No deal
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.
AWW Tiff – I was really hoping things would work out for you! I’m sorry to hear that Ivy has been denied the treatment YET again.
But if there is some positive to take from this – it sounds as if you have a plan. The paed is going to try what he can, Dave is going to write his letter, and your state of mind sounds better than it has in awhile.
Know that we are thinking of you and praying for you – as always!
I hope the weather cooperates tomorrow so that Ivy can enjoy some fun in the sun with the family.
Hoping for a sunny day to watch your girl play.
And hugs for you my lovely, lets hope the paed has his punching gloves on.
Part of me wants to say how sorry I am and all that, but a bigger part of me says, Yes, tomorrow is another day.
Enjoy being home, being comfortable, enjoy happy Ivy.
Recharge the batteries, before resuming the bigger fight.
All my very, very best to you all.
Unbelievable!!! What’s it going to take before they approve the IVIG? Arrrggggghhhhh (screaming for you in frustration)
Enjoy your own bed, your cup of tea and your shower. I envy you there is a burst pipe down the road and we have no water!
I hope weather permits and you have a lovely day with family tomorrow. Fingers crossed, Dave’s letter doesn’t fall on deaf ears (or should that be blind eyes?)
Oh God Something is SO wrong here. Be at peace, my unfamiliar (as yet) friend. I’ve been stalking for a while, but am compelled to tell you that your journey, as much as it sucks, is being followed by many (I’m sure) who wish you well but do not post. Be strong. Be sure. I don’t believe in a specific deity, but be sure that A deity (specific or non-specific) means you well. I’m struggling to see HOW right now, but I believe that is so. And helpful or non-helpful, I feel compelled to tell you that I (totally most non-deity promoting person that could ever exist) wishes you well and is thinking of you often.
Does your MP have an email address?
How can this be??
Oh hon. ((huge massive hugs))
I hope the paed comes through for Ivy on monday.
HUGE (((HUGS))) I really hope that the paed and David’s efforts are successful.
what’s the point in having new treatments available, if no-one can use them!
Sending hugs. I hope that the shower was great and the bed comfortable. So far Saturday morning here is beautiful, I hope that it is the same where you are and that Ivy can enjoy some fun today and you can just sit, be and enjoy your kids and their cousins.
And good luck with the paed’s mission and the letter.
I was just about to comment on the other post and then I realised this one was here.
Dammit!
xx
xxx I look forward to a great weekly winners post then of Ivy girl dancing in the wind.. Woohoo..
I’m so sorry it didn’t happen (this time) and so impressed by your courage and determination and ability to keep thinking positively. You are such an inspiration for your kids. I just hope the little support we can give through comments helps make a little bit easier.
Damn!
Fingers crossed and chanting some more for the paed’s meeting with the drug board.
Yet another reason that today is a shitty day……………. tomorrow will be better.
Huge hugs!
Amber
I was just reading the last post and thinking WONDERFUL… IT’S GOING TO HAPPEN. Then read this.
Now…I need to study up on the Australian medical system and why you need to go through these kinds of horrors to get this medication for your daughter. I am so lost as to why it’s not coming through for you. Why would any sane medical institution not approve this?
I’m still going to pray for little Ivy. And for you. And so are many, many people who you don’t even realize.
We should ALL email the MP, like lceel suggests.
Good luck to David and the paed.
Ivy and your family deserve better than this.
bloody bugger bollocks…. that is just sucky news about the IVIG! I wonder if my DH could just ‘acquire’ some from work (he actually makes this stuff every damn day!) and bring it home.. do you think it would post ok?? LOL
Good for you though that you know you will keep fighting the fight whatever happens… you are a strong woman who will do the best for her family regardless of the stupid brick walls the bureaucracy throws up in front of you.
What beautiful kids. I love the little princess pose. To cute.
Hugs Tiff – still want to know the reasoning.
Tiff, I am so sorry, I am just catching up with what has been happening.
Why did they deny you the treatment ?
I’ve just shuttled over here from Sarcastic Mom and I have been reading through your archives about little Ivy’s situation. I’m so sorry that she and your family are going through all of this!
I do not understand why the Australian National Blood Authority is denying your request. It doesn’t seem to be a matter of funding, from what I understand. Is it really the case that they are simply saying “no” to allowing Ivy access to this treatment? What is their rationale? Have they given you any explanation?
Infuriating.
[...] to take things in to their own hands. Time for those of us following her hospital visits and the denials of treatment to sign our names to the [...]