Tuesday, October 25, 2011

One More Thing About the Diet and Then I Promise to Stop For a While

Last Friday, I sent yet another email to the doctor with questions about foods that Lily can and cannot have.

This is my original email:

Sorry for being such a pest but I'm really trying to get this figured out so I can quit bothering y'all!  We've got too much invested in all this to ruin it by feeding her the wrong stuff!   I want to come up with a week's worth of foods and then just rotate them around.

Can Lily have -

Spices & Baking:
Splenda brown sugar blend
flaxseed meal
Ideal no calorie sweetener (xylitol)
ideal brown sweetener (xylitol, maltodextrin, molasses, sucralose)

fruit leather (apple puree concentrate, natural lemon juice, natural apple flavor)

Tings crunchy corn sticks (Corn meal, contains one or more of the following: sunflower, expeller pressed canola or corn oil, nutritional yeast, salt)

Dairy Substitutes:
goat butter (made from goat milk)
buttermilk (made from goat milk and lemon juice or vinegar)

What other hot cereals can Lily eat?

Thanks so much!

Lana Rush

Since I wasn't home when the nurse called to give me the answers to my questions, my husband took it upon himself to record the phone message in an email and forward it to my phone.

Here's Ryan's interpretation of the doctor's response:

Dr Goldberg said:

There are no hot cereals that Lily can eat.

He said no flaxseed, no allspice, nutmeg, ginger, cloves, cornmeal, jicama, sunflower, grits, brown sugar blend brown sweetner molasses 

Lily may eat air and water. (I made this part up.)

And there you have it.  

Air and water.  

Two things I know I can safely feed my daughter.


  1. oh my. For MY lily. . . she's already extremely picky. She might not even eat the air. I'm not looking forward to the special diet i know will be prescribed next month at her doctor visit.

  2. Love. There's that.

    We swear that Little Miss subsists on air and love. It's no consolation for a parent who just wants to provide for their child, but somehow it's always been enough for LM...

  3. Maybe Dr Goldberg and his staff should come up with some mealplan suggestions for families going through this! I mean, seriously -- these kinds of restrictions could really use some additional guidance instead of you having to figure all this out. I would seriously consider emailing them and saying, "For me and other families trying to figure this out, could you put together a sample meal plan for 7 days with 3 meals a day and 2 snacks that I could use a guide?"

  4. Actually, are we sure of the air and water? Just kidding, but truly empathizing with your situation. Lily is one blessed girl to have a mother who is trying to be so thorough in her care. What a CHALLENGE!

  5. Geez! Can she have coconut milk? I don't remember if there was a restriction on dairy. I don't know how you are doing this! Huge prayers sent out that you can figure it all out.

  6. Hey,
    Just wanted to stop by and tell you I have been following your blog for sometime now and am learning and enjoying it so much. I love your perspective,your being "real" and the hope you have in a God who loves your "bird" more than you do....I have recommended it to several special needs children's moms and they are enjoying it as well. Thank you for your willingness to share and be who you are. I have my daughter reading it too and you inspired her to start her own blog. She is not quite as consistent as you, she is 9, that should explain the reason why. She loves reading and hearing about the bird. We are praying for answers, clarity, and wisdom beyond what you could ask or think. Love you guys

  7. I like Whitney's comment. She said it much nicer than I could possibly say! I do not have the patience for this like you do. Bless your heart. I hope they do find her a meal plan that she will eat. Hope you are making progress. :)

  8. Jim - If your Lily gets put on a diet, I'll be happy to send you a nice recipe for air. :) No, really I'd be happy to help.

    Karla - Yes, love is definitely an important ingredient in this diet. It's the only thing that's keeping me motivated.

    Whitney - I promise you I'll be offering my meal plan to Dr. Goldberg. Or at least offering to be a contact parent for any other interested parents. It's a challenge that really shouldn't be this hard for everyone.

    Mary - I forgot to mention that the water must be filtered, non-flouridated, bottled, enhanced with minerals.... just kidding. But it sure seems like that sometimes.

    Leslie - No coconut milk because she can't have coconut. No dairy either, though. Soy milk only. Thanks for the prayers.

    Mom2bjrj - Thanks for your kind words. I really appreciate them. And I would love to read your daughter's blog! How can I find it??

    Karen - Oh, you would have the patience if you were doing it for T! Because you're one awesome mom. Progress IS being made!


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