Saturday, May 15, 2010

pics and the easy life

Several people have asked me if life is easier after putting the tube in. In short, no. But okay, here's the long answer. The answer is no because any comparison we have to 'life' is life before James got his most recent illness. When we originally decided to put the gtube in, we had a pretty good schedule, James ate pretty good bottles, and we knew what to expect in a day. So the tube was planned as part of therapy, and to be used to supplement his oral feedings. That all flew out the window when James stopped eating bottles. Now, it's not the end of the world that he did stop bottles. He is eating real food better than ever, but just not to any sustainable degree. So we're still moving in the right direction, we're just taking a different path. And that takes some getting used to, especially me. Emotionally it's been very hard. (Even though, rationally, I know it's all going well---we're all aware that sometimes I'm not rational.) Tom said it right when he said it's sort of like having an infant again, which is extra hard because I feel like, feeding-wise, we've had an infant for a loooooong time. But we are currently tube feeding every 2 hours, 7 times per day, with an overnight feed of 5 hours. This means I have to set an alarm for 5 hours after I turn on the pump to turn it off, flush his tube, etc. That's not such a big deal if he, or I, slept steadily the rest of the night. But we don't. I am barely sleeping right now. But I do know that soon we will add more to the bolus feeds at each time and put more time in between them, so it's not forever. Plus, the feeds are going very well; there's been no puking in a good while! Sooo....basically, things are good, but just definitely not easier just yet. We go for a checkup next week and I'm very much looking forward to what is next. I think James is ready for more. And in two weeks we start therapy at KCRC, which is even more exciting because OT will meet with us in between his 2 feeding therapies on Wednesdays. It's going to be amazing and I actually think James will have lots of fun.
I have also, amazingly, actually booked my Mother's Day spa day for Memorial Day. I mean all day. My friend, Annie, and I are getting completely pampered with facials, massages, pedicures, body scrubs, lunch, swimming, etc, for an entire day. Without sounding too self absorbed (shut up Cook), we so deserve it.

The following are a bunch of pics from the hospital and homecoming. They all downloaded funky and I just don't feel like fixing it, so here you go:

James with awesome preschool teacher, nurses, nutritionist, PCAs, and all friends! (and his front facing car seat ride home!)

James with his school friend, Paris.

as you've seen in previous pics, James charmed all nurses to let him on their computers. It was pretty hilarious!

more ice cream.

where we lived.

totally inappropriate behavior.

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