Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

So we upped the study drug again, and so far so good. I don’t want to jinx it, but maybe this is the right dose. It is a prety high dose, no wonder, but so far so good.
Lily and I leave on Sunday to head on to SLC. I will take a laptop with me so I will do my best to keep you all posted and keep me less bored, unless I have no access or something, we should be good.
I am a little nervous to fly by myself with Lily. It isn’t easy to get her carseat in the plane while I have no where to put her in the meantime. She needs full support at all times. I will have to ask for assistance. I am also concerned with fitting her wheelchair in the cab. But we’ll figure it out. I really wish I would have just decided to drive, but then again, I can’t imagine that being very fun. That would be a long drive.
Can’t wait to see her new wheels! It is so time for a new one!

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