I'm back!
Right, well I've finally got my laptop in front of me, so as I promised myself, I'm going to write about the meeting with the neurologist. He was a lovely, lovely man. Very thorough and put us at ease from the beginning. Dr Doom and our CNN were present in the meeting too. Basically, he said that looking at Beatrice's MRI, her brain in underdeveloped to a catastrophic degree. He confirmed she has lissencephaly and central arthrogryposis, and suspects Muscle-eye-brain disease, although all of her muscle blood tests came back clear (confused). He said he is 99.9% certain that it is a genetic disorder, and that the chances of a baby like Beatrice being born are 1:1 000 000 (like we didn't already know she is one in a million 
), but that now, due to genetics, the chances of dh and I having another baby with lissencephaly would be 1:4. He said it is so rare for 2 people to carry the gene and for it tpo be passed on that it was 'catastrophically bad luck'. At that point the tears came, for the first time in months. I tried to explain, with a tennis ball lodged in my throat, that to me, Beatrice is the best gift I could have been given. That I can't bring myself to see her life as 'bad luck'. He must have thought I was loopy, but he said to enjoy her every day and stay positive, but that she is a very vulnerable little girl.
The good thing is that on examining her, he was surprised at how much she can move about, he said that was positive. Also, that she had survived the winter as her chest is so vulnerable to infections, so fighting off pneumonia and bronchilitus was pretty good going!!
Monday, we went to meet a surgeon at Oxford Children's Hospital (Can I just say here, what a lovely place?! All you Oxford dwellers are very lucky folk!) He was very positive about Beatrice being an ideal candidate for a jejunostomy and he was proud that he is one of very few surgeons who will perform this procedure, apparently. But, she would need a GA and is therefore too small and vulnerable so we need to feed her up (tell me something new...) and bring her back in 3 months.
But, more good news... Today she weighs 8lb 14oz, whoop! The dietician and consultant have agreed for her to be fed Infatrini down her NJ tube, so I'm hoping for a good gain from now on.
Our stay at the hospice was wonderful and relaxing. We took Bea shopping into Oxford and went to an indoor play area where we met a fellow MNer (waves to GalaxyAddict and her pretty dd!). I also stayed at the flat every night as I felt more relaxed this time and trusted the staff more, especially as Bea has her sats monitor overnight.
But, as is the way my life appears to go...as we were leaving the hospice, I received a call from my younger brother. He was in tears and told me that he was at the hospital and they have diagnosed him with lymphoma cancer. 
He has had a lump on his neck for about 3 weeks and it has grown very quickly and made him feel quite poorly, so I am glad they have found what it is, but it was very shocking to hear the C word. My brother is only 24 and has already dealt with a lot in his life, it's not fair (not that cancer ever is).
So, we left the hospice and went straight to see him. By the time we got there he was smiling and calm so I greeted him with, 'I'm not sure what I'm most sad about, the fact that you have cancer, or that you're driving that heap of junk!' (his new car is terrible!) We had a good laugh and chat and he seems quite positive about it now. He needs a scan to check it hasn't spread as he has a terrible cough, and he's having his biopsy on Monday, so if any of you have any extra prayers on top of those for Beatrice, I'd be very grateful!
This evening, I am feeling pretty fed up. I am desperately trying to organise childcare so I can return to work 2 days a week. Who would have known that going to work is a luxury if you have a disabled child? 
Apparently, there is noone willing to look after a disabled baby with oxygen and a feeding tube and pump. When she is 3 and statemented, maybe we'll find someone. Whoop de woo, what am I meant to do until then? I'm not asking for respite to sleep, I'm asking for childcare, which I will pay for, so that I can go to work. Mission bloody impossible.