Tuesday, August 2, 2011

Happy Birthday to me!!

Well I am a Leo. That's how we roll.
But this was a pretty special one, which is sayin something because Tom has been outdoing himself every birthday for the past 9 years. So not only am I not yet 30, which is just fun til next year, I have two amazing kids and equally amazing friends. Last year's birthday seemed hard to top, with Tom and Rob planned a huge shindig for Annie and me with tons of friends, food, and, as always, bubbles. This year was a little quieter, but we do plan to celebrate for the rest of august. It started with Tom finding me one of my heart's desires: an entire set of handmade, antique champagne coupes (the old fashioned saucer glasses). They are soooo cool, I can't get enough of them. We had a quiet day before friends came over for The Forbidden Dinner: stinky, unpasteurized cheese, pate, champagne, you get the idea.

The next day, which I still consider my birthday due to the aforementioned Leo-ness, we headed down to Charlottesville to meet with Dr. Borowitz, James's GI doc. We have not seen him since I was first pregnant with Eve, and he's one of the greatest people and doctors, so that was a fun visit in and of itself. But we were there regarding the next steps in relation to the gtube. Because we see all UVA docs and therapists, and because of their new computer system headed up by Dr Borowitz, he has been able to stay up to speed on James's case this whole time without actually having to see him all the time. We wanted to know if the tube should come out or not, and thru some hone conversations prior to this appt, knew it was coming up soon anyway.

There are lots if ways to do a tube wean, and probably each way should be individualized for each child. I had heard about rapid tube weaning and the idea has a lot of merit. Basically when you deem a child has formed a positive relationship with food, and no disabilities are preventing them from eating, you stop the tube, put the food in front of them, and keep doing that for about 2 weeks. You expect for them to lose about 10% of their body weight, which isn't a big deal for a lot of kids, and they can take quite a bit if time to get back to where they should be. You let them dictate how much to eat to learn to listen to their bodies' signals and use hunger as a motivater. And that's why it takes a whole to regain the weight because that is not a process you can rush along. So again, the idea is great, but not everyone who does this has watched ther kid go thru an illness quite like James had last year. Many of those children have had tubes from birth and may have way worse problems. But kidsdoing this kind of wean can expect to get rather dehydrated and need to be monitored closely. After talking to pretty much everyone, we decided that we worked too hard to get James hydrated and way too hard getting James to gain those 2 lbs he might lose, so we tweaked that theory and went a little slower and a little less hardcore. Hey, I got nuthin but time.
So all this was to explain where we wanted James in order to remove the tube. Basically he needs to be able to maintain his weight and hydration on his own, but then he needs to start to gain weight as well. For about two months he hovered around the same weight so, while I knew we didn't need to use the tube (that would immediately decrease his oral eating), we weren't really there yet. But when we went to the doc yesterday he had gained 8/10s of a pound! I was thrilled. And he looks great and healthy. Real food'll do that to you.

So now ALL this was leading up to the fact that...(drumroll please) we are TUBE FREE!! Seriously, they popped that thing out at the office, put some silver nitrate in (medieval) and now the kid just looks like he has a bullet wound. Crazy. A strange concern that we had been warned about is that young children with tubes in don't realize that it is not really a body part. So they can get very upset. We have been coaching James for several weeks now and he used to get really upset thinking about it being gone, but we kept at it and he's really been great about it. Tough kid. He was literally sweating while they did the whole thing. I thought the rest of the day would be rough, so we planned a Toys R Us excursion. That was fun but it turns out he was fine. Never complained again and the only rough part is changing the BandAid.
So we are not done but this is a big chapter closed. Thanks to everyone for their prayers. Next in the prayer lineup is for the hole to close up on it's own over the next month or so so that he won't have to have surgery to close it back up!

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