Thursday, 10 September 2009

No news

Hiya. Thought I'd best just pop on and update that there is still no news. I know lots of Hope's 'aunties' are checking in often to see if there's any news. Thank you all for your prayers and messages of support.

People have suggested I call for results, but I know when dr ch knows something he'll be on touch. Also, I've got to the stage where I prefer not actually knowing , though deep down, I do know (hope that makes sense).

Some have said 'no news is good news'. I wish that was true.
'if it was something really serious, you'd know by now'. Not necessarily true.
'she's strong' 'she's a fighter'. I know, but how much can she do if her metabolism is fooked?
'everything will be fine'. I've heard that before. And it wasn't. Sam died :0(

Anyway, I am still hoping I'm wrong. I will eat my hat if I am. Will happily post pics of me doing it too! And I will, i swear be the happiest person on earth... Just so long as I get to keep her!

Anyway, she's had a great week developmentally. The seizures are still present, though subtle, and infrequent (only upon waking) despite now being on the highest possible dose of vigabatrin.
But she's been alert, noisy, looking (sometimes) amused by playing peeka boo with a muslin or her mookie (from auntie kel and Paul). Her head control is really good again (though not by any standards of a 7 or even 3 month old). Yesterday she sat unsupported for about 3 seconds. And today, she's really mastered rolling from front to back. This evening she's been doing it over and over again :0)
Hard to believe there could be a progressive disorder when she's still developing.

Today was our first session at koalas (a special needs playgroup). I'd been really looking forward to it, but felt disappointed.
1 Hope slept the whole time (apart from 5 mins we spent in the light room before she fell asleep again)
2 hope was by far the youngest
3 I didn't really feel I had anything in common with any of the parents
4 a lot of the parents make use of the parents room, where they sit and chat, whilst the children r looked after by their key workers. I'd probably have enjoyed it more if I went in there, but lets face it; if I haven't even left hope with her dad in 7 and a half months, I'm not going to leave her with someone I've just met.

On a positive;Hope's key worker seems really nice. I'm sure Hope would like the sensory room and toys if she was awake. Oh and there was this one lil boy 'H' who just melted my heart. I suppose he's the one most like Hope, but I guessed he probably had CP. He was adorable and loved Hope. Which he showed by trying to say her name, touching her, and dribbling over her (which I didn't mind in the slightest btw, cause he was that gorgeous!)
Since we've waited for this placement; I will persevere.

Bye for now
Xxx

Ps I promise to post some photos over the weekend. I realise it's been ages, but I can't do that on here (my phone)
Xxx

3 comments:

  1. just wanted to let u know i check in here often, you and Hope are always in my thoughts, lots of love and hugs to you both xxxx

    ReplyDelete
  2. Caroline

    I am so glad that Hope is still progressing but am so sorry that you still have no answers. I am always thinking of you all and really pray that there is some positive news soon.

    Much love
    Corinne xxx

    ReplyDelete
  3. Hiya, sorry no news yet, I know this is hanging over you and can see this in you in the playground despite your very best efforts to smile for the kids...you're a fab Mum! I will keep checking Hope's blog and keeping everything crossed! Koalas' sounds good and I'm sure the more you go the more you'll get out of it, even if it's just to meet lovely little ones like 'H'.

    Thinking of you, love
    JO x

    ReplyDelete