Wednesday, February 23, 2011

Sometimes no news isn't good news, it's just no news.

I'd love to be able to post that James has made incredible strides and we're ready to wean from the tube in March like we'd hoped. Well, he has made incredible strides, but, you know, over the last year. We had a really good plan for the past couple of months, but now we're sort of treading water. I felt we needed to increase James' tube feeds again so he could gain some weight and recover from winter colds and travel. Plus, whle he is eating more than ever, he is just starting to transition to realish food, which doesn't have as many calories as puurees and certainly formula. I plan on reducing his tubes again as soon as I feel he's chubbed up a little. The downside of increasing the tube is that he is not as interested in the food, which makes developing his skills more difficult. It's always a little give and take. But I don't feel we can stop using the tube until he has the necessary skills and is feeding himself. Got a ways to go for that. We still have issues with gagging and not chewing effectively. We seems to have a hard time sensing and then manipulating the food in his mouth. That's, obviously, where the sensory stuff comes into play. We are working on a new plan with an OT at our house (i've convinced her to drive an hour and a half so she can work with James at home and see how he really is---and by convinced I mean pleaded, guilted, and promised to pay anything), and possibly shorter and more frequent trips to Kluge, as well as a possible Dallas trip to see Jenny.

For a while I felt an urgency to get him sleeping properly and eating before the new baby (who is a GIRL!!) arrives. But as I've been trained so well over the past couple of years, I've let that balloon go. I really don't give a shit. :) I don't care who sleeps where as long as they sleep and I don't care when James starts eating as long as he does! Sorry to say that this little princess will not have a little pink nursery set up. She'll sleep where she needs to and we'll go from there, day by day. But I do promise we'll have lots of other pink stuff. See? Low expectations...er...no expectations.

We had a wonderful trip out to CA recently to see family and go to my beautiful cousin's bridal shower, since we likely won't make the wedding in July with the new baby coming in June. It was great to play with cousins (James' and mine!) and see sunshine and warmth! For months James didn't want to play outside. I was actually getting a little worried until I realized that maybe he's just kinda reasonable. Who wants to go out in 16 degree weather. Ever? So the week of daily 75 degrees really helped us out. Coming home to 46 degrees was awesome too. So James once again loves the outdoors which means I can huff and puff my ass around all our hills pushing the stroller so working off this baby weight later isn't such a huge shock. Also, having a little color on your chipmunk cheeks and double chin really does make it look better. Really.

I'll continue to post more as I know more! Until then, keep us in your prayers. We need all the help we can get!!

Tuesday, February 1, 2011

He likes some stuff!!

People frequently ask me if there's a food James really likes. I have to say, I've never felt particularly charitable answering this question over the past two years. I mean, the answer was no. Cause if he liked something, he would freaking eat it, right? And until 6 months ago, he ate absolutely nothing. Then he started eating some yogurt and we've progressed from there. But I can't say he liked yogurt. He ate it because I asked him to and fed it to him. He tolerated it. Still does really. But it's like my sister says: they're not potty trained if they can't do it all by themselves. He may eat some food now, and it's wonderful and heading in the right direction, but he doesn't actually do it himself, so it's really just a replacement of the tube. But finally, FINALLY, there are 5 things he will ask for repeats of. Shredded cheese, Cheezit Gripz (they are pretty tasty), toast (go figure), ketchup, and broccoli. The kid loves broccoli. I mean, I love broccoli, for for some reason I think it's way weird how he likes it. Says it's salty and bumpy. Wonder how he'll feel about it someday when he finds out it doesn't usually come drenched in olive oil or butter?