Skip to main content

And Just Like That

The swelling is gone.

Within a couple days, the waters under Leo man's scalp have gone! What a biazare thing. Just like the mad rivers that flooded our little towns after Irene receded in a matter of a day, so the same with little dude. We spent today coming up with adjectives to describe his "new" head. Not a cone head or tower head anymore, but more like a square head? Sponge Bud Square Head! It's very interesting to see now what they managed to change, and what stayed the same. Like his funky cowlick on the back top part of his head. Don't think I would have lost sleep over that being gone... In any case, it is a HUGE improvement over what his head used to be like. Wow! Although it still takes a conscious effort on my part to take off his hats in public. I think I can I think I can!

Leo himself is definitely feeling the freedom of the relieved weight. He can now hold his head on his own, with very minimal support on his trunk while sitting up, and even standing! His PT can't get any more excited about his progress. We are so proud him sometimes that we feel like our hearts would just burst. Perhaps this means that we can start to phase out all the "special" equipment that has found its way into our house. Nothing would please me more.

Sometimes I wonder, why did we get so lucky? How is it possible that from a terminal vegetative diagnosis we are here? Bouncing this giggly and cooing kid on our knee, and basically treating him like he's completely normal? How? Is there anyway that we can live up to this gift that was given us? It boggles the mind. The thing that we really don't want to do is take all this for granted. To start thinking that we deserve all this. Well heck, we surely don't and every smile, new development and milestone from Leo is like the best Christmas every single time.

Here are some shots of little lion's new look! On Monday we have a quickbrain MRI and meeting with the magicians who worked this magic for us, and hopefully we will get a clearer picture as to what Leo's future will be in terms of surgeries.




Apple picking in style! So thrilled he can ride in the backpack now.

Notice the scar. He makes Potter's lightening scar look really lame.





Just to remind ya'l of what his head used to look like:



Comments

  1. Yayyyyy to being able to hold his head up by himself!

    ReplyDelete
  2. Leo you are amazing. Way to go, so happy to hear about you holding your head up.

    ReplyDelete
  3. Glory to God in the highest and peace to his people on earth!
    Claire

    ReplyDelete
  4. FANTASTIC! Again I have to say that he is adorable. :) He must be loving the new vantage point! God is good.
    Tina

    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…