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, March 19, 2019

Day 7 - SDR

Morgan slept much better last night with some Tylenol before bed! Another day of several therapy sessions and a session for school.  I didn't attend these but she seems to enjoy going and from what I am told she had a tea party in OT and colored at school :) - hopefully they covered more that she is not telling me!
I spoke with her rehab doctor today and I believe they will serial cast her right foot again tomorrow (we tried this for 4 weeks several months ago which is in prior posts), this time for only a week then take off and check if 1 more week needed.  This will help stretch her muscles which are still very tight/short due to several years of spasticity! She was also molded for new orthotics this evening and excited for the new pink unicorn print she picked out. We had some more visitor fun this evening and more amazing gifts - this girl is well loved and spoiled! We got another hour on the prone cart which her little cousin thought was so fun to push her around on and we joined child life for a cute wash cloth bunny project and ice cream cake! Raising the head of the bed above 30 degrees still hurts but trying to push her a bit to get up to get to 45 degrees tomorrow is the goal.  She ended the evening with a bath and have a cool contraption for this - they put her on this blue flat plastic stretcher like thing and lower into a huge bath to wash her - took a picture of her after all wrapped in heated towels. This is also what the incision looks like on her back - it is several inches long covered with steri strips (no stitches to remove). 



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