Belle Update: July 3

Arabella's doing very well lately. Her breathing hasn't been an issue since they've started dropping her Diazoxide dose last week. 

Her breathing is a lot better. 

We're continuously watching her sugars. Every 3 hours the nurses are pricking her heels in order to get a reading from the glucometer. 

Her sugars need to be 3.5 or higher, and she can't have two bad readings in a row. The Diazoxide dose is only lowered when her sugars are stable for 24 hours. 

That drug causes her breathing issues. It's likely one of the main reasons why Arabella's still on the CPAP mask. That's why she can't move forward. 

It also makes the fine hair on her body grow. It's a peculiar side effect, don't you think? 

Her forehead has gotten a tad hairy, but you can only see it up close. It's kind of funny. So fuzzy 😊

It's not really the side effect we care about, but it's the only one we can visibly see. What about the side effects that we can't see?

These drugs are nasty. There's no nice way to put it. No little one should take these drugs unless they absolutely need to, so we need to help Belle drop these meds as soon as possible. 

Same goes with her reflux meds, Omeprazole and Domperidone. It's questionable whether she even needs them, and that bothers us. 

There are drugs at every turn. 

Sometimes it feels like we're going from one drug battle to the next. You have to fight for your little one here everyday, you have to watch them closely, and you can't let anything go over your head. You need to do your homework, keep track of every drug and every dose. 

You need to constantly advocate for these little ones at every step. They're definitely worth fighting for!