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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Wednesday, March 27, 2019

Day 14 - SDR

They brought Morgan's Gabapentin down to 2 times per day so she didn't receive in the evening last night (no Tylenol either) and she slept pretty good!  Will continue to wean this down.
She had a full day again today with OT/PT, etc and a bit of a meltdown going to the School session.  Her mean mom gave her teacher all of her math homework (which she struggles with) and clearly not as fun anymore! 
The highlight of today (besides receiving more amazing gifts in the mail) is she now has a stander! She needs to spend 1 hour, 3 times per day on this in addition to the wheelchair and prone cart going forward.  The nurse had to show us how to get her into this (careful not to pull her up by the shoulders or twist her back) and she actually took a couple of steps by herself to walk into without prompting.  Her and her brother have quite an entourage of Child Life volunteer friends who they spent the evening decorating crowns and eating treats with so when we took her back with the stander they helped her decorate the wheels with stick on jewels :) 
She stands up well in it and just getting the hang of wheeling it with her arms (her right side is a bit slower as expected since this is her CP side).



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1 comment:

  1. AnonymousMarch 27, 2019 at 9:35 PM

    Dear Lovely Morgan,

    You are a sweet and beautiful girl. May your good guardian angels always watch over you, and give you a lot of love, courage, good health, and happiness.

    ReplyDelete

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