Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

See all MNHQ comments on this thread

Not borrowing trouble ahead of time, just enjoying each day with Beatrice.

1004 replies

cupofteaplease · 21/02/2012 22:31

Thanks to Thumbwitch for inspiring the title of this new thread. Smile

I will do my very best to minimise my worrying about the future as none of us know what it holds. For now, it's all about celebrating Beatrice's life today, every day.

As always, please feel free to follow us on our journey, and thank you in advance for the wonderful advice I am bound to receive from fellow parents, of SN children or otherwise.

Here's to a positive, uneventful thread!

OP posts:
fairimum · 26/03/2012 22:33

How is Beatrice doing?
xxx

cupofteaplease · 27/03/2012 21:42

So, I'm back from Sardinia. I had a WONDERFUL time with my best friend. We ate lots, drank too much Wine, danced til the small hours and got very little sleep! By all accounts, the girls were super stars for dh and he said how much he enjoyed spending time with them. I think they were all a little disappointed when I came home! Wink

Anyway, home I came, and Beatrice obviously decided that to pay me back for deserting her in such a cruel way, she was going to get the full on snuffles and stay awake ALL NIGHT. Obviously, as dh had to go to work at 2am, that meant that I had to stay up all night too. Cheers, darling. Monday was no better and after another sleepless night and taking the girls to school in a zombie-like fashion, I took Bea to the GP for them to listen to her chest to ensure the snuffles hadn't moved. They put her on the atrovent nebuliser and it did help shift some secretions. She's seemed a lot calmer this afternoon.

After the GP I had her weighed and she was 9lb 8oz Grin

This evening I have applied for carer's allowance now I am only on SMP, but because wages department messed up last month, my payslips don't show any consistency, so I doubt they'll agree to give it to me. Hey ho, it's worth applying.

Talking about work, I went to meet with my head on Monday and she has agreed to me going back one day per week from 11th June until the summer holiday, then 2 days per week after the summer. I feel so much better now I have a focus.

We still haven't heard from the continuing healthcare assessment which is a bit of a pain as they said when we met that they were putting Beatrice on the rota for care during March, but it's now nearly April... Hmm And I received an answerphone message from the social services disability team, but the lady sounded quite brusque and said, 'I've been told to ring you by the CNN, but I'm a bit confused as to why and what you expect from us'. I don't bloody know what to expect from them! I thought they'd ring and tell me what they can do! She's on annual leave now, so I don't know whether to call her back next week or not?

Dd1 has an ENT appointment tomorrow, my brother has his CAT scan on Thursday, so fingers crossed for that.

OP posts:
Carrotcakeisace · 27/03/2012 22:00

So glad you had a good break, you deserved it and cheeky Bea playing you up!

I'm glad your head has agreed a phased return but grr at Social Services. With regards to Carers Allowance can you get a letter from your payroll dept explaining the situation? Especially if it is their mistake? Hope dd1s appt goes ok, is this the follow up from her grommets? Dd2 passed a hearing test for the v first time at her post grommet appt, it made me stupidly proud. Fingers crossed for the scan too x

CestTout · 28/03/2012 10:49

Lovely to hear you had a good weekend and that the girls were good for your DH.

Hoping you had a much better nights sleep last night. x

Thumbwitch · 29/03/2012 05:39

Hi Cup! Lost you for ages (and RL got in the way as well) - sounds like you've been going through it since I last caught up!

So sorry about your brother, I really hope his CAT scan goes well.

Hurrah for finding someone who can do childcare for Bea - and hurrah for her weight gain, that's fantastic!

Hope the ENT appt went well too - it's really non-stop for you, I'm amazed you have the time to go back to work! Wink

Lots more positive vibes for all of you, including your brother. xxx

Four4me · 29/03/2012 13:53

Great to hear you had a nice break, you deserve it. Xx

MessNessPess · 29/03/2012 15:36

Great news re NJ op and weight gain and childcare for Bea.

Thoughts for you and your brother.

BB3 · 30/03/2012 19:14

Hey cup - so glad your break was good - naughty bea keeping you up (I reckon she wanted a piece of the late night holiday action with you Grin)

The weight gain is brilliant, she'll be in double figures soon!

Crossing everything for your db and hope ent goes well for dd - we've just been referred to them for ds too.

That was a helpful message (not) let's hope she was just flustered when she called and is more approachable when once she's relaxed on her hols!

Great news about returning to work - I think it will be really good for you all x

cupofteaplease · 31/03/2012 13:18

More prayers please Sad

Beatrice is in hospital with a suspected infection. She came in because her sickness getting worse indicated that her tube had dislodged, which an Xray confirmed. They fitted a new tube during the night, but since then she's spiked a temperature. She's finally comfortable, asleep in 0.75 o2, but when awake she's thrashing around in discomfort.

The duty consultant has already spoken about her resuscitation plan if she deteriorates. I hate that part. For any normal child they would be treated as best as possible. For Bea, I know they'd rather we held things back as her future looks to be uncertain at best, short at worst. I just want my little girl to be comfortable and loved, and I want to see her bright eyes and beaming smile again. Please God.

OP posts:
ExitPursuedByABear · 31/03/2012 13:22

So sorry to read this Cup.

Will be praying for all of you.

ThisWeekonFancyPuffin · 31/03/2012 13:36

Oh Jesus Cup Sad

Thinking of you all and sending positive vibes

((((Hugs)))) xx

TheDowager · 31/03/2012 13:40

Prayers coming

Rowgtfc72 · 31/03/2012 13:47

Thinking of you all x

DutchOma · 31/03/2012 13:51

May the Lord bless you and keep you in His love always

Four4me · 31/03/2012 14:07

Oh no. Lots of get well Bea thoughts and prayers. X

Haberdashery · 31/03/2012 14:32

Thinking of you all and sending strengthening thoughts.

Whatevertheweather · 31/03/2012 14:44

Prayers coming from here Cup. Come on Bea sweetheart xxx

bigbluebus · 31/03/2012 15:22

Oh Cup. So sorry to hear Bea is back in hospital just when everything seemed to be going so well.
My thoughts and prayers are with you and your family at this stressful time. I can empathise about how the medical staff keep on about how far to go with resucitation with children like ours when you know that for any other child they would just be focusing on stabilising them and getting them better. I have been through this 3 times in my DD's life and it never gets any easier to talk about it.
Hopefully 'Bea the fighter' will turn the corner soon and show them all yet again what a fighter she is. Take care.

FelicityKendalmintcake · 31/03/2012 15:30

Love and prayers for Bea.

Carrotcakeisace · 31/03/2012 16:18

Thinking of and praying for you xxxxx

weblette · 31/03/2012 16:22

Love and thoughts for darling Bea and all the Teaset xxx

starfishmummy · 31/03/2012 16:35

Hugs and prayers coming your way

Hebiegebies · 31/03/2012 17:03

Prayers x

fhdl34 · 31/03/2012 17:32

I'm not religious but am thinking of you all and hoping for Bea's speedy recovery xxx

ommmward · 31/03/2012 18:03

I am holding you and your girls in the light (((((cup)))))

Please create an account

To comment on this thread you need to create a Mumsnet account.

This thread is not accepting new messages.