He had a blip like this a while ago, a few days in I go to call his dietician.... but just as I am about to, it gets better for a few days. The mornings are always the worst, he is back and forth to the loo, and curled up in pain at times. It's so frustrating not knowing the cause, and so sad seeing him like that.
But I'm also feeling really proud right now. His Creon dose is dependant on the fat content of what he eats (plus, rounding up a bit for high protein foods), as its fats and proteins that he cannot digest. He has always needed the full whack of Creon, and had very high doses as a baby, which he seems to have grown into more now (for CF friends, he takes Creon 10,000, anything from 25-50 a day). We know he manages well on about 1 Creon to every 3-4grams of fat. Over the last couple of years we have moved from labelling items in his lunchbox with how much Creon each is, to giving him a set amount and letting him work it out himself. He is so good at this now. Even with homemade food, without wrappers to refer to, his guesses are pretty good. This makes a huge difference to him; it means freedom to just grab a pot of Creon and go.
Please do feel free to contact me on FB of you're reading, I love questions. In reply to a recent one, Obie is a German Shorthaired Pointer (GSP). He is settling in so well. Few toilets get issues if we don't keep an eye on him, but he is just lovely. Very cuddly and loving, as well as active and a bit bonkers. So he fits in well around here. Loving his little pointer shake when he sees us. He has just started to go out to work with Dan (he's a builder) so he's busy having fun every day now.
We are fast approaching Isaac's 10th birthday, which is unbelievable, scary, funny and a little sad all in one. Can we really have met him all that time ago? Could he really leave home in less time again than that? How can he only have one more year of Primary school to go? Our little tinkleberry is all pre-teeny and I don't know where all that time has gone.
Plus, 10 whole years of our life with CF.
Birthday also means annual review. I usually dread, no, dreads not the right word, but dislike mildly going into clinic these days. It's not because it's a bad day. Actually, it's a rare time to be alone with Isaac, and we have fun playing don't step on the cracks all through the hospital corridors, get an M&S lunch, and see our lovely team. It's that when he is well, and we're on a high, we ALWAYS come away with an almost glowing report, but not quite. There is always a new thing to worry about, another niggeling worry to fit at the back of your mind. Or when he is not well, and we expect bad news, it might be better than we hoped but still, we still go home with the same symptoms, maybe unresolved. Plus, who ever wants to go into hospital? Full of sick people.... and who wants to bring home Noro virus for the weekend?
Annual reviews are different though. I prepare myself fully. Arm myself with expectation that it won't all go our own way. It is a full day of tests; bloods, X-rays, ultrasound, physio review, exercise tolerance test, in depth lung function, dexa bone scans, doctors review, CF nurse review, dieticians review, psychologist review, and new this year; test for diabetes.
All in one llllllong day. But although we could find out a whole lot of news we don't want to know, we feel positive that we won't, and if we do, we know that knowing is for the best.
Have a great day.
