Hello. Thought I'd give everyone an update as havent since August! Girls are doing well at the moment but I know this can change at any minute. E has gained some weight & finally has reached over 20lb!! I was so pleased, she hasn't been 20lbs since just after her 1st birthday so was a very massive milestone :) She now finally has her Mickey Button in to, that was done about 2 weeks ago now & it's going good. She doesn't have much of an appetite again and hardly eats anything but that also changes from time to time. She now is fully walking to, which I am so proud to see. It brings tears to my eyes, I know that probably sounds strange but with all the struggles she has been through with the rickets and what not it is truly amazing!
P hasn't really changed, she has gained some weight but really slowly and the Dr's aren't too happy with it. They have said there is a 99% she will also have the operation for the button like E did but not until she gets a bit bigger & gains more weight. She still has her nasal tube in, when she isn't pulling it out! She still gets dehydrated alot to and she is a very clingy baby lol.
P is on ranitidine & the Cystagon still and nothing else at the moment. E is on 8 meds still to, inc the eye drops. They will both be due there 6 monthly eye check ups soon, really hope P doesn't get the crystals early like E as she'll have to eye drops to!
Hopefully things will keep going well now, got all our fingers crossed :)