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.

Hugs to you and your family Cup.

Your families strength is unbelievable. But you are also allowed to be not so strong and to lean on people for support.

You do have 3 lovely beautiful girls. 2 you will keep and one that you will have to share with the angels one day but she will ALWAYS be in your heart, your memories and every part of you. You were chosen to look after this little angel until it is time to spread her wings and watch over us all.

We are here for you during the good and the difficult times ahead. Never ever be afraid to let us know how you really feel.

Lots of love and hugs to your family x

Thank you all for allowing my little outburst last week and for standing by me regardless.

This week has been fairly uneventful too, which I love. Sunday, I was getting a little concerned about Beatrice's vomitting getting out of hand. She was being sick very frequently and her sats were dropping into the 50s as she can't coordinate vomitting, swallowing it and breathing- it's hard work, don't you know?! So we popped along to the children's ward and 5 hours later we left with the advice to up her domperidone by 0.7ml! Anyway, her feeding tube then blocked on Tuesday and Wednesday nights, which both required dh taking her to the hospital for them to unblock it with Coke and eventually pull it out. It was in a disgusting state- they obviosuly can't cope with lasting for 6 weeks. So yesterday it was off to Oxford to have another tube put down under radiology and it went down first time, no problems. The surgeons who saw her were very surprised and impressed with how much she has grown! Did I mention she now weighs 7.5kg (15lb 7oz!!!)?

Tomorrow, we are all off to a spa hotel for the weekend to swim, bike ride, play golf, relax by the pool etc. I can't wait.

On Wednesday of next week we have portage and music thereapy coming to assess Beatrice and see what they can offer to help her. On Monday we have the OT coming out with a rep from the seating company to measure her up for a seat. Our CCN has also emailed the OT to tell her we need to be referred to wheelchair services to get her a suitable buggy that supports her head and body. We also need to make an appointment with the safety centre who will fit her for a SN-friendly car seat.

On Wednesday, we had a meeting with CCN and our key worker from continuing health care (our SW failed to turn up ). They are suggesting at the next panel, this Wednesday, that we have overnight respite one night per week to accomodate the fact that Beatrice is vomitting and de-sating a lot during the night, meaning I am not sleeping well. They have suggested someone comes and sits up with her the night before I go to work, and this should be increased to 2 nights in September when I increase my hours at work.

I'm not sure if they'll agree, and I feel a bit of a fraud bearing in mind the struggles all carers have day in, day out. But if the support is agreed, I won't look a gift horse in the mouth...

On Friday, we are off to the hospice for a weekend stay

I went to the GP today for a review of my anti depressant medication and I had to see a visiting doctor who I've never met before. What an awful appointment! He knew nothing of Beatrice and kept referring to her as 'the child'. He said I am on twice the licensed dose of AD, and he wants to wean me down, despite the fact that I said I am still having significant periods of low mood. I refused to cut my dose, but asked for councelling so I can talk through some of my demons. He scoffed and asked why I felt I needed to talk about it, but eventually said he would refer me although I would be waiting months. How helpful...

Twat. Sorry but doctors like that really piss me off when they clearly know nothing.

Hurray for 15lbs + though .

Wow for the weight gain!

I hope you all have an amazing weekend!

Have a lovely spa weekend! :)

As for the doc (if you can call him that) just ring another that you know or ring the surgery for the referral number yourself. I did that for my DD. Then hound them for an appointment instead.

Go away have a good weekend and forget the wally GP x

Your idea of an uneventful week is interesting - I was tired out reading it

Yippee for the weight gain - good girl Beatrice.

Horray for wheelchair services, seating and car seat being sorted. I would suggest from my experience of these things to have a google and have in mind some ideas to suggest as suitable. I hate to say but sometimes their idea of best is the cheapest possible thing that will do - and we all know Beatrice is worth more than that

Have an absolutely fantastic time at the spa.

Oh and good on you for telling the GP to do one!

I love hearing about the wheelchair etc, because its her future , which she has! You've both come so far.

So sorry you had to put up with yet another ignorant bigoted twat in the medical profession there, Cup! There are so many nice and good ones, it's such a shame that these idiots let the side down. How dare he lecture you without knowing anything really about your history? Cheek. Good for you, standing your ground - you've come on so far!

Hurrah for everything else being done by the support services and I hope that you get more sleep - you'll probably find that helps your mood as much as extra ADs - sleep is so important as you know. You could try incorporating more melatonin-rich foods into your diet, that might help some too www.livestrong.com/article/279680-food-containing-melatonin/ here is one list and some information.

Yeah to the weight gain, well done Team Bea.

I feel the gp needs a letter written and sent to the PCT and practice manager, shoddy attitude.

Even a none eventful...much... Week with Bea is full on, which feels normal to you but is a clear case of more than your average NT baby.

Sorry to hear the doctor was such an idiot but yay for the uneventfulness and yay for weight gain, spas, hospice stays, night support, chairs and wheelchairs. X

Enjoy your weekend. Agree that life is fairly full on for you even when nothing 'much' happens.
Glad you were able to share on here last week. Wish you could show this thread to the visiting GP and then ask if he felt the same about his medical opinion and bedside manner.
Grab all the help you can. It's one of the wonderful things about the UK

Hope you all have a lovely time at the Spa.

Great news about the wheelchair and other equipment - as someone else said, it is the future .

What a chunk she is now!

Sounds like lots of progress is being made in getting you support. How fantastic. GP was an arse though
Will Bea's increased size help with passing the tube more easily?

Cup - I saw you'd posted on the thread for Aillidh. Iwant you to know that it is praying for Beatrice that's taught me how to pray with mumsnetters on threads like that. It's Beatrice that has shown me how prayer like this can work. I would have prayed for A but I think it it would have been much more quietly Anyway just wanted you to know that and of course I'm praying for Bea too. I believe in miracles.

Good to hear about the positive things, and I hope you're having a fab weekend at the spa

As for the GP... words fail me! I would be tempted to complain to the practice manager myself, and arrange another appointment too.

Sending you peace and strength x

I hope you all had an awesome spa weekend

I have just had the most empowering day with my little girl! I took her to our local special school and we joined in with their pre school swimming class, then we went to their movement room and participated in an hour long conductive education session. They helped Beatrice sit up, and she followed the ribbons and lighted ball and lay under the parachute. One of the therapists did some physio with her and really worked her hard!

I'm really proud of myself for going outside of my comfort zone as I usually hate mums and tots groups, but this was fantastic. Of course, Beatrice had the most disabilities, but I felt ok about it, as the therapists did all they could to include her in some way.

It's a weekly group in term time and I can't wait to take her back

:)

Cup, it is lovely to hear updates, as always. Sorry you had to see such a useless doctor, but yay! for Beatrice and all she is achieving.

Awesome weight gain, btw - my dd2 was 15lbs at 15 months old, with no significant health issues to combat!

It sounds like you had a lovely day today - here's to many more!

What a lovely update! Thank you and so happy to hear such happy news!

Thank you so much for sharing with us . It's so lovely to hear that you had a good time .

That sounds like you had a lovely time, Beatrice too .

oooooo like like like busy bea

I'm so glad both you and Beatrice enjoyed your new experience.

here's to more happy days.

What wonderful news

That's so lovely to hear look forward to hearing more about Bea's activities. I wonder if her dreams are becoming more exciting as a result of the extra stimulation?