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, July 4, 2016

thankful for play doh

Not exactly where we want to be spending our morning (in Children's Hospital St Paul) on July 4th!  Morgan woke up feeling fine and acting like her usual self (I didn't really expect different since mornings are usually fine)- we ordered breakfast after they gave her clearance to eat and ate breakfast in bed while watching Queen Elsa.  We were told the neurosurgery team would be rounding at 8am to check on her and if she was feeling OK, send her home.  Of course this ends up being about 11am after asking a few times.  Morgan is feeling great and restless- watched a movie, read books, played with a few toys but she wants to go home (so does mom!)....along to save the day is Children's volunteer with a tray of play doh- kept her busy for at least an hour! 

Finally neurosurgery comes in and agrees that she looks good and discharged to monitor her.  They said give her about five more days (as long as she isn't extremely sick or not eating, etc) and watch her and schedule a follow up appointment in about 4 weeks if she seems to get better. 

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