So my dilemma is this...
We've had some really good days on Vigabatrin. I'm talking days with as little as two clusters. 15 seizures. Days that make my heart skip a beat...like...this could be the one? This could be our miracle days.
Kinda like when I scanned the insert which read if you have kidney issues you cannot take Vigabatrin. And how Trevy did have kidney issues. But how we didn't want to take him back to (the bush) Tanzania with kidney issues. So we opted for the agressive treatment. Surgical correction at six months old. Before we ever knew a lick about IS. Or AEDs. And those you can't take without perfect kidneys. And now Trevy doesn't have kidney issues any more. And one thought leads to another until I have myself convinced God knew that Trevy would need perfect lil' kidneys to trial this drug. This drug that has given us some good days. This drug that could be our miracle. Right?
And then we have ear infections (or any ol' infection) days. Seizures through the roof. Making Trevy cry. Making mommy cry. Stressed out...and yelling at the kids kinda days. I hate these days.
But the good days are like a hook in the heart.
And so here I am having this mental tug of war. Thinking if I can just get Trevor healthy for two weeks in a row...maybe...just maybe we'll be able to know for sure which way to go with this drug.
Because even though today is a bad day. A seizure day. A crying day.
The hook of the good days we've had pinches my hope spot every time I look at the T-Mobile wondering if I should make the call. The I think it's time to pull the plug call.
Ack!
Over thinking things is my flaw. One of the my flaws.
We've had some really good days on Vigabatrin. I'm talking days with as little as two clusters. 15 seizures. Days that make my heart skip a beat...like...this could be the one? This could be our miracle days.
Kinda like when I scanned the insert which read if you have kidney issues you cannot take Vigabatrin. And how Trevy did have kidney issues. But how we didn't want to take him back to (the bush) Tanzania with kidney issues. So we opted for the agressive treatment. Surgical correction at six months old. Before we ever knew a lick about IS. Or AEDs. And those you can't take without perfect kidneys. And now Trevy doesn't have kidney issues any more. And one thought leads to another until I have myself convinced God knew that Trevy would need perfect lil' kidneys to trial this drug. This drug that has given us some good days. This drug that could be our miracle. Right?
And then we have ear infections (or any ol' infection) days. Seizures through the roof. Making Trevy cry. Making mommy cry. Stressed out...and yelling at the kids kinda days. I hate these days.
But the good days are like a hook in the heart.
And so here I am having this mental tug of war. Thinking if I can just get Trevor healthy for two weeks in a row...maybe...just maybe we'll be able to know for sure which way to go with this drug.
Because even though today is a bad day. A seizure day. A crying day.
The hook of the good days we've had pinches my hope spot every time I look at the T-Mobile wondering if I should make the call. The I think it's time to pull the plug call.
Ack!
Over thinking things is my flaw. One of the my flaws.
Comments
XOXO
And don't feel bad, every one of us has those days where we just want to scream at everyone else to just go away. When I get to this point, I tend to go find a quiet spot, usually the bathroom where I can guarantee alone time, and just sit for about 10 minutes and breathe deeply. It's amazing how deep breathing relaxes you.
That little voice, that niggly feeling, intuition is priceless...as we all know...especially if we've ever ignored it and felt the aftershock of that!:)
Here's to more hooked in good days for you & your family!
Hugs,
M