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

Friday, December 16, 2022

Cast off, Recovery & New School


Overdue post, a lot going on! Morgan got her cast off on Mon, Nov28th and I think we grossly underestimated the amount of time it would take her to walk again but getting stronger every day!  Of course she was glad to have that stinky thing off, take a normal bath and have a wider selection of pants!

She took her wheelchair to school the first week after her cast removal and was hesitant to walk much (with her orthotic on only), I think still some pain and just weakness.  After the first week though we had her at home over the weekend and used the walker only and now she is using the walker still some but also walking a little without. Still slow and steps are challenging but getting stronger everyday…the MN ice/snow is making this extra tricky!  We had her orthotic adjusted also a week or so after she got it (was rubbing and giving her red spots) so it’s fitting better and got some new Billy’s shoes and Boots since she has to have the orthotic on at all times to walk for now.  We have a follow up apt with her Surgeon in early Jan (4-6 weeks after cast).  

She also wanted to try hockey again (MN Special Hockey) last Sunday so after trying on a few pairs of hand me down skates we found a pair that are wide enough to fit over her orthotic and she skated for a short period of time with the trainer but was super frustrated and I think just tired.  

Morgan also switched schools two weeks ago so that has been a bit of an adjustment!  This situation at her small private school was challenging with her disabilities so this has been an ongoing topic of discussion for a few months and ultimately decided to move back into the public school where she receives SPED services (and received an in district transfer approval to do so).  I could probably write for days on the topic of school and children with disabilities and the constant battle this is for parents but will just say its exhausting!  So far so good, she seems happy and continues to work one evening per week with her tutor also for reading (dislexyia) so we will pray for continued happiness, progression and that we made the right choice!       

We also still celebrate her micro preemie “adjusted” birthday every year with a cupcake on December 8th (her original due date)!