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!

Oh no, I hope the tube gets sorted soon; its good that you can access the specialist team directly though - it does make things much easier.

When DS was small, I went to a conference (organised by a charitable organisation) where the charity advocated "key workers" which in some respects were like your PA idea. each child had a keyworker - usually a social worker, but not necessarily - who coordinated with all the professionals and did things like making sure basic "histories" and details were passed on without the parent having to go through it time after time. I think some areas were doing this but doin't know how widespread it was or even if it still happens.

Oh damn damn damn. I hope the tube is replaced soon and that they will come up with a better plan.

You are so articulate, Cup - have you ever thought of writing all this down as a book / paper / article? The world needs to know how confused and careless care is for children such as Bea, even with you fighting her corner so ardently. And that she is a joy and a privilege and a blessing, come what may.

xxx

Prayers for Bea and you all in this rollercoaster week of ups and downs... I hope that the ride will become smoother very soon.

I have had a week of chasing up appointments and referals for my youngest DS and DD and have been passed from the paediatrician to CAMHS and Speech therapy. Keep getting the excuse that what I am asking is i being dealt with (or not!) by a different area - and I'm expected to understand that they don't have access to each other's case notes! It must be much harder with Bea who has so much that needs to be dealt with urgently...

Thinking of you x

Cup - I was at the JR today, and I thought of you both. I hope that they managed to repass the tube.

Thinking of you xx

We were advised to wait until the morning and see how she took her feed, but she vomited milk again, so I had to take her back to Oxford. But due to missing rush hour traffic, it only took 50 minutes, and we were in and out within an hour! We had a different radiology consultant from yesterday, a lady this time, and she was very calm with Beatrice, to the point that Bea had nearly fallen asleep by the end of the procedure! (After protesting wildly to start with).

I won't say fingers crossed it stays in place, as I don't want to jinx things- but, you know what to do!

Thank goodness it's back in, I've been checking for updates all day. I hope this weekend is a more relaxing one for you than last week's was. So relieved all is ok x

That's good. Really good.x

Excellent news. And what a gem of a consultant who was so good with Bea - what a relief.

Yay x

Prayers are with you always.

Great news.

Everything crossed.

There has never been a more mumsnet baby than Bea!

Sounds positive :) Everything crossed x

Got them all crissed for you and Bea.

Hi cup how is little Bea doing now?

Hoping the Teaset had a calm weekend and that you are enjoying a peaceful evening to finish it with x

Beatrice has had a good weekend, she was moving and stretching a lot today, I think she's enjoying her milk again.

We had a lovely day yesterday visiting with friends, then I went out for the evening with friends. So I spent today feeling a little 'delicate', but made the most of it by stealing lots of cuddles with Beatrice and the girls.

So pleased to hear you all had a good weekend . How lovely that you had an evening out with your friends worth feeling a little " delicate" for the next day !

Glad you've all had a lovely weekend.

Sounds like you've had a lovely weekend and what better way to spend a Sunday than cuddling with your girls - much deserved after the week you've had x

Ah, good signs that Bea the Beautiful is happier again. Cuddles really are the BEST thing xx

Glad to hear Bea is feeling happier. How are your other two daughters?