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.

Search This Blog

Wednesday, March 27, 2019

Day 15 - SDR

Good night again last night and lots going on today!  She got her cast off late this morning (this is traumatic with the saw they use to cut it off) and Rehab doctor assessed and thinks another week wouldn't hurt.  She was able to get her foot back to neutral/90 degrees but hoping to get a little bit more of a stretch.  We let her foot air out for a couple of hours because she had a sensitive spot they put a bit more padding around with the new (pink again) cast.
The other new thing Morgan did at PT today was the RobALT, robotic assisted locomotor training!  She was a bit scared of it at first and it took a while to get it all fitted but then quickly found it amusing flying like "Robot Tinkerbell".  She did this "walking" only for a couple of minutes today and she did say her legs were hurting but assume they just ramp up on time each session.   Unfortunately we will need to wait to do this again until next Wednesday when her cast is off again but will continue working on standing and spending time in her stander in the meantime.
From what I hear she is rockstar and moving along quickly!  Her usual nurse was back today and surprised to see the stander, commented most have at least another week before they introduce this :)



 
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)