“Rock bottom became the solid foundation on which I rebuilt my life.”

Chrystal

Sounds as though you think you may be there longer than you first thought WB. Does that mean that you've heard from the Consultant? I'm keeping my fingers crossed that they can come up with something positive.
Must admit I was shocked at you thinking people would 'judge' you for the eldest 2 sleeping in the same bed - they're little more than babies! And I hope that you can manage to squeeze in as well and that you're not sleeping on a chair! In the 'good old days there were often up to six children sleeping in one bed... top and tail.:)
Sending (((hugs))) to you all and positive thoughts heading your way. XX

WannabeFree

Bank balance £0.28
Cash - pennies

Morning
Older two are at school

We won't be home today. Probably Friday! Cancelled some of the things they planned. Now just getting everything back to what it was. Some important stuff been done so can be worked on. Some things missed because couldn't be done. Will have to go to the children's as an inpatient. Is the long story cut short.

Going to see if DD1 can stay with a school friend tonight I think. Their DD is her best friend and goes to breakfast/after-school care too so fingers crossed.

Nothing much else to say I don't think. My data is low so keep needing to turn it off if my posts are short/few and far between sorry.

x

teafor2

Hope you do make it home in time for DS's birthday and nice to read you have a little bit of help you can call on for DD1. Hope you are getting some answers and things are becoming clearer as you go along. xx

Toni'sfriend

Wish we could do something to help, W, but you know we're all thinking about you.

jwil

Hope you manage to get home soon x

WannabeFree

Me too Tea! Hope I'm home in time to make his birthday cake etc too If not he'll understand though.

DD's friends parent hasn't replied yet I'm guessing because they are at work. I'm a bit worried now it's something the girls have planned at school and us parents had no idea! I guess worst thing they can do is say no.

Youngest down having some stuff done. So thought I'd do a quick update that's better than this morning. We are basically going back to the meds/treatments we where doing. Coming off the steroids has shown she definitely needs them. Samples and things have been taken to see if we are going down the correct path or there is something else going on there too that needs a different path of managing. << this is the likely one. Which sounds worse but over all is better as it means there is more options to 'improve' the management of things.

We need to wait for the full results of things and for the consultant here to discuss the findings with the specialist consultant at the children's. Have to be prepared for a stay over at the children's not too far in the future but it won't be right away - unless she becomes acutely unwell etc.

Anyway rambled on enough. Left with a lot of things to think about. I'm sure when she's back on the ward she will be as grumpy as ever. I think I prefer the steroid fuelled moods than this 'limbo' of not having them for over 3 days now!

Thank you again for all popping in and your lovely replies

x

EssexHebridean

Thinking of you all WF - and you're right about a new path meaning more options too!

One quick thought - have you enquired at the hospital as to whether there is any charitable funding available from there to assist with increased costs for food/travel etc in these circumstances? It may even be that they could sort you access to a subsidised canteen for example or to the nurses room to allow for making drinks which could be a help?

Cherryfudge

Thank you for the update, W. I keep popping back to see how you are all doing! Your DD's 'case' reminds me so much of a lady I support who was being treated for symptoms but eventually two things were changed and she is massively happier now. It's so important to keep digging down to find the absolute root cause of symptoms if possible, I think.
I'm hoping and praying for your DD to get at least as productive an assessment. xx
P.S. Sending a virtual :coffee:

teafor2

Even if it is a plan the girls have hatched up, I hope DD still gets to have her sleepover

You sound like you're making progress in some areas, like knowing the steroids are definitely needed etc. As hard as all this is, it might not feel so bad when you know exactly what you're dealing with and that a definite course of action can be taken when problems arise.

Hope DD isn't too grumpy when she gets back xx

Toni'sfriend

You sound like you're making progress in some areas, like knowing the steroids are definitely needed etc. As hard as all this is, it might not feel so bad when you know exactly what you're dealing with and that a definite course of action can be taken when problems arise.

I would absolutely agree with this. Once they can see exactly what they're dealing with they can plan more appropriate treatment and that will make life so much easier for both yourself and the little one. And as Cherryfudge says just changing one thing may make all the difference. I know it's difficult just now but I know you'll hang on in there.

I'm sure your daughter's friend's parents will help out if it's at all possible. I know you don't like bothering people but I'm sure there are a lot of people out there who would be more than willing to help you out if needed.

Take care. xxxx