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.

A fantastic day with little Bea! What a lovely update!

Sounds fantastic, Cup! So glad you had a good time with Bea, and that she did too :)

Oh the parachute - how fabulous - I used to love the parachute at the end of tumble tots!

Sounds like you all had a great time!!
One benefit for you will be the chance to talk to other Mums who are in a similar situation. DS had a lot of home based stuff when he was Beas age, so when he did go to a SN group it was good to meet up with other Mums, where we could exchange information about local services etc

Just checking in on the lovely Beas progress

Yesterday's group sounds lovely. Well done you for getting there and well done Bea. What a star she is!

Sounds like you had a great day with Bea, thanks for sharing with us, I love reading about Bea

So glad you and Bea had a good experience at the SN mums and Tots group. I am still in touch with many of the mums that I met at such a group - 17 years later. Its quite scary that they are all turning 18 - although those whose DC are slightly older than DD are a great source of information for navigating the transition into the world of adult services!!!

That sounds lovely, cup. Lovely photo of Bea on your profile, too.:)

Yesterday portage visited and they played with her, helping her to touch various objects from the feeliy bag- turns out she prefers to touch cold, metal objects- who knew? She ha been put on the waiting list and they hope to have a space for her in September/ October time.

Then music therapy came and they are going to do a 4 week assessment with her. If they think it will be beneficial now, she will go on to have a 10 week course, otherwise they will give her 10 weeks at a later date.

Today I took all three girls, by myself, to Legoland! I feel very proud of my big girls, they were so helpful, and very understanding when they couldn't go on a ride as dd2 was too small to ride without and adult, and I couldn't leave Beatrice. However, we still got lots done, and the kind man at Guest Services gave us all exit hand stamps so we didn't have to queue for anything. He said it should have only been for Beatrice and the rides she could access (umm, none then?!), but as I was on my own with them all, he gave them to all of us to make life easier. Thank you Mr Guest Services Man

Tomorrow, we are off for tea with SallyBear, and then it's a weekend at the hospice and boy, do I need a full night's sleep- it's been so long since Beatrice had a fully comfortable night without de-sating due to vomitting or coughing.

What lovely big girls you have Cup. And hurrah for the sense of Mr Guest Services.
Have a lovely nights sleep at the weekend, and I hope Bea has a fab time at HH

Sounds wonderful Cup, so so pleased for you :)

It all sounds fabulously positive.

Exit hand stamps. Can I take any credit? No, I thought not

Great fun being had and lovely to read about Cup

What a kind man to give you all the exit-hand stamps, instead of being all jobsworth about it. Lovely to hear that some people still do that kind of thing!

Good that Bea's getting all this intervention and help now - keep your keys out of her reach though...

Lovely update

Oh Cup you really are amazing and whenever you feel low all you need to do is come on here and see how much you are admired.

How you find the strength is beyond me and little Bea is the cutest thing I've ever seen.

Here's to you taking every day at a time and having such dignity

Thumbs up to Legoland and prayers for some good nights sleep

Goodness, I am so pathetic at the moment. The lovely Lego Guest Man's gesture had me in tears .

Yeah, love Legoland.

Enjoy your weekend. Xx

Yay, Mr Guest services at Legoland - nice to see there are sensible and compassionate people out there. And yay to your big girls for being so understanding.

I'm glad you've had a lovely positive week and hope you get a well deserved rest at the hospice. x

Not posted for a while but still thinking of Bea and the rest of the Teaset.

Holding you all in my thoughts and prayers.

Hoping your weekend is going really well and refreshing all of you.

cup I love the newest picture of Bea, she is adorable!

As a bereaved Mum, can I just say one thing? You will always have three daughters, you will always be Bea's Mum. No matter what. xx

Love hearing about happy outings with your girls. Hope you have had a good rest at the hospice.