My Journey with hydrocephalus and Cerebral Palsy

Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.

I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.


From Wikipedia, the free encyclopedia:

Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.

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Monday, December 11, 2023

Adaptive Programs & Athletics

I remember the first time I saw Morgan break a sweat.  It was just a few years ago (she was 8), when she stepped off the ice from her first Minnesota Special Hockey practice and took her helmet off.  Her head was soaked, her face was flushed pink, and she was exhausted from working so hard to try to skate.  I smile now at this picture in my mind because its something most parents wouldn't think twice about (sweating is a near daily occurance for my active son since the day he could start running) but for Morgan this was a sight that nearly brought me to tears.  I remember thinking it was so amazing to finally find an activity that she could get such great physical exercise from. 

We are a family that loves sports, I am a firm believer in keeping my children active with whatever activities they are passionate about and we encourage them to try new things.  Whether it be music lessons, hockey, baseball, rubiks cubing, dance, football, art class, cheer, swimming and so on, there are so many benefits for children to be part of something.  They develop physical and motor skills, get exercise, make friends, improve their self esteem, learn teamwork, and have fun!  For neuro-typical, able-bodied children this is simple, you find your local community and sports organization(s) and sign them up! The options are endless and the most challenging part is figuring out what they like best and navigating schedules.  Their chosen activities shape their core group of childhood friends,  entertainment values, and (hopefully) keep them busy and out of trouble.  

For children like Morgan with special needs (whether physically disabled, neurodivergent or children with complex medical issues) finding activities and sports to participate in is MUCH more challenging.  We started looking for activites for Morgan when she was a preschooler but realized early on the options were limited for a child who couldn't yet walk, had poor attention span, and limited fine motor abilities.  We started with music, something that seemed theraputic and catered to her sweet little voice.  After spending hours researching online and asking her therapists and hospital resources for recommendations, we settled on MacPhail Music Therapy adaptive program.  Taught by board-certified music therapists, she loved this amazing program and it gave her something to look forward to once per week.  But, like most adaptive programs, it was far (thiry minute drive each way), expensive, and individualized.  We then found an adaptive dance program at Studio 4, another amazing program and a chance for her to interact with other children with disabilities like her but also nearly a thirty minute drive.  A couple years later we were thrilled to learn about a Darby's Dancers program opening at our local Prior Lake Premier Dance Academy and made the switch so she could meet friends within our community.  I believe Darby's is still the only adaptive sports option in our city for elementary age children.  As Morgan grew older, she wanted to do and try all of the things she saw her brother and cousins participating in.  Over time, through various resources and word of mouth, we have found many awesome adaptive programs in the Twin Cities area and Morgan has been fotunate to participate in MN Special Hockey, Shockwaves Adaptive Waterskiing, Courage Kenny Adaptive downhill skiing, and Miracle League Baseball.  

These sports and her activites bring her so much joy and have helped her both physically and cognitively.  I love that she now has the confidence to participate in our family backyard baseball games and she can pridefully wear her hockey jersey to school on jersey day like her classmates.  We are so grateful for the programs that do exist but realize the barriers to entry are still so high for many children with extra needs- distance, costs, diverse abilities, resources, and even aptitude to find them!  Children with special needs already require so much EXTRA (frequent appointments, therapies, extra time to get out the door, additional time on school work, more coordination of resources, the list goes on) so adding a long drive to an activity that should be fun often just causes more stress. 

Morgan has also asked me many times why she can't be a Laker and play for Prior Lake like her friends and brother.  I wish I could give her a good answer for this!  As a communinity, I believe we can do so much better to be more inclusive with our offerings to accomodate for children (and adults) with disabilities and extra needs. 

There are over twelve hundred students in our district receiving special education services yet there is not a single adaptive program offered in our community education catolog.  Our city boasts more than 55 parks and close to as many baseball/softball fields used by our athletic program but not one of them was built with our adaptive athletes in mind.  Even activites like Choir or Play Theater, which may seem very accessible, are challenging for someone like Morgan who has dyslexia and can't read the lyrics/script as quickly, could be easily modified to better accomodate.  It is something we should all be mindful of for programs and events, to explore possible modifications and accessible offerings for people with physical and cognitive challenges.  Some activities might require minor modifications to be more sensory friendly or better cater to children with cognitive delays and of course other options like building an adaptive baseball field or park require much larger financial support, but as a community it is important to give opportunities to citizens of all abilities!  For me of course, my passion to help and support local adaptive programs is fueled by the smiles and joy I see them bring to my daughters face and the adaptive athletes and buddies around her.