Clever Girl!!!
Kaitlyn was taking about two thirds from her bottle and the rest down the tube so on 6th October we were able to take the tube out and give her a chance to cope without it. She gradually built up her daily amount - unfortunately got a bad dose of acid reflux which didnt help but after her meds were increased she settled down. since then she has not looked back and is doing really well with out that wretched tube! Although on some days it takes 9 bottles over the 24 hour period so sleepless nights again!
We had a meeting with her heart surgeon Mr Barron on Friday and things look good for her next operation , even though she has two veins to connect rather than one and she has a leaky valve!!
The other day Kaitlyn had her first proper laugh - she found Joshua's karate kicks very entertaining ""
3 comments:
Well done Kaitlyn! Bet you're over the moon to have her NG tube out at last - means you can see her gorgeous little face properly! She's looking brilliant - really well. So glad the meeting went well with the lovely Mr Barron! Keep us posted re stage two. Lots of love to you all, Ali, Pete and Charlie xxx
Hi Kay
Sooooo glad that tube has gone for good - I knew Kaitlyn would do ok once they'd given her a chance to feed solely be herself. I bet you feel liberated!!!
We're back at BCH tomorrow for Thomas' check up so we'll ask if they're any closer to getting a date for his 2nd OP rather than just 'before Chirstmas', I'll let you know how we go.
Fab to see your little lady looking so well.
Bye for now
Lindsey xxx
Hiya Kaitlyn, it must be amazing being tube free. Well done to you and well done to your mommy! I'm off to Austria on Sunday with the hope that they can help me be tube free too. Wish me luck!
Luca
x
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