Monday, August 10, 2015

Week 103: Vest at last

Lime is exactly one month old today--how time flies with the second baby.  He's starting to be awake for more of the day, and he's really able to focus his eyes on objects that come close enough for him to see.  He continues to be very even-keeled, and doesn't protest too much when his brother's trucks come a little too close for comfort.  He has a bit more of a "witching hour" than Lemon did, but even that is pretty mellow as these things go.  He is definitely continuing to pack on weight, and has maintained the feeding schedule necessary to maintain his current growth rate (yawn).






























Lemon is acting more and more like the two year old he will soon be.  This week we've really struggled with eating, he turns down almost everything and often won't eat enough at a meal and get really hungry and cranky an hour later.  We're trying not to cater to him too much, offering him a few options for each meal and letting him figure out if he's going to eat them or not.  This week it's mostly "not," even his favorite foods, but this is something he'll just have to work through himself--we can't force him to eat!  Still it's incredibly frustrating after all the great weight gain we had in the last few months, to know that toddler stubbornness is going to take some of that back from us.  But, as I once heard a child feeding expert say, kids won't starve themselves to death, so eventually when he's hungry enough he'll start eating normally again.  Whether that happens before his parents lose their sanity is a separate question.

The biggest news this week is that we FINALLY received our vest.  After some final logistical snafus that involved our vest being temporarily MIA on a UPS truck somewhere in the great state of Wisconsin, it finally arrived and we had our training session on Thursday.  With all Lemon's recent wilfulness, I was a little apprehensive as to how he would respond to the vest, which basically is like putting on one of those paint-shaking machines that they have at the hardware store.  But, to my relief (and to the utter shock of the guy doing our training), Lemon didn't object at all to putting the vest on, and sat through a full half-hour treatment session without uttering a single word of complaint. 

So, our new routine is to do the vest treatment, which takes 30 minutes, twice a day.  In the morning, we do the nebulizer first, which takes about 10 minutes, so with setup time we spend probably about an hour and a quarter a day on treatments now, when Lemon is healthy.  That may not sound like a lot, but Lemon is actually only awake for about 9 hours a day, so almost 15% of his waking hours are spent doing his maintenance treatments.  That will expand to almost 30% of his waking hours when he is sick.  As we try to make time to have Lemon socialize with other kids, to start preschool, to go on more outings, I am starting to really feel the constraints that CF is placing on our lives.  Between sleep, therapy, and meals, there is so little time left (and only in very short blocks) for doing anything else.  Add a newborn to the mix and leaving the house seems to require nothing short of a highly improbable alignment of planets.  Luckily for me, the planets did somehow align on Sunday afternoon, and I was finally able to take Lemon out for a ride in our bike trailer--the first time we've managed it this summer.  He absolutely loved it, as did I, so I'm hoping we can somehow manage to do it more often for the rest of the summer.





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