Cup and the Teaset face 2012- and this year, Beatrice means business!

[cupofteaplease]

Hi. Chances are if you've opened this thread, you may have followed us from here I thought the new year needed a new thread (also the old one was nearly full!)

The basics: Beatrice has central arthrogryposis and extensive cortical dysplasia. She is 16 weeks old and weighs 8lb 1oz. She is on continuous oxygen at 0.2 litres. She is fed Infatrini with Duocal mixed in via NG tube. She is undergoing ponsetti treatment for her talipes, she also has splints for her hands and is now in a pavlik harness full time for her shallow hip sockets. She is coping very well with all of her treatments. Her community children's nurse describes her as 'defying all the odds'.

The positives: If you have a 4 month old NT baby, the following will probably seem pretty poor progress, but for Beatrice who was stiff and non responsive at bith, she has made great gains. Bea seems very alert in this last week and is becoming more vocal too! She happily shouts at me when something isn't going her way- a vast improvement as she couldn't even cry when born. She moves her arms in all directions now and manages to lift her legs, even with the cast and harness. When she is under her play gym with lights, she moves her arms and legs in appreciation. She also mouths when she is hungry. Her breathing pattern seems much more regular since being on oxygen. She not only recognises my voice and turns to find me, but she can also distinguish other people talking and will move her head in different directions to find who is talking. We assume her eyesight is very poor, although we know she can see shadows and bright lights when it is dark. She adores the cinema and has been twice now!

The downers: Her weight gain is painfully slow- on average 2oz per week. She has fallen off the growth charts completely. She is still sick a couple of times a day. She is having a barium meal and swallow study on Monday to see if there is anything going on. Her sats are irregular and heartrate is very high, so weaning her off oxygen (which she started when she had pneumonia before Christmas) hasn't started yet.

Support: Beatrice was finally awarded DLA at the highest rate today, and we have been told to apply for a blue badge as parking in tight spaces with her oxygen is somewhat problematic . Next week, our lovely physiotherapist who has been administering the weekly plaster casts is going to start coming to our house to do some massage and play and encourage her arm movements even more. The referral to Helen House Hospice is still being processed. After Bea's casts have come off permanently (just 2 more to go!!) I plan on taking her swimming at the hydrotherapy pool in the special school where my SIL works as a SLT.

At the end of January we have a review with our 'lovely' paediatric consultant, Dr Scrooge. We havent managed to shake her off yet!

Thanks for following us here- I'll add some more pictures in a minute.

Loving thoughts to you all. This is a hard road you are travelling together but full of love.

Thinking of you. Hope the night was ok.

Cup, you have such a wonderful little girl, it's so difficult to compare to others as each child with SN has their own needs but Bea has progressed so much too - from the baby they said wouldn't survive, couldn't see or hear or respond, you have a baby that loves lights, turns her head to hear and clearly knows who mummy is for cuddles and happiness. She has defied doctors and proved she is a fighter and I am praying with all my strength she continues to do so.

I don't know enough about SN to comment but is there a chance that once she is stronger and is over the sickness that the equipment levels may decrease again? Is it definitely a sign of a deterioration or can it be associated with the current health issues?

And poor DD, this horrible virus is getting everyone, fingers crossed she recovers from her infections soon and gets back to full fitness. It's never going to be easy being away from them but they will understand (although that doesn't make it any easier for you).

Very glad the cast is off and Bea's foot is straight (another small victory for little Bea).

Sending all our love and lots of hugs to you all xx

Prayers, prayers and more prayers. x

Thank you so much for the prayers and kind words.

No, I don't think her condition is deteriorating. I think she continues to make little progressions every week. Tiny, tiny changed that others wouldn't notice, but I do.

I think the pneumonia before Christmas knocked her back and the o2 gives her a little boost to make her life a bit easier. It has stabilised her breathing pattern and increased her energy levels- and at 0.2 litres, it's only a whiff!

I think the milk was too rich for her, the neocate milk she is on now has stayed down and will be increased over a 7 day plan. When she grows, she may be considered stable enough to have an anaesthetic and therefore have a gastrostomy. Lots of children have them, it doesn't mean they are dying!

I was sad last night, today I am a bit cross with myself. Self pity won't help anyone. Why did I allow the nurse's comments to temporarily make me lose heart? Beatrice isn't giving up, and neither am I. Deterioration? My arse! I love you Beatrice and I'm not giving up on you until you say so.

Holding you all - the whole tea set - in the light (as Quakers say)

And in a garden of primroses in the spring sunshine !

< slightly crazy, but you get the idea ! >

You are amazing cupoftea- Totally awesome.

And so right !

( If you had the tiniest wibble, be kind to yourself. You are human (I think) -

though Mother goddess material in my book )

cup you are an amazing woman. Im in awe of your strength. So much love to you all.

There's my girl - I knew she'd emerge from underneath the cloud

Bea is a little fighter and so is her Mum!!
x

cup if its any comfort - the milk thing is very common in the children I work with. They have to be swapped around until they find something that suits. Thats why most of them are on all kinds of things that we adults only take if we have rotten heartburn.

Of course she is making progress! I have never yet met a child who hasnt.

Sending so much love and strength. Its horrible having to me away from the DCs even though you have no choice.

x

BTW I am v.cross with that nurse on your behalf (and the rest of MN I suspect).
What is the point of those sort of comments exactly

x

You are her best judge, all of her recent problems could be put down to one thing reflux which certainly isn't a sign of neurological deteriation. Even the pneumonia could be due to reflux being uncontrolled. Infatrini is very heavy and hard to digest and a lot of babies don't tolerate it. My ds is fed on partially digested hypoallergenic formula, through a pump at a slow rate, has omeprazole which is more effective than ranitidine. Pump feeds are not the beginning of the end either, with reflux they are quite often better with a slower rate which the pump does for them and you can build the speed up as she gets bigger and she may even go back to bolus feeds as she gets older.

My ds has a gastrostomy and it is just a more long term way of feeding this way that's all, I am not planning on him going anywhere!
Don't be mad at your self for taking things to heart, it is so hard not to. It is am emotional roller coaster and well meaning or not thought out comments can hurt so much as they hit our deepest fears.

Good to read the update cup. Hope the new feeds continue to prove successful. I am a bit surprised about the nurse's comment re the feed pump. DD started with a feed pump at age 13 and far from deteriorating she has gone from strength to strength (not to mention how much easier it has made our lives - we only wished we had gone down that road sooner, both for her sake and ours!)
Is it Lansoprazole they have put Bea on? DD is on that (switched from Omeprazole & Domperidone). DD used to vomit every day both when she was fed orally and since having the gastro - but she always continued to gain weight slowly (has always followed her own little growth curve, which is way below the official one!). The vomiting was more of an inconvenience - although she didn't vomit up every feed, but barely a day went by when she wasn't sick. She has been much better since being on Lansoprazole.

Good news about the Portage referral - that shows some people are thinking positively about Bea's future.

Sorry to hear one of your other DD's is feeling poorly - it is difficult enough being separated from them when they are well but so much harder when they are also poorly. Sounds like your Mum is doing a great job though it's good to have that support and helps take the pressure off just a little.

Hope things improve soon and that you get to the hospice after the weekend, where I'm sure things will be more relaxed and you will get some rest.

Thinking of you all constantly - keep posting updates.

Cup - perhaps you should have a sign up on Bea's bed whenever you need to take her in that says "If you can't say anything nice, then don't say anything at all" to stop these bloody miseryguts Cassandra-type medical staff from being so negative at you. So :( that they're still at it - perhaps she's a friend of Dr.Doom?
(have you heard from her this time around or has another paed been looking after Bea?)

You are great. I have my lime-scented candle burning right now, thinking of you all - it's a beautifully clean, sweet smell, I do recommend it! - and just wanted to tell you again how wonderfully well you are doing and how lucky Bea and your family are to have you. and for you, lovely lady!

I think I have added a couple of photos of Beatrice in the hospital sensory room yesterday- she loved it! Until I stroked her head with the fibre optic strands and she promptly fell asleep...

Have you got a nice silky soft scarf?
Bea may like it being drawn slowly over her body and face.
Cheap and easy sensory play

I'm with Thumbwitch! Make a sign saying "I'm doing well! Keep your negativity to yourselves!" I know nurses are doing the best they can, and from my experience, the Nhs seems to work on a worst case scenario basis, but that was truly insensitive!

Ooh, thanks for all the lovely pictures cup
Bea loves the lights doesn't she, and I like her smile
All your daughters have such beautiful big eyes !
And Bea looks so tiny and cute when she's being held by her big sisters x

Lovely pictures.

Cup - you know I'm praying for a miracle. I thought of this song today It's a bit of a back against the wall song for me - that even though we cannot see and we do not understand the ways of God we know that He is great and in our lives. Beatrice is His creation and He is with her and you always.

Thanks for the Thumbwitch, I shall save it until I get home!

tooloudhere I think you've hit the nail on the head. Your experience sounds exactly the same as Bea's. I just want her feeding and sickness under control, I don't think it's me giving up on her!

bigbluebus Do you really find pump feeding easier? I can see the benefits, obviously, but I'm a bit worried about the practicalities of it? We're out and about all day long, and at the moment I guess I'm just seeing it as yet another piece of equipment to lug around! Already yesterday I got myself caught up in all her tubes in the sensory room, tripped, trod on the tubes and pulled Bea's NG tube out- what a bloody klutz!

MrDeVere that's a great idea about using a scarf. We also have a gorgeous sensory room where I teach, so I might ask my head teacher if I could take Beatrice up there one lunchtime for a bit of a session!

I feel so much more positive this morning, and once again, MN has played a big part in that. Thanks for the support, lovely ladies. I wish I could meet you all one day and give you a big squeeze- thanks for keeping me sane (sort of...!).

Oh she looks entranced! I don't blame her, mind - I have one of these (without the fish) which I used to use in my therapy room - it was very relaxing!

Prayers from Moscow. Keep going Bea.

I am not bigbluebus but you will soon get used to the feeding pump. I have got in a tangle before yes but you find a method of how you will move her around without doing so. I used to tape the ng tube to his clothes, it gives and extra layer of movement before you pull on the tube itself and you know where the connecter is so its never digging in when laying down. It will be better for you as the vomiting will hopefully get better and she will gain again, so therefor making life easier for everyone! :)

Lovely photos - you can see even in the photo how entranced she is with the lights/colours/whatever

The sensory room where you teach would be a great idea - I'm sure they'd love you to use it with Bea - how could they not?!

Do you have any fairy lights for her hospital cot/bed?

You will get used to the feeding paraphanalia cup You should know by now you are capable of just about anything

If you get a chance and you dont know about it already - try a quick google on the Medical V the Social model of disability.

It will explain an awful lot about the things that are said to you in hospital.

Do they sell hand held fans in the hospital shop? Little Bea might like the feel of that around her body and face as a bit of sensory play.

Those strings of beads you decorate the christmas tree too - you can scrunch them and put them up and down gently on her arms and legs.

x