Happy New Year!
I've been quiet for a couple of weeks, as we've been going through another tough phase and I didn't want to depress you all. Gremlin stubborn independence has now gone through the roof. She is not too bad at lunchtime but come dinnertime, with the amalgamation of tiredness, protein is currently only provided by the back up 'fromage frais' option. 44g Petit Filous is 3 exchanges, or Munch Bunch 45g is 2.5 exchanges. Then I have been trying to offer her self-feeding options. Tonight was PKU pasta with homemade tomato sauce (protein free) and yesterday was PKU Promin sausages, carrot sticks and brocolli. She still didn't eat terribly much, but at least she wasn't screaming the WHOLE way through. Ugh.
We are muddling through as best we can, but her levels are fluctuating wildly. 570, 293, 566 for the last 3 blood tests. There are many factors that may have contributed. Her sleep has gone to pot, she is teething canines, she's just started walking and she had a virus before Christmas which seems to have completely knocked her out of sync. She seems very cross a lot of the time. I spend evenings with her screaming and clawing at my leg while I try to cook dinner for her and her big sister. It's tough and quite exhausting at the moment, but we are ending the day at the correct protein exchanges much more often that we're not.
On a more positive note she gets funnier and funnier by the day. She is trying to do 'I'm a Little Teapot' actions when anyone sings the song and she runs up to Daddymin and roars at him to make him jump. It is heartmelting stuff from my cross little determined lady.
I really feel for you, my friend. Whenever my wee one's (he'll be two next week)phe is high he is cranky and mean. We've had a good handle on it for some time now. But before we found a groove he would act exactly as you describe. Could be that her exchanges are too many at the moment and she'll level out with less. I started doing that myself until I found his levels reaching an appropriate place. Anyway, I hope you find, as we did, that your little ones demeanor becomes so sweet and fun when her levels are even and low. Good luck to you and your beauties :)
ReplyDeleteThank you robinmarie. That's a really interesting thought which I hadn't considered. She is so much angrier than her sister was at this age, but I don't know if it's the PKU or just the way she is. Her levels have been high again this week (604) so your theory does seem to fit. I'l mention it to GOSH. Thanks :0)
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