Monday, 24 August 2009

Preparing myself for bad news? :0$

I've just had a phone call from Hope's lovely neurologist (dr Ch). He wants to see her. Tomorrow! He said he has some results from some blood tests he wants to discuss. Plus do some more tests. Boo hoo, I hate blood tests. Plus he wants a urine sample. So it may be a long afternoon :0(

He asked how Hope was doing too. I told him that I had upped the meds again today (that's 800mg now) and that the seizures were still creeping up, and hope is having between 30-40 spasms a day. He said that's too much still, so I think we may end up discussing changing the meds a bit earlier than originally planned.

Oh god, I am so scared. I was shaking after the call, but now I just want to cry :0( but can't because I don't want Jordan and max to worry .

Earlier today we had the leader and a playworker round from koalas (the special needs playgroup). They were both lovely and I'm looking forward to starting In September. It will be nice to meet parents in similar situations and their extra special babies and children.

They asked me whether I had made a claim for disability living allowance and carers' allowance. To which i replied I hadn't. I guess that's because I don't want to have to. I'm still hoping I suppose that she'll all of a sudden be fine. That she won't be entitled to it. But who am I kidding? Only myself! And since my maternity money ends this month, and there's no way I can return to work yet, the extra money will help. It's just I don't want to be eligible for it :0( either of them; disability allowance because it means hope is disabled, and carers' allowance, because I am not her carer. I'm just her mummy

Oh, for an ordinary life ... :0(

Xxx

4 comments:

  1. oh Caroline, just wanted to send you lots of love and hugs, always around if ya need me, hope tomorrow isnt bad news hun i know the feelin of dread just waitin (((((((((())))))))))

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  2. Oh Caroline, I wish that it was not so horrible waiting for news, any news, it would almost be easier if they just told you over the phone, why do they have to make you wait? I can only imagine you want to go to sleep and wake up tomorrow after it is over, the trepidation is almost worse. We are all thinking of you and the twins send sloppy licks to you and Hope, will be sending you positive vibes from the Cambridgeshire area, Jess, Oscar and Lola XXX

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  3. nicola (caitlins mummy)26 August 2009 at 00:26

    caroline thinking of you so much and your georgeous lil lady nobody deserves what you went through with sam let alone this such a cruel thing with lil hope x i no nothing i can say can make you feel any better but am thinking of you you must be such a strong person with all you are going through hope has a great mummy xxxxx
    Nicola x

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