Skip to main content

Let's Talk Brain

It's amazing how many times during one's daily interactions the brain comes into conversation. Almost as much as God. We all know we take the Lord's name in vain. It's a fact of life. I've been known to exclaim, "Jesus!" in annoyance just as often as the next person. Same goes for the brain. "That's retarded," or "What am I? Brain dead?" Etc, etc, etc. "Playing with a half a deck" was always my favorite. Kind of ironic now ain't it?

This might be a recap for some of you, but for those folks who came into Leo's story later in the game, here is the official definition for hydranencephaly: "...a condition in which most of the brain mantle (cortical plate and hemispheric white matter) has been damaged, liquefied, and re-adsorbed." This condition may be the end result of more than one causative event. Infection and massive vascular occlusion involving the carotid arteries are the two most often cited. Because hydranencephaly may be a result of different processes the imaging can be somewhat variable. The "classic" appearance is complete replacement of the cerebral hemispheres with fluid. No cortical mantle is visible on MRI. The thalami and cerebellum are usually spared. Some sparing of the inferior frontal and inferior temporal lobes may be present. Basically Hydranencephaly indicates that a child is missing much or most of their cerebral hemispheres, that is, the two masses of folded brain tissue (cortex) that surround the brain stem.  Literally "anencephaly" means "without brain", but this is technically incorrect as a term for the cases to which it is applied, which almost invariably have a brain stem. The brain stem is most definitely a part of the brain, and a very important part of the brain.. " And to cap it all off, Leo also has, in the exact words the radiologist used when first we heard of all this, "massive hydrocephalus." Wiki's definition of this: (pronounced /ˌhaɪdrɵˈsɛfələs/), 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, and mental disability. Hydrocephalus can also cause death. The name derives from the Greek words ὑδρο- (hudro-) "water", and κέφαλος (kephalos) "head." Whether Leo's hydrocephalus is because of the brain damage from the hydran, or the cause of it, no one can determine. 

They say we only use ten percent of our brains anyway, but what if ten percent is all you got? Well according to Leo, it's perfectly enough for him to run off now, and what's all the fuss Mom and Pop? 
Here's to hoping that Leo's half a deck has all the good cards in it. 
Tomorrow afternoon we've got the appointment with the neurosurgeon again to talk about shunt revision. Depending on what we decide to do about the fluid build up, Leo will probably be going into surgery probably not the same day, but very soon. As much as I hate the thought of surgery, I hate watching his head get pressurized worse. Pray for him, and for us. 


  1. Dear Anna & Justin,
    Our prayers are with you always. Poor little guy...He is soooo fortunate to have you both and such a wonderful big sister as well. God Bless you tomorrow. Let me know how it went. Love you all

  2. Keeping all of you in our prayers. We love you!

  3. Thinking of you every single day. John Basil misses you and wants to see "the picture of Nika holding Baby Leo" more than once a day, and for a very long time. "Can we record them on the computer" is a common request. It means: Let's iChat! Just know we love you, and if you want, let's set up a time for the kiddos to see each other again - if only virtually.

    Sunny Mother

  4. I am just coming to your blog for the first time. I've read it from start to finish, and will now being praying for Leo and your family. He is adorable and such a blessing even to those of us who will never meet him. You will be in our prayers.

  5. Our thoughts and prayers are with you.

  6. Dearest Anna and Justin,
    It must be soooo difficult and confusing at times to know what the optimal medical choises are for Leo.Be assured however,that all of your decisions are based on your unconditional love for the little guy,so MUST be the right ones.I stand in awe at your unfailing faith, courage,and ability to embrace others at such a trying time.Thank you for keeping up with the blog.By now we are all addicted to Leo and have a very intense need to know what is going on.
    Be assured that Leos half a deck has all the right cards for him! In fact in the bigger scheme of things his deck is PERFECT!
    We love you, think about you and pray for you daily.

  7. You show us how to be fearless through your handling of fears. Thank God for the family of you.


  8. We love you all. Thank you for your courage, patience and love in the face of all that you are bearing right now. They are a beacon of light for so many of us, and will continue to be so. God bless baby Leo and his family.

    Lydia, Taylor & Lucia


Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…