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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Tuesday, June 4, 2019

She made it!

Kindergarten ✅
Today was Kindergarten graduation and was great to see Morgan so happy & participating in Spanish songs - she was very excited!  Its been a LONG year and quite honestly wasn't sure we were going to make it here if you would have asked me late last fall!  She had some rough days but we pushed through it and proud of Morgan who continues to work hard and making progress!  We definitely have some work & catch up to do this summer on schoolwork (especially since she wants to be a doctor when she grows up :)) but will make sure to mix in some fun also!
This is also our last week (2 more sessions) of PT at Gillette's in Burnsville and starting next week will have 2 early morning sessions in Savage (closer to home) and 1 early morning pool therapy.  Morgan is excited to get back to the pool!  She is walking really well and hardly using the wheelchair- we are ready to get rid of that thing after school is out!  Still dragging the right leg a bit but tomorrow we are having her right orthotic hinged at her therapy session and still working on strengthening that leg to correct.  Next week we also have her PM & R Doctor follow up at Gillette's (3 months post surgery) so will update after that!  I do remember discussions before the surgery telling us to expect it taking ~6 months to get back to baseline and I feel like she is pretty much there so very happy with her progress!




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