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 cup, I only just re-found you and so pleased to read your latest update. How marvellous Bea is with smacking lips and smiling at her mummy. Dh words were "aww she's having fun". Brilliant how your elder dd's are doing. I personally think hearing they are happy, kind and thoughtful is far better than being super academic. Love to you all for us here x

Oh my, the new photos are marvelous! Bea is just so bloody cute.

Well done to the other two for glowing parents evening reports.

We all big up our children it's what parents do. You may be noticing things that others aren't but that is because you are so in tune with her not because they aren't there.

I am sure your connection and relationship with her is the main thing that has made her defy the odds. Her communications with you may remain subtle, our are with my son (and might I add took longer to achieve than 6 months), but if you do something then she does it is communication.

It sounds like your bigger girls are doing fab too.

x

just done a course in lannguage/communication development (training to be a preschool teacher)and have learnt that imitation is a vital part of it and the "taking turns" you describe so absolutly think this is a stage in her communicational development Go Bea!!

Go Bea!

for all your DD's. What lovely things to hear about your elder 2 at parents evening. They sound like lovely girls.

Fab news about Bea's weight and volume of milk.

And as far as the communication goes - anything 2 way is classed as turn taking, any response to you/ your sound is classed as understanding communication and that sounds have meaning. However Bea responds is irrelevant - although I did have a little at picturing her cute face smacking her lips!

Your not bigging up her acheivements, they are big, and you should be proud and want to share with us all.

sorry don't mean to sound like you should share - like an order, just that it's lovely you want to share and your right to be proud.

Yes, well put, youarekidding - these are big achievements for Bea and welcome encouragement for cup who is a proud mum like every other mum and we love to hear all about it.

And I for one love to share in Beatrice's achievements and feel honoured that Cup allows me to share.

Thank you ladies, I am very happy to share youarekidding and I need very little encouragement!! As an aside, how did you get into special education? Did you start off as a mainstream teacher? Please do PM if you'd rather not discuss on here (if you have time and want to answer my question, of course! )

Anyway, we are home and Beatrice is like a new baby, all eyes, arms and smiles. I can't believe what a difference having food staying in her and not being vomited out has made. Poor baby, going all this time waiting for a solution.

When we meet with the gastro surgeon at Oxford I shall be pushing asking for a jejunostomy under spinal anaesthetic as she can't have a GA. I hope they can offer us a solution!

Ya Dilly. You have 3 amazing daughters - if you can't be proud of them, who can? other than 400 MN Aunties of course?? If Bea 'was just hungry' the whole exchange wouldn't make her smile would it??

You were told at one stage Bea wouldn't be able to smile - fecking hell, the world and his mutt would have heard me shouting it from the rooftops when she did - as for reacting to you... after the prognosis you were given... it's beyond fabulous, it's incredible and wonderful and brilliant and .... well, just fucking amazing!! She's an absolute miracle that wee girl and I, for one, cannot get enough of her :)

As for the other two, they are incredible as well - it's a credit to you and to them that they are still happy, smiling, polite, enthusiastic learners and kind friends - they are also 'keeping up' academically - that's fab.

I'm glad you are home and that Bea is even happier now she's keeping her food down! :)

I am so glad to find you again, and to hear that Bea is doing better now her nj tube is in. She is such a beautiful baby, with great taste in literature, and I think it is wonderful to hear about you and she communicating with eachother - she sounds like such a character.

Fingers crossed that the Oxford surgeon has better bedside manners than Dr Doom, and can offer a solution that works for Bea.

Hurrah for being home Cup you must not feel guilty that the feeding issue has been so hard to solve. That's not your fault - it's just a very hard one to crack. Bea turn taking is fantastic news

The whole teaset rocks! You have every right to be proud of the whole family and each individual in it.

cup I am an LSA in special education atm and doing my degree though open uni and then will do GTP. I got into special ed because when I did my collegue placements many moons ago! I really enjoyed special ed and was offered a job on my placement.

I've never wanted to, and never will do anything else. Everyday a challenge and everyday a reward. And I'm priveledged to do what I do.

PM me any questions you have or ask me here. (i'll talk about what I do until the cows come home!)

Ahh, I've been up this morning since 4 with a hungry little Beatrice who woke me up with some major lip smacking. She's meant to have 7 hours off the pump overnight so we can sleep (she can't be left unattended when feeding in case the tube dislodges and milk feeds into her lungs) but she's not managing it. She's obviously realised what it feels like to be well-nourished and she's taking no chances on going without for too long!

I'm sure the dietician will tell me off, but at the moment I'm just overjoyed to see her content and benefiting from a feeding regime that finally works for her. Let's pray it continues.

Have a great weekend everyone, tomorrow is Beatrice's baptism Take Two, the first one being at her bedside. Let's hope this time there will be tears of happiness rather than devastation, and that the sun shines for her.

Cup that's fantastic that she wants more food (even if it means a 4am wake up!) I wouldn't worry too much about what the professionals will think, bea has proved them wrong before and I imagine it won't be the last time

I'd be shouting from the roof tops about bea's achievements! My ds has speech problems and I want to dance around the room any time he makes even the sound of a possible word (although I don't! ) and that is no where near as significant as Bea's achievements. Her communication (and it definitely sounds like that was what she was doing), is such a massive step forward. Go Bea.

I hope her baptism is a beautiful occasion, it will without doubt be a tearful one and we'll all be thinking of you xx have a lovely weekend. X

Cup that's great news. As BB3 says below lovely to know she's hungry and that she's communicating it.
Hope you have a lovely day today, the sun will shine on Bea I'm sure of it. Xxx

What a wonderful day you will all have tomorrow Cup. Prayers for you all but especially for Beatrice.

That's absolutely great, cup.:) Sounds like the feeding regime is finally right for Bea and that is making an amazing difference. Fabulous. I hope the christening is wonderful.

Bless Bea and her lovely smacking lips, hope the baptism goes well tomorrow

he he love the lip smacking

hope you all have a wonderful day tomorrow - enjoy every minute xx

hope you have a great day tomorrow :) I'm looking forward to more pictures of your beautiful girls!

Beatrice the scoffer .

How lovely to hear that Beatrice is hungry and enjoying her food. The forecast is meant to be good I think for tomorrow, so I hope you all have a lovely day.

Can't wait to see the photos.