Skip to main content

When The Morning Comes

On a day like today, our two weeks in the hospital feels like just a bad dream. Did we really just watch our sweet boy brought to the brink of death and back? Was it just days ago that we held his unresponsive swollen hands and watched every heart beat on a monitor? If I didn't see his scarred and swollen scalp I wouldn't have believed it. He certainly acts as if nothing as happened. Except for being a little sluggish and cranky when we first brought him home, he now has come back to himself with gusto. I was worried that he would loose his goofy personality and trusting nature because of all the invasive procedures done to him, but that doesn't seem to be the case. If anything, he is even more goofy and loving then before! And just as I was putting him to bed tonight, I was getting his diaper from the other room and I swear that I heard him say "ma ma." No joke, the little dude totally said it. No one else was around, and though perhaps it might have been my imagination...I don't think so! Lion man can roar! Even though he has lost his mane. The swelling in the area between his skin and bone is going down everyday and it's fascinating to see his new head shape emerge. Although it's lumpy because of the plates and screws, it still has a very nice round shape that's very different from his original tall and ridgy head. And thank God, his head has stopped gurgling when you move it around. That was pretty disconcerting and weird...
The sun has dawned on a new chapter in our little lion mans story. No doubt there will be more trials for him and us, more discoveries to be found and other lessons to learn, but we can at least, turn the page on this. Hopefully he won't ever have to go through a surgery of this magnitude again!
But knowing Leo whatever it is that he has to go through, he will do it with flying colors.
Here are some shots from the last couple of days, and I will keep putting some new ones up as time goes by because his head looks different every day!




Comments

  1. Such a miracle...he looks so sweet and happy! I'm sure, being as special as he is...he did indeed shout out mama :-)Love the pics

    ReplyDelete
  2. To God be the glory!
    He is adorable. :)
    Tina

    ReplyDelete
  3. I've no doubt he said mama! When you catch it on video, you'll have to share it with everyone.

    He's so beautiful. Honestly, when you look at him, you get lost in his eyes. I have to remind myself to pay attention to the rest of his head in the pictures you're showing to demonstrate the 'before and after' effect.

    Glory to God for all of his blessings.

    ReplyDelete
  4. Yeah, he definitely said Mama! Everybody looks awesome!

    ReplyDelete
  5. What a total sweetheart he is.

    ReplyDelete
  6. Such beautiful pictures-and a miracle baby boy! So happy for you all. Our daughter said dada first...and she has been daddy's girl ever since!

    ReplyDelete
  7. My goodness he looks amazing! We are thankful for the good news. I wishI could hold him.

    ReplyDelete

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…