I rarely get a chance to sit down at the computer and type up a blog post. I find it too hard to do on the iPod which I'm on more. I've thought about making Little Miss Olivia a Facebook page. Then I could put short little blurbs up instead.I'm not sure that would really work either. I'll have to think about it some more. Anyways ....
She had her last CF clinic on March 20th. She had gained almost 2 lbs in a month using mostly her NG tube. Very little oral eating, because the tube keeps her so full. =/ She was at 30 in tall and 22 lb 6 oz. They were happy enough with the gain they said we could take ONE feed to entirely oral. Like she's actually going to get hungry enough to really eat by just removing one tube feeding. Everything I've read about tube weaning says you have to remove a substantial amount of the feedings so that the person actually feels hunger for the weaning to work. /sigh At least they let us go two months until the next CF visit as long as we take her for a pediatrician weight check visit. Which leads us to .....
The pediatrician visit on April 19th. They had her at 31 in tall (Wow a whole inch height gain, that's gonna throw the weight vs. height ratio off some) and 23 lbs 3 oz (another good weight gain even with dropping a tube feed. YAY). She said her milestones where on track except for of course the eating. Not sure how much help the pedi will be with this later. We'll have to see later as we see how much the CF clinic let's us pull her off the NG tube.
Next visit will be to go back on May 15th to the CF clinic. Hopefully she will still be in a good enough Wt-Ht range that we can eliminate one or more tube feeds.
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