Ectodermal Dysplasia with immune deficiency means squat.

The doctors are salivating over their diagnosis. You know when you hear the words “three way phone conference” thrown into the conversation about your child, that it is the real deal.

Very rare they say, very complex.

Can anyone say understatement of the year?

They talk of DNA testing and OPG to confirm and publication and recognition of their ‘discovery’.

But what of the little girl in all of this?

Now she is sick, does her diagnosis change anything?


More antibiotics. More pain relief and *sigh* more blisters. Plus an over the top, over active prednisone induced zombie of a child. I know that doesn’t make alot of sense, stay with me, visual coming up.

Cranky, confused, sleep deprived baby.

Not fair.

One minute she crawls up onto my lap in misery, searching for sympathy in cuddles and kisses and the next she is scampering away to spin and dance to the beat of the prednisone god’s ever compelling drum.

I am tired just watching her.

I guess it’s good she is upright but is it because of the pred that she cannot let her body rest?

She did not sleep last night and made very sure that her parents didn’t either.

Moaning and groaning and rolling about our, now seemingly too small, queen size bed. (Too small because the Queen likes to sleep in a starfish shape).

*Bless her cotton socks*.

Her breakfast consisted of (over the course of two hours – I didn’t hit her with it all at once); liquid iron (ironically based in sorbitol – a laxative), liquid zinc, vitamin C, Bactrim, EES, Prednisone, Singulair and two bites of a piece of pineapple.

A cocktail.

The paed offered me up a hospital bed with all the dressings, on a silver platter but I turned him down. Now I am thinking maybe we should have gone.

Maybe .

I also know that when you take Pred induced children into a hospital setting you get mean, sideways glances from parents of limp, sickly, bed ridden children and throw away comments of your child not looking sick. Oh, if only they knew!

And, providing she can hold her own, I have been given release from the crazyhouse home tonight to take Mum to see Billy Elliot.

Is that wrong to want her to hang in there just one more day, so I can paint the town red?