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, August 2, 2022

Summer & Tibial derotation osteotomy

I am not quite sure where the last year went but hard to believe it is August already and the last time I posted was about a year ago!  Morgan's hydrocephalus and her gross motor abilties have been stable and we continue to do weekly PT but our focus has been more on her education and behavior.  She wrapped up 3rd grade and received reading, math, OT and adaptive PE services through the school district all year and still loving the small private school and the amazing teacher and friends she has there!  This summer she has a reading tutor who is Orton-Gillingham trained for dyslexia and works on her math workbook (her least favorite subject) several times a week with her nanny who is a teacher.  Sadly we have been on a waiting list for a child psychologist for nearly 2 years and seems impossible to get in person services anywhere local but we are still addressing her anxiety with medication (escitalopram) and have increased dosage as needed. She still really struggles to control her frustration and emotions at times so continue to try to address!
Unfortunately we also learned several months ago that her neurosurgeon (who we love and she has been with for several years) was leaving Children's hospital in Mpls/St Paul and we have been forced to shop around for a new pediatric neurosurgeon :(.  She has an appointment coming up with a new Dr at M Health Fairview in a couple of weeks. 
She has had a few appointments at Gillette's over the last year- watching her CP, growth, and her right leg external tibial torsion.  She had another gait & motion analysis done a few months ago (robot Morgan) and a couple of appointments with her orthopedic surgeon.  After watching for a while and much discusion we did decide last week to move forward with scheduling surgery to correct her right tibial deformation.  The surgery is scheduled for September 6th, it is called Tibial Derotation Osteotomy.  Timing is not ideal for many reasons - school, sports, weddings etc this fall but due to insurance changes we need to have it done before October and it is better for her functionality & mobility to have it done before next year & winter.  From what I understand typically this surgery just requires an overnight hospital stay and she will be casted and in a wheelchair for ~ 1 month, then a walking cast/brace and PT for several weeks until fully recovered.  She will likely always have to wear a right orthotic but it will give her more functionality with her foot straight, help prevent potential knee & hip issues down the road, and hopefully to allow her to skate better for hockey and give her ability to try new things!  The surgeon also said he may look to do some muscular lengthening in her calf muscle, this will be determined when she is in surgery. I will post updates during this time. 
Meanwhile, we will continue to enjoy our last month of summer!  So far this summer she has done swimming lessons for a couple of months, lots of lake time with friends, Adaptive water skiing again with Shockwaves, family camping weekend, she starts cheer this week, and we had a great trip to Austin TX for the Hydrocephalus conference again a couple of weeks ago!  











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