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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Saturday, July 2, 2016

120 not agreeing with Morgan


A couple of days after her shunt setting changed to 120 and Morgan is making us a bit nervous...both afternoons she has gotten very glossy eyed, tired and grabs her head and cries saying she has a headache.  Good news is that after she lays down for a bit she seems to feel better.  This is the first time she has been able to tell us what is wrong so at least the guessing game is over and we know she is having headaches!

 

This seems a bit odd and backward to me- they said it might take her a couple of days to adjust to the new settings but seems like this wouldn't happen in the afternoon (when over drainage occurs)???  I felt like she would have a harder time adjusting after she was lying down for a while (when the amount of fluid increases in her head more than she has been used to lately)...I give up trying to figure out symptoms of hydrocephalus!
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