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.

Search This Blog

Friday, April 19, 2019

Day 39 - SDR - HOME!!

We are home!! We packed up the remainder of her room and had one morning session with OT & PT. They talked through restrictions at home (no walking or passive trunk rotation) and showed me stretches to do daily with her. We were discharged before lunch, said our goodbyes and were out :)
Feels great to be at home just in time for spring weather and Easter and we are so grateful for the support and prayers from our family and friends to get through this long hospital stay!  Morgan is a rockstar and her therapists had great feedback on her strength and imagination of course :)
We are catching up on life and trying to get some relaxing time in with family this weekend and back to school and daily PT sessions starting Monday for Morgan. Will continue to post less frequent updates on her progress getting out of the wheelchair and back to baseline.

No comments:

Post a Comment