Saturday, December 20, 2014

Say What?!

After the geneticist appointment and her being concerned that Cora is now too tall, I called Jordan to ask her what she thought and to see what we needed to do. I'm not at all concerned about Cora's height, she's made some major growth and progress since her surgery and is definitely no longer FTT. Since she's been in the 95% for height, weight, and head circumference I asked Jordan if we could take Cora off of the high calorie diet. So she gave me a new recipe to use for daytime oral feeds and nighttime pump drips. I began hearing that usual rattle in Cora's chest a little more prominently so I new the consistency wasn't right, she was aspirating. I just experimented a little bit with her recipe until I found a thickness that looked better to me. I've kept Cora on my new recipe and she's done great with it. That aspirating is tricky business, the old vs. new recipe for higher vs. lower calories is only about a half scoop difference. That ever so slightly thinner milk was just thin enough to cause problems. I should become a chemist.

Cora does get an open cup with thickened formula in it just for practice but I wondered why we are still on purees. My fear was that because of her dysphagia she would choke on everything I gave her, no matter how small the pieces were cut up. I tried giving her a few bites of peaches and she did wonderful so I took the leap to do strictly table foods, no more purees. I thought it was a long shot in the dark and that she would definitely choke on at least half of the foods I gave her.......wrong! Cora did beautifully!!!! She's done shockingly well with table foods, I'm just absolutely stunned at her progress! I'm totally speechless and I can't begin to express how happy I am and also relieved. I thought we'd be in the baby stage of bottles and formula for at least another year because of her dysphagia and aspiration. But Cora's done and continues to do great with table foods and now eats like any other baby her age.

Last week we met with the allergist to see if we have the green light with dairy products. We have a go! We're supposed to introduce white cheese first, then yogurt, and then very slowly introduce cow's milk. Dr. Drain thinks she will most likely be lactose intolerant but time will tell. So far, Cora's done great with cheese and this week we are introducing yogurt, so far so good! If she does well with milk then we can be completely done with formula altogether. Woohoo!!!

THE BEST NEWS?!?!?!?!?!?! Since Cora was eating table foods regularly she did start to aspirate again on the table foods. So I tweaked her diet to 5-6 small meals a day instead of 3-4. She was fatiguing with the bigger meals and aspirating. Since she's been on the 5-6 meals a day she's done wonderfully and the aspirating has cleared. I got to thinking to myself, if she's eating this larger volume during the day then is she getting too much with the addition of the 12 hour G tube drip at night? So I tried taking her off the pump at night. She didn't wake up once and hasn't skipped a beat. Cora's been off the feeding pump exclusively for about 10 days now!!! Jordan is out of town so all of these questions about her thickness, lower calories, is she getting too much volume, what about milk, etc. I haven't been able to ask her. So I've just experimented and Cora has done so well. I'm so shocked!!! Jordan comes next week so I'll either get a pretty good rebuking or praise, I'm not sure which.

Cora continues to astound me with her progress and improvements, what an amazing girl she is!

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