Three!

It only seems like yesterday that I was waiting for their arrival.

Now I am listening to them role play with two monster trucks…

First monster truck to second monster truck;

“Why, yes, you’re right, I am very beautiful”.

Second MT to first MT:

“No you’re not, you’re purple”.

+++

After the post about my worry and lack of sleep, the paed called.

Without me calling him.

Just to check in.

Weird, huh?

Very out of character.

Dave and I can’t understand why he called (but are glad he did).

There are a few theories floating around.

Still, it was strange.

I wrote him an email (as per his request) asking him all the questions I had and sent it last Thursday.

Our appointment is tomorrow.

+++

It was decided that the girls would go out to work this weekend just gone and they will go out again the weekend before the farewell.

So far they’ve earned, for themselves, forty dollars each.

At the moment they are undecided as to whether they will have their hair done by the hairdresser or their mother.

They are thinking they might get the hairdresser to curl their hair and I can do the rest.

Maybe.

+++

I think I might just cancel Christmas this year. It’s all too hard, really.

So there you go.

Now you know.

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 a kid but as an adult they were few and far between (unlike some people, who have recurring dreams about ghost cats in a haunted house - not mentioning any names, but if I said wonderhusband, you would all be smiling and nodding knowingly behind your computer screens, wouldn’t you?). 

I started having vivid dreams when I was pregnant with William and the worst part was, they came true. So, when the nightmares come the hair on my arms prickle and I sit up and take notice.

Just a little legacy from Will’s time with me.

Yeah, crazy, right?

Anyhoo, these dreams are freaky and they are about Ivy, of course.

For anyone who doesn’t know, Ivy sleeps in my bed.

She just does, ok.

I don’t like it, it’s squishy and I often ache in new and interesting places, so that I can share my space with the girl but ever since she’s been sick, I’ve stopped fighting it and just let her be. I figured, she’d become a teenager one day and not want to sleep with me anymore.

These dreams come in the small hours and they are about the girl, not breathing.

At all.

They are very graphic and detailed and in the night I get them mixed up with reality sometimes.

The prednisone keeps her temperature very low and as a consequence, she is cold to the touch, even though she is perfectly fine.

And I panic, okay?

There, I said it.

It’s scary and it’s not doing either of us any good.

Or David for that matter because I cry out and wake her and wake him and ask him to get my stethoscope just so I can listen to her little heart beating away and then I can’t get back to sleep for fear that she will, you know, just stop breathing.

I know where this is heading.

It is insomnia inducing and breakdown worthy but what I don’t know is what to do about it.

It feels crazy and yet it doesn’t.

I can break it down. I know just where all the fears are coming from. I know it has everything to do with William dying and with all of the stuff that is going on with the girl, well, it’s just me trying to protect myself because I couldn’t do it again. I couldn’t survive. 

I can’t even say it.

When those fears whisper in the back of my mind I push them away, make them not so, because we all know if you don’t think about it, it will never ever happen, right?

There is some sense to it all, if that makes…sense.

So here it is; out in the universe, floating around, my sanity (or insanity, depends how you look at it) hanging by a thread.

Be kind, okay,  because I haven’t had much sleep and we all know that kind of deprivation makes a girl emotional.

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 two lots of bacteria in her blood and for the second time in a matter of weeks was considered septic.

She started on a new medication, an immunosuppressant to try to stop the active cycle of pemphigus. At minimal dose, so far, so good.

I am thread bare, my friends. I will hopefully be in a better frame of mind tomorrow.

I put them to bed. I snuggle them down. Noah has Ted and Ivy’s arms cling tightly around BokBok, boa also in hand.

They are so not ready to settle but I sit with them anyhow, willing them to go to sleep.

As twins they have the right, it seems, to suddenly start a banter of toddler babble back and forth over parental heads.

David is grotty. He has spent the afternoon mowing the toys  lawn. He is sighing and fidgeting, so I send him off to the shower.

Soon they start singing;

Ivy; “Ooh Wiggywiggywiggy! Oohh wiggywiggywiggy! Givemethatgivemethatgivemethat cheese!”

Noah: “Ro - ock uh byeeee bahbee, onthetreetop! When de win bloessss (growling) cradlewillrock… I throw de rock Mummy”?

Me: “No, Noah, we don’t throw rocks, now go to sleep. Close your eyes”.

Noah: Pulls lids of eyes down manually, “I carrrrrn’t”.

Me: “Shoosh”. (smiling not so inwardly).

Noah: “Sauce? I like de sauce, Mummy”.

Me: “Not sauce No - No, shoosh.

Noah: (singing) Shoosh? Sauce! Sauce, sauce, sauce, sauce!

Ivy: (interjects) “Shoes“!

Noah: “Shoes? Yes! Shoes, sauce, sauce, sauce, shoes, sauce”,

Ivy: (interjecting again) “Shorts!”

Noah: “Sauce, sauce, sauce, shorts, sauce, shoes, sauce, sauce, sauce sauce. No - ot shoosh!”

David comes back from the shower and I leave.

I have to.

I am laughing so hard, my insides hurt.

Sauce!

Two toddlers on prednisone, of course!

That’s right. You know that little cold that Ivy aquired at the paddle pool? Well, Noah got it too and it became an asthma attack that needed prednisone. Yesterday was day three and the ‘roid rage was in full swing… or should I say road rage? (Thank goodness his course is over).

Here is a photo of my normally sweet natured boy mouthing off in his car. It was raining and so the car had to come inside for the day. Hate to be in the car with this dude, when he really gets his license. Talk about cranky!

So, can anyone tell me what is worse than two toddlers on Pred? Go on, have a guess…

Two toddlers and a small rat dog on pred!

Bet you didn’t see that one coming.

Oh yes, we are keeping prednisone producing pharmaceuticals in business!

The dog had fleas. We got rid of the fleas but the dog kept scratching.

Turns out he gets eczema too!

A course of prednisone will fix that, says the vet.

(Insert maniacle laugh of choice here)

Why not?

The dog doesn’t scratch anymore but has gone into some major hyperactive springing and amazing tap dancing on the glass door.

So does anyone want to wager a guess on what is worse than all of the above?

A husband who has caught the toddlers’ cold!

BWAHAHAHAHAHAHAHAHA!!!!!!!

Wah.

Boohoohoohoohoooooooo!

*sob*

*sniff*

Please click here to see my previous feelings on Pathetic Male Disease.

Nothing has changed.

To top it all off Ivy’s blisters came back in full force this morning. (You can check out the up dated photos here).

It’s not on her bottom so much as travelling down her legs now and in her mouth.

Of course the paed is not in today.

In true Ivy style though, when she spotted the blister in the mirror, she exclaimed…

“Ooooh, lolly! Lolly on me - ee!”

Oh sweetie, if only it were.

Everything about this nightmare is wrong. Why can’t I help her? Why?  I feel out of control, powerless. I can only imagine what she is going through.

When William was born my whole life changed. I have felt as though I have been falling ever since.

That night, that night, when the NICU nurse asked, ever so casually…’have any of the doctors mentioned his cardiac condition to you yet?’

No.

‘Oh, well, I shouldn’t say too much but he has a severe stenosis and will need to be transferred…I’ll go and find a doctor’.

Drawings of hearts and aortic valves and not enough oxygen and did we want to transfer?

Yes.

I wasn’t thinking he wouldn’t make it. I gave it up to the doctors, I put my son’s life in their hands. I moved with hope and with purpose that night.

We arrived at the new hospital. I had never held him, had barely had a chance to be with him, look at his features.

I put my son’s life in their hands, new doctors who I had never met before.

‘There is nothing we can do.’

But…

I trusted the process, I trusted you.

I can’t trust the doctor (any doctor). I don’t trust the process.  Anymore.

Do I trust myself?

No.

She has what the paed lovingly labelled ‘roid rage’. Do not come to our house if you want to survive to see another day. Yes, it’s that dangerous!

When you have roid rage you don’t need to sleep. Ever again. Don’t stop there though. It is not commonly known that when you have roid rage, that person (slave), called Mummy, doesn’t need a wink of sleep either. You can spare the Daddy though because he can be helpful in obtaining food so you need him to be well rested.

When you have roid rage, you are angry. All.The.Time. Even when you are enjoying something, you are still angry (and don’t try to persuade her otherwise because that will just make her more cranky).

When you have roid rage all other people lose ownership rights to the Mummy. It gives you license to swipe and scream… “My Mummy!”  to all and sundry, even if they are not in the room that you have the Mummy held captive.

Roid rage entitles you to demand food and ’shakey’ 24/7 because you get the munchies. If food is not produced pronto, go and get a plate and demand louder - you have that right and you cannot be held responsible because you have the rage and the rage absolves you from all wrong doing (beware anyone who thinks discipline is the way to go - see point two and then re read point three. Note the swiping? Expect that).

If  you are still refused  food and the plate taken away, present the Mummy with another and another and another (in between tantys and swipes) until she gets the message.

Roid rage makes you deaf when your mother says no to a third helping of anything. In fact, having roid rage makes you hear yes, even when the reply is in the negative.

If your mother gives in and feeds your prednisone induced hunger, just to keep the peace, roid rage gives you the right to throw any healthy options at the offender (as if you want that, even though 2 seconds ago you were begging for it) and demand things that are not even in the pantry…like hot chips or lollies or chocolate (no, there isn’t any in the house because I ate it all, yes, all of it. In. One. Go. Not to mention the cheesecake. Stress will do that to you , you know).

All mortals living in the house should know that if these things are not made available within the next ten seconds, they might as well kiss their sorry lives goodbye. Roid rage gives you license to kill by means of a high pitched scream that only a rager can aquire and subsequently listen to, for any length of time, without being in exceptional pain.

When there is roid rage about you feel the need to mention that you want breakfast straight after breakfast and neglect to remember that you have just eaten five minutes beforehand and demand to be put in your high chair again.

Roid rage compels you to cry all day long, especially when the captured Mummy begs off picking you up for the 500th time in ten minutes because she has been slapped every time and has finally learnt her lesson.That and the fact that you are heavy now, that you have the prednisone induced munchies, and her back is breaking, should not stop you demanding transport to the (you guessed it) highchair because the rage should just be accepted and embraced as far as you are concerned.

Yes my friends, it is not pretty but lets look at the positives for a minute…

She is eating and putting on weight,

her bottom isn’t so bad,

she is learning new vocabulary every day. Who cares that it is stuff like ‘go away’ and ‘get me a shakey’ or ’shove off’ (Lord knows where that one came from) or ‘highchair, take me, NOW’.

I needed the contents of the pantry eaten (well) before the expiry date because I so love shopping with a cranky screaming child, especially food shopping (not),

I’ll be able to go back to night duty now because I am used to staying up 24  hours straight for three days in a row,

I might get a back massage in the near future, because I will need a chiropractor for my broken back,

I won’t put on any more weight because there is no food in the house for me to emotionally eat, in fact, I may even lose a kilo or two from transporting her royal rager to and from the high chair.

It’s all good people, it’s all good.

Oh, I thought of one more positive!

I hear the local padded cell is very comfortable and it’s quite easy to sleep in a straight jacket.

Ivy and I, on two hours sleep.

I was already cranky before I got there. Bad mooded. Walking the biartch. Post PMS pms. Call it what you will.

Ivy’s bottom was in the process of blistering up again and there was not a thing I could do to stop it.

Applying the creams does little, except make her scream out in pain. I do it anyway because at least I am doing something and no one can say I didn’t try.

Not like the ENT, who inferred that I was non compliant with her ear drops.

What?

Why, with seven children at home, would I want to do that? Why would I do that to my girl, anyway?

I digress.

The paed;

Was late.

Tried to jolly me out of it when he had obviously not done anything to understand the diagnosis we had been handed down.

Had no answers. (That was okay, I didn’t expect that).

Had no plan.

Checked her out, weighed her (she’s lost again, after a gain in hospital), looked in her ear.

Her ear canal was clean (ner ne ner ENT (gee, that was mature Tiff)) but there was pus and gunk behind the middle ear, therefore the drops were keeping the infection at bay but not killing it. *SIGH* Nothing new there. Ivy can only take the Ciproxin drops for ten days then we will jump on the merry -  go -  round again.

Changed antibiotics.

Told me he would call all the specialists to co - ordinate her care and would get back to me.

I did not believe him.

I have lost faith in him.

I wasn’t nasty but I didn’t let him off this time.

Last time he said he would get back to us, he didn’t.

Last time he said he would see us in the hospital, he didn’t.

He didn’t help her.

Ivy doesn’t trust him anymore either.

That’s sad;

because she did, he was the only one who could get near her without her crying.

Not yesterday, though.

I paid the receptionist, who, tapping away on her keyboard, said she had had a mental blank. I told her our name.

“Oh, I knew that“, she said spitefully.

“I bet you did”. I replied (Deep breaths Tiff, deep breaths).

She looked up at me,  ”Do you need another appointment”?

“We have one in two weeks, which the doctor said to keep but he said he would call us, whatever that means”. I seethed. (Calm blue ocean, calm blue ocean).

I didn’t say anything else. I didn’t need to and I couldn’t without letting loose.

I was just shamelessly cranky.

Time to up the crazy pills, me thinks…

postscript; He really is a very nice man. Just not very available when Ivy is acutely unwell

The days are so busy that by the time I fall into bed, I am exhausted.

Insomnia came to visit me when William died. Not at first, not in those first few, grief stricken months, when my body screamed "ENOUGH"! and shut itself down into blessed, dreamless sleep. It crept in slowly, with the nightmares and over the years has come for repeat visits like an unwanted relative, who doesn’t know when they have worn out their welcome.

Maybe I had too much coffee yesterday. Maybe but I don’t think so.

I went to bed at 10:30 and Ivy woke at 11:03 and for some reason I could not find sleep again. Even though it found Ivy at around 2am, it didn’t allow me the same courtesy. This (early) morning, sleep is not my friend. I spit in it’s general direction. It has forsaken me. Left my mind to run wild and my body to crave it like some illegal substance.

This wasn’t supposed to happen until I was old. Insomnia, isn’t it the disease of the aging?

Here I sit in the dark with my new constant companion, Laptop.  I’ve read the comments of my bloggy friends and sent a few off. I’ve pondered why my dogs are scratching themselves like mad when they were only bathed in flea shampoo and treated with Frontline yesterday. I’ve listened to the sounds of the sleep filled house and I have wished I were there, in sweet oblivious sleep.

I am going to pay for this come daybreak.

Silent Night (Ode to Ivy).

Silent night, yeah right!

Mummy’s not calm,

Daddy has spite.

Round the clock the female child,

Wakes the household, the parents are wild!

Sleep, for the love of God, Slee -eep

Slee - eep, try counting some sheep!