Dd (4.5) has had a v hard time lately, I want to get her a fantastic dress for Saturday ... any ideas?

[imaginaryfriend]

For anyone who's been following my thread about dd and her recent health problems this will make more sense. But without going into it all again here she's a lovely girl, has been a total trooper through an extremely tough few months and is going to a dear friend's party at the weekend. I've been so stressed about her that I haven't even thought about what she might wear and would like to treat her to something really special. I've been scouting around online and can't find a thing. Maybe I'm too late to order something before Saturday anyhow ...

She doesn't like pink, super girly type things but loves bright colours and flower / stripey type patterns.

Oh I have come too late to this thread as ever. Just want to say, I love the spotty dress (and if I had dds they'd wear that sort of thing.)

IF - your daughter sounds amazing and I want to send huge rabbit-shaped hugs to her for being so brave x

oh BLESS! She is SO adorable! Love the thought of her making sure everyone noticed!

how fantastic if! Sounds like you both had a lovely time.

We did have a lovely time. I think it made her feel a bit 'normal' in lots of ways that she's been missing lately.

The only downside of it all is that there's no improvement in her skin whatsoever, the latest treatments aren't doing a thing. Today we went down to Greenwich market and to the planetarium and dd said to me in the dark 'at least nobody can keep looking at my skin when the lights are out'

But, having said that, I keep hoping she'll get something from this, a kind of strength in herself which stops her from being touched by other people's insensitivities. It's a tough lesson to learn so young but she's a wise little soul.

oh no

If it is what Top Doc suspects, it's just a waiting game is it?

I suppose you've not had the biopsy results yet so you still don't know.

I'm so sorry it's not getting any better yet. Is she, at least, any more comfortable?

I want to be able to say yes she is more comfortable but after having just had shrieks of agony for 20 minutes at bedtime I can't lie even to make myself feel better.

The thing that worries me is that it's still spreading. If the medications were containing it at least that would be something ...

you poor things.

It must still be a few more weeks till you go back is it?

Yes. He did say we could call and go earlier if we needed to and that he would call us in earlier if the biopsy showed anything he hadn't expected. Otherwise he wants to see her after some weeks of a very strict regime with no break.

.. I do wish he could administer some of it for us though and see how hard it is to maintain feeling like you're torturing your beloved child night after night ...

I keep coming on to say something and then getting a bit choked up, but I just wanted to say I am so glad she liked the dress

She loved the dress, franny. It was your suggestion I think?

Oh God - it sounds horrendous.

Your poor DD and poor poor poor you. We would all rather it was us rather than our children.

It's like being in a weird sort of unreal state. You go about daily business 'as normal' but you're not really there. I feel much happier at the moment when I'm actually with dd, say if we're at home doing drawing or something then I think we both totally forget that any of this is happening. Being out is rather tense. And I guess I don't help things because I'm being constantly over-protective, trying to fend off all nosy enquiries.

Goodness knows how we'd cope if she had leukemia or something. A right pair of woosses me and dp are. How do you spell wooss?

This is hard and horrible but it's mostly superficial. Dp and I pride ourselves on our feminism (well, dp pays lip service) and here we are obsessing about how our dd looks. I want her to be strong enough to not be defined by her looks. Maybe this is the test.

Or maybe I'm getting a bit delirious.

Delirium pretty normal in your shoes I would say.

It doesn't help though. I think the limbo state of it causes the delirium. I'm a woman who needs a plan, I always have done. I need to research something, plan what to do, follow it through. I'm not good at 'let's try this and see...' kind of situations.

I understand your need for plans .

What you really need are the biopsy results and the blood test results because HOPEFULLY you should get some answers!

IF your posts make me smile with tears in my eyes, your daughter sounds like a beautiful, mature girl and you sound like a wonderful mother.

I pray that some kind of remedy/cure is found- but in all seriousness- she sounds like the most wonderful child surrounded by love.

Im never soppy on mnet (do a seach!) but your story has found me checking back in, willing this lovely child along.
She is a a credit to you.

do a search!

Yes fox, that exactly. A PLAN.

Sally I remember the same about you, lots of warmth. Thanks for saying that. It's not that long ago now that Christmas dooby doo but it seems really long ago. At that point none of this had started. As to how long it'll go on it depends on the results of the various tests, the diagnosis, then how she responds to treatment. I would feel better if she weren't getting visibly worse. If it's the periorificial granulomatous dermatitis option then it could be 3 months - 2 years although 6 months seems the most usual amount of time to see a more or less full recovery. If it's the sarcoidosis option then we're looking at a life-time illness although hopefully this aspect of it will be manageable. If we're looking at the third very unlikely choice then there is no cure.

Thanks tiredemma. You're too kind though. Dd deserves it completely but as for me - as my school reports frequently noted 'could do better'! I love her so much and I think I dote on her a little too much too because I didn't think I'd have a child. I need to get more practical at dealing with this, get less dramatic, handle it in an everyday kind of way. Dp was just saying that to me as I got so upset putting her cream on this evening and watching her screaming (she doesn't scream over nothing). This has to be done, we've got to do it, if dd sees us upset and stressed it won't help her to be strong.

Dont beat yourself up IF- you are doing a fantastic job- what more could a child ask for?

It honestly would break my heart to see either of my boys is any kind of pain- I admire your strength, really i do.

Thanks, you are kind tiredemma but I do want to be stronger about it. Dd needs to feel I'm not worried in a way that means she needs to worry if that makes sense?

of course, I know what you mean. If she sees you crying she will wonder why? and this in turn will make her feel worse about her illness at the moment.

Its hard to be strong all the time IF, especially when it comes to our children, you want the best for them and want to take the pain away. its not always possible to do that, you can only be the best mother that you can be, its clear from your posts that you are doing much more than that.

its normal to cry and be frustrated when you see her in pain, thats what being a parent is all about

which dress did she have in the end anyway? im intruiged????