Who is Malachi? What type of CP does he have? What is CP anyway?



It's unbelievable to me that less than two years ago I had almost no idea what cerebral palsy is. These days it's soooo much a part of my life that I forget even that I can't just use the CP acronym when talking to strangers.

Anyway, cerebral palsy just means the person had a brain injury very early in life. That's it. It doesn't tell you why the injury occurred (common reasons are stroke, premature birth, or trauma), how severe the injury was, nor how much functionality the person has or where in their body they are most affected. As I talk about here, to me, those distinctions didn't used to be important, so perhaps they aren't to you. Malachi has trouble moving and that's all you really need to know.

But now, now, these distinctions seem HUGE. Cerebral palsy can mean anything from a minor limp or lisp to total reliance on technology to do such basic functions as eating and defecating. It actually seems sort of crazy to me that all people with CP are lumped together under this umbrella term, but there you have it.

So where does Malachi sit on this massive spectrum? Well, we are still in the process of figuring this out. Before children reach the age of 2, it's almost impossible to tell what their functionality will be when they are older and even after that it is very hard, especially with the latest advances in neuroscience. But, now that he's getting closer to 2, we have a little better idea.

Malachi's official diagnosis is non-spastic extrapyramidal quadriplegic cerebral palsy resulting from Grade III periventricular leukomalacia (PVL), likely resulting from a birth at 29w5d and perhaps due to a velamentous cord insertion. Translated, this means that, despite my best efforts, Malachi was born 10 weeks too early and had an unspecified bleed deep in his brain (in the basal ganglia, most likely) which causes him to be pretty uncoordinated.

Functionally, this means that at nearly two years old, Malachi is just barely starting to roll onto his tummy and belly crawl a bit. (You can watch a video of him here.) He can prop sit as long as he isn't distracted and he can stand for 5-10 minutes if you lean him against something, like a table. But he has very poor reflexes and will topple over if anything unexpected happens or he gets overly excited about grabbing for something. He also has delays in speaking, though as of this writing he has a growing list of words and signs and is rapidly approaching his twin in communication abilities. He can also read several letters and numbers, like A, E, S, O, 1, 2, and 8.

I know. He's a frickin' genius.

He also is diagnosed with dysphagia, which means that he has trouble chewing and swallowing. He still gets two bottles per day for nutrition but is slowly increasing his solid food intake and there are several foods he can feed himself (very messily).

Overall, I would say that his body has the coordination of a six-month-old while his mind is nearly on-track with his twin.

When I read blogs of other parents of children with CP I always wonder what they look like above and beyond the inherently limited textual description. For all that, I'm pretty bad about posting videos. So, here's a link to my Vimeo profile so you can see all the videos I have posted publicly: http://vimeo.com/user7544873

Malachi's primary form of therapy is the Anat Baniel Method and I encourage everyone to look into it and/or read a copy of Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs. I think it's part of the wave of the future in treating brain disorders.

One more thing. Malachi is also an incredibly loving and social human being who adores books, cars, buttons of all sorts, laughing, tickling, cell phones, bath time, bubbles, and his family.

He is far more like any other kid you have ever met than he is different.


8 comments:

  1. Anonymous10:26 PM

    So interesting. I love that you put what else makes him who he is at the end!

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  2. Thanks for sharing your journey through CP so far. It really is like trying to negotiate your way through a multi-level maze, and never quite knowing where you're going next or what you're going to discover.
    I love your closing description of Malachi, he looks like such a lovely fun wee dude!
    Tui xoxo

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  3. love this post. the facts which are elusive and those that are clearer. Malachi is a kid much like all the other kids out there - yet he is not. He has CP which means his journeys are not defined by the "norm" and his gift is also CP and unexpected path it will be. What a smile Malachi has - it creates an instant smile on the faces of everyone I show it to. So glad that your time in california has been positive. You and your family are awesome! Journey On!

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  4. Love it! He is such a sweetie.

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  5. How adorable is that smile! He's as gorgeous as his mama! Great description!

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  6. Thank you for sharing! What a beautiful family you all are! Sending positive thoughts and prayers, specifically for those requested for Malachi's recovery, and also for funding to continue to flow in so that he may receive the therapy that is helping him grow. Love & Bright Blessings to you all.

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  7. wow I just stumbled across your blog and love it so far. How similar my son's story is - born at 29 weeks 5 days. He has PVL too, and has diplegic CP. I'm subscribing, I need all the info and sense of community I can get. Great blog, adorable boys!

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