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, April 3, 2019

Day 22 - SDR

The cast is off :) Very happy to move forward with the RobALT now in PT and starting to work on walking again!  I believe it was 21 days she had to wait for her incision to heal and can now begin pool therapy and take baths which she is very excited about and we see pool therapy on the schedule for tomorrow!  The big bath tub they have was apparently broken yesterday and hoping they have it fixed by tomorrow, would be good to have her soak her foot after the cast removal and for the steri-strips which are barely hanging on to her incision.  She continues to do 3 hrs in the stander per day, 1 1/2 hrs in the wheelchair and 3 hrs in the prone cart daily plus riding the trike during therapy.  Here is some additional information on the RobALT:
https://www.gillettechildrens.org/conditions-care/robotic-assisted-locomotor-training-lokomat

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1 comment:

  1. Carolina GeisslerApril 4, 2019 at 10:34 AM

    Glad to see Morgan is doing better every day :) I bet she was so happy to be home for the day on Sunday. Love reading your updates!

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