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. margaretSeptember 11, 2011 at 12:32 PM

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

    ReplyDelete
  2. JuniorSeptember 11, 2011 at 4:57 PM

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

    ReplyDelete
  3. MannaSeptember 11, 2011 at 5:36 PM

    Amazing! Glory to God!

    ReplyDelete
  4. AnonymousSeptember 11, 2011 at 6:10 PM

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

    ReplyDelete
  5. cassie beerSeptember 12, 2011 at 8:37 AM

    He looks AWESOME!

    ReplyDelete
  6. AnonymousSeptember 12, 2011 at 3:01 PM

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

    ReplyDelete
  7. Calories and CoffeeSeptember 12, 2011 at 9:11 PM

    He looks amazing!!

    ReplyDelete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...
34 comments
Read more

Pharmaceutical Fallout

"Back to the hospital?! You're joking right?!" 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. Day 1 Day 2 (rash got progressively ang...
2 comments
Read more

Putting The Lion Back Into The Wild

I'm actually home tonight while the 'boys" are at the PICU for what could be, maybe, possibly, our last night. It's almost hard to believe that we could go home. It's like those animals who have been in captivity who are finally let out almost don't know what to do, and often cower in fear and confusion in their cages. We would be cowering, but that sounds like it takes too much energy. We are completely exhausted after ten days of this shunt malfunction marathon.  Yesterday afternoon Leo had the hopefully final surgery to fix his shunt. The Neurosurgeon replaced all the tubing and tunneled a whole new channel for it as far away from his lungs as possible. During which he discovered that the connection between the tubing and the shunt valve was leaking and welling up CSF as he was examining it. Also his old tubing was inserted pretty high under his breastbone which often can jeopardize the integrity of the surrounding tissues; in other words, the plu...
8 comments
Read more