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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Friday, March 15, 2019

Day 3 - SDR

They said this would be the hardest day - 2nd day post op...we did have a bit of a rough morning but really only because she is getting bored and a bit stir crazy/tired of laying flat!  Several hours of trying to occupy her with Mary Poppins, crafts, play doh, cartoons, we made this butterfly craft, etc - thankful for Child Life at Gillette who came in with some activities!
She was able to have both IVs removed and her Catheter (cord free now!), she is diapered which is a bit of a problem but managing.  Still laying flat and just roll her on her sides to reposition every few hours.  She is just taking Tylenol and Ibuprofen now orally to manage pain all day and hasn't needed much!  She hasn't complained about her legs and says her back hurts only when we move her.
Thankfully we had visitors starting around lunch for pretty much the rest of the day to occupy her with conversation & new fun toys.  She had a little break and took a short nap in the afternoon which was perfect.  Tomorrow I believe we are able to get her on the prone cart and at least get her out of the room and did receive her schedule for her first Physical Therapy session at 11am.

I have two recommendations for anyone getting SDR - invest in an Amazon stick for the TV to watch movies, Netflix etc which has been great here and lots of new small toys/activities and space out giving to them :)


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