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 11, 2019

Preparation and Morgan's perspective

Somebody asked me the last time Morgan had surgery "does it get easier?".  I think this memory and question stuck with me because it caught me off guard and I think I froze for a minute and then politely responded with something like "not really".  I realize this person had good intentions and surgeries/complex health issues wasn't something they had been through with their children (thankfully).  What I really wanted to respond with is "NO!!!!!".  Well this was a few years ago now and was just reflecting on how this surgery feels a bit more scary.  I am not sure if its because we have had a lot more time leading up to it (her last surgeries were mostly emergent), if its because it feels a little bit elective, or if its just harder to prepare Morgan because she is older and understands now.  Or maybe a combination of all three.
So what have we talked about to prepare her for this?  We have tried to be completely open and honest and explain it as best we can.  I did buy her a book that I would recommend for any child undergoing SDR called "Sir Dr. Park and the Dragon, Spasticity" by RG Smith.  It was written by a mother of the real Alex who had SDR in 2012 and a cute way to help her understand.  She also has had some questions randomly come up and we had a little Q&A last night so thought I would capture these in her blog (Morgan's perspective).

Morgan (Saturday in the car): After they cut a hole in my back are they going to put stitches in so the water doesn't come out?

Me:  What do you want to bring to the hospital?
Morgan: My baby alive doll (baby Linda).
Me: that's all?
Morgan:  Well and Boozle (Her hydrocephalus bear who attends all her medical appointments with her) my blanket and boogers (her blanky).  But you have to fix Boogers neck (it is well loved and hanging by a thread) because you don't want the doctors to think he is broken.

Me:  What are you scared of or nervous about?
Morgan:  Nothing

Me:  Tell me about the surgery, what are they going to do?
Morgan: Cut my back open and put stitches in, then its going to help me walk.

Me:  How long do you think you will be in the hospital?
Morgan:  22 days  (she said this as a matter of fact so maybe she's anticipating a shorter stay :))

I think she has it down!
Here is a BEFORE video also of her walking, excited to compare later to the AFTER!







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1 comment:

  1. JoseMarch 12, 2019 at 2:05 PM

    Morgan is in our prayers every night. (Avram Family)

    ReplyDelete

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