Ellie is on a food supplement called Calogen and has been for a few months now (except a 4 week break because of a prescription mix up). At first she responded to it well putting 2lbs on in a week; which, believe me, is a lot for her as she barely puts 6lbs on in a year.
But just as we held out for this miracle weight gain did her body become "used" to it and now her weight has stabilised although if I'm truthful, she lost that 2lbs and is back on an even keel. She is still dangerously underweight and as much as we pile on the calories, we still have to balance the nutrition out. Meaning I have to top her up with veggies and fruit even though they are practically negative calories.
For breakfast Ellie has a bacon sandwich and a cup of coffee. I admit the caffeine works, it wakes her up and she loves it.
Mid morning she has mini sausages or a mini pork pie.
At lunch she has chicken and pasta with fruit or veg
When she gets in from school she has one or two packs of crisps or a small sandwich with carrot or pepper sticks plus a glass of whole milk with Calogen.For her tea she usually has a meat and gravy dish with pasta and sweetcorn, carrots or brocolli.
She then has her Calogen before bed with a nestle chcolate straw in it with a 300m glass of whole milk.
She has the same calories every. Single. Day.
And she isn't gaining an ounce.
We can't possible shove any more food into her, we tried it. It made her baulk and gag. You or I as adults could live off what she eats. Truly. And add that she doesn't burn off the calories because she is physically unable to move like you or I, so where do those bloody calories go? My Doctor told me that she burns off more calories by sitting still - is that a blatant fob off? Im v. v. v. suspish of him.
And I do worry that the doctors think I am not feeding her because they look at you that way. You know, with a tilted head and piercing eyes. They ask about her feeding pattern and you tell them about every morsel she has eaten and they look at you as if you made it up on the spot. They even ask Ellie what she has eaten and they are scanning my face and her face and as she looks at me for re-assurance I can help but feel paranoid that they are eyeing me up and thinking "you are clearly starving her". But you only have to look at her nails, her skin and hair to know she is well nourished. Her nails are beautiful, her eyes have a lustrous glaze and her skin is so peachy. Granted, her physical frame is not pretty to look at because its so skeletal and faril and twisted and crooked and stooped. I'm not disgusted by it, mind, because we are used to it, really. She still has a heart and soul, just like you or I. I think people should stop and look beyond her physical presence because that beautiful heart of hers, which you can see beating through her ribs because she is so thin, would melt huge rocks and boulders.
Ive noticed recently her scoliosis is arching more and that she is twitching a lot. By that I mean body jerks. Now, she has always been classed a fidget by her school teachers but its not her fault. She jerks and twitches and can't sit perfectly still. We don't know why. She just twitches. A lot. Im used to it but at the moment its more prominent.
Ive also noticed her stooping more when she walks. But I only seem to notice when other people stare at her open jawed like they did tonight in Ikea. I swear down this woman stood there with her jaw wide open as Ellie walked by. I mean, if Ellie had of been naked in the store and lighting a cigarette I could have justified the gawp. But no, this woman was so brazen. I looked at the woman but not in a mean way and I kindly said "Its not infectious, you wont catch it".
Perhaps this is why we don't go out so much, maybe its the reason why but I hadn't realised it until just now. And not because we are ashamed but because its hard living in this perfect world when perfection doesn't meet the judges eye. And also, whats on my mind is that the Doctors told me last year that if she hasn't put on a satisfactory amount of weight on by June, she has to have a gastro tube fitted. And I'm totally against it. Because its been evident for 14 years that Ellie has had weight issues (failure to thrive) but because she has hit high hormone and growth levels, her weight suddenly has become an important issue for them. Had they not listened to me beg and plead the 13 years prior to that about her weight? I just feel she is being punished for their lack of duty of care.
Ooooh I'm in a right pickle about it. And I don't mean to be down about it neither. Its just affected me today and I wanted to blurt it out.
And I feel sooooooooo much better that I have :)
Have a gorgeous friday xx