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Saturday, July 23, 2011

Leap of Faith

Right around the two year anniversary mark and just shy of Christian's first birthday, things have slowed down just a little bit to allow some reflection over the last year.

The first year was just so busy that comparing the two sometimes makes me feel like we didn't do anything. And typing that out is an ironic metaphor for Christian. Often it seems like he isn't doing anything and to the untrained eye, it seems like just that - nothing. But just like Christian, if you look below the surface, take some time, and wait for it..."it's" there. However subtle, this second year brought "it."

So what did we do?

There are many small footnotes I could pour over and explain but I'm going to stick with the big guns.

1. We attempted the Ketogenic Diet.

We attempted it. I said I wanted to do it for Christian and we did. We tweaked, we fiddled, we calculated, and we recalculated. It was quite an undertaking and everything seemed to stop in lieu of this "crazy" high fat diet we were going to try.

After six months we decided it wasn't for Christian. But I would, by no means, consider this unsuccessful. In fact, the keto diet is what gave us the confidence to wean off seizure medication. If not for the keto diet, I might not have ever had the guts to do it.

Which leads me to my next big thing...

2. No more seizure meds.

A complete wean. Is he seizure free? Nope. Was he seizure free on the seizure medication? Nope.

First, let me put out a disclaimer that this is a choice we made as a family for Christian, who is unlike any other little boy, brain damage or not, and we made this decision specifically for him. I do not promote getting all renegade, not listening to your doctor (although I might prove the contrary), and going cold turkey off medication. This can be very, very dangerous.

So speaking as Christian's mom and on behalf of Christian, this is the decision that was right for him. After watching every medication fail, after watching my son on doses of medication that could knock out a grown man, after still seeing seizures and, in some cases, more and newly developed seizures while on heavy duty seizure meds, we decided enough is enough. With brain injury time is your best friend and your enemy. We would not accept that even more seizure medication might make things a teensy bit better, but it probably won't, but, hey, just for kicks add this medication and see what happens.

I know the statistics, I've done the research. If a first and second seizure medication are not successful, the chances of a third, forth, and even fifth medication working diminish to below 5%. We are just not going to experiment with this anymore. Now if a new fangled seizure medication rolled into the market and promised to be the saving grace of epilepsy, would we try it? Of course we would consider it! Until then, we are not doing this anymore.

And you know we now see less seizure activity. Some of the seizure activity that came right after waking up have gone away. Just poof! He's done with those!

Again, this is not for everyone. But it is the right decision for Christian. It was a big, HUGE, GARGANTUAN leap of faith. There is this fear that what if things are okay but we think they're crappy and we take away this med and things get even worse? What then? Leap of faith, baby.

3. Holy head control!

All of the sudden, Christian could hold up his head.

Now granted, he's always shown progress with head control, but it's been a lot of extension. Somewhere between our trip to Euro-Peds and the onset of the keto diet he just started holding up his head. For long periods of time. Like, minutes. And he hasn't stopped.

So what do we have lined up in the future? Well, you know we just can't sit on our laurels letting life pass us by, right? We have the VNS surgery and our first day of school and that's just coming the next month!

It's all just one big leap of faith, I think. Some days I'm running lower in my faith supply than others. But it's there keeping us going just waiting for us to jump.

We're taking just a short break before the August rush to sit on our respective laurels before it's time to jump again.

Sitting on laurels.

 I know this picture looks nicey-nicey but it's really more of a punishment. It was the only position that would break up Christian's arching and extension! So there he punishment.

Year three has commenced. Ready to jump?


Caroline said...

Shauna, not that I'm one to want to promote seizure meds...god knows, if I could remove one of our AEDs, Phenobarb would be the absolute FIRST to go, but I have to ask, have they tried Topamax for Christian's seizures?

Phenobarb doesn't work on little know I did the research...and I think it's crazy that these doctors STILL use it knowing it doesn't work! But the Topamax, it works...and the studies show that it's VERY effective on seizures caused by hypoxia...If it hasn't been tried and you decide you want to try another out, push push's been our miracle!

Stacie said...

You and Christian are making remarkable progress! You are trusting yourself to make the right decisions for Christian. No one could do more. If I could rule out seizure medications, I certainly would. So glad he is doing so well.

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