I am writing this from home.

Ivy girl is tucked up beside me after another blow.

Noah in the other bed and it is SO good to be home.

Approval; denied.

Our paed is going to Sydney on Monday to do battle with the drug board, David is writing a letter to our local member of Parliament and I am licking my wounds from another round of hospital battle.

I was very upset when the news came but I have thought it through and if there were no IVIG available then we would just keep battling on, just as we have been, just as we did with Immy.

We have done it before and we can do it again.

Thank you everyone for thinking of us.

Tonight I am going to have a long shower, a hot cup of tea and a sleep in a non hospital regulation bed ie; a comfortable one.

Tomorrow, weather permitting, I am going to watch my beautiful, amazing, heroic baby girl dance in the wind and play with her brother, sisters and cousins outside in the sun.

Because tomorrow is a new day.

The paed has just been.

Ivy is so much better and I thought we might have broken free from the hospital but he has spoken to the immunologist and it looks like we might be able to get the Intragam.

Tonight.

If approval comes through.

All I’m asking is for all of you to pray, cross your fingers, chant, dance, speak to that higher power, whatever it is that you do.

Maybe just maybe this will be a day to celebrate.

We’ll know by 5pm, so it will be a double posting tonight regardless.

I know I shouldn’t get my hopes up but, well, they’re already there.