Winter Worries

No snow in Vermont yet, but some pretty frosty mornings!

So we've been spending some time at home lately...a lot of time actually...

So much time in fact that in my mind, it's what hibernation would probably feel like, just without the actual sleeping part.

Leo's been having a rough couple of months, and I never know which way the day will go, so that makes planning outings ahead of time kind of a non-issue. 

Ever since the return of the seizure monster the Lion Boy has just been "off." 

Phrases such as "off" or "just not himself," are phrases that doctors in general abhor hearing. Mostly because they require some kind of diagnostic response, but give no usable information to help with that...

But woe to a doctor who ignores these phrases because as everyone knows there is nothing more accurate than a mother's instinct about her child's health. And consequently a mother's wrath if she thinks her worries are being ignored.

Point in case: Leo has been having some very, very, very strange episodes of what I, and my mommy gut, diagnose as severe head pain; screaming, vomiting, passing out - migraines.

After two weeks back and forth from the hospital doing tests etc, the doctors still don't know why he is having migraines. I think they are settling on the "well some kids just do" diagnosis, but my gut is telling me it's just a piece of the big picture puzzle of what's going on with the Lion. So far that half completed picture to me looks an awful lot like Leo's shunt.

Granted Leo definitely has a uniquely structured brain which works in its own mysterious ways, and granted, Leo's MRI and X-Ray last week did not show any changes, I am still not convinced that the shunt should get off with a "not guilty" verdict, simply because of the facts that Leo has never ever presented with migraines before, and even when in the middle of a shunt failure, his MRI was "unchanged." The last time he did have supposed migraines was when his shunt was failing (quite spectacularly) two winters ago at the this time. Do you see my drift?

For crying out loud, it's always his stinking shunt!

All of Lion boy's troubles originate in the fact that he was born with "profound hydrocephalus," actually it was the most profound they have ever seen in these parts. 

That's his thing. 

It's like a trademark.

The seizures, the delays, the gazillion surgeries, it's all because of the hydro.

Those are just the negative things of course, because there are a whole lot of positive things that make him the amazing kid he is, mostly because of the hydro. 

His fight for life, his amazing strength, his unshakable love for those around him despite all the crud that has been done to him; those essences of Leo.

It's possible that the migraines might be medication related, but I'm not sold on that, since neither of his meds have migraines as a side-effect. In fact one of his meds is commonly prescribed for migraines! If it is a failing shunt, which my gut would bet money on if it had any, then the only thing to do is wait until it is abundantly obvious to everyone else that it is so. The problem is...two years ago during the terrible shunt failure, I promised myself that I would never again let Lion boy get as horribly sick as he did. I would never again just assume that when the docs say "it's not his shunt" that it's not. I will assume it is guilty until proven innocent without a shred of doubt. Unfortunately in the world of shunts, degree of illness is the primary diagnostic tool, though the events of two years ago beg to differ because his shunt failure then was very unusual and strange and not typical.

Since Leo is not a typical kid, this surprises me not at all!

Anyway despite my almost constant worries, we managed to enjoy a lovely Thanksgiving at our house for which Leo really rose to the occasion and spent the whole evening coercing and terrorizing every single person into playing ball with him. It's a good thing that there were plenty of family members to rotate the ball playing duty throughout the evening. 

Although school has been up and down for him with bad days mixed into the good, he's been speaking more and more sentences, pulling out the odd phrases with his usual impeccable timing: one of his nonchalant "Hey guys, what's up? What's going on?" Brightens my mood to no end. 

He also, just last week, came up behind me as I was kneeling on the floor cleaning something, and putting his arms around my neck and leaning his head into my back said, ever so sweetly, "I love you." 

It's funny, that phrase really can make everything shiny and wonderful and melt those winter worries. At least for a little while.