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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

Monday, January 9, 2012

Lilly's blenderized diet - where we ended up

In hopes that this post will help someone out there, I wanted to do a final post about Lilly's blenderized real food diet.

On Sunday I gave one of my favorite Lilly resources to a friend at church that has an adopted son with special needs. He got a g-tube shortly before Lilly did and his mama has been looking into the real food diet. The resource is the book Homemade Blended Formula Handbook. (Available from Click the book title and it will take you directly to the webpage that describes the book, and where you can order it.)

First, I would recommend the "real foods blenderized diet" to anyone that has a g-tube fed child. Second, if you decide to pursue this - get ready for a lot of questions from dieticians and medical doctors. Going this route is just not the norm! Formula - no matter the age - is. Third, if you do convince people that your child is thriving on a blenderized diet, they may say "but you can't because it will clog the g-tube button!" Lilly's clogged maybe three times. That was because I hadn't pureed the food long enough. (You need a Vita-Mix and you need to just let it go on high speed for awhile.) I was able to easily get the clog out with tweezers or a syringe of water. Also note that Lilly's MIC-KEY button was one of the smallest - if not the smallest - there is.

Lilly had been on breastmilk since day one. We tried adding in formula for a few months to add calories but finally quit because it just messed up her digestive system and gave her stomach aches and gas. But, like all children, she finally got to a point where she needed more than just breastmilk.

I have earlier posts on how I introduced her to this diet. So I won't go over all that again. I just want to stress that on this diet, she thrived. Her weight gain, which had stopped, slowly began going up again. She seemed to have more energy. Her digestive system worked well and she rarely had gas issues. She was content. She was doing more physically.

I recorded everything in little notebooks everytime I fed her. It's neat now reading back over what she had in a day. I wrote everything down for two reasons. First was for me, so that I could keep track of what I was feeding in a day, or couple of days, to be sure there was variety. Second, I wanted to be able to show the doctors and dieticians that I took this very seriously and put a lot of thought into it.

For a typical day, Lilly was on continuous feed, via a feeding pump, overnight. During the day, every 1 to 1.5 hrs. or so (except nap time), she would get one ounce of one of the below foods, or two mixed (organic whenever possible, veggies were steamed) :

- coconut oil (good fat - she loved to eat this one by mouth)
- avocado
- chicken broth (homemade with organic chicken bones and parts like chicken feet)
- yogurt (homemade)
- spinach with orange juice (needed to be combined for better absorption of the iron)
- dark chocolate (XOCAI) (super high in antioxidants and many other things - see this article) (I usually combined this with avocado)
- banana
- cauliflower
- congee (slow cooked brown rice with salt, ginger, cinnamon)
- eggs
- apple
- rice cereal with apple
- squash
- carrots
- peas
- sweet potato
- clementine
- green beans
- blueberries
- broccoli
- kefir

I also gave Lilly an ounce of water frequently. Water is good to give about 30 minutes before a meal, as it should be digested by the time you feed them the food. I usually mixed VitAloe and Stemkine and spirulina in with her water. I called it her Super Water! VitAloe was for immune boosting, StemKine was for regenerating damaged tissues (it supports bone marrow to produce more stem cells), and spirulina powder (immune boosting, phytonutrients, source of protein).

In addition to the three above supplements, I also gave her (every day):

- blackstrap molasses (for iron - Lilly was anemic at times, so this was important)
- probiotic (for digestion) (Country Life's Maxi Baby dophilus)
- kelp powder (iodine)
- beet powder (high in iron, potassium, magnesium plus many other benefits)
- mullein infusions (high in iron, great for respiratory issues, pulmonary diseases)
- Brewers Yeast (vitamins, minerals, proteins, immune boosting - good list here)
- Omega-3 DHA liquid (Dr. Sears brand) (brain power!)

I think that is it! The only other thing, was Herbs for Kids Echinacea/Astragalus, when needed. That is a great immune booster. I use that for all my kids if it sounds like they're starting to come down with something, or I know they've been exposed to something.

The day Lilly passed away I had pureed chick peas that morning for her to try. It was in the freezer in ice cube trays until recently. I'm still disappointed I didn't get to try that with her. Even though all this was more work that popping a can open, I really really enjoyed it.

I saw in my notebook that Lilly's very last meal was spinach/orange juice. I wish it had been chocolate and coconut oil!

A quick update on my friend K. - the doctors finally determined she had a congenital heart defect. She is to have surgery this afternoon to put in a pacemaker and defibrillator. If all goes well she will go home soon! Amazing! It looked like she wasn't even going to live for awhile. God really cares about us and answers prayer!

"If anyone acknowledges that Jesus is the Son of God, God lives in them and they in God. And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in them." - 1 John 4:15-16


  1. I think there was another reason the Lord had you document this information about Lilly. It was to remind you of your steadfast love and devotion to this child. If you ever question yourself or wonder if you could have done more, all you have to do is consult this exhaustive journal and see PROOF that you were and are an outstanding mother. The Lord knew exactly who could best love Lilly and that's why He gave her to your family. Thanks be to God. I am praying for you and sending you my admiration and encouragement!

    With love,


  2. For the Mullein - how would I or could I use this on my four year old with asthma?

  3. Give them to your kid with a MIC KEY buttons so that they'll get sumo wrestler arms and legs like Lil' Lilly!!!

  4. if only we ALL ate as well as lilly did...

  5. Wow. I was impressed before but I never knew the half of it!