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, August 30, 2016

follow up MRI


We had Morgan’s follow up MRI today- saw Dr P at St Paul Children’s for the first time and I swear their MRI machine took at least twice as long!  Was a little rough and one unhappy girl!

Scans look better and her lateral ventricles are now “baseline” at the new 120 setting.  We are now going to watch and make sure this setting isn’t too high – he asked a lot of questions about how she was doing as far as tone and headaches, etc.  We spoke about what to watch for which would signal the setting is too high (and not draining enough)- headaches after laying down for a while, increased tone in both sides and inability to do motor functions she has done in the past.  Will continue to monitor and hopefully just back in 6 months!

Of course couldn’t get her shunt to reset (or at least not beep to signal it was)- back to X ray to check the setting but all looked good so we were on our way..
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