Belle Update: July 12

That's one excited Bella. She loves waving those hands around, and if you give her your finger she'll grab it extremely tight. She likes having someone there to hold her hand, someone to look her in the eyes. Belle loves eye contact, and she responds to anyone who's looking at her. She's very social and interactive. 

She's such a sweet girl.

Arabella had another low sugar at 3am last night. Luckily it wasn't too low. As soon as she's fed her sugar levels skyrocket, so we might have to feed Belle more frequently. It's the only way to combat her periods of low sugar without resorting to drugs. 

She'll be fine as long as she doesn't have to go back on the sugar meds. The Diazoxide would put her back a few steps with her breathing, and it would worsen her pulmonary hypertension. That drug is the absolute worst. It wreaks havoc, and we've seen it first-hand. 

We're getting closer and closer to being discharged. In the next week or two Arabella will be moved to Pediatrics. It's on another floor at Sick Kids. Once there, we'll start to prepare for the transition home. 

When will we be home? No one can give us a true timeline or estimate. It's all up to Arabella. My best guess is 4-8 weeks, but don't take my word for it. We'll just have to wait and see.

When we're finally home, it might be a juggling act with her feeds, meds, bone supplements, diuretics, and whatever else, but if it means getting her home, we'll take it. If we need to, Kiera and I will schedule shifts to feed her every 2 hours during the day and night, for example. We'll do whatever it takes.

So many things are still up in the air right now. Let's just take it one day at a time, shall we?

There's no sense in getting too anxious about the future. We've had a lot of good things happen lately - and we should celebrate that. Everything will come to us, as long as we're patient. In the meantime, we'll continue to enjoy our time together. 

We just can't get enough of this girl!