Oh sugar!

Arabella is very sweet, but her blood sugar isn't always so.

Right now Belle's getting two different drugs for her hypoglycemia. A larger dose of Octreotide, and a minimal one of Diazoxide. Diazoxide proved to be too much for her last week, and things fell off the tracks. 

And guess what happened this morning? Her sugar was low again. Arabella likes to keep the staff on their toes. 

Her sugars are being monitored very frequently. 

We spoke with a lot of people today regarding the drugs she's taking. Each drug has upsides and downsides, and unfortunately there's no alternative at this point. She needs something to keep her sugars up between feeds, and feeding her longer or more frequently doesn't fix the issue, sadly.

If her sugar level drops for too long it can affect her mental function, so Arabella's future is riding on these drugs.

The drugs mess with her hormones and immune system, though. They're complex. Some of the side-effects can put her at risk for a lot of harmful situations, and that makes us feel very uneasy. 

Her sugars are the priority right now, but they need to be managed alongside her lung disease and fragile bone condition too. It makes her a special case. 

It's a very complicated situation for the staff. It's difficult from our perspective too. 

We know the severity of low blood sugar, and we don't want Belle to grow up with learning disabilities. At the same time, it's hard to imagine being dependent on these drugs until she grows out of this problem. Hopefully one day she will, but it could be months or even years before that happens. 

The Endochronology team are going to try and balance all of these drugs. They'll attempt to find a middle ground, where her lungs and bones wont be compromised either.

It feels like a juggling act with knifes and fire - and we can't bear to watch it sometimes.