Lockdown 3; Day 60

 Still been a tough few days. The first part of our appeal has gone to Lenham and has been received as the head teachers P.A. e-mailed to say they have got it. I have also contacted Godinton and asked for a report of any extra assitance and support which has been provided for Mikey. Miss Talbot will also outline why a smaller school is more suited for him. Part of me wishes he could stay there until he is 18. Plus I would also be keeping him close at hand...he is still up for wandering off on his own - usually ending up at the play park which is technically still closed unless you don't have a garden or open space (which he does!!)

Unfortunately his tracking watch works fine as a phone - but can't track him at all! A total waste as it can't even find him when he is at home! At least I can put a tracker on his phone when he changes school!!

I spent most of yesterday waiting for a GP to call me. I was eventually called at around 4pm by a practice nurse. She was lovely but got more worried as I talked and she read my notes. Prescribing anything for me was obviously beyond her expertise and she had to get a GP to call me back. Thankfully I was called quickly and his immediate reaction was to take yet more blood. I was not keen on that as I've really not slept much this week and I'm really not getting used to being in pain. He is also worrying about me becoming anaemic. I pointed out I'm already on Epo as I am due to my Kidney failure. He sill wants to extract blood from me - but I really wasn't in the mood to go through the blood form vs your nurses have NEVER got blood out off me argument! Instead I was given another dose of fosfomycin. Apparently they are unable to prescribe any other antibiotic for me now. Andy picked it up for me this morning and I have taken it. I'll do another dip test tomorrow and hopefully the blood will have stopped. (he also got confused that I can dip test at home)

A friend has suggested that I contact my consultant...I think that e-mail will go at sometime this weekend. Maybe he can find out when Urology intend to do something about these bloody stones as the pain from them appears to switch sides fairly frequently.



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