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Surfs Up

So Leo...

As always...

is redefining, changing expectations, and making his parents re-examine priorities and learn new stuff.
In other words? He's doing his little lion man thing.
In between reading books about the brain, (check out the title: The Brain That Changes Itself) finding info on the bottomless web, and calling his docs every other day, we are definitely learning new things. The brain? Yeah, it's just pretty freaking awesome. I won't get into all that now, except to say that the brain is the most mysterious organ in our bodies, and that the more they find out about it, the more they realize they don't know.
That also sums up Leo's brain pretty nicely. Every time they do an MRI, they see more brain tissue. It seems like his brain is continuing to decompress since the surgery, and things look really great in there. There is no way, however, for them to predict what his development will look like, but chances are that he will as usual surprise everyone. His neurosurgeon admitted that in all honesty they rarely judge the kids by their scans for that very reason. Although Leo's scans are nothing short of miraculous when we look at them in chronological sequence. So that's whats happening on the inside, however the outside is another story. Leo has what they call a moderate subgaleal fluid collection in his head. So basically his head is all squishy and sloshy with fluid right under his scalp. So it's not in his brain anymore, its all on the outside of the bone under his skin. This fluid has been giving us plenty of worry since not only does it looks plenty weird, it also gets worse sometimes and it's still hampering and weighing little man down. After stalking the docs and pestering them with questions we have finally nailed down what to expect from this surf that's taken up residence in our Lion's mane. Because of all the tissue layers that have undergone severe trauma and damage have all separated and filled with fluid as a result. The only way the fluid will go bye bye is by the slow process of the tissues knitting themselves back together and adhering back onto the skull. And I mean slow. I had Leo's doc dig back through the files to find similar cases, and she was only able to find one where there was this ocean hanging about. And in this little girl's case, hanging is the key word. Every time the poor dear sat up the fluid would run down her forehead and swell over her eyes and make them shut. As you can imagine this was in the very "not cool," category for her parents. So after a second and third opinion they were resigned that nothing could be down except to wait. And wait. And wait. Brace yourself folks: it took that little girl from 6 months to a year to get rid of that fluid collection!!!! Whoa! And the file particularly stressed that the fluid would "wax and wane," before it was completely absorbed. So that's that. In some way it was a relief to know that Leo's water was doing it's normal thing on those days where it seemed like the swelling was twice as bad. It was also strangely comforting to finally hear a real projected time frame for the process. Comforting and kinda depressing. I want instant gratification folks! At least we know it's not his shunt. And maybe there is something even endearing about the way the water ripples around as he moves. At any rate, he's going to be wearing nylons on his head for a long while yet! (We won't tell him what his hats were made out of when he will be a teen...)

Here he is sporting his new toothy/teethy grin and being as cute as only Leo can be! Thanks for all your prayers, and at a risk of sounding cheesy, they really do work! All your prayers have worked mircales in our life, and have given us faith in times when we thought we were adrift in darkness. Gee folks, keep it up, since though Leo is doing steller, he still has lots and lots of healing to do! Love to you all!


Comments

  1. Leo you have the greatest smile. continue prayers.

    ReplyDelete
  2. Those are the sweetest photos. Not just his smile, but his _eyes_! :]

    ReplyDelete
  3. He is amazing - my love and prayers continue to come your way - keep up your good work - you are incredible parents!

    ReplyDelete
  4. I cannot imagine a day that I will not pray for Leo......it has become part of my breathing, and the way that my day starts. God keeps him safe in His arms.

    ReplyDelete

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