Morgan's Mission: May 2019

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.

Tuesday, May 14, 2019

5 X per week

Last week of having PT sessions five days per week! Next week we move to 2-3 sessions per week which will be nice to free up schedules a little bit :) Her daily PT schedule at Gillette's is a bit all over the place and has been a crazy 4 weeks juggling schedules and a group effort to get her there, in/out of school, and caring for her brother (and getting him to sports) by myself, Dad, Grandma, nanny, etc. Tomorrow she is getting her orthotics hinged (was supposed to happen today but this is how things go sometimes..) and she is walking pretty well. She now has clearance to walk short distances outside of therapy and we are relying much less on the wheelchair- only for long distances! We are still getting out on nice days for trike riding and still seems very happy and doing better at school - only a little over 3 weeks left of Kindergarten! As you can see on the video her right foot is flat now (hooray) and she is getting good heal strike but her foot is pointing out which is what they are working on still.

Monday, May 6, 2019

Moving along

Morgan is progressing well but feels a little slower now...

She is doing great overall, seems happier and back in routines and working hard at PT every day. She is walking several steps across the room and her right leg is getting stronger every day. We do still have the wheelchair and her walking is supposed to be restricted to therapy only. Still trying to build strength up to improve the out turning of her toe on her right and with strength they think this will resolve itself. Yesterday she made it a few blocks all the way to the park on her new adaptive trike with only a little help up the hill. She hasn't really been able to pedal in the past so this is a great accomplishment!

Morgan's Mission