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, October 26, 2022

Tibial Derotational Osteotomy - Round 2

Lets try this again...

Morgan is scheduled to check in at Gillette's at 8:45 am tomorrow morning with surgery at 10:15 am. 

Pre Op exam and labs completed last Monday and she was a rockstar with the blood draws, no tears!  No COVID test required since we are within the 90 day window of her last positive PCR test.  We did her first surgical bath this evening and have to do another one in the morning.

In hindsight, the month and a half delay was probably a good thing.  A bit of a pain to rearrange & redo everything but it allowed her to enjoy a full season of cheer this fall, walk in her aunt's wedding, and enjoy a fun MEA break with friends at a waterpark hotel in Okoboji.  Her expression at the waterpark says it all!  

We appreciate your thoughts and prayers for Morgan and the skilled hands of her surgical team tomorrow!







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1 comment:

  1. AnonymousOctober 28, 2022 at 3:20 PM

    Hoping all went well. Been thinking of your family and Morgan

    ReplyDelete

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