Well today it happened. The thing I have been dreading (well, aside from the carraway seeds incident last month!).
Gremlin ate something that she shouldn't have. We were in a park and Moomin was off playing. I turned my back for 30 seconds to check where she was and in that time Gremlin stole some oaty biscuit thing from her new little friend Mario. Mario's Mummy said, "Oh, she's gone for the healthy option" and I spun round like lightening to dig it out of her mouth. Gremlin had been eating one of her prescription wafers (which look like a regular sugar filled one) and is something I wouldn't have dreamed of giving Moomin at the same age but anything with protein in is not the healthy option for Gremlin. I don't think she ate much, but I cannot be absolutely sure.
It's got me thinking that I should tell everyone about her PKU whenever food is on the scene, which is pretty much all the time with babies, toddlers and pre-schoolers everywhere we go. I've been trying not to make PKU the first thing people know about her but it's going to have to be, for a while at least.
Thursday, 29 July 2010
Thursday, 22 July 2010
Baked beans!
A real staple in our house.
20g of baked beans = 1 exchange.
This is approximately 12 beans. It's tiny! I suspect when she's bigger Gremlin and I will have lots of disagreements about lack of beans. However, right here right now, it is the perfect amount for Gremlin to cope with. Last night I added 30g to some of her homemade ratatouille to provide 1.5 exchanges and she loved it.
A quick and easy way to get protein in, for now!
20g of baked beans = 1 exchange.
This is approximately 12 beans. It's tiny! I suspect when she's bigger Gremlin and I will have lots of disagreements about lack of beans. However, right here right now, it is the perfect amount for Gremlin to cope with. Last night I added 30g to some of her homemade ratatouille to provide 1.5 exchanges and she loved it.
A quick and easy way to get protein in, for now!
Thursday, 15 July 2010
Animal Magic
Chuffed to bits with some messy animal pasta! It looked so tasty Moomin insisted on having some too.
Sunday, 11 July 2010
Clever Moomin
The vanilla wafers have been a definite hit for Gremlin. Moomin has tried them too and approved. She is becoming increasingly interested in Gremlin's food and special tummy. Without prompting she asked me tonight if she could look at the 'pwoteen' of Gremlin's food. I showed her the packet and pointed to the protein content line. She nodded wisely and said, "Good".
I've also heard her playing and talking with her toys about protein. We do mention Gremlin's special tummy that works in a different way to ours but we don't talk about it much beyond that. She's also started to talk about it at pre-school and completely confused the teachers there! I've had to give a 'beginner's guide to PKU' to them, as they had no idea what she was talking about. I suppose that will save me a bit of a job when Gremlin starts there herself in a couple of years!
Someone suggested today that 'special tummy' is a strange phrase to use and may make Moomin feel like she is not special. I don't know. It is very hard to keep everyone happy and find appropriate ways to explain things to a 3 year old. As much as I don't want Moomin to feel un-special, I don't want Gremlin to feel too different either. I do think Moomin 'gets' it. She certainly knows that her tummy works the same way as Mummy and Daddy's, and she knows that there will be lots of her food that Gremlin can't eat because of her special tummy.
I've also heard her playing and talking with her toys about protein. We do mention Gremlin's special tummy that works in a different way to ours but we don't talk about it much beyond that. She's also started to talk about it at pre-school and completely confused the teachers there! I've had to give a 'beginner's guide to PKU' to them, as they had no idea what she was talking about. I suppose that will save me a bit of a job when Gremlin starts there herself in a couple of years!
Someone suggested today that 'special tummy' is a strange phrase to use and may make Moomin feel like she is not special. I don't know. It is very hard to keep everyone happy and find appropriate ways to explain things to a 3 year old. As much as I don't want Moomin to feel un-special, I don't want Gremlin to feel too different either. I do think Moomin 'gets' it. She certainly knows that her tummy works the same way as Mummy and Daddy's, and she knows that there will be lots of her food that Gremlin can't eat because of her special tummy.
Wednesday, 7 July 2010
We're going to need a bigger kitchen
Our wonderful chemists, for who nothing is too much trouble, phoned to tell me that Gremlin's first protein-free prescription food delivery had arrived and was ready for collection.
I strolled up there with Moomin, Grandmamin and Gremlin in the buggy thinking that we could juggle it between us and the buggy. I was expecting one loaf of bread, 3 packets of wafers, some puddingy things and some pasta boxes. This is what we were given:
I don't think the picture gives away the true scale. There are 6 loaves of bread, 12 packets of vanilla wafers, 1 box of penne pasta, numerous packets of puddingy things, some extra snack things from the manufacturer to try, and an entire tray of the all purpose mix (to make cakes, bread, and other things I don't even know about yet). This does not include animal shape pasta and cake mix! I had to go back with the car to cope with it all.
As this is our first order I have no idea whether this is normal or not. Perhaps for an adult? I am kind of hoping that the lovely chemist has got their numbers a bit wrong and ordered 1 'crate' rather than 1 'packet'! I know that Gremlin is their first and only PKU patient, so they are learning with us.
Meanwhile, as Gremlin's PKU Start milk delivery of 6 boxes is coming tomorrow, we are definitely going to need a bigger kitchen!
I strolled up there with Moomin, Grandmamin and Gremlin in the buggy thinking that we could juggle it between us and the buggy. I was expecting one loaf of bread, 3 packets of wafers, some puddingy things and some pasta boxes. This is what we were given:
I don't think the picture gives away the true scale. There are 6 loaves of bread, 12 packets of vanilla wafers, 1 box of penne pasta, numerous packets of puddingy things, some extra snack things from the manufacturer to try, and an entire tray of the all purpose mix (to make cakes, bread, and other things I don't even know about yet). This does not include animal shape pasta and cake mix! I had to go back with the car to cope with it all.
As this is our first order I have no idea whether this is normal or not. Perhaps for an adult? I am kind of hoping that the lovely chemist has got their numbers a bit wrong and ordered 1 'crate' rather than 1 'packet'! I know that Gremlin is their first and only PKU patient, so they are learning with us.
Meanwhile, as Gremlin's PKU Start milk delivery of 6 boxes is coming tomorrow, we are definitely going to need a bigger kitchen!
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