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.

I can't do better than some of the lovely words and advice offered, just wanted to say Hi and remind you that you are a brilliant fantastic Mum, and where all your children are concerned you know best.

Cup - you can never be objective about how you have handled all that's been thrown at you since your lovely, lovely Beatrice came along because it's your reality, you are in the heart of it all - but if you could see yourself, just for five minutes, as others on this thread see you - you would be totally blown away by the mother that you are to all your children. Bea is here, she is alive, she is growing, she is developing - because you are her mother.

Hello Cup.
I work with many families. Their children all have different needs, different disabilities. They family situations are all different.

I am of the opinion that each family should be treated as an individual unit. No family should be compared against another.

Families do not 'fail' if they feel they need high levels of support and they are not extra noble if they feel they wish to care for their children without outside intervention.

If a family feels more confident caring for the child through a crisis in hospital then I strongly feel this should be faciliatied, exactly the same as if they wanted to have support to care for their child at home.

If your little teaset was plonked down in another area you could find yourself being criticized if you decided NOT to take Bea into hospital.

I sincerely doubt that anyone at the hospice or hospital is sniggering or criticising you for your choices. If they are then they are the sort of jaded, burnt out or just plain unpleasant HCPs who should look for a job elsewhere.

Your little Bea is still so young. She has serious issues and only an idiot would look down on a mother who wants access hospital care for a sick child.

I made lots of choices about how I wanted things done when Billie was ill. They were not all popular but they were what I felt we needed.
One of them was spending longer in hospital than some other families.

Some families prefered to sit with their coats on, edge of the bed, whilst the treatment went on, then out of the door like a rocket asap.

This suited them, it was not for us.

You continue to do what you feel is best for Bea and for you. You are not a burden, you are not stupid or foolish.

You are certainly NOT a rubbish mum, a rubbish carer or a rubbish teacher.

Well said Mrs DV!

Well said Mrs DV!

:)

Offering positive thoughts for a wonderful little girl.

Cup: Your strength is amazing. Your love for Bea and your girls shines through every word you write. The fact that you go in and teach when you have all this going on is a sign of your strength.

My thoughts and prayers are yours.

I will post tomorrow when I am on my laptop, I just wanted to say a big thank you for your lovely, supportive messages- once again they have picked me up.

We had a wonderful, positive meeting with Dr Doom and the geneticist on Thursday and it has lifted my spirits no end. I'll explain tomorrow, but for now, I am ready for the weekend with a smile on my face

Oh that sounds promising. Hope you have a lovely weekend.x

Lovely news for a rainy day! Happy weekend x

Lovely news for a rainy day! Happy weekend x

Huzzah !! Huzzah for the happy meeting. And Huzzah ! for Bea the Beautiful !

Hurrah for positive meeting, especially with Dr Doom involved - it must have been good if you're still smiling!

Dr Doom comes good

Sounds promising - Dr Doom and cup still smiling - this is one update I can't wait to read

Another one here looking forward to hearing how Beatrice is doing .

Oh good, enjoy the weekend!

Well as you can imagine, I wasn't overly excited about meeting with Dr Doom. I didn't really have much to say, but thought I'd better take her along anyway...

When we got there the receptionist told me that the Geneticist would also be in the meeting. This was a surprise, and I felt a bit nervous as the last time I saw her, Beatrice was in SCBU. Anyway, as soon as we went in, the Geneticist was all smiles and commented on how aware Beatrice is, and how she clearly has visual awareness. She held her on her lap and played with her, commenting on how she is symmetrical, and flexible- her spastic contractures are less apparent, rather than worse, as she was expecting. She also commented on her face, saying that her dysmorphic features are less noticible now except for her small jaw. She asked us lots of questions and seemed pleased with the answers, such as no seizures or cataracts. She said she was expecting her condition to have deteriorated considerably and her lungs would be too weak to move. She said ideally she would like Beatrice to have another MRI if anaesthetic wasn't an issue as she would like to see what development has gone on in her brain, as she is certain there has been some.

Dr Doom was all smiles, and I'm not entirely sure if it was just for the Geneticist's sake or whether she was genuinely pleased. She was glad she hadn't seen Beatrice on the ward and she too was surprised by how much weight Beatrice has gained. She prescribed stickers to go behind her ear to dry out her mouth secretions with a view to control her aspiration problems. She saw Beatrice sitting merrily on my lap with no back or head support having a good old look around and when she measured her, she sat her up by pulling her arms where upon her head and neck control was great. Dr Doom had to praise her .

The geneticist said she is no further along with her research, but she has sent Beatrice's case to a couple of other Geneticists specialising in Lissencephaly disorders. She said she is sure that Beatrice's case is not degenerative, and so is ruling out some of the conditions she was investigating previously. So all in, it was a lovely appointment. Nothing changed, nothing was said to indicate that Beatrice's condtion is any worse than before. It was just... positive.

What a fantastic appointment! I hope Dr Doom as learned as much from Bea as we all have xxx

Wow , how fantastic ... Go team cup!!!

Great news, so glad the appointment went well and things are feeling more positive for you again.

Hope you have all the people around you for when the natural bad days come around. Bea is so blessed to be with you.

What a lovely post to read

How lovely x