Jasmine is two years old today.
She may have had a tough start, but doesn’t care at all about that, and is a happy, smart and beautiful girl who didn’t know what all the fuss was about today and just wanted to play with the syringes that are so abundant in hospital.
Jasmine got admitted on Sunday afternoon with a temperature of 40.5 and has been in ever since. So, it was lovely to spend her birthday with the fantastic people who have taken such great care of her since birth. The staff on the ward very kindly surprised her with gifts and balloons and a big chocolate cake and then they discharged her so that she is tucked up in her own bed tonight.
We have spent a lot of time on the ward this last fortnight, as all last week she was in with Rotavirus and came home on Friday afternoon only to go back in, 36 hours later, on Sunday. She has been tested and treated for everything, so we are hoping she is on the mend, and we can stay at home a bit longer.
Each time she is ill this side of transplant, there is always the fear of kidney rejection, but that aside, life is miles better without dialysis, though it isn’t yet ‘normal’. Jasmine is on a million meds and a large amount of fluid. Viruses and bugs that ordinary children can deal with, totally floor Jasmine. She needs IV fluids and sometimes antibiotics to recover so that kidney is protected. And she needs her immunosuppressants every 12 hours. But life is better, and will continue to get better as she gets bigger and stronger and learns to eat.
Jasmine has grown about four centimetres since transplant and is so much more energetic with her dad’s kidney. She is a busy little person always experimenting with things around and figuring out how things work, especially medical equipment. She likes to take things apart and put them back together. She laughs a lot and likes to count and babble. She has come a long way since October when I took this picture to show Neil, half an hour after she came out of theatre. She was in intensive care surrounded by the amazing staff who worked really hard to keep her comfortable and sedated whilst her little body time got used to this new big kidney. And one of our lovely nurses from our usual ward talked to me all the time about what they were doing and why. I was so afraid and so grateful that she was there explaining and making it seem normal.
Transplant is a life-changing experience in many ways. Our family life is very different and also the way I see things is different now. Though, I was talking to one of the mothers whose child is a teenager and she told me that they don’t tell people that they got transplanted, as they just want to be normal. I understand what she means as sometimes I feel like I am in the middle of a tutorial on dialysis and kidney transplantation. Transplant is an amazing thing so people are naturally curious and want to know all about it. So with that in mind, it is time for us to be normal too, so we have decided to end this blog. We don’t want to write anything that will embarrass Jasmine and we don’t want her to be known as the transplant girl. We want her to be as normal as she can be, in her own extraordinary way.
I have loved writing here. It was something I did to help me through the tough times and to mark the good days, and at the very start when I couldn’t speak on the telephone for the tears that choked me, this blog was a great way to let everyone know what was going on. But we don’t want to put everything about Jasmine online. We want her to decide if and what she shares when she is older.
So thank you for all the kind comments and messages over the past two years, they have been much appreciated and read and re-read. And finally, today and everyday we thank and give thanks for the nurses, doctors and surgeons who have tirelessly and brilliantly taken care of Jasmine and enabled her to reach this day. We are eternally grateful to them.
Just a note to say I’ve followed your blog since our daughter was born with kidney failure in October 08- she has stage 4 ckd and will need a transplant probably before starting school. Your blog was a real help when Merle was in intensive care and through her ops. So all the best and good luck to you all.
What an emotional way to end. I am so pleased you wrote as much as you did and am very sad to see it all finish. I completely understand and hope you all continue to grow as a family.
We had a hospital appointment last week and mentioned to Lee’s consultant about Jasmine and she smiled, and said how lovely that Neil was able to help Jasmine.
You have been wonderful keeping everyone in touch with the blog.
Love, Kisses and Hugs to you all.
Barbara xxx
As a friend of Neil’s parents, i’ve been following the ups and downs of Jasmine’s treatment since she was born, without having to bother you for information. Although I shall be sorry not to read of her progress any more, I quite understand your reasons for discontinuing it.
It just remains for me to wish all of you all the best in the future.
Jean
A belated HAPPY BIRTHDAY JASMINE…gorgeous photos of you all…I always read what you have written and shall miss keeping up with you all but so glad everything is on the up for you now…two lovely daughters to enjoy and have fun with…love to you all…Diane…xxx
We had so many lovely comments on this blog entry but sadly I accidently deleted some of them when I was clearing out the never ending spam. Sorry to anyone who commented and got deleted. Your comments made all the difference to us. They may no longer be here on this blog but your lovely support and words remain in our hearts.
Ruth x
You are an amazing and strong family. I am currenly writing a story for a renal journal about a young boy with renal disease and the journey of he and his family. I feel really touched by their story and yours. I very much respect both your decision to write this blog and your decision to end it. I hope you’re all still getting on well. Best wishes x