A Memorial Day "hello" from Lilly

This past Memorial Day I smiled to see that some of the lily flowers in Lilly's memorial garden were starting to open!

Today I can see out the window that a bunch more lilies have opened up.  I'll take a picture to post here soon.  I can not recommend a "memorial garden" highly enough.  I feel like every time a flower opens up, it's Lilly sending me a "hello."  :)  I don't know much about flowers and am not really "into" gardening much, but I really do enjoy having a space where beautiful things grow, in honor of Lilly.  Each spring I will add in some more lily bulbs.

The chicks greatly enjoyed their time outside Monday.  They seemed to especially like being in this area.  Can you spot the chicks?

They liked getting into the middle of the flowers and sitting in there.

I've gotten a number of comments and emails about the "snake flicker" mentioned in my last post.  So I wanted to share pictures of it.  We still have it right outside the kitchen chimney where Mr. A left it:

Did you notice I said "kitchen chimney"?  Our farmhouse is over 100 years old so there was once a big cookstove in our kitchen.  (You can not see the chimney from the inside anymore.)  Earlier this month, we were blessed to have a visit from the woman who's grandmother lived in this house.  Mrs. M and her husband accepted our invitation to come over and share with us about the house.  We learned where that big cookstove used to be!  Mrs. M had several pictures to share of our house, and of her grandmother and grandmother's first husband who built the house.  I LOVE history so this was really interesting/fun for me. 

Speaking of houses, sadly some friends of ours - the L family - watched their house burn down on Memorial day.  It was a devastating loss.  Though, praise God, no one was hurt.  They were able to save very little.  I feel so terrible for them.  They have a son that is special needs and eats via his g-tube.  Yesterday I made him some blenderized foods and thankfully already had chicken broth and some pureed foods of Solomon's on hand.  When the kids and I took the food to the L family, I joked we were "Meals on Wheels" for g-tube eaters.  I've already made a list of all the things I'm going to make for this little boy to take to him Friday.  I guess you could say it's another Lilly blessing - that through her I learned how to make food for feeding her through her g-tube and now I know exactly what to do to help feed this little boy.  (I highly recommend feeding children real food, rather than just formula, through g-tubes.  I have a number of posts about this topic, here is one.)  I am so happy to be doing this.  It's rather bittersweet.

Thinking about the L's family loss of their home has weighed heavily on my mind.  But I know that God can bring about beauty from (literal) ashes.  And the L family, who are very strong spiritually, are already talking about the positives that will come out of this.

"He has made everything beautiful in its time." - Ecclesiastes 3:11

Book: Super Nutrition for Babies

This past Saturday, I gave Solomon his first bite of solid food.  He had soft boiled egg yolk with a tiny bit of Himalayan salt on it.  He gobbled it down.  Actually it felt like he was attacking me and the spoon!  I've never had a child react that way so it rather threw me off.

He also learned to drink from a special water bottle that I had gotten Lilly.  I don't think he cared it was pink!

With Tabby I followed much of the book Super Baby Food and had great results.  I tried it with Hunter it did not go so well with him.  He remains a picky eater with some food textural issues.  Then with Lilly and her special needs everything regarding feeding a baby changed.  So much of her life was about giving her things to boost her immunity.  Once she got her g-tube, and I began her blenderized diet of real food, I used tSuper Baby Food for some for it's guidelines of what foods to introduce first.  But by then I had been reading books like Nourishing Traditions and starting to make more "real foods" for us.  So Lilly got things like homemade chicken broth, made from organic chicken bones and feet. (To see what all she was eating, via g-tube, click here.) I've continued to learn more and implement better/healthier food changes for us since Lilly passed away.

So for Solomon, things are different from the beginning.  Last week I gave him a taste of cod liver oil.  Unlike the rest of us, he hardly flinched!  (We take fermented cod liver oil by Green Pastures. I like the peppermint flavor the best - that way we don't taste fish oil all day.) 

Next Solomon will try chicken broth.  Then - and I can't believe this - grated raw liver.  (YUCK!!!!)  I'll add 1/2 teaspoon to his egg yolk. Then we'll move to more normal things like avocado and banana. 

So where am I getting these weird ideas?  A book called Super Nutrition for Babies by Katherine Erlich, M.D. and Kelly Genzlinger, CNC, CMTA.  I've read most of the book and it is excellent.  And really inline with the way I think about food these days.  (Weston Price anyone?)  So I'm going to follow the book with Solomon pretty closely and see how it goes.  (Even though I despise things like liver and sauerkraut ...)

I've given Solomon the egg several day in a row now.  I think he and I have worked out his aggressive eating style.  First - he has to have a bib on completely unlike the other kids:

Then I get two spoons.  I put egg on one, and he helps me put it in his mouth.  Then he continues to hold that one while I take the other spoon and scoop egg on it and hold it up.  He puts down the spoon that was in his mouth and helps me guide in the new spoonfull.  I pick up the spoon on the tray and start all over.  I tell you, I just wasn't expecting this.  Tabby and Hunter were both such neat eaters and perfectly content for me to spoonfeed them.  Solomon gets VERY upset if he doesn't get to help.  He is definitely a very unique little boy!

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 www.mealtimenotions.com 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

Liquid whole foods coming soon ...

Here's a picture of Lilly with her brand new Vitamix mixer. This is the "mother of all mixers." It can even liquify chicken! I got it because mouth feeding is still going so terribly slow with Lilly and I want to start getting some bigger quantities of real food into her belly. Right now she is still getting fed breastmilk with her supplements added in. (StemKine and VitAloe.) But since she's 13.5 months old now she needs more nutritionally I think. I really don't want to go with man made formulas, especially since formula tended to upset her stomach so badly when we were adding it in when she was younger.

So I've been researching real foods and g-tubes. The one thing everyone said is you gotta have a really good blender, like the Vitamix and that my KitchenAid wasn't going to cut it. I'm excited about this process. I have a need in me to make my children's food and that includes Lilly, even if she does mainly eat through her g-tube.

Anyone that knows anything about a Vitamix knows they are crazy expensive. However, in my research online I found that they have a "medical necessity program" where qualified people can get a nice discount on one. I got a refurbished one which made the price even lower.

[If you're someone that would like to do this here's the proceedure: have your doctor fax Vitamix a note on letterhead saying why your child (or you!) needs a Vitamix (feeding by g-tube is the reason we gave). Have them put your name and phone number in that note. Have the doctor fax to "Sue" at Vitamix (440) 235-3726. When she get's it she will contact you and you can purchase the blender by phone.]

Speaking of g-tubes, yesterday was an absolutely crazy g-tube day for Lilly. Her g-tube button got pulled out of her not once, but twice! It was horrible but at least I knew how to put it back in and the procedure was so much easier for both of us as compared to when I used to have to put the NG tube up her nose. Then in the evening, she was napping and the milk pump tubing came out of the g-tube extension and milk was everywhere before we realized. Guess she was pulling Cleopatra bathing in milk again. Thankfully today is going smoothly with the g-tube!

"So, whether you eat or drink, or whatever you do, do all to the glory of God." - 1 Corinthians 10:31