I stayed at home with Baby P while Darren took her, her appt was at 8:45 and we wouldn't have all been ready before 8am when his dad came to take her, she didn't even get chance to have any breakfast until she got home lol.
I thought they would have been ages as last time we where at the hospital for 3 hrs, they where so understaffed and missing equipment it was a joke! But they returned home just after half 9 :)
E still has the crystals in her eyes, they haven't got worse but it hasn't improved either unfortunately. The optician reminded us to keep up with her drops because if we don't she will go blind & he said at this age if she went blind they wouldn't be able to do anything about it :( We manage the drops at least once a day even though they should be done every few hrs, unfortunately it's still a bit hectic here with a 5 week old baby to look after to and it takes the 2 of us to do E's drops as she doesn't like them and fights it. Now the baby is sleeping more & more settled on her new milk we should be able to do them when they are needed.
The last I thing I want is my beautiful Princess going blind! She's been through far too much already.
Still no results on P yet either... E's due back at hospital at the end of July so if we haven't had any by then we'll ask her Doctor to do a test on P instead. I just hate waiting. I lie in bed every night worrying about it!
I'm meeting some fab people through Facebook though who also have been affected by Cystinosis and I find them a big help. They know EXACTLY what I'm going through and it's comforting :) I hope to meet some of them at some point, esp the ones with children so E can meet all the other special little boys & girls like her.
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