Dear TOF, I'm beginning to loathe you.

I know we haven't had to really mention you for a long time but you appear to be causing trouble again.

Time to touch on Sophie's 'other' issue.

It's more to do with her eating side or lack there of if I'm more truthful.
If Sophie hadn't been born with a TOF, she wouldn't have had horrendous reflux resulting in her oral aversion (phobia to eat).

We started her tube wean September/October of last year and although she has made huge progress, she still isn't taking anything substantial orally. She is still just tasting things, licking and nibbling, but not really eating anything as such. She hasn't had her milk increased since summer last year, just decreased and she has done really well to actually put on weight in that time.

Last CF clinic showed that although she had grown a huge 3cm, she had lost a fair few kilograms of weight.

The problem I'm now facing or call it a personal battle of what is right and how should we play this, is where do we go from here?
As hard and disappointing as it is to admit, I am feeling that we may need to add some more milk to her tube feeds again.

I'm trying not to look at this as a total failure but it is disheartening. The reason I've come to this conclusion is not only based on her weight loss. Sophie is physically hungry of an afternoon, I mean REALLY hungry. Her stomach is growling, she is becoming grouchy, which is her way of dealing with hunger and she has been asking for her bolus tube feed up to 3 hours before it is due.

Although her stats say she isn't underweight, physically she is looking skinny, her port is sticking out and she has bones poking out from her hips and shoulder blades.

I have emailed her feeding dietician for advice and to air my concerns. We are so lucky Soph is pancreatic sufficient so she doesn't have too many problems gaining weight, I honestly don't know how we'd even consider tube weaning if she wasn't. However, she still needs weight on her and definitely some in reserve in case of a lung infection. She has always been on the chunky side and I attribute her good health thus far to this and I do not want to risk her lungs suffering due to us being keen to get her off her tube feeds quickly.

It sucks but I guess we have to wait and see now what her feeding team want to do. They may be happy to leave her for the time being, especially with the warmer weather round the corner. She's so flipping active she is burning off so much more now.

I know deep down what we need to do and it is gutting but she may only need a slight increase to curb her hunger. It was hoped that in causing her to be hungry it would trigger her to try more foods but she's still not totally at that stage yet.

When I know of the plan I will let you all know.

On a brighter note, we have been awarded an inspirational blogger of the week award over at Jenelle's blog Single Mom Inspirations. I've linked to her blog before as she shares some amazing inspirational quotes and her blog always leaves me with a nice feeling of calm and happiness. Please pop over and say hello.

She told me that "I created this award to recognize those blogs that I find are inspirational & encouraging". I am really honoured and humbled that someone finds our blog inspiring and makes my rambles worth while :)

It's one I don't have to share like others and it means a lot to us.





I do have other awards to dish out and I'm still writing that post, so keep tuned to see if I'm spreading the love in your direction ;)

I'd also like to take this opportunity to thank you all for your continued support and awesomeness especially regarding my last post. Thank you for your comments, emails and texts it really has meant a lot and I feel less discouraged and resentful of others who are naturally selfish.

Take care of you and yours.
xxx