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, November 3, 2022

Update - one week post op

Morgan is doing MUCH better!  I definitely underestimated the amount of pain and bruising she would have (she’s black & blue even above her cast up by her knee)- it hurts her to even pick her up but getting better every day.  We stopped the Oxycodone on Friday night after just one dose and never took the Valium they prescribed because they were just messing with her stomach and I think making her feel worse.  Just alternating ibuprofen & Tylenol have worked much better but haven’t needed much the last couple of days and just trying to keep ice bags over her cast when we can also.  Yesterday she went in to Gillettes to have her cast slits sealed & casted over and she was in pain yesterday afternoon I think because of it being tighter.  She went back to school on Monday and I think it’s been helpful it was Halloween and themed dress up days this week to mix in some fun and keep her mind off of! 

We bought a smaller wheelchair and it’s much better but I do think she’s realizing not been able to walk and sitting in a chair all day is not so fun! 3 1/2 more weeks to go!  Thank goodness for our unseasonably warm weather because this might get tricky transporting her up and down to vehicles and around school with snow/ice! 






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