Hospital queues

Today we are spending the day in hospital to find out what is happening to Abbeys gastro system. Here we wait for the VNS to be turned off before heading to the procedure room. Abbey will be going under general anaesthetic. I have started a newborn wool cover for cloth nappies. Let’s see how much I get done! I’ll post through out the day as we advance along the waiting queues.

School excursions

Day 193

I joined Abbey on a school excursion to the Queensland museum. There was not a lot of interactive displays for her, apart from this ‘crab pool’. It’s a motion-sensored light display. If Abbey tapped her hand, it caused ‘ripples in the water’. We stayed there for nearly 40 minutes chasing crabs and making waves!

It was magic.

Adapting

Activities I dislike doing, but need too when I know a big seizure is coming:

Showering
Brushing teeth
Sleeping
Checking the mail
Being on the phone
Gardening
Cooking

Why?

Because I cannot hear her, cannot get to her fast enough or it can be dangerous (I managed to melt a microwaveable vege steamer a few weeks ago).

Sometimes I’ll brush my teeth in her room.
Sometimes I won’t answer the phone.
A lot of the time my garden dies from lack of attention.
Sometimes I hand bathe so I can hear her.

Adapting is key.

Rangehood holes

Today 2 more medical appointments came in for Abbey. There are a few more days gone to driving, waiting and brain strain. It’s no wonder we just cannot get to small jobs around the house.

It’s ok now. I use to become very frustrated as to why we just cannot get stuff done. Now, I know. It’s what we do to manage our family that is priority, everything else is second. 

The holes around our new kitchen exhaust fan are many months old. Instead of being a reminder of what we should be doing, they have become a reminder of the joy and family time we prioritised today.

It’ll get done when it moves up the priority list or we find ourselves with nothing to do one day! Those days will come, but I don’t want it to be soon. I’m happy to wait decades, because then I know Abbey will be with us.