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, May 6, 2019

Moving along

Morgan is progressing well but feels a little slower now...
She is doing great overall, seems happier and back in routines and working hard at PT every day.  She is walking several steps across the room and her right leg is getting stronger every day.  We do still have the wheelchair and her walking is supposed to be restricted to therapy only.  Still trying to build strength up to improve the out turning of her toe on her right and with strength they think this will resolve itself.  Yesterday she made it a few blocks all the way to the park on her new adaptive trike with only a little help up the hill.  She hasn't really been able to pedal in the past so this is a great accomplishment!



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1 comment:

  1. Maria TsalyukMay 9, 2019 at 12:35 PM

    Hi Jess,

    Just wanted to say thank you for keeping up with the updates on Morgan. Its great to see the progress she is making, she is an amazing little girl! I appreciate the opportunity to be able to read and follow her story, especially with the detailed description of the SDR surgery process. We may have to go through it in the future with my son and by reading your blog helps to calm the fears that are inevitable with this type of procedure. You are walking this road ahead of us and I appreciate you are openly sharing your experiences. All the best and the speedy recovery to Morgan! The day will come when we will be reading about her running and jumping and feeling great about it:)

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