Things are going ok.

Well E was at hospital again recently for her check up and her levels to be checked. She has grown a little again & gained a bit more weight, her Dr is really pleased with her lately and so are we. She's coming along in leaps & bounds at times and its fab!
They have upped her Potassium now to 4mls instead of 3mls. Her phosphate has gone from tablets to 2 thankfully and her drops for her bones have increased from 4 to 8! She is getting loads stronger on her legs and will even walk now if you have hold of just one of her hands, she still cant stand for too long on her own and only a few mins if someone is holding on bless her. She still drinks loads of water during the day and can now say Ta really well. She is going through terrible 2's though I'm sure! The tantrums & screaming are amazing.
She loves her baby sister who is now 19 days old :) Still no results on whether she has Cystinosis but they did say it could take up to 6-8 weeks. Her dad thinks she does have it but I'm not sure, I don't even like to think about it and will cry either way.
E is back at hosp on the 22nd for more bloods just to check the change of dosages is working and if anything else needs changing. Hopefully not but we never know until the results are in.
Picture is E having her meds, thanks to Daddy!