Three Ring Circus

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Ivy update, I’ve never wanted something more… I think.

Today we went to the paediatrician.
Ivy has lost just over a kilo.
Her cortisol levels are out of wack.
Her iron stores are low.
Her chest x - ray looks better, the pneumonia is clearing.
Her kidney functions are still okay.
Her  left ear is discharging, her other is infected.
Her white cell count still high.
She is still sick.
But
it’s time to move […]

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Irony.

Irony is;
when you discover that your daughter has mycoplasma pneumonia and the hospital doctor tells you the best oral antibiotic to treat it is the very same long term antibiotic (Erythromycin) that your paediatrician only ceased a fortnight ago, in favour of Keflex.
 Bwahahahahahahahahahahahahahaaaaaaa!!!!!!!!!
So, here we sit on three different IV antibiotics, waiting for her lungs to come […]

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48 hours…

…and we are home again.
Ivy is tucked up in her own bed as I type.
Is she 100%?
No -  but I am coming to the realisation that maybe she will never be.
Here’s to;
 a new antibiotic. Keflex, our new wonderdrug (fingers crossed).
At least four weeks before she crashes again.
Time for her to play.
Time for her to laugh.
A hot […]

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So here we are.

The paed called late on Friday night and I told him the Ivygirl was sick, really sick.
You know, that frightened, sick in the guts, knot in your throat, something bad is happening worry that you get when someone special is sick?
Yeah, that’s been me for a large part of the week. (As if you guys […]

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Where I talk about febrile convulsions…again.

In the small hours of Wednesday morning, Ivy, who, for all intensive purposes has had a great month, spiked a temp and had a febrile convulsion.
It was only one.
My mummy head screamed to scoop her up and take her to the hospital but just as I was about to leave (It takes an hour to […]

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Crazy…

I know you all know I’m crazy, right?
So it will be totally safe to tell you that I have been having these awful nightmares and you will accept that just as you accept that I am as nutty as a fruitcake.
Nightmares are a recent addition for me, as an adult. Sure, I had them as […]

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Cushing’s Syndrome

Ivy has the beginnings of Cushing’s Syndrome.
Here is a picture of Ivy when she started the prednisone
.
This was about a month in, January, weighing just under 12 kgs
This is Ivy at the beginning of May.

Weighing it at 15kgs.
See her face, the roundness, the loss of her neck? It’s known as ‘moonface’ and is a typical sign of […]

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Throwing out a line.

Someone asked me what it meant for Ivy to be immune deficient and I have had a really hard time coming up with a description until someone else from a support group I’ve joined recently did just that…
” The best way I can describe what is going on is this:
 A person with a normal immune […]

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When you live in the boonies…

…and you need to have your daughter seen by an endocrinologist, expect that you will wait a very, very long time.
What is your best bet, for a waiting time, my friends?
Six weeks?
No.
Try six months!
That’s right, six months, that will see us just about up to Ivy and Noah’s 3rd birthday
in November.
The paed’s idea that we […]

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Ivy update - playing with fire?

We went to the paeditrician yesterday.
Ivy was well (touch wood touch wood touch wood).
Her chest was clear.
Her stomach not too tender.
Her ear looked much better. Still not fabulous but he said he could see a clear spot.
Her bottom was clear of any blisters, clear of any trace of the pemphigus, just a small amount of […]