Falling apart

[needmorecoffee]

After 3 weeks of dealing with this hellish steroid treatment and the side effects I feel like I can't cope anymore. She's just screaming and screaming. Tomorrow she has an MRI booked to see if the steroids have damaged something. WTF?! They told me it wouldn't. so I ok'ed the treatment. What if she has a brain tumour?
I'm so tearful but can't break down because of my other kids. I catch a bus to the hospital at 8am, get back at 4 to deal with my boys. No-one here to talk to as DH is staying at the hozzie. My mum is old and deaf and all conversations with her are punctuated with 'what? pardon?' or her fucking barking dogs. In laws can't even be arsed to call to see how DD is. So I sit in doors every night and cry alone. I just can't cope anymore. There seems to be no support for parents going through this prolonged hospital stays and terrible treatment.

[PanicPants]

No advice but you have my sympathy.

[Sidge]

nmc - hope it all went well with dd.

I'm sorry you are not near me, but it looks like stringerbell and Peachy are close.

Please use them (hope they don't mind me saying that!) and let them make your life that little bit easier. In the meantime keep posting on here and we are all here for you.

[ShinyHappyPeopleHoldingHands]

NMC ((((((hugs)))))) for what they're worth. It won't be like this for ever, honey. Things will get easier.

Stringerbell and Peachy you are wonderful.

[berolina]

will do TotalChaos, thanks.

[BigBeeristheBigBeer]

NMC, I'm so sorry. We've chatted before (I change my name from time to time!) and you've always been ready to offer me and others good advice. I'm thinking of your DD and your family.

[needmorecoffee]

Thankyou so very much everyone who wrote. DD came home this afternoon. She's still crying and still not herself and heck, still quadraplegic despite a zillion docs seeing her! But the MRI was clear of anything 'new', just her normal brain damage and her EEG, while weird, was improved on the last one so the hellish steroid treatment was worth it.
So we're home. I'm shattered but would like to see anyone who would like to comeover. Peachy and Stringer? Its lonely having a SN child and I don't really know anyonein Bristol. Just knowing someone is coming for coffee would be nice.
But thanks to everyone who offered to help, just knowing people were listening made me feel better.
Anyone who wants to go explain to my MIL that she should be concerned about her disabled grandchild id more than welcome. Feel like givingher a good slapping for her total lack of help and her rejection of my baby.

[saggarmakersbottomknocker]

Nmc - glad you and dd are home. And that the MRI shows nothing new.

I think we should set the Mumsnet Massive on your PIL. You need support - I'm sad that they aren't helping you out more. x

[Peachy]

NMC- CAt me or e-mail me ([email protected]), i WILL come over- would ahve been over before now but for this damned sickness (dont worry, hyperemesis, nothing infectious LOL!). I'm not so god on my feet atm but could easily get a train.

[needmorecoffee]

sent you an email Peachy. But bring your own bucket
DD still whingy and very very clingy. I supose thats normal for a 3 yo who's been very sick and in hospital but its a pain. A mobile 3 yo could cuddle something but DD wants holding all waking hours.
She's so stiff too. Can no longer stretch out her elbows and her wrists have curled in. Amazing what 4 weeks of no physio will do. Apparently there were none in the hospital. I have a thing about her arms being all curled up in the 'traditional' spastic CP position cos people stare more.

[Peachy]

Ah we have the crap for model out the bin too