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

Monday, April 8, 2019

Day 27 - SDR

Morgan had a full day of therapy today, RobALT, etc and seemed pretty tired by the end of her sessions!  I attended a family conference will all of the therapists, providers and doctors on the team here as well as school district on the phone.  They summarized her progress and confirmed discharged date set for next Friday, April 19th.  OT will start sending someone in Wednesday morning to get her doing some self care & dressing on her own and PT to continue working on walking and transitioning.  She will have a wheelchair at discharge (likely for several weeks) and potentially a walker but should hopefully be walking and standing independently for short periods which they do controlled at her therapy sessions.  The Psychologist was also helpful in sharing how she explains and gets feedback from Morgan using pretend play with dolls on what they are doing in therapy, why she has to exercise her arms & core even though her surgery was for her legs, and now will focus on explaining transition back home and school.  Outpatient Physical therapy begins the 22nd will be 5 days per week for 4 weeks and then down to 2-3 days per week and we will start this at Gillette's in Burnsville. Her incision site still has a couple of steri-strips hanging on but doctors/nurses have commented on how well it looks and have been putting fresh Aloe, Vitamin E and Coconut oil on it to help heal and lesson the scarring.  The highlight of her day was getting outside for a short walk on this nice Spring day (getting our fresh air in before the snow later this week!), I pushed her in the wheel chair a few blocks to pick up some snacks at Lunds.  They also had a fun evening activity cutting out and taping the insides/anatomy & decorating :)




1 comment:

  1. Keep going Morgan! You are a trooper and I can’t wait to see your amazing progress by this summer 😘💕. Patti. Aka Kennedy's grandma

    ReplyDelete