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, December 24, 2013

sleepiness

Extreme sleepiness is one of the symptoms of shunt malfunction and we have noticed for several days now that Morgan is very tired.  She has been taking very long naps, difficult to wake in the mornings and her eyes are glossy and tired when she is awake.  Her grandma called late this morning and said she did vomit just a little bit but at this point we are certain something is not right but her fontanel is not bulging (looks totally normal). 
I debated whether to call her neurosurgeon or pediatrician office and went with pediatrician since her head seemed OK.  We took her in early afternoon and saw her Doctor and they did examine her, she didn't have a fever, etc. but found nothing wrong.  She assured me it did not look like a shunt issue since her head looked fine and we chalked it up to some sort of "bug" that she must have gotten.  She was able to hold her food down the rest of the day so hoped she would feel better in a day or two. 

Of course it is Christmas Eve and unfortunately Morgan was kind of a zombie during dinner & opening her gifts but she just seemed really tired and not feeling well. 

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