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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Monday, March 25, 2019

Day 13 - SDR

Advice to girls pre-SDR surgery, cut your hair short ;)
The struggle to brush out her hair right now is still a problem since she has minimal time sitting up the back is a matted mess every day and this usually starts our morning off with tears!  She may have dreadlocks when we leave here...
It probably didn't help she had a bit of a rough night last night- we decided not to give her Tylenol before bed to see how she did and ended up calling a nurse in after midnight to give to her.  She was extremely restless, whining and crying in her sleep something hurt.  We got her to wake up and take it and was much better the rest of the night.
She had a long day of therapy  - psychology, 2 PT & OT sessions, 2 School sessions and therapeutic recreation.  I didn't see first hand but am told she did get in the stander today at PT so looking forward to seeing this! Somehow with all of this we got her time in on the wheelchair and prone cart also.
We are going to try weaning the Gabapentin down (she is getting 3 times per day right now) and will see how she does with this, hopefully all goes well and she doesn't start complaining of tingling or pain in her feet/legs.  Also trying tonight without Tylenol again so we'll see how it goes!


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