Mumsnet Talk

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.

oh, it's lovely to hear all that cupoftea. well done Beatrice

I don't have any experience with any of the difficulties Beatrice is facing, but it sounds like she is making good progress to me - what a determined little girl (I knew she would be, she shares a name with my dd2, who is very <ahem> determined too )

re: weight gain - it may be slow, but it is still a gain! dd2 (full term, NT) fell off the charts too - but the one positive thing was that she never lost weight, just gained it extremely slowly. she is still tiny now (nearly 5, and the size of a 3 year old) - not the same, I know, but really, gain is Good.

Hi cupoftea. Glad things are still going OK, well done on the DLA, horrible, horrible form. (((hugs))) for Bea.

Yay for Bea! More photos please

New photos have been added.

Happy New Year, thanks for the update. If it means so much to us that she can now move her limbs, make sounds appropriately and knows you from other members of the family, how much more it must mean to you!

Your new pictures are beautiful Bea is a superstar. I'm glad about the DLA too, something less to think about. I hope the hospice referral is done quickly too. Will be thinking of you all on Monday I hope Bea enjoys the hydro pool, it's one of Bella's favourite places.

Georgeous! Love the one with your other DD (?) in the Peppa Pig hat thing too

gorgeous baby and gorgeous pics

She has done so well and defied everyone and that is wonderful. I am sure she has this strength from being with such a loving family. Well done Beatrice! xxx

Love the new photos. Glad Bea is doing well. DD never made it to the growth chart - she was way below the line and still is (at 17) - but has always followed her own growth curve which helped to prove to the professionals that she was doing what was right for her!
Great that Bea will have opportunity to use a hydro pool - this is one of DD's favourite activities - she is so relaxed in the warm water.
Good luck with the Blue Badge application - hopefully won't be a problem because of the oxygen. Also hope the Helen House referral goes through soon - you will find them so helpful and caring and I'm sure you could do with a bit of a rest! I remember when DD first went to our local hospice at the age of 2 - we all stayed as a family (DS was 6mths old at the time - so I had my hands full like you) but it was great to spend some time just looking after DS whilst we knew DD was having her daily routine attended to by the staff and with the added bonus that all our meals were made for us too!!
Good luck with the PAed appt - shame its with the same consultant - but maybe she'll mellow as she realises what Bea is capable of coping with.

Lovely, lovely pictures! Bea is doing so, so well. to a positive 2012.

Love your "little pudding"!! So glad to hear the progress Bea is making. Her eyes make her look like she is so thoughtful and knowing .

And how are you doing yourself?

That little girl is simply amazing

Oh Cup - she is such a little darling!! She might only be growing slowly, but she's growing noticeably to those of us who aren't lucky enough to see her every day!!

It will be lovely for her (& you) to get the casts & brace off.

FAB news about the Physio & the DLA!!

How are you doing? Are you getting 5 mintues to yourself?? How's your finger?

No wonder you are so proud of your gorgeous little princess Beatrice, she is simply adorable. What a gorgeous family all 3 girls are sooo pretty. Little Beatrice is amazing, so happy for all of you. Hope 2012 brings you all lots of luck

I love the pictures and your brilliant update. She sounds like she's developing really well - it's lovely that she's so attached to you and turning to your voice.

hello, been following for a while now and loving the new thread.
Can I also say, if you want advice off the thread on something particular, to just post on SN board with a different title, as while I read this thread now and again for updates, i might miss a question as will many of the SN parents too.

Oh I am so happy to hear that Bea is doing so well! Go Bea! X

Oh I am so happy to hear that Bea is doing so well! Go Bea! X

What a lovely update/summary

Well done on the DLA, about time they gave it to you!

Loving the new photos, Bea is just the cutest, her eyes are massive.

Glad things are going so well. So pleased you got the DLA.
Beatrice looks so cute in the furry coat in the 1st photo. She's the definition of adorable.

Love the new title. Have followed your posts since the start and am always pleased to hear when there is good news. Sounds like an excellent start to the new year.

beautiful! X

She's amazing, cupoftea. Aw! I want to give her (and you) a massive cuddle. Well done all of you!

Love the update and especially that she is speaking up. You and she have achieved so much in such a short space of time. Team Bea 2012! x