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, March 21, 2019

Day 9 - SDR

Morgan spent last night and today with Grandma today who tagged along to some of her PT & therapy sessions- all is going well (some fun with music therapy & PT together) and her PT told me this evening she is doing great and getting stronger every day- rolling over & trying to sit up & build her core muscles! As most of you know she never crawled (butt scoot only) as a baby and hated laying on her tummy so her core muscles have always been weak!  She got her wheelchair today and did great sitting up in that- we have to chart her time on these and the goal is to get in 60 mins of prone cart time 3 times a day and 15 mins of wheel chair time 3 times a day (eventually adding a stander and trike to this).  The environmental services lady who cleans her room likes to leave her stuffed animals and dolls in fun/funny places around the room which Morgan gets a kick out of, amazing the little things hospital staff does to entertain kids! Tonight her brother pushed her around in her wheel chair for 15 min and then we switched over to the prone cart to watch the dog show in the lobby.   Tonight was also bath night again, the nurse made her a small bath tub for her doll to take a bath with her and thankful I happened to keep the blue waterproof cast cover from her last serial casting :)






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