Jasmine keeps waking up early and wanting extra milk, which is just amazing. She also rolls over and over in the cot and either dangles her legs through the bars, or kicks all her covers off so that she can find the long patient line, wrap it around her legs and bring it to her mouth to chew on it.
We have been looking for sleeping bags which fasten down the middle so we can put the catheter out of the front, as she has outgrown her other ones. She has two which have a zip down the right-hand side which used to be fine before she turned into action baby. She had one which had a zip down the left-hand side but we had to cut it open down the right-hand side and put velcro fasteners on it. And then after all that effort, she has outgrown it. And each time we washed it the fasteners would fall off and the edges would fray and bits of the stuffing would fall out and I would ask out loud why they don’t design baby sleeping bags for babies on dialysis. And Neil would say that there isn’t a market for it.
As she gets bigger, it gets harder to find the right sleeping equipment, as she can’t wear pyjamas, well she could but we would have to cut them off her, if she vomited or pooed on them in the night. I don’t fancy waving a pair of scissors near her or the patient line, especially when tired. And if you don’t have her in a baby-gro she can grasp the patient line in her toes and bring it to her mouth that way and she can also pull her nappy off and tug away at the catheter and dressing. And she can’t wear those all in ones without buttons as they are impossible to get off in the night without waking her up. Mmm, just had a thought, I might just start pinning her in – but then I am worried about safety pins. No, I know, I might sew some press-studs on these sleeping bags. Now there is an idea.
Today, she ate some carrots and potatoes, then later on a chocolate finger and then after that a couple of spoonfuls of ice-cream, which was nice on her teeth, as she is teething again. This is the most she has eaten in months and months, and it was fantastic. She has managed without her NG now for 14 weeks and on some days behaves like she is hungry and cries for milk. At least we think she does. With new behaviour, it takes a while to establish a pattern, and truly believe that is why she is crying.
This afternoon she was full of energy and keeps trying to take her weight on her feet when you hold her, so we put her in the babywalker and she can now push herself backwards across the room. Our carpet hampers her progress, so this is no mean feat. She screws up her face and pushes with all her might and then looks amazed that she has moved herself. We put her on the kitchen tiles and she was spinning herself round and round in the walker quite fast and was so thrilled that she was squealing to herself for at least half an hour and clapping her hands at her progress and admiring her reflection in the glass oven door.
She woke me up at 5.30am this morning and was sick quite a lot as she has had yet another cold. All horrible mucus. So, this afternoon we were both having a nap. She woke up first and as Neil was changing her nappy, I woke up and as I sat up, she waved at me and said something that Neil and I both agreed sounded remarkably like ‘Hi Mama’. Later on she was shouting ‘Baba, baba, baba’ to herself for a long stretch of time and waving to people out of the window.
Yesterday, we took the tube, originally with the plan of going to the end of the line. Jasmine kept sticking her feet out of the buggy and pushing the buggy backwards away from the glass partition between where I was sitting and where the buggy was and away down the tube even with the buggy breaks on. Neil jumped up and grabbed the buggy before she sailed down to the other end of the carriage.
You can tell we don’t go out much. We got out of the tube at Southgate and were amazed. The station is built in the Art Deco style and is funky and the escalators have the original lighting. Neil and I were ‘oohing’ and ‘ahhing’ for ages and wandering about the station. And that was before we went into the big world outside of the tube and out to lunch. Later, we came across a massive Asda which sold everything – my goodness, we were in there for hours, and we only bought a handful of things. It is just that there are no supermarkets near us, so it was a novelty. By the time we get to transplant we are going to be so weird, living in our small world of dialysis as we do.
so glad that she is eating! How exciting 14 weeks, that is amazing…building up muscles so she can start her walking, what a little genius! Try the two piece jammies, with the pants and shirt, then you can take them off without cutting them if there is any vomit and you don’t have to cut them so baby number two can wear her big sissys jams! Hope all continues to go well, beautiful picture, glad that you are getting out and about! Take Care! Hugs, Jill