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.

Glad to hear all is well - no idea what website to order through I'm afraid, but am excited you get to go shopping for Bea!

:)

yay :) positive news, excellent :)

Lovely to hear Bea is doing well. She's such a little darling

Hmm, I may have spoken too soon... Beatrice had a bad night, thrashing around, then has woken up with a temperature of 39.5. I have rung CCN who said to wait and see how the calpol works over the next hour and she'll call me back at 10am. Poor Beatrice

Oh noes!! Fingers crossed that it is nothing serious.

Before I read this post I was going to say that when ds was a baby and not liking the hot weather I would spray a little water from a plant sprayer (at home) or Evian spray (when out) into the air just above his head; he loved the feeling as it gently "rained" down on him!

That sounds lovely Starfishmummy I wouldn't mind someone spraying water on me in this heat!

Hope the Calpol works its magic.

Oh no! Hope she's feeling better. X

Oh no! Hope she's feeling better. X

Poor love, hoping that Beas temp has come down now.

Prayers for a swift recovery

Hoping this is just a blip.

I thought of Bea today when I saw a Gruffola kit .

Poor Bea, our DD doesn't control her temp at all well and spiked some high temps after being outdoors (in the shade) the past few days. Hope its nothing serious and Bea is able to enjoy music therapy again soon x

RE where to get things I have used sensory warehouse in the past. A great Idea I found was a room where you could hang toys - then change them regularly or borrow from a toy library

Just checking in. Hope Bea is feeling better today.

Hi there, just wondering how Bea, and you, were. A little cooler today so hoping htat helps you both.

Bea is lovely :)

Hope that Bea is feeling better Cup

Just popping in to say all is good with Beatrice. She felt much better once the weather cooled down. MIL has adapted a couple of hats so they are small enough for Bea's head,- even 0-3 months are too big because of her microcephaly! I'm hoping this will keep the sun out of her eyes, meaning going outside will be more comfortable.
The Disabled Childrens Team have offered to pay for 2 days a week at a holiday club for the older girls for the rest of the holiday to give them some respite. They start tomorrow

good to hear Bea is doing well

we've used sensory toy warehouse before, they're quite good, we got dd3 the mathmos projector and a few other bits from there. Other places like hawkins bazaar and poundshops have light up stuff, maplins is also good for lights. Proper sensory room kit is very expensive so it's worth seeing if you'd qualify for grants from places like the family fund and cerebra, there are others but I can't think what they are right now. Fb has groups that do second hand stuff too if you have a look round.

Thanks for the update Cup - good to hear that the cooler weather is suiting Beatrice better. Hope your older girls enjoy their holiday club. Go Team Bea! (I may have just a touch of Olympic fever myself!)

SO relieved to read your update. Thank you for updating. And thank God for looking out for dear little Bea with her dear sweet head (off to gnaw at own limbs with broodiness...).

Great news all round :)

Virtual cuddles for the gorgeous Bea x

I hope your family might manage a holiday together this summer - is that possible?

Oh, and I don't like to brag(!), but we have finally managed to wean Beatrice's o2 back down to 0.2l since it went up with a chest infection in May. She currently asleep with 100% sats and a heartrate of 125