Linda and everyone who has so graciously responded,
       We have decided not to put Hagan on the "complete" formula as the
nutritionist suggested. This plan leaves no room for breastmilk much less the 21
ounces she is getting each day. It would require we put 1000 calories of the
formula in the pump each night to make it "complete" nutrition. That is the
total amount of calories the endocrinologist suggests she eat per day. We have
returned to our original plan...donor milk, organic toddler formula, and table
foods she eats orally (which is increasing). We are carefully scrutinizing her
total nutrition to make sure she is indeed receiving all she needs and looking
into how to change this over time.
       Hagan is very healthy, thriving, gaining, growing in length, and
moving forward developmentally. Even the nutritionist was shocked to see that her
fat stores and muscle tone were so good. What we really need is help with how
to feed not what to feed. Our speech pathologist is a wonderful advocate. Trish
has also been so supportive in this area.
       Hagan is genetically different and there is no formula or equation in
any book that says exactly how her diet should be managed. The geneticists
don't even understand it. All I know is that we are doing something right. She is
one of the most charming people you could ever meet!
        I have so many of you to thank for bringing me back to my gut
instincts. You are so kind to take the time to help us. My drive to see a milk bank
in Portland is growing!!
       The Lacie story is amazing. I think our nutritionist needs to see it.
Heather

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