Waverly has had 4 seizures in 8 days. That's too many times of seeing your baby blue and not being able to do anything about it. I'm feeling a little weary from things lately. I think all the long, extra appointments, coupled with the seizures, are weighing heavy on me the past few days. That added to the rest of normal, everyday life is sometimes just a lot to handle.
I get tired of being so functional, of powering through all that is needed and necessary, and just want to sit down and, well, I'm not sure. I don't know what normal is anymore, and I don't desire normal since I'm not even sure how to define it and since I know the richness that life can be. But the richness of life means that it's hard. The sweet is oh so sweet; the bitter is oh so bitter. And to be honest, experiencing both the highest of highs and the lowest of lows, while rich and fulfilling, is draining. Does that make any sense?
Please don't worry. I am ok, just expressing how things can be some times. It's just been catching up with me these past few days.
In other news, Waverly had an appointment with the GI doctor on Thursday. We are trying to figure out what new formula to switch her to that our DME (durable medical equipment) company carries and that's best for her. He also ordered her to have a mineral oil enema and a stimulant suppository if she doesn't have a bowel movement in 24 hours. So we gave her both on Thursday, and after tons of poop, her tummy was SO much less distended and her o2 sats were much better. Wow! Of course, she didn't go yesterday, so I don't know if this is going to become a regular thing or not. I hope not though!
We also did a urinalysis that day, which was clear. Not much else to report on her test from Wednesday either.
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