Skip to main content


Leo came out of surgery and he is spending the night in the hospital in the PICU (pediatric intensive care unit).  His shunt replacement went fine although he is in a grumpy post-op state (as he should be) and when not on a few pain killers he is taking some milk.
PICU is quiet.  We didn't think it would be given that so many tragic cases go through there, but it's more mellow than the NICU (neonatal intensive care unit), at least now.  Maybe kids aren't going out and hurting themselves right now to scare their parents.  Thank God!
Anyway, as far as Leo's parents are concerned our nervous temperature is down considerably from NICU days but it is still a trial to watch your baby go off to surgery.  On his release forms I always want to sign "take me" instead of my signature.  Nevertheless, we handed him over to Dr. Durham and her professional team knowing full well they are damn good at what they do.  During the surgery we sat on the wonderful cafe patio and baked in the early Fall sun, read magazines, and relaxed (to the best of our ability).  They paged us when Leo was done and we went to join him to the PICU.  The doctors said that he was inconsolable until we showed up.  We literally walked into the room and he quieted down.  There is a debate in the medical journals about how much consciousness babies with hydranencephaly have.  Much of the "theories" derive from watching how these babies interact with the environment.  Some say their response to the environment even in little ways, whether it's a smile or a a tactile response to an object etc., may or may not be a sign that they are registering at the "consciousness" level.  But this is sketchy territory.  It seems that hydran-kids can register the environment in a sensory way.  But this is not saying anything new or profound.  All human beings take in the world in a sensory way.  What the "consciousness level" is is debatable.  That is the realm of psychology (something I am interested in myself).  In Leo's case he can register the sensory input normally.  Hence he knows who his parents are when we walk into the room full of doctors swarming around.  Amazing.
Let the consciousness debate go on.  All babies are the same.  They are malleable sensory beings.  If you think they aren't conscious even at a very basic sensory level, watch out!  Parenting starts early, early, early.  I didn't know this with my first child but now I am more dialed in.  Many prayers should go out for all those babies and children who are neglected and unloved due to parents ignorance about the emotional registers of their baby.  It begins at this most basic sensory level even in the womb.  Enough of this for now.  Please weigh in on the debate.  Good night.           


  1. I m so glad the little lion did so well. What a great posting. From the beginning I've thought the little guy has this other worldly quality about him. Almost like he can stare right into your soul. I completely agree with you. Love is sensed and what is more comforting than love? Leo won the lottery when he got his family. I love that your mere presence was so comforting to him. Many prayers for a speedy recovery.

  2. Glory to God for a successful surgery. I didn't find out about it until after it had occured and I felt bad that I hadn't been able to pray more specifically. But Leo is on my daily prayer list so the prayers go up whether I know what is going on or not. God is good.

    May he continue to recover so beautifully.

  3. So great to hear that our little hero and champion did it again!
    Every living being responds to love. It is the biggest gift one can give to another .It is a piece of yourself. Anna and Justin you have enveloped Leo in a thick and protective blanket of love. Whether on a conscious, unconscious, intuitive or God inspired level he is more than aware of it and will respond. He is one blessed baby to have you as his parents.
    As I read this post like little ghosts all the children in the Russian orphanage were resurrected in my memory. Perfectly “Normal” kids void of the magic of parental warmth care and guidance. How utterly terrible that so many people are not loved.
    We need to pray for children like Leo
    We need to pray for their parents and grandparents
    We need to pray for all abandoned humanity
    We need to pray!
    Lots of hugs and kisses to all

  4. Thanking God! Leo is the bravest, strongest little Lion. No doubt all your parental love, through Christ, gives him his strength and awareness. We continue to keep you all close to our hearts and prayers.
    Keenly aware of Leo everyday...reminding us of our very own children; to be dialed into them at all times. Thank you for sharing, once again, your thoughts with all.
    Kelley & Fr. Raphael & kiddos


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…