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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Sunday, April 14, 2019

Day 33 - SDR

Headed into our last week inpatient hopefully!  Morgan had OT and PT yesterday morning but spent Sat afternoon and Sunday at home (just back to the hospital Sat night for an hour in the stander & to sleep).  She is doing great and its difficult to keep her prone or laying down at home, she wants to be sitting up playing all day.  We also ventured out to get a much needed haircut on Saturday afternoon.  She can stand well holding on to things and move around furniture and now trying to balance standing on her own also which she can do for several seconds (see pic).  When we got back this evening we spent more time in the stander and some time in the trike - we need to do more of this to build her leg strength!  She can ride the trike a little on her own but does need help steering and pushing that right leg mostly.



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