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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Wednesday, March 13, 2019

Surgery Day 1

As we were pulling into the Gillette parking garage this morning I saw this sign "Something Wonderful is about to Happen", I am not usually superstitious but I'll take that :)

Morgan did GREAT this morning, didn't ask for food once, told me she was "excited" on the way here until we got to the waiting room and then she admitted she "was a little nervous".  She gave Boozle some MRIs in the waiting room and was on a roll with the nurses as we waited in the prep area (making up & singing songs) and just a chatterbox having fun despite about an hour delay.  Pat and I were both able to bring her into the surgery room and this is where she lost it for a min but quickly got the mask on her and off to sleep she went...

Started 2:25pm so will update in a few hours after she is out.




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1 comment:

  1. Carolina GeisslerMarch 13, 2019 at 7:53 PM

    She looks so cheerful on those pics!! I hope everything went well. I prayed for her today :)

    ReplyDelete

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