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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Thursday, August 15, 2019

Orthopedic follow up

One of the most common and severe problems for kids with Cerebral Palsy is hip dislocation/displacement so Morgan has been followed by Orthopedic doctor at Gillette over the years and today we had a follow up appointment with him post surgery.  She had a quick X ray of her hips (standing) and we spoke to the doctor for a while and discussed concerns with her right foot still dragging/turning out and some options (like casting again) we can discuss more with her rehab doctor in upcoming months.
Great news her hip X ray looks good, he showed and explained all of the things he looks for and pointed to everything looking fine and no signs of displacement!  He explained again the CP type & the Gross Motor function classification system (GMFCS) severity ratings (1-5) and how the risk of displacement increases with rating.  Morgan is level 2 and kids with level 1-2 typically have a 10-15% risk of displacement.  Usually they recommend annual X ray of hips to monitor but he felt since all looks good we can come back in 2 years :)
Other than that, its been more of the same - she continues with PT sessions about 2 mornings per week- one regular, one pool.  It does feel like she made very good progress for a few months and then sort of plateaued but will continue to work hard!  We went for a bike ride on her adaptive bike to the park tonight (admittedly haven't used as much as we should) and have really been focusing on making her do things independently like getting in/out of her booster seat, walking up stairs, dressing, helping with chores, etc.  Of course still hanging on to the last few weeks of summer, enjoying boating and she is even taking a couple of golf lessons with her brother.


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