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, March 17, 2019

Day 5 - SDR

Busy day today!  Dad finished building the Lego Hospital for Morgan this morning which is a big hit!  She took a bath this morning- lifted her onto a stretcher like platform and brought her into a room with a big bath with hand shower.  Apparently this was a little traumatic at first but then at the end she was like "ahh this feels good", I bet after 4 days!  She increased time on the prone cart today- we went on it three times about 45 mins each - walked around the hospital and spent some time in the rehab unit playroom on it.  They also started raising the head of her bed slowly all day- started at 10 degrees, then 20, then 30 (which hurt a little bit), then later in the afternoon removed her knee immobilizers so she could bend her legs and had her head up past 30/almost 40 degrees and she did great!  She is so happy to be able to play with things on the table now with her head elevated.  Will continue to increase this to get her sitting up!
We had visitors all afternoon and evening which was great entertainment and she was so excited to have her Kindergarten teacher who came with bags full of cards and gifts from her class!  She has the nicest friends in her class & the whole school sending so much love and we are so grateful for this! We wallpapered her room wall with cards and she is sleeping with all of her stuffed animals tonight :)
I received her schedule for tomorrow this evening- she starts at 9am tomorrow with different therapy & evaluation sessions all day until 2:30- Psychology, OT, PT, break for lunch, Therapeutic Recreation, Music therapy and PT again.  I will join these tomorrow for her first day and each evening she will get a new schedule for the following day (I believe will start to get longer and mostly consistent).




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