Tuesday, June 5, 2012

Crazy days

Things around here are just plain wild these days. I wake up early and go to bed late wondering where the day went. I have the best intentions for getting things done, both with the kids and for the kids and around the house and otherwise, but there just never seems to be enough time. I sit for 5 minutes and I'm 5 minutes behind schedule. I miss being able to sleep in on the weekends and veg out on the couch for a couple of hours at night.

We are on behavior renovation 2012 around here. After Jake came along, schedules got screwy and attentions got shifted and before we knew it everyone was yelling at everyone, fuses were short, fighting was common and time outs were plentiful. We were losing and no one was happy. But, now that Jake is 10 weeks old (or maybe 11? I honestly lost count, poor #4) I'm on a mission to regain control and respect around here and I have to say that after just a week, things are starting to improve. All they've needed is some structure, some consistent discipline, and some individual attention. It means we haven't left the house in a while, but that's okay since it seems to be working. We still have some work to do, but hopefully we continue down the path to change and happiness for all.

Drew had a clinic visit on Monday, so we are in the middle of the dreaded wait for culture results. They should be back on Friday. He looks and sounds good so fingers are crossed that we come back clean.

Funny story about the clinic visit. Last time we were there, his weight was down ever so slightly. So in the past 3 months we have been working to keep him beefed up and gaining. No one was concerned with his weight, just concerned that it might start to trend downward. So we started adding half and half to his milk and making him extra buttery waffles loaded with peanut butter for breakfast and other things like that. We got recipes for super high calorie breakfast sandwiches that most people would dream about eating but that are only good for CFers. It was a little excessive, but Drew has always had great weight, being in the 85th percentile for weight, and we have never had to try to beef up his calorie/fat intake. For whatever reason, he doesn't seem to have the same caloric needs that a typical CF kid does, right now anyway. He got sick about 3 weeks ago and ended up losing a pound, but again it wasn't anything to worrying. So yesterday I go to the doc and he hops on the scale and it says 11.3kg or 24.9lbs. That is down almost 5 pounds from the last time! And when you only weigh 30lbs, thats a sixth of your body weight! My jaw hit the floor. I thought we were in big trouble. They weighed him again and got the same number. So I talked to the nurse who suggested getting back in touch with the food psychologist and I talked to the doctor for a while and we talked to the respiratory therapist all giving ideas and suggestions for things we can do to try to turn this around. This weight put him in the 14th percentile and I was getting the scoop on what we need to do and when we should be concerned enough to discuss a g-tube and all of that fun stuff. Then the dietician came in. And she just couldn't buy that he was down that much, based on the way he looked and everything else. She took him back to the scale and weighed him again and he was at 14.3kg. Both of us were puzzled, so we took him to a different scale - same reading, 14.3kg or 31.5lbs! He was actually UP in weight! So that stress filled two hours of talking and worrying and planning were all for naught. I watched the first nurse weight him those first two times and it did say 11.3kg, so I'm not sure what exactly was going on but I sure am glad we got it sorted out! So overall we got two thumbs up and were instructed to continue doing what we are doing because he looks and sounds great right now. I'm one happy mama!

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