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 18, 2019

Day 6 - SDR

I am not quite sure if Morgan slept more than a few hours last night :(
She kept waking up whimpering, asking to be moved and for things and seemed very uncomfortable.  I finally got her to agree to more medicine at about 4am and the nurse gave her Tylenol and Valium (I didn't realize until after) and then she slept soundly until a little after 7am when a doctor came in.  I think she must have been really sore from sitting up most of the day, moving around and a few hours on the prone cart on Sunday and she hadn't taken anything for pain all day.  She was a little cranky and had a rough morning (toileting, dressing and hair situation is not fun at the moment) but got better after she got out of the room! 
Today was her first day of therapy and it went well- mostly meeting everyone and talking about goals and interests.  PT & OT worked on her rolling over by herself- from the prone cart to the raised mat, stretched her legs and feet quite a bit and just keeping her up on her forearms playing on her stomach to strengthen her core.  For the first time could really see the results of the surgery and the reduced tone/spasticity in her right leg/foot- she can now easily flex it to neutral/90 degrees which she was never able to do before!  The Physical therapist did mention potentially serial casting her right leg again for a week or so to stretch the muscles even further which we didn't have much luck with before SDR but would have more lasting impact now (and easy time to do it while she is here and not walking etc yet). Dr Sinner (her rehab Dr) is the person rounding this week so chatted with her about this afternoon also and she is going to discuss and revert back tomorrow. I think her favorite was music therapy - he was really fun and had creative ways to get her reaching to play instruments and she seemed to love it :)
When we got back to the room about 3pm and she said "whew, I am exhausted"..
I let her rest for a bit before dinner then we got another 45 mins in walking around the hospital on the prone cart tonight and Child Life had "green & gold" sugar cookie decorating in the lobby area so her and her brother had fun doing with that!  
Here is the schedule tomorrow (I think these build up and get a little longer after a few more days) and a pic of her and Max ending the night playing with new gifted toys!




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