Making hay while the sun shines and always adoring Beatrice.

[cupofteaplease]

I have chosen the thread title this time, because current circumstances means the sun isn't always shining for Beatrice at the moment. Indeed, she is currently in hospital in a fair amount of discomfort. However, when the sun does shine, and we have bright and clear days, we pack in as much as we can.

When we brought Beatrice home from SCBU, we had the consultant's words ringing in our ears, 'Take her home and make some memories.' I feel confident and proud that we have made a treasure trove of memories, however long Beatrice's life may be. She continues to be surrounded by so much love and adoration from her family and I feel this love has helped her to thrive.

During the difficult days, such as these, we pray hard for peace and calm, and for a quick resolution so we can take our darling girl home and make even more precious memories with our beautiful Beatrice.

As with all other threads, same rules apply , read if you want to, post if you can, but above all, please spare some positive thoughts or prayers for Beatrice.

One quick google and there it is, it looks perfect and as ever the words are heartfelt and bring tears to my eyes. How far this journey as bought you and may it continue for as long as possible

PS all 3 girls are gorgeous as ever

Ah carrotcake you found it! The website is very much in its infancy so I haven't posted a link yet. The web designer is away until the middle of next week, but on his return there is a 'Story so far' section to be added, and I want the main colours changed to something more inviting.

Lovethesea I love the idea of pin badges! I shall look into them and let you know...

The charity have now created a link to an online giving page (a bit like JustGiving) which I will link on the website when I am ready for it to all go live.

I found it too, it really is a piece of cake, Cup.

Those photos are incredible.

I can't find it.

Oh - now I can - look forward to the website going live.

Oh my gosh Oh my gosh, Bea is a year old !!! Fabulous

Well that 2 fingers up to Dr Pessimist isnt it.

Go Team Bea

x

Love the page tho not sure of the top of Bea's head in the title.

Pin badges would be lovely and rubber bracelets.

Have tried a few googles but can't find it. Post a link when you are ready!

Google team bea and it appears by magic!

MNP, you are right, it doesn't look great, our web designer is away until next week so it's not actually ready to go live yet. I've designed a new logo and written a potted history which needs to be added, as well as the link to the fundraising site.

Talking of fundraisers, Bea's first one last night raised £1800!

Woo hoo! Lots of lovely exciting options to enrich all your lives with Bea.

Maybe she should have her own glider ....

Sorry I've not been around for a while. Not had Internet and generally not been on mumsnet - although had a quick read if posts in 3G. I'm do glad you had a great time in Lourdes and yhat Bea have a great 1st birthday.
I have had a gander at the website and its looking great. Lovely pictures too.

Hope all continues well for you all x

Wow- £1800! That's fantastic. I love the website too.

We had our party for Eleanor's first birthday yesterday and it was a great success. We raised £150 for the hospice, and everyone was very touched by Bea's story and happy to donate. There's some pictures on our justgiving page if you want to have a nosy, it's www.justgiving.com/elliesjubilee

another long time lurker wishing you well and pleased that you had a good holiday and birthday.

Lovely photos of the holiday - I noticed that in the one of Bea and her sister, it looks like Bea's eyes are closed? I remember you saying a while ago that she was at that point not able to close her eyes properly when sleeping and her eyes were getting really sore as a result - has this improved over time then? I hope so, as it sounded like such an uncomfortable thing.

How are the smiles coming along?

Wow, thank you Glabella! How wonderful I hope Ella had a lovely day.

Aww, that's made me feel all fuzzy inside!

Morning Yes, she can close her eyes now when she is asleep, she still doesn't blink. But, her eyes no longer get dry, because she is so well-hydrated I think.

As for smiles, she grins if you tickle her under her arms, but that's about it. That said, she smiles with her eyes very clearly when she is happy, you can really tell the difference.

Right, hre is Beatrice's background story in short. I'm sure some of this will be familiar to those of you who have followed her all along! Team Bea Linky

Beautifully written cup. There are so many similarities between Bea's start in life and my DD's that it brought tears to my eyes.
We are counting down to DDs 18th birthday in a few weeks time - a day we never thought we would see.
Long may Bea continue to thrive.

Beautifully written cup x

Just beautiful x

Well it looks like I'm up for the day. Beatrice is really suffering with her nighttime reflux. I hate moaning, but I just want some sleep!

She seems snotty and grumpy too, I doubt that would be a reaction to her MMR jab yesterday afternoon already?

I can't believe that your lovely youngest DD is a year old. She gets prettier and prettier.
No idea about MMR reactions. DD didn't react as far as I remember.

Beautifully written Cup

Just made donation towards giving Bea some more equipment and new sensory toys. here

Sorry to hear Bea is a bit grumpy. Hope you both get more sleep tonight xx