Yesterday we went to GOSH clinic and they seemed pleased with her progress and they said that Jasmine was looking well. So Neil and I looked through our old photos and we can see a big difference too, she does look a lot bigger than when she was in the hospital. Jasmine had her bloods taken and the doctor checked her for hernias (we asked as I was just curious. I know they are common and Jasmine has had them before, but I wouldn’t know how to identify one so I thought I would just get her the once over).
We did several rounds of ‘Jasmine not taking her milk’, as I don’t want to give up on this yet. They were very nice and patient with me and the doctor gently explained that it was unusual for Jasmine to have fed orally for so long and now that she seems to have given up feeding she resembles a baby in renal failure. The most important thing is to get her food into her so that she can grow well. She is way down at the very bottom of the growth charts so she has some catching up to do.
The doctor added that in her experience, renal failure babies all like strong tasting savoury foods and hate sweet things and once she gets older Jasmine will love marmite fingers. I love marmite fingers too so got a bit excited at this point. It is true though, Jasmine loves her Ranitidine which is a horrible mouth-numbing antacid medicine which tastes just like mouthwash. The doctor also said that Jasmine won’t have any problems eating in later life since she has fed so well for this long. And again, it is unusual that she is enjoying some solids.
I am disappointed but I will go on giving her food and keep trying her on milk. Today so far, she hasn’t wanted any milk at all, so I have given her 300mls by tube and she has another 200mls to go. But she has eaten Farley’s rusk mixed in water and also she has had some spinach, parsnip and basil puree. She enjoyed both and smacked her little chops. It is just milk and the sweetness she doesn’t want, as I tried her on a banana the other day and she hated it. So I am currently pondering how best to mix her milk with things which are savoury in order to encourage her to want to drink milk. These Farley’s rusks might help as I got the reduced sugar ones and they weren’t too sweet at all. Neil and I had some and they are very good with a cup of tea.
It has been so hot these last few days that Jasmine has been spending most of the last few days just wearing her pants. We keep taking her dress off to cool her down. We find these little pants really useful and have lots of pairs. She wears them over her nappy so that we can tuck in PD catheter into them. Currently she is lying in her cot just in her pants, sound asleep clutching her Mr Tag-a-long.
After the clinic yesterday we went to the pub for beer and chips, which was fantastic, and then we went to the Hadrian exhibition at the British Museum, which wasn’t. It was so hot that I carried Jasmine around the exhibition in my arms. She was unimpressed about the whole thing, but didn’t mind people making a fuss of her – as per usual.
Jasmine doesn’t need another check up for three weeks which is a first. Neil said that he was a bit alarmed about not going back for three weeks. I don’t feel the same way, which is a bit weird, as normally I worry about everything but knowing that GOSH are just at the end of the telephone is very comforting. They are, as always, a brilliant bunch of people, and it makes me cry to think about how much they do for Jasmine.