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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Wednesday, April 17, 2019

Day 36 - SDR

Today Morgan received her new "take home" wheel chair rental so tested that out and do need to have some adjustments made tomorrow.  She also had her last day of RobALT - they only have this in St Paul and she will have her outpatient PT in Burnsville.  I didn't post yesterday but she also loves the OT sessions with the therapy dogs and this picture is of her playing hair salon with Sara (a very patient cute white fluffy dog).  She is doing great and taking several steps with just light hand holding, her right foot is turning out a bit which is something we will watch but likely just due to weakness in her hip still and apparently common post SDR.
They asked me yesterday if they could use her room for a local news story on a girl that cleans in this unit so agreed to this and didn't really expect to be in here but right after lunch they came in without much notice started filming so Morgan made the news tonight :). I have commented in past posts how they do a cute job cleaning her room and rearranging her stuffed animals in funny places and this is a great program they have for special needs ex-patients, here is the story:







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