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

[cupofteaplease]

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

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!

Love the walking on water!
Have a great eve and remind us to pray in Thursday

Have a great night out.

Love the conversation about Bea walking on water - fantastic

Enjoy your evening out.

Your dd's sound so gorgeous, what little poppets.

Xxxx

I love the 'smiling photo' it's adorable. She really is a delight. As for her older sisters

I hope you two are having a lovely night out tonight and have a fun day tomorrow at the Baby Show - you will certainly know if you bump into any MNers!!

I don't know anything about NJ tubes, Cup, but I imagine they will change the feed she gets down the tube to one that has already had the protein partially hydrolysed as that is the process taking place in the stomach that will be bypassed. Most other digestion takes place in the jejunum anyway - that's where the majority of the digestive enzymes are. It's really only protein that is worked on in the stomach (and maybe a little bit of fat emulsification).

Love the comment from her sisters, that's just wonderful :)

Hope you enjoyed your evening out and have a great time at the baby show - remember to enter Bea, she's a heart-stealer! xx

Lovely Photo's Cup.

I believe you mentioned reflux meds for Bea, one of these will be an acid or proton pump inhibitor so she is not making stomach acid at the moment which reduces her pain on refluxing so her feed may remain the same.

Hope you and your DH have had a lovely evening.

What three delightful girls you have.

I'm hoping that Bea will work a real miracle - that Dr Doom and Gloom will look at her, smile, say something nice like "haven't you grown" and actually admit to being wrong about her lack of faith in Bea's appetite for life! Maybe the chances of this personality transplant for Dr Doom seem unlikely, but with Bea I believe all things are possible! :o

yay, found you again! So pleased to see the pic of Bea smiling, it's fantastic, thanks for sharing it with us.

what beautiful photos :)

phew glad I found you again so pleased to hear her progress is well and that you and hubby are getting out on your own. Now off to see pics and cheer myself up have a hard weekend as one of my best friends fosterdaughter/niece died yesterday morning aged 22 after a long fight against leukemia :( but good to have that and this thread as reminders to cherish what you have today, because none of us really know what tomorrow may bring x

Your two older DDs are lovely! Such great words from such young minds.

Bless you all.

My thoughts and prayers are yours.

Susssiq I'm very sorry to hear that, what sad news.

I can't believe the weekend is over, it all went a bit quickly... We didn't make it to the Baby Show as the tickets never turned up, I felt pretty disappointed as I was really looking forward to it. I did suggest to dh that we go anyway and pay on the door but he didn't want to.

Hope everyone had a good weekend?

Bummer re tickets. Yep, weekend has flown by with much sunshine.

If it's any consolation I have been to a baby show and it was disappointing so ime you didn't miss much.

Hi Cup, I'm another Lurker, but keep meaning to post or PM you as I have read all your posts and been following you and little Bea.
I was working at the Baby Show all weekend and spent all of Sunday trying to spot you, although it was rather busy and manic at times - that would explain why I didn't see you! I can almost certainly get you tickets for the Birmingham Baby Show in May if you let me know beforehand. I'm also a Primary School teacher in Oxfordshire and was going to suggest that next time you're at the hospice we could meet up / or your older girls could come and play with my 2 girls in a nearby park. Or I can recommend a really good Indian restaurant just around the corner from where you stay.
But so glad that things seem to be going relatively positively at the moment.

Thanks for the lovely suggestions NappyShed, we're back in a fortnight, so perhaps I can send you a PM.

We were asked to come to hospital yesterday to fit the NJ tube, but after admitting Bea, they realised she is too small to have the NJ and the NG she would need to administer her medicines. So they kept her in on a 24 hour pump but she still vomited a lot in the night.

Today, they took bloods to test for thyroid function amongst other things, and a urine sample, but they all came back clear. Dr Doom phoned the gastro team at Oxford to ask for advice, but they haven't replied. Tomorrow we meet with the neurologist, so he may even have some ideas?

Our CNN came in today with a nurse from the continuing healthcare team to discuss Beatrice's needs and what respite they can offer. We'll find out soon. CNN has also contacted disability section of Social Services, so we should have a named social worker soon.

So things are a-moving in some ways, but Bea's sickness remains bad. On the plus side, she's smiling a LOT these days!

Yay for the smiles .

How lovely that you're getting plenty of smiles, she's such a beautiful little girl. Showed DH her smiles photo, it made him smile too x

Thank you Her favourite thing today to make her smile has been me changing her nappy! Funny little thing!

Ah that's so nice! Smiles are golden aren't they :)

No wonder she smiles so much with her big sister's to teach her !

Having said that ... she is a wonder though

Ah she sounds like she's being a total sweetheart atm - and knows how to melt her mummies heart.

Sorry to hear she's being sick still, I hope it gets resolved soon.

Prayers for tomorrow that answers are forthcoming

So glad to hear that smiling is becoming the norm, but I so feel for her with all the vomiting, there really is nothing worse and she has suffered so much, bless her little cotton socks.

Much love to all the teaset.