for a variety of scenarios from the mundane to the exhilarating to the horrific.  For example, I know what I’d do if there was a fire in my house, if I won the lottery, and if there was a zombie apocalypse.

But the road to motherhood has brought on a whole new list of what-ifs that I had no idea either existed or that I should be thinking about.  PCOS?  IUI?  IVF?  Giving myself hormone shots?  Incompetent cervix?  Cerclage?  Bed rest for 4 months?  Pre-term labor?  At-home contraction monitor?  Preeclampsia?   Geez…nothing could have prepared me for all of those what-ifs.  But somehow my husband Adam and I made it through relatively unscathed and we had two beautiful boys–our little miracles.

Once Michael and Brandon were safely at home, all was well again.  Everything was perfect!  I could idly go through ridiculous scenarios in my head again, right?   I mean, as a first time mother I thought about all kinds of situations that could occur with the babies so I was prepared.  But absolutely nothing could have prepared me for one situation that blindsided us and changed our lives forever.

When Mikey was a few months old we noticed he was only reaching for his toys with his left hand.  His pediatrician joked that we should teach him to box or pitch since he’d be a lefty.  Eventually we decided handedness is not usually determined so early and we had him tested with an MRI.  The results revealed that our sweet little baby survived a stroke before he was born.  A STROKE!  Our baby had a stroke.  Who knew this was even possible? There was no way I could have prepared for this with my what-if game.  As a result of his stroke and the damage it caused to the left side of his brain, Mikey has right-sided hemiplegia, which is a form of cerebral palsy.  He does not have much use or awareness of the right side of his body.  My baby has been through more tests and has seen more doctors than a boy his age should ever have to endure.  We’ve seen types of doctors I’ve never even heard of until now.  Mikey has weekly physical, occupational & speech therapies to help build new pathways in his brain to gain use of his right side and to help him communicate better.

It is sometimes difficult seeing Brandon developing normally right beside Mikey because it really highlights where his delays and challenges are when compared to a non-affected child.  But Brandon is Mikey’s biggest motivation–he really works hard to keep up with his brother. Mikey can now chase Brandon around the house.  It’s a beautiful sight seeing our boys run and play, especially when we weren’t sure if Mikey would ever walk. Mikey is accomplishing milestones in his own time and in his own ways, and we celebrate one when it comes because it has come with such hard work and determination on his part.   Mikey is our hero and we know he will continue to work hard and accomplish so much that most of us take for granted.

May is Pediatric Stroke Awareness Month.  Most people are not aware that babies can have strokes–both before and after they are born.  The type of stroke Mikey had, perinatal arterial ischemic stroke, occurs in 1 out of every 2800 live births.  Some babies do not survive their strokes, but the ones who do survive will have a lifetime of challenges ahead of them.  Pediatric stroke survivors may develop cerebral palsy, epilepsy with seizures, and visual, hearing, cognitive and behavioral problems.  Children often receive occupational and physical therapies for decades to help them learn functional skills of daily living and increase movement if they are experiencing motor difficulties. There is no way to fully prepare yourself and your family for a diagnosis such as this, but I am hoping to spread awareness and to build a support community who at least understands why my little guy doesn’t walk perfectly and why he needs a brace on his leg, why he doesn’t use his right arm and hand very much, and why he isn’t talking as much as two-year-old should.

Children’s Hemiplegia and Stroke Association (CHASA) in an organization that has been a real lifesaver for my husband and I.  It provides us with a network of families who understand exactly what we are going through because their little ones suffered strokes as well.  It is incredibly comforting to know we are not alone in this situation and having somewhere to find support and information is invaluable as we are dealing with a situation nobody could have prepared themselves for.  For Pediatric Stroke Awareness month, CHASA developed a program called Streak for Pediatric Stroke. The idea behind it is if these little stroke survivors can do some of the difficult things they do every single day of their lives, then we can do something that challenges us to honor them for a streak of 31 days.  My husband and I are committing to a streak of eating well and walking or jogging for at least one mile per day for the month of May and beyond.  Committing to doing something every day that is difficult for us will remind us what a rock star Mikey really is.

Won’t you join us in our streak?  Do something for the 31 days in May that challenges you. We would be so thrilled if people would take this on to honor Mikey and little ones like him and acknowledge the difficulties they face every day.

Also, please consider supporting the organization by making a donation to CHASA in Mikey’s honor.  Money collected is used to directly help families with programs such as an orthotic grant program which help families in need purchase necessary orthotic braces that help children learn to walk, organize community gathering where families can meet to create a local support network,  and provide scholarships to young adults with hemiplegia. CHASA also supports pediatric stroke and hemiplegia research.

 

 

And just think of all the what-if scenarios I can drum up in my head on my daily walks this May!  Being the proud mommy of a stroke survivor, I feel like our family can take on anything!

https://www.firstgiving.com/fundraiser/kimmory/streak-for-pediatric-stroke-2013