We saw.

We kicked that scan’s bottom.

One little girl stayed very very still for over ten minutes and along with being labelled the best little girl ever to grace the bed of the bone density scanner, scored for herself a princess outfit.

I love that kid!

When my son died and I gave up hope and all I wanted to do was curl up in a ball on the floor. When everything looked ugly and painful and grey, David brought home my Canon 300D.

I picked it up and began to see beauty and colour and light.

When I looked through the view finder, I could see life and so I kept on going.

Four years on and this thing that was a hobby is something much more.

Now I think it’s getting serious.

People are asking me to take photos of their children and I am starting to think that maybe this might be something I would like to do.

I have already said yes to four beautiful families, the first one today, as freebies because I am in no way a professional but every single one of them has said they would pay.

Money.

For my photos.

In the face of opening myself up to more criticism, I’m quietly asking you, my friends, what do you think?

Should I take the plunge?

Should I take it further?

I mean it.

It has been fantastic to have my happy girl back and for the first time in ages I have felt relaxed about her health and wellbeing.

In the week and two days since we were discharged from hospital I have been able to toilet train Noah, who is now very proud to be sporting ‘man undies’ all the time and who tells anyone who will listen.

I have been able to spend good quality time with the bigger kids, without having to carry around a limpet child or try to talk with them over crying.

I have not had to call the paed for more than a week.

Surely that in itself needs a high five?

I’ve been outside, people. Outside, into the fresh air and the little girl has pottered behind.

It has been wonderful.

I feel alive, not in that ‘dead space’ I reserve, that place where I try not to feel too much.

The biggest thing though?

I am enjoying her.

I am forever in the debt of one particular person, Veronica, who started this amazing, wonderful  journey. One person who showed me that there were (lots) of people out there who cared about my girl and were willing to fight with us.

Oh, it’s just not coming out right because I am so excited!

Thank you to everyone,

really.

From the very bottom of my heart…

SHE GOT IT!!!!!!!!!!!!!!!

See you in hospital, we’re for admission tomorrow, at 10:30 am.

You know what makes me crazy?

Aside from driving for two and a bit hours like a mad woman to the hospital, so we can sit and wait for an hour and a bit for our half hour slot?

It’s a doctor who doesn’t know what we have been through and who looks the pred child up and down and utters the most hated of statements to any parent of a chronically ill child…

“Well, she looks good to me”.

AAAARRRRRGGGGGHHHHH!!!!!!!

Of course she looks well, I just spent the last week pumping her full of anything that remotely indicated it might stave off the nasty bugs so we could make our way down to see you.

I worked hard, darn it, to get her here.

That’s why I don’t look so hot!

Why do doctors do that?

Why do they make throw away statements like that?

Especially when they must know we wouldn’t be there if everything were hunky dory.

Is it supposed to lift us up?

Because it doesn’t.

Okay, ranty rant over.

We think the  Ivy - girl is going to get her IVIG!

We just have to wait for some bloods to come back and the immunologist has to go to the board and present Ivy’s case but Ivy is a good candidate and by Friday we should know for sure.

From what we understand, all that is just a formality. The doctor will be pushing for her to have the IVIG, starting as soon as possible.

So there you go.

There is more information and some negatives but I’m just going to give you the good tonight

because I’m feeling positive and it’s been almost five weeks since our last admission and..and..and

YIPPEE!!!!!!

Okay?

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!

I think the Prednisone is working! I’ve updated the photos if you want to look.