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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Saturday, March 16, 2019

Day 4 - SDR

We had a little bit of a rough morning, again the diaper situation and I think she is very uncomfortable with it (can't blame the girl!) and for a little while we were concerned if she maybe has an infection from the catheter but by the end of the day thinking she is OK.  The highlight of the day was getting up on the prone cart though and finally getting out of the room, and of course more visitors & gifts!  We might need a U Haul when we leave this place!  We got her dressed this morning and brushed her hair (the back of it was crazy matted from laying on it so long so that took about a half hour!) and got her cleaned up which was a bit traumatic.
Physical Therapy (PT) came in about 11 am to show us how to get her onto the prone cart.  We have to have one person roll her into another persons arms on her tummy then transport over to the cart to lay on her stomach.  She can lift her head up a bit if she is on her elbows this way and it strengthens her back and core.  We took a walk around the hospital and skyway, her (4 yo) brother insists on pushing her which is slightly scary but he got the hang of it going slow and watching out for bumps in the floor without running her into anything!  Day 1 of prone cart they wanted her on it for 20 mins per time, 3 times a day and will gradually increase this.  The second time we went out, Child life had some play doh activities going on in the main area of the hospital so she got to do that for a while with her brother which was fun!  So grateful for these volunteers who come in to entertain kids!
I finally got out of the hospital myself for the first time since Wednesday and in true Minnesotan fashion admittedly had my sunroof open (its 32 degrees outside) just to get some fresh air and sunlight in the car :).  Dad is spending the night with Morgan in the hospital tonight with tall orders to put a million piece Lego Hospital set together and have movie night!

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