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, February 18, 2013

fluctuating fontanel

Since Morgan had the OSV (self regulating) shunt placed in December her fontanel (soft spot) has been full, then sunken, full, sunken, etc.  For about 4 days now we have noticed it is quite full and getting hard  which is making us very nervous but she doesn't seem to have any other symptoms of malfunction (she might just seem a little more tired).  I called the neurosurgeon and they had us come in just to check it out - they tapped the shunt without issue just to make sure CSF could easily be extracted and no blockage.  They ordered a pediatric eye exam the following morning for them to check if there was any pressure on her optic nerve.  Of course then we wake up the next day and her fontanel is sunken again and she seems fine.  Relieved and everything was normal with eye exam but annoyed with the fluctuation and we just never know how long we should wait before we get her checked out.
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