caption - title

The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, September 22, 2011

Operation blender diet

A few days before Lilly got sick, I decided to slowly start her on a blenderized diet of real food. She had two days of a little avocado blended in homemade organic chicken broth fed to her through her g-tube. Then she got the cold so I stopped as I didn't want to do anything extra. Now she's better and so today I again gave her a half ounce of the avocado/broth blend. (You can see in the picture I have the food in a big syringe, then push it through the bolus extension of her g-tube.)

I've started a little notebook so I can keep track of what I'm giving her and note how she handles it. I figure start SLOW and only introduce one new food a week. Since she has tolerated a little broth and avocado by mouth, I started with those.

The "other Lily's" mama shared with me about a book called Homemade Blended Formula Handbook by Marsha Dunn Klein, M.Ed, OTR/L and Suzanne Evans Morris, Ph.D., CCC. It is available on the Mealtime Notions website: http://www.mealtimenotions.com/ . Click HERE for the direct link to the book.

I'm so glad I got this book - it is a wealth of information. Plus I'm a "book person." It's nice to have a book to carry around and read wherever I want and not be chained to a computer searching here and there for information to piece together.

I am really looking forward to seeing how Lilly does on a diet of real food. She is still currently just getting breastmilk and now at 14 mos. I know she needs more. But her digestive system does NOT like formula very much. So I am praying this will work for her. The book had examples of children (a variety of ages) who had all sorts of digestive issues on formula and when they were switched to the blenderized real food diet they made HUGE improvements. Digestive issues went away, they began gaining weight better, had more energy, felt better, not sick as much ... the list goes on. For children (and adults) with g-tubes, formulas are convenient and are scientifically packed with what they need. But surely they just can not be as perfect as the food God created!

"And God said, “Behold, I have given you every plant yielding seed that is on the face of all the earth, and every tree with seed in its fruit. You shall have them for food." - Genesis 1:29

"Every moving thing that lives shall be food for you. And as I gave you the green plants, I give you everything." - Genesis 9:3

One other big change for Lilly's feeding is that during the daytime, we have been switching from using the pump and continuously feeding her, to bolus feeding her. Her tummy is still so tiny that I'm giving her an ounce of milk every hour. But in the couple weeks we've been doing this, I see that she is slowly starting to handle more at once. So we'll eventually be able to give her several ounces at once and not have to feed each hour. We are all LOVING this! Because without Lilly hooked up to the feeding pump constantly, we can do things like just pick her up and walk around with her like a "normal" baby. :) And I honestly think Lilly is feeling better too. I don't think it is just a coincidence that her painful gas issues have been decreasing as I have been getting away from the continuous feeds on the pump during the day and doing the bolus feeds instead.

I'll be sharing more about this food journey in future posts. For now I'll wish Lilly bon appétit!

6 comments:

  1. you looked great today lilly, and thank you for playing your music for me.

    love,
    mah mah

    ReplyDelete
  2. Julia would be proud! bon appetit!

    ReplyDelete
  3. Have you thought about trying yogurt or kefer? It might really help her tummy, and help keep her healthy if another cold comes around. I think it's supposed to help with constipation too. I started the girls on yogurt when they were about 6 or 7 months.

    ReplyDelete
  4. Lisa,
    I had to laugh at the bon appétit comment after reading that combo of chicken broth and avocado.

    YOU ARE DOING SUCH A WONDERFUL JOB TAKING CARE OF HER. BUT THEN I KNOW YOU LOVE A CHALLENGE. EVIDENTLY GOD DOES TOO. HMMNN

    THAT IS GREAT THAT YOU CAN UNHOOK HER NOW.
    HOW IS THORNY DOING ON HIS FEEDING TUBE?

    SHISSHY

    ReplyDelete
  5. I have been a blog reader of Lilly's life for many months now. I have a special needs Sunday School class at our church. I have children ages 1 - 12 with many different needs. One of the children in my class has mobius syndrome. Because of her failure to thrive, her mother,changed the Gtube formula from her diet and started to develop her own diet. I gave her a call after reading this post. She has written down the things that she has done over the last 6 or so years. I have the letter that she has written to you and if you are interested you can contact me through my email that I have submitted for updates. She has given me permission to give her contact info to you or I could mail the letter she has written to you. May God bless you as you find just the right diet for Lilly.

    ReplyDelete
  6. You are a remarkable mama! I admire you in so many ways for how you display such love and devotion to your family. Lilly is a blessed little girl to have been given such a beautiful family. The Lord is using each of you and ministering to many! Thanks be to God!

    With love,

    CMWH

    ReplyDelete