Three Ring Circus

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Worry, worry, fritter, fritter…

The paed’s secretary called this morning, asking me if I would push Ivy’s appointment back to next Tuesday.
Was Ivy that sick that she needed to see him today? He had a twins’ birth he needed to be at and alot was going on, did she really need his time and attention or could it wait?
I […]

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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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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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Honesty is the best policy.

 *please read this with the tongue in cheek, it so deserves*
Okay. I suck. I know it.
I hear you.
My posts are big fat downers that everyone is sick of hearing (thank you new troll for pointing that out).
Going off the crazy pills was obviously a bad idea.
I have no life.
The pead told me, in no uncertain terms, […]

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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 […]

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Home again.

We are finally home again after five long days of hospital and I really don’t know where to start.
Ivy’s bloods are all back within normal ranges now. Her haemoglobin is 111g/L. Her levels for the haemolysis is on the high end of normal(read only just). Her electrolytes, liver function and iron studies all normal.
She grew […]

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We don’t need to pack a bag … BZZZT!

Dave writes: 
We fails it (it is staying out of hospital).
 Yes, Ivy has returned to hospital today. Just in time for the long weekend. So it’s a good thing we didn’t make any plans.  Besides, the weather is lousy.
A lingering infection, unresponsive to oral antibiotics. Also murmurs of a new immunosuppressant drug to try … if […]

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Red & yellow & pink & blue…

Red is the colour that Ivy’s blood cells should be. Big fat juicy blood cells, plump with haemoglobin and oxygen. Red is the colour of blood that she may need now to correct this mess.
Red is the colour I see when I can’t get the doctors to help my girl.
Yellow was the colour of her skin […]

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Monday moaning.

I was talking (read email) with a friend last night and she asked me when I was going to start a blog so that I could say all the things I would like to say but can’t on this one.
She said it because so much has gone wrong in the last few days with Ivy’s health and […]