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, April 12, 2019

Day 31 - SDR

We've spent a lot of time in hospitals over the last several years and while there have been times we have seen and heard some very sad and unthinkable situations from other families I think for the most part we are inspired by these kids and I hope Morgan and her brother grow up realizing the same.  The rehab unit is a new experience, most children are there long term and its a bit more social with a play room, social activities every evening they encourage you to attend, and you tend to see the same families in the unit and at therapy every day.  Some kids with existing conditions & surgeries like Morgan, others with scary accidents and random illnesses they are recovering from.
There is one family we tend to spend a lot of time with, a 3 year old boy (and his brother who is 5), who was a healthy "normal" toddler and suddenly started complaining of leg pain and quickly went into full paralysis, was rushed to the hospital and later diagnosed with Guillain-Barre, was intubated and received plasma exchange.  Apparently it was scary for days but he pulled through and has been in the hospital since February recovering and regaining his strength.  He HATED his stander and cried about having to be in it, so Morgan has been a bit of a role model for him, we meet up in the play room in their standers and they usually blend up some interesting food shakes for us in the play kitchen.  The other night she said her feet hurt after a full day in her new AFO's but just after we got back to the room to let her take a break, he showed up ready to play in his stander and cried when she was getting in the wheelchair so she agreed to get back in the stander for a while longer to help him out and play :).  His mom was also telling me he wouldn't stand or try walking in therapy which was getting frustrating.  Last night we were at activity and he suddenly asked his mom for her hand so he could stand up and just stood up and started walking, he walked across the room and gave Morgan a high five.  What an amazing thing to seem him walk again for the first time and his mom a bit shocked and teared up.
Morgan continues to make great progress and gets stronger every day.  She is able to stand on her own holding onto something and took a few steps unassisted at therapy today.  She has had OT in the room each morning since Wednesday helping her dress and she can get down from the bed onto the mat and dress with little assistance (except her socks due to her clammy feet!).  We have her daily outpatient PT schedule set through June and still on track and getting things organized to prepare for discharge next Friday!  Tonight was music therapy night and the kids had a blast trying out new instruments.

1 comment:

  1. Thanks again Jess. This was such a nice bit to read knowing there are good deeds being done by the tiniest people after reading horrible news stories. Morgan is an angel on earth. Melts my heart.

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