Neil: Feeding schedule

Jasmine had clinics today. We haven’t been to the hospital for two weeks over Christmas and the New Year, which has been brilliant. There has been lots and lots of snow lately. But as we only had a short distance to travel, we had no problems getting to the hospital. We were very impressed with ourselves, until we discovered that half the hospital staff hadn’t been able to get into work because of the snow. There was no phlebotomist, and hardly any patients either!

We saw the transplant surgeon, and he cut the stitches on the stent and pulled it out. It looks good this time, and Jasmine still has wet nappies, so hopefully there is no reflux into the kidney this time, and Jasmine can avoid a surgery. Once the real work was done the surgeon gave us a training session on the different instruments in Jasmine’s toy medical kit. Jasmine has to go back for more bloods and an ultrasound next week, so hopefully that will all be clear.

The speech and language specialist tracked us down specially, which was very kind of her. Jasmine is still only eating a tiny amount, vegetable samosas, Ritz crackers, or panini. She bites with her incisors, and moves food about on her tongue, but she doesn’t use her molars, and hardly ever swallows anything. The specialist is going to refer Jasmine to the eating disorder team at Great Ormond Street. Hopefully, they will have some ideas on how to help Jasmine to learn to eat. Before transplant she vomited every time she ate anything, which has no doubt rather put her off eating. Since transplant she has only vomited when we put too many medicines down her NG tube, or overfeed her.

Jasmine has lost some weight due to her diet. She can move about more easily now, and is trying to pull herself up on things. She wants to be in with everything at the moment, doing the washing up, brushing her teeth, getting in the bath. Jasmine shuffled up to the bath one evening and started pointing and shouting, when we had decided just to wash the girls instead of putting them into the bath. So, I said, “You don’t have to go in the bath everyday, Jasmine”, and she shouted, “Everyday!” and carried on pointing at the bath and her towel. She has a lovely In the Night Garden towel which she won’t let go of, even when she is dry.

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