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, April 1, 2019

Day 20 - SDR

I think we are past the halfway point so on the down hill stretch!  It is getting a little bit easier every day as she can do more on her own and much more comfortable.  She is med free now and slept great last night.  I believe they upped her wheel chair time to 1/2 hr (was 15 mins) three times per day.  She also got to ride the trike today and seemed to enjoy and actually pedaled on her own which is not something she has really mastered pre-surgery and helps to have these adaptive trikes.  She is also very happy there is no school in the schedules this week because St Paul district is also on spring break :)
We have been in the playroom more now on her stander & wheel chair and she loves to play with the kitchen and castle but definitely getting frustrated not being able to walk and do things she has in the past, we just encourage her to keep working hard at PT!

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