Jasmine sharing her toys

Jasmine likes to share things with us. She will lick whatever she is playing with then give it to you to put in your mouth. Sometimes she pushes it straight into your mouth. And sometimes if you are having a snooze she will bash you with whatever she is playing, so that you can wake up and share it. Ahh!

Her other new skill is that she can clap and she does so all the time and she is brilliant. She started doing it the other day. Her Great Auntie Carol bought her a nursery rhyme book which sings so Jasmine likes to clap along to the singing and then gets very upset if you take the book off her to feed her. So it comes everywhere with us. She likes you to sing along with the book whilst she claps but she turns the pages so quickly that sometimes you are singing Twinkle Twinkle Old Mac-Rockabye Hickory Dickory Dock. Singing all the nursery rhymes together is a talent I didn’t know I had but Jasmine is very impressed.

This week has been quite hectic again. We went to clinics on Monday and Jasmine is growing but slower than before, but apparently that is quite common and nothing to worry about as she is getting all the right levels of protein and the rest of it. She is getting her vitamin D levels monitored too now, which is very good as she is taking part in some new research. They have learnt down at GOSH that vitamin D levels which are too high or too low can affect the artery blood vessels and make them brittle, which can eventually lead to heart problems. Her blood pressure was running a bit higher than is completely comfortable so the consultant reduced her fluids and the dietician gave us a new recipe to make her milk a bit more concentrated.

After GOSH, we went to see an acupressurist to see if she could help us reduce Jasmine’s vomiting. The idea behind the bit of acupressure we are now performing on Jasmine is that we massage her digestive system so that it works quicker and her milk moves quicker through her so she has less time to vomit. This is how the drug domperidone works – it stimulates the digestion to push food through the gut – but unfortunately it had unpleasant side-effects on Jasmine so we had to stop giving her it. So, we are giving acupressure a go. It has been two days so far and there has been a bit less vomiting (saying that though I have just heard Jasmine vomit in the other room where Neil is keeping an eye on her). We have to be patient and try for a good while, as when we began the acupressure on Monday her dialysis program and her diet got changed at the same time, so we need to wait a few days for everything to settle down and then we will see properly what is going on with the acupressure and if any changes need to be made.

Everytime she vomits though I get really disappointed, which is silly, since she can vomit up to 20 times a day and that is not going to disappear overnight. Neil said acupressure is not sorcery and we have to work at it. He is very wise!

The other amazing thing is Jasmine has managed to drink all of her milk for the last 10 weeks without her NG tube. This is just incredible. Although, the other day she did struggle as another tooth was coming through and Neil got a bit down thinking that we might have to put the tube down. But, I was (unusually for me) feeling positive and said that if it did come to that then at least her nose has had a rest for 10 weeks and we would get a bit of a break on an evening – as we always wake her up to give her a nighttime feed, otherwise we struggle to meet her full quota, which she doesn’t like at all and kicks up a big fuss.

Over the weekend Neil and I met some doulas so that if I go into labour during the night when Jasmine is on dialysis, I have someone to take me to hospital and stay with me through the birth, knowing that Neil is with Jasmine and we don’t have to worry about her and our doula is with me so Neil doesn’t have to worry about me. We have found a lovely lady so I am feeling all excited now. It was a bit tough talking to doulas at first as their first question is understandably: “Why do you need a doula?” So that was hard, as it meant talking about Jasmine’s birth and all that we went through.

Feeling settled in my mind has meant that I have finally gotten off the settee and onto the floor to do my yoga. And I am feeling better already. I found that I couldn’t do the pregnancy yoga that I did before as it brought back all of last year, but now I am raring to go and get birth fit. Hurrah! Neil is very encouraging and Jasmine sits on the settee throwing toys off it and sometimes onto me – helping in her own way.

Today we are off to the GP for Jasmine’s latest round of innoculations. She has two today and then she needs two more in the future and then she is ready, vaccination-wise, for transplant. After that she won’t be able to get any more innoculations as she will be immuno-suppressed, so we have to get them all in now.

On Thursday we are off to another hospital with Neil to begin talking about transplants and living donors and to investigate Neil’s potential as Jasmine’s living donor, which is really scary but could be really good as living donor organs have much better results.

I keep hearing lots of people at the moment moaning about their lack of achievements in life (job, career, money, whatever). And I am a bit fed of up to be honest (pregnancy hormones are responsible for a lot). So today, my advice to anyone who feels like they haven’t done much useful with their life is: give a kidney away. One way to do it is called non-directed altruistic donation where you don’t know the person who receives your kidney, but you save a life. What greater achievement is there?

I know a lovely lady who gave her son her spare kidney and this is what she has to say on the subject: She is an inspiration to us all.

One Response to “Sharing”

  1. Jill Winslow says:

    I am so EXCITED to hear that she is drinking all of that on her ow, what a huge accomplishment. Sharing spit is such a sign of love, too cute (insrt Jasmine clap here). Also glad that you have things set up for the next little miracles birth! I am in the process of thinking about getting ready, but then get to overwhelmed and nap (: Take care of you all, stay healthy and well. I can’t believe she is seeing an acupuncturint, how very zen and posh…you’ll have to post a photo. Hugs to you, Jill

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