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A thousand words.


What came of the meeting of doctors

was not exactly what we thought it would be.

In fact, we went from escalating things rapidly

to a sudden back pedalling -

to almost where we started from

and our first three needle night post “we will do everything we can to help Ivy overcome her anxiety”

was…

well,

it was worse than ever.

I’m not sure what else I can say about it really.

It was awful

and despite the doctors saying they would have a more evolved plan for the girl by this week

it hasn’t happened

and so it seems all that is left is for  us to take a deep breath

and just push on

because there are no better choices right now.

It seems that when we tell the medical professionals that we are unable to cope any longer

to them it means

surely, we must still have something in reserve.

I just wish I could convince the small girl.

 

 

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18 Responses to “A thousand words.”

  • Kirrily (2 comments.):

    Desperate for you all. XxXx

  • Mary:

    LOVE that writing style!! Also, you are obviously a well-rounded, mature personality, otherwise you wouldn’t have survived what you’ve had to go through with Ivy, while being a Mum, wife, blogger and all-round great person.

    Keep it up Tiff, you’re doing great!

  • Lesley:

    Big hugs and extra strength being beamed over to you both from me. I remember all the crap we went through with Dave and his medical team. They just don’t live in the real world sometimes, do they?

  • kathryn:

    Sending hugs, love and bravery xx

  • Susan, Mum to Molly:

    Now all you need is for that image to be tatooed onto the back of a few medicos retinas…

    Sorry that no real progress has been made, yet again.

    Hugs to you both, and huge admiration for your soldiering on.

    S xx

  • Zoe:

    Oh sweet Ivy. I would love to see Ivy wearing a t-shirt with that picture on it. It would give her a voice and let her feelings be heard. I just hope the doctors process what she’s saying.

  • SassyCupcakes:

    Argh! How frustrating! I can’t imagine the headache you must have from banging your head against the wall of doctors.

  • valarie k. (1 comments.):

    I wonder if it might be a possibility to continue the subq at home, with a home nurse. Is the an option?
    I know that you can do it, and do it well, (so can I, but I choose not to).
    But sometimes, a child – actually, anyone – who has been through a trauma can get into a routine, a rut, that is difficult to get out of, and if the routine is changed, perhaps the outcome just might?
    It’s not intentional, but this happened with my daughter when she was young and struggling with IVIG and illness. Certain things happen at certain times: Sit at the table, you eat; get in your bed, go to sleep, get up in the morning, feed the dog; go to school, fall down and scream your head off; go to infusion, panic, throw up, pass out.
    It can become an ingrained pattern that cannot be changed, no matter what is tried. The only way to change the reaction is to change the routine.
    Maybe?

  • alicia (63 comments.):

    heartbreaking drawing. Oh Ivy, sending her hugs of bravery! She is such an incredible girl.

  • Michelle:

    My heart aches for you guys — for Ivy, for you, for the whole family. And I’m angry angry angry at the medical team who says “we’ll do everything to help Ivy overcome her anxiety” and then doesn’t.

    I think you need to hang that picture over her bed, as a reminder to the team that she’s not just so much flesh into which they have to put needles — she’s a little girl, with joys and talents and fears.

  • Rachel:

    Shaking my head!! What the hek they doing….. Nothing!

  • Kathy (88 comments.):

    :( :( I am so sorry. For the pain and fear and lack of options. I am in tears for both Ivy and you.

  • Mum:

    It seems to me that these doctors are avoiding the whole issue for some reason. Is it possible that they are unable to do anything further for whatever reason? (if you know what I mean).
    Whatever their reasons, it needs to be shown AGAIN by any means, exactly the trauma you both experience each and every time this needs to be done. Make a point of showing them this drawing from Ivy and date it, then wear them all down by showing them each and every time they see Ivy, until they finally realise that this is constant and ongoing. Hopefully they will then know how this is wearing both of you down and will be prompted to do whatever else it takes to break this endless cycle.
    Keep reminding them, every chance you get! Don’t give up the fight to make it better than the way it is now. xoxo

  • Jennette:

    Bugger!

  • Melissa Mitchell (42 comments.):

    I hate this. I saw that photo last night on FB and a sob caught in my throat. Literally. Joel saw it and had tears in his eyes. We so often check in on Ivy and all of you, and think about you so often. I’m so sorry that they haven’t managed to get it together.

    I realise that the biggest issue with the needles is her fear and anxiety, of course. But is there a way that Emla patches would help at least the pain of the needles? I realise this is probably a stupid question, and almost certainly you would all have thought of it. But I can’t help but ask.

  • Claireyhewitt (42 comments.):

    Dear Ivy,

    Lots of people feel scared when they have needles. Needles hurt and it is not nice when things hurt.

    You are braver than any other little girl I have ever met and it isn’t fun to be brave and it isn’t fair that you have to be brave and scared all the time.

    I don’t like needles either and I don’t even like thinking about needles because when I think about them it makes me scared too. I wish that needles could be like a lolly pop instead, something that you can suck on that tastes good and makes you feel happy and helps you get well too.

    I hope that the doctors find a way for you not to have to need all the needles soon.

    xx

  • Fiona (114 comments.):

    oh gorgeous.
    xxxxxxxxxxxxxxx

  • kelley @ magnetboldtoo (13 comments.):

    ouch. That picture breaks my heart

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