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 15, 2019

Day 34 - SDR

I spoke with Morgan's PT this afternoon and they have now removed the sitting/wheel chair time restriction so she is able to sit up as much as she needs/wants now.  We still need to try to keep 3 hrs of prone time in per day if possible and not best for her to be sitting all day!  They have also updated to allow assisted transfers (from dependent), so Morgan should be getting in and out of her chair, out of bed, etc herself with assistance as needed.  Quite honestly we have been doing this for about a week anyway and she is doing well with it  :). She has stood unassisted for ~ 40 seconds and has taken a few steps on her own. Her rental wheelchair is ordered which should be here before we are discharged on Friday and we are looking into getting her a adaptive trike for exercise to have at home.  
Tonight's activity was cooking making, the kids were very excited for this!



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