We have been pushing the Prednisone down,

trying to get her to a maintenance level, where she is not as adrenally suppressed

when we got to 10.5 mg she blistered.

She was sick at the time, so I just thought it was because of that.

I pushed her steroid up for three days and the blisters started to resolve

but when it was reduced again the blisters came back worse than ever.

Lather, rinse, repeat.

At 15mg and while I was away, the blisters just kept on coming, in the same sort of cycle that she had

before we had a diagnosis,

before the Pred,

before the IVIG.

She has been sad and in pain and last night, while she was crying on the lounge, after a new crop of blisters had appeared,

 I felt so, so low and sad for her.

This morning she has been still and quiet, on her trusty couch.

Just waiting, like me, for the next IVIG infusion.

The last few months have proved to be difficult.

I won’t lie.

Her energy levels have been down, she has been picking up infections again and meltdown week has been hard.

We have been pinning everything on the increased IVIG

but it had not been forth coming

until today.

This morning, the immunologist called.

Ivy has been approved for the increase.

Her  infusion is on Monday coming, then the next will be three weeks following.

On her 4th birthday.

It’s a bit sad that she will be in the hospital on her birthday

but, honestly,

getting the increase is the best gift she could hope for.

It’s going to be a really great Summer!

Thanks to Badness Jones, who gave us the lowdown on  previous egg vehicular success, Maddy’s ovular friend lived to see another day.

In fact, several days

until Sunday, when our fridge died

and so did the eggman.

He stunk out the whole kitchen

or perhaps the stench was actuallycoming from under and behind the frigidaire

 as it protested to almost four years of dust and other disgusting paraphenalia that had collected there.

I know

gross.

I have my excuses and I’m sticking to them.

Doesn’t matter,

the whole area and the fridge have now been scrubbed down in anticipation of the fridge fix it guy,

 he  turned up

eventually.

He told us how to stop our dogs barking and how to thwart their negative behaviour

oh

and also that our fridge is stuffed.

We had been living out of eskies for three days already and today had to turf  hundreds of dollars worth of spoiled food

but

who cares about that?

We can have an emergency replacement fridge, while ours makes the trek up to Brisbane.

No promises were made

but the fridge fix it guy (who was really very nice)

said it would probably be another 48 hours

at least.

+++

In other news;

I handed over two gift certificates for photography sessions (by me) as a donation for prizes in the Preschool Christmas raffle

and made myself sick with fear in the process.

Oh yes, I did.

There is no turning back now.

While all this was going on, David and I made an executive decision to spend our dwindling funds on a small bar fridge to get us through  until replacement fridge day.

He made a dash across town and when he returned, we discovered that the baby fridge

was more like a concertina fridge.

Seems, it had been dropped from the palette and quietly sold to us, great hulking dents and all.

Of course, we can return it but by the time Dave arrived home, the white goods store was closed.

So, much like many of the appliances in the house, in the boonies (and like some of the human content)

it is broken.

+++

Speaking of which,

the girl is sick.

No surprises there.

She has been up and down all week and missed preschool today.

It’s her ear, yes

and we have gotten  ourselves into a bad cycle of blisters.

We pushed her Prednisone up to full dose, to no avail,

the blisters just kept coming and they were becoming deep

 so we had to double it.

At the moment we are reducing again because we all know that Prednisone is not good for the little girl.

We have been lounge lizards for much of the week so far.

IVIG is on Monday, so we are hanging in there

just.

+++

I’m hoping she will be well enough to go into the high school tomorrow

because

Maddy is getting a Principal’s award!

I’m not quite sure what that is but it sounds impressive.

…So we grew together
Like to a double cherry, seeming parted,
But yet an union in partition,
Two lovely berries moulded on one stem…
~William Shakespeare, A Midsummer Night’s Dream

The theme at I heart faces is balloons.

This last weekend,

I’ve been away,

without my family,

for the first time in a long time

and I’ve learnt alot about photography

and alot more about myself.