Remember when I talked about routines? As humans we innately have routines. We thrive on routines. It throws us in a loop when those routines get messed up.
We had a routine down. Bridger was sick. Everything he did was because he was sick. Any odd movement or jerking was a seizure. Bridger sleeping all the time was because of his medications. Bridger NOT sleeping was because of his medication. Bridger crying ever two hours of the night were because of bad dreams or seizures. Or both. There was a point that whenever he started smiling we knew a seizure was close behind. This was our routine, our daily lives, and how we lived each day. Things are different now and our routine has changed. It has been hard to adapt.
You would think it would be easy. I'm not saying that we aren't just ecstatic with where we are now. Because we are! I'd say we almost feel like it is too good to be true. We have been so on edge (well maybe just I have been on edge). Now that Bridger is not being overdosed, the seizures have stopped, and the crazy brainwaves are gone, he is acting so weird! It is driving me crazy!
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| That about sums up how I'm feeling these days |
He moves around all the time! Repetitively. He kicks and wiggles and flails his arms all over the place. He takes his arms and smacks them down on my or the bed over and over again. Ah! Is it a seizure??? He has moments where he'll start screaming his head off and then instantly stop. Little seizures maybe? There was one night where he puked up everything he ate and woke up every two hours. Great now he has seizures and a tape worm in his gut. He keeps on grabbing onto his ear. Ugh ear infection? He won't look at me, he looks at everything else going on like bright colors, music, and of course the fan. I knew it, his peripheral vision is ruined because of the Vigabatrin. Oh no he's smiling again! Here comes a seizure?! He's sleeping all night again. Did he go into a coma? Is he breathing? You better believe I'm checking on him every hour of the night. Gah!
I started bringing this up to people and they all looked at me like I was crazy. Want to know what response I got?
This is what normal babies do.
These things are normal? All weird movements and moments of hysterical crying are not signs of total catastrophe inside my child's brain? What?! This is not normal for us. The routine that we were thrown into for 2+ months was not like this. We are SO backwards!
Bridger's physical therapist came over yesterday and she was impressed on how well he was doing. She kept on commenting how he is like a new baby. I explained to her how confusing it is to have him "normal" again. She smiled at me then looked at Bridger and said, "you're going to have to teach your mommy all over again."
I don't know if I'll ever stop worrying about seizures in the back of my head. We're still not out of the woods yet. He'll have to be weaned off of his medication eventually and who knows if the seizures will stay away. They could break through and come back. When he started getting better and laughing again I commented to Jake that I am afraid to enjoy it. I'm afraid to get used to this new baby. I don't want to get attached to his laugh, his smile, and his improvement. What if it goes away again? I can't imagine feeling that heart break all over again.
I have a pretty smart husband. He told me that if it does go wrong again it will hurt regardless. Why not appreciate and enjoy him? No matter what the pain will still be there if the seizures come back. Just enjoy him.
So I have been. Every smile and every giggle I get from him is a blessing. One that may or may not be taken away from me again. Once again the routine has changed and now Bridger has the reigns. It's been fun so far and I hope it stays that way. On a final note here's what we wake up to...EVER MORNING at 6am on the dot! :)
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