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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Tuesday, April 9, 2019

Day 28 - SDR

Pool therapy days are Tuesday's & Thursday's so Morgan was very happy to see it on her schedule today!  Other than that, more of the same and her school sessions have been cancelled the last two days due to substitute teacher no show (Morgan excited about this, Mom not so much). We have a standing approval now for "day passes" as long as I sign a form so took another little afternoon walk outside again.  We walked over to the State Capital building (Morgan thought "it looks like the White House") which is only about 3 blocks from here and had a short self guided tour of the inside, I figured a social studies lesson wouldn't hurt in absence of school today and after an uncooperative math attempt :)
I don't think I have shared this positioning worksheet yet either - something we have to fill out daily to track all of her time in the different apparatuses and honestly like a second full time job trying to fit it all in!  I feel a sense of achievement on days we actually get this done!


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