''Mummy, you can look for badgers......but you can't eat 'em''
Whilst washed her toes in the bath ''Mummy, Santa Claus got me these toes at Christmas time last year. Santa is good to me, I'm a lucky duck''
Whilst watching me draw a fish at her demand ''Mummy, Well done, I'm so proud of you''
We've had a hospital fueled couple of weeks. We went to Yorkhill for allergy clinic 2 weeks ago. We were hoping for some re testing and maybe a tomato 'challenge' but her consultant is so happy she has had a stable 6 months he wanted to be cautious and wait another 6 months to give her immune system more time to relax. We do agree with him but it's hard not to get impatient to reintroduce some variety back in her diet. She was a star at the visit although she seemed to think she would get her own room and be staying, we had to drag her out in the end as she was determined to go up in the lift to say hi to all the nurses.....
We had the wonderful Johan and his mum and dad to stay for an overnight, which Erin loved and cemented her love for him. It was great to catch up with them and see how well our fellow transplant friends are getting on.
The next week we went to Leeds for her delayed annual review. We were very pleased to be able to meet up with our friends and their little girl, India who was there for her 1st year post transplant MOT, it certainly helps distract from the bad side of these visits when you are with friendly faces. India seems to have made it on to Erin best friends list, her name is now repeated regularly in stories and is to be included in any she asks you to make up for her. The list is fairly short and also includes Kate, Phoebe and Prince Johan (as she calls him!).
First up was an ultrasound scan, Erin sat like a super star and the consultant radiologist said she was happy with everything she saw. This is the main reason we go to Leeds for review, their scanning team are so highly skilled, it was reassuring. We haven't had the full report yet but she seemed happy so we are happy with that!
Second up, off to clinic for a consult, bloods and the dreaded GFR test. Consult went well, we chatted about her improved development since the summer, the nightmares and sleep issues and her food allergies. There is scope to reduce her Tac dose to see if this can help the sleep, nightmare and allergies as she was currently sitting at a blood level of just over 5 (on dose of 1.5mg twice a day), we have reduced her dose to let the number drop a little but it must stay higher the 3 to prevent rejection (now on 1.5mg am and 1mg pm). This means more frequent bloods for a bit to keep an eye on it but we felt it was worth a go.
The bloods went OK, they used 'the vein' to get what looked like 15-20 different samples and even managed to inject the GFR dye in. We had to come back 2 hours later for bloods but no more could be squeezed from our little stone so the GFR was once again abandoned........Slightly depressing but also incredibly upsetting for all involved.
She was distraught. She is still talking about it 10 days later. To be honest they only attempted twice (I've started a 3 strikes and we stop policy) but just the fact they were looking for veins was enough for her and I called it a day with them fairly quickly.
I was highly dubious it would work with Erin's still dreadful plumbing, I've told them we won't be attempting it again next year or indeed ever unless her veins have dramatically improved or there is significant concern about her kidney function to warrant it. We will get the Cystatin C test done from a blood sample in Yorkhill when we are next in for bloods, this is a less invasive but less informative test.
As for the rest of the results we've not yet heard and I've kind of put off chasing the results for fear we'll be called in for repeat bloods sooner that I would like! They tend to hunt us down when anything is up these days, I'm quite happy to hide out until they shout loudly.
We came home via our Angels of the North, Lesley-Anne and Phoebe, we only stopped in for a few hours but it was fab to see the girls and the look on Phoebe's face when we walked in was priceless. We then went to the caravan in Berwick for a couple of nights before I had to come home for work. Erin had a ball in the swimming pool and on the beach, roll on the summer for more outdoor fun!
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