Lots of things happened today for Olivia. Many of them really shook me and my ideas of doing the right things for her. I've read somewhere that for special needs kids (all kids, really, but not as apparently) the experts in what is best for your kid is really you and those who know her best, not doctors, nurses or those who "research the disease." They wanted to try this or that for her, and all we are to do is report the symptoms back to them. It makes me feel powerless when I feel that something else should be done.
Someone once told me that kids intuitively know what is good for them and will tolerate some things even though it isn't comfortable. The inverse of that is true too. When kids know they can't deal with something they do everything to get out of the situation. I sat with the nutritionist to express a concern with her tube feeds, and found that a lot of things I held as absolutes were challenged.
Misconception #1: I thought that if we added more calories per oz to her feed, she would throw up more often because she couldn't process the extra calories.
Reality: Well, not only does she tolerate the extra calories, there's less throwing up
Misconception #2: At home she gets 5 oz of (regular) Pediasure every 3 hours, 5x a day and a slow one at night. Here, she only gets 2 oz of (concentrated) Pediasure every 3 hours, 4x a day and a long, slow one at night. Even with the extra calories and what she takes by mouth, the volume seemed low.
Reality: It turns out, we've been overfeeding her. That's so outside my box, I just stared at the woman. Her caloric needs to grow were far lower than what we were giving. I didn't even know there was a such thing as too many calories. Also, the amount of Pediasure was taking up too much cubic space in her poor little tummy, so no wonder she throws up ounces at a time. And we thought we had to overfeed her a bit to compensate for the throwing up. Do you know how much guilt is associated with not getting in all the milk into her system? Only to find out that it was completely unnecessary.
Misconception #3: Her progress in eating is slow. It's always two steps forward, one step back.
Reality: Today, she ate more than ever. The volume of food is amazing to me, but the conditions in which she DID eat makes me wonder what I know. Warning: This may be TMI to some! She has had some problems...let's call it backed up pipes. My other bunny won't eat at all when she's backed up and is trying to, uh, dislodge it. She was straining until she was red in the face and after each attempt, she took another bite. What a champ!
2/22
Session 1: 25g
Session 2: 22g
Session 3: 15g
Session 4: 21g
Liquids log:
2/22
Session 1: 10g
Session 2: 4g
Session 3: 6g
Session 4: 4g
We miss u Ollie!
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