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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Thursday, April 4, 2019

Day 23 - SDR

Morgan had a busy day today!  This morning Gillette's had an event by Reese's with the NCAA All-Star basketball team, Miss Minnesota, mascots, etc. all here visiting the kids so she had fun participating in those activities and getting autographs and pictures before therapy!  She was SO excited for her first pool therapy and already doing great standing and walking in the water with little assistance.  The therapy pool is very cool, the floor lowers/raises and as you can see in the pic there are cameras to watch her walking patterns.  She still wants to toe walk on that right foot (which apparently is very common) and they are retraining her brain on this. She got her new right foot AFO fitted and finished today also, again pink with a unicorn on the back.  They increased her afternoon PT session to an hour also so she had 2 hours of PT today and one hour of OT and spent some time riding around in the adaptive trike again.  We will get this tomorrow night to use in the evenings and weekends- add another apparatus to the daily routine! I spoke to her therapist about the goals for the next couple of weeks and next step is to get her walking with a reverse walker like she used to have and continue to work on unassisted transitioning to get her self reliant.  She is very pleased with how well Morgan is doing and how quickly she is building her strength back.  The bath is still broken so had to make do with the shower after pool therapy and she actually handled this pretty well.  We spent the evening playing BINGO with child life and she is very tired. 




1 comment:

  1. Greetings and Blessings from the Dagers, Morgan!

    ReplyDelete