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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Sunday, April 28, 2019

Back to Normal

We got through the first week of back to normal and actually went smoother than I thought!  I expected Morgan would have a hard time adjusting to school again but no morning tears and she was excited to see her friends and teachers.  Just a couple of snafus with forgetting/losing wheelchair pieces which caused a couple extra trips back to school but got through the week!  She has daily PT sessions at Gillette's in Burnsville and the times are not consistent so we are juggling schedules which will get harder with activities/sports starting this week also.  The early morning sessions were definitely better/more productive than the late sessions because she was pretty tired and her AFOs hurt after wearing them at school all day.  We got her an adaptive trike at home also so have done that a couple of times (as weather permitted) and she is doing pretty well with it. Her PT sessions have been mostly focused on building that leg strength still with the trike also, treadmill walking with a harness, squatting, balance exercises, etc.  Orthotist saw her on Friday morning and plans to hinge both AFOs also which she is ready for and should help with stairs and floor mobility.  Progress feels a bit slower this week but imagine it will feel that way until she is walking independently.
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