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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Friday, June 8, 2018

Neuropsychologist Evaluation

This week Morgan's unusual behavior continues- headaches and two mornings of vomiting but then feels better.  Not sure what is going on but we have several appointments scheduled this month and decided to wait to get into her primary Neurosurgeon (he was booked and on vacation) until Jul 2nd. Will take her in sooner if it becomes more emergent.
Today was long awaited pediatric neuropsychologist evaluation.  This is something that was suggested to us a while back but waited until she was old enough to be evaluated.  The appointment was a few hours long - I wasn't able to sit in the room while they were evaluating but a series of tests and questions for Morgan while I filled out a very long questionnaire (in addition to the evaluations and information already sent in by parents, teachers and doctors).  We are hoping this evaluation will shed some light into her abilities and how best to teach and work with her behavior. 

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