Girls had clinic again recently. E has gained yet another kilo in just 6 weeks, so proud of her. Dr/Dietitian suggested cutting down on her overnight feeds now to see if she gets more interest in food, doubt it will happen but we shall see. She was on 800mls overnight but slowly cutting it down, now on 750mls and soon will change it to 700mls. All her levels where pretty good, KCL has gone up an extra ml but her Cystine level was excellent, below 1 which is the lowest it has ever been! She still has quite a bloated stomach but they've investigated it enough and just think its full of air. She is 3 on Oct 22nd :D Cant believe how fast the time has gone.
PM is also doing good, her Cystine level was also below 1 which is fantastic. She's started on a new medicine called Carnitor, she isnt really growing much so they are seeing if that can help and she's been referred to Growth Clinic, she might be starting Growth Hormones a lot sooner than we all expected. She is currently 8kg and not much change in her height.
Both girls had eye clinic too a few weeks ago, E's crystals haven't gotten worse but they ha vent really gotten much better where as PM's have cleared up a little which is also excellent news! Back in 6mths for eye review and got a 6 week break again from clinic which is always a good sign.
We where all due Flu Jabs last week but we've all been full of cold so they had to be cancelled, hopefully get booked in next week for them. Last thing I want is girls in hospital again, last year they had a viral infection which put both of them into hospital at the same time. They got to share a room together (quarantine) for about a week haha. Drs recommend they have it and I got flu last year when they where poorly and don't want it again, it was awful!
We all had a fab time in Wales for our holiday, girls really enjoyed going to new places everyday and as usual E loved the beach.
E's speech is getting loads better, she can count to 20 now and loves to sing. She's a right little Drama Queen. No words from PM yet but she's trying to walk and she loves eating. She's on her new milk now and tolerated the change really well, she gets almost 700mls a night.
We have another appt in November for E to see the surgeon that did her Fundo/G tube op, think he's interested in her bloated belly and wants a look. Well that's about it for now!
Just glad to post some Good News.
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