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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
Showing posts with label blender diet. Show all posts
Showing posts with label blender diet. Show all posts

Friday, August 8, 2014

That mysterious Greek yogurt

I have been making my own yogurt for 15 years, at least.  That often surprises people.  Yogurt really is easy to make!  (Oh - or maybe they're surprised that I  am making it.  I am NOT a confident cook.)  I've noticed a lot of people are confused about what Greek yogurt is.  Greek yogurt is simply regular yogurt with the whey strained out of it.  The result is a thicker yogurt that is more packed with protein.

Yogurt is a super healthy food, as long as you're not buying the store stuff that is packed with sugar.  I used to feed Lilly my homemade yogurt, right through her g-tube.  It's also much cheaper, to make yourself.

It's so easy to make.  You don't need fancy equipment.  I have made it in my crock pot before.  Other people use hot water in a cooler.  There are easy to find directions online for a variety of methods.  I thought I would just share a series of photos of how I make it to show how easy it is to do.

I own a yogurt maker.  I like the size and the consistent results I get.  And since I use it at least once a week, it has been a great investment for me.  My first yogurt maker lasted 14 years.  Last year I finally had to buy a new one.  I have this Euro Cuisine 2 quart yogurt maker.

I start by pouring 8 cups of milk into a pot.  (I use 4 cups of organic whole cow milk, and 4 cups of our own goat's milk.  I just don't like the full goat milk taste, yet, which is why I use cow milk too.)

Warm milk to 180 degrees.  (The thermometer was included with my yogurt maker.)


Then I remove the pot from the burner and cool the temperature back down to 140 degrees.  Once it's there, I add in one cup of already made yogurt, as a "starter."  Sometimes I like to use vanilla yogurt as my starter to give it a flavor.  But usually, I just add some sweetener when I am getting ready to eat it.  (flavored stevia, or honey, or maple syrup, or flavored protein powder, etc.)


Then I pour it all into my yogurt maker and plug it in.  The yogurt maker keeps it warm.  I usually leave it in there for about 8-10 hours.  Then I take out the inner container and put it in the refrigerator overnight.


The next morning, if I want to turn my yogurt into Greek yogurt, I strain it.  I have this  Euro Cuisine Greek yogurt strainer for this purpose.   You can use cheese cloth or even a (clean) old t-shirt to do the straining.  But for me, since I do this so much, I like using the strainer.  Just scope out the yogurt into the strainer.


Then let it sit until it's the consistency you want.  If I'm going to strain for longer than an hour, I stick it in the refrigerator.  But I have found, straining a long time, leaves the yogurt too dry for my taste.  So I usually let mine strain for about an hour.  The whey is the yellowish liquid dripping into the bottom bowl.


When I'm done, I just scrape the yogurt out into glass jars, and then put them in the refrigerator.



I save some of the whey (it's in the blue jar pictured above) because I use it in things I make sometimes.  There are many things you can do with left over whey.  Here is a list of 16.  My favorite way is to feed it to our chickens!

Tabby's flock is happily drinking
There.  Wasn't that easy?  :)

Wednesday, May 29, 2013

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

Thursday, March 21, 2013

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!









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 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

Monday, October 24, 2011

Pretty dresses and a "real food" e-book

Today's pictures are of Lilly wearing her new smocked dress. It's the "Petit Ami" brand which I seem to always be drawn to. (I like the "old fashioned" style.) Ebay usually has a nice selection of these dresses, so I wasn't too disappointed when I needed to move Lilly up in sizes. :)

Lilly seems to continue to gain weight and be thriving on her "real food" diet. Yesterday I introduced pureed egg (with a little breastmilk) through her g-tube. She's done great with it and had it again today. (We get organic free-range eggs delivered by a local chicken farmer.)

For the past few years, I've gotten more and more interested what had been dubbed "real food." (This just means eating food that is close to it's natural state as possible. i.e. no processed food, not lots of added sugars, pesticides, etc.) It's what I think of as "basic food": organic meat, fruits, veggies, whole grains, dairy (real butter!), etc.


When I was pregnant with Lilly and found out that somethings weren't right with her, I really really tried to just eat organically and did things like adding in homemade kefir. I wanted to do everything I could to help give her a better chance of life. And since Lilly's immune system is always in a fragile state, I continue to try to learn new ways to feed my family better so we can be healthier. I recently came across a wonderful e-book called Real {Fast} Food by Trina Holden. This book is perfect for me! It is filled with time saving techniques and the basic kind of recipes that my family loves. (The first one we tried was salisbury steaks and we've all been craving to have it again ever since!) Most of our menu for this week will have more recipes from this e-book. I don't think I've ever really gotten excited about a cookbook before (I honestly don't even like cooking meals. I prefer to bake bread or something like that.) Anyway, it was the best $6.00 I've ever spent on something food related. If you're interested in learning more about the e-book, or purchasing it to download, go to: http://www.trinaholden.com/p/real-fast-food.html Scroll down and you'll see that you can download it in pdf, Kindle, or Nook.


Praise God, Lilly is staying well right now. She's so happy too! My husband and I were discussing last night that we don't even remember the last time she cried. We're excited that if Lilly continues to thrive, then next week we will get to leave to drive out-of-state for her open heart surgery where they'll patch the hole in her heart. God's plan for this little girl has completely surpassed everything we had hoped for. My current goal for Lilly is that she'll be one of the 60% of Trisomy 18 children (of the 5-10% that made it past age one) to make it to 5 years old. :)

I also hope that the medical profession in general will notice that there are children like Lilly that survive longer than statistics say they should, and will do what they can to help them. Our medicine is so advanced, I just don't see why any of them wouldn't want to try. We are so thankful that Wolfson Childrens Hospital in Jacksonville, Florida is willing to operate on Trisomy 18 children. But I also admit that at times I am completely annoyed that none of the big hospitals around us will operate on Lilly. (Though thankfully the majority of the doctors in those hospitals treat Lilly well and are kind.) Anyway, this reminds me of what one doctor at Wolfson's told us last year - that in the past, children with Down Syndrome were treated the same way.


Trisomy 18 is still considered "incompatible with life," but Lilly is one joyful little girl who I'm sure feels very "compatible with life." This scripture is so fitting for her:

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." - Psalm 139:13-14

Monday, October 17, 2011

Real food update

I've been continuing to introduce blenderized food to Lilly via her g-tube. She is now up to 3 food meals a day, with breastmilk or water in between. She has tolerated everything very well. I only give her 1 ounce at a time as that is all her tummy can hold. These are the food combinations she is getting:

- yogurt/banana
- spinach/orange juice
- avocado/dark chocolate
- cauliflower
- congee (see below for details)

Lilly is still eating coconut oil by mouth. Other than that though, I'm afraid I haven't been very good about working on mouth feeding with her right now. I've been so focused on the diet itself. But after her heart surgery we hope to really try hard to teach her to eat more by mouth.

Until I read the Homemade Blended Formula Handbook I had never heard of congee. It is a slow cooked porridge considered a staple in many Asian countries. It is supposed to be very easily digested. There are a lot of recipes out there for it, using different grains and spices. Here is how I made it for Lilly: combined 5 cups of water and 1 cup of organic brown rice in the crock pot. I added a pinch of himalayan salt. Then sprinkled in some ginger and cinnamon (both of which have many healthy benefits). Covered and cooked it on low for 8 hours. (Smelled yummy!) It made a lot so I put some in the freezer. With what was left, I blended it in the Vitamix with some breastmilk.

One important thing we've learned about feeding Lilly anything through the bolus - is NEVER lay her down flat for at least 5 minutes. If we do that, or even just jostle her too much, the food or milk comes right back out. In fact, Lilly's in my lap right now, staying propped because I fed her a little while ago. But I've kept her still long enough and she's getting squirmy. So we're off to do some physical therapy and practice sitting. :)

Saturday, October 8, 2011

Return to the pumpkin patch

Today we went back to the local pumpkin patch for the kids to pick out pumpkins. It was thrilling to take Lilly back with us this year. Last year I had wondered if she would still be with us to do it again. (You can see my post from last year - including a picture of 6 lb. Lilly here.) The Lord has been so generous with continuing to share Lilly with us!

"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." - Ephesians 3:20-21

Below are a couple pictures from today. (A much bigger Lilly than last year - she's almost 13 lbs. now!)

Lilly sitting amongst the pumpkins, wearing her pumpkin hat:


Super Lilly trying to lift a pumpkin:


Lilly with the pumpkin she picked out:



Lilly sitting on one of the old John Deer tractors that were at the pumpkin patch:



Ready to go home - Lilly got a sticker saying she had visited the pumpkin patch:




In other news from the week, Lilly got her first Synagis shot (for RSV (virus) protection) this past Wednesday. She's supposed to get one a month throughout flu season.


I'm continuing to add new foods to Lilly's blenderized real food diet through her g-tube. I found out that the body apparently doesn't absorb iron well from spinach if you eat spinach by itself. So I got a list of foods that help it absorb better. One thing is citrus foods like oranges. So I mixed orange juice in with her spinach. I also am melting her super healthy dark chocolate and adding that to her avocado. The other new food she had was banana mixed with yogurt. She is taking just under an ounce of food at a time. About 30 minutes before I feed her food, I give her an ounce of water. I read that this helps with digestion. She's now getting two feedings of real food a day. All her other feedings are still breastmilk. This next week I hope to add eggs and cauliflower.

Tuesday, September 27, 2011

Therapy with Mamma


Lilly is doing well so far with her "blender diet." She handled several days with the pureed avocado with homemade organic chicken broth just fine. (Our only glitch was one time the puree made a blockage in her g-tube button. But some water pushed in with a syringe quickly got rid of it.) I use a really big syringe to slowly push in the food. She's in my lap when I feed her and I watch for any squirming or facial expression or sound of discomfort. So far so good. Yesterday we added a tablespoon of yogurt in. We'll keep that mix for a few days. (It was recently shared with me that probiotics and help prevent colds and upper respiratory infections. See here.)

Except for Fridays, when her physical therapist and occupational therapist come to our house, I try and do about 30 minutes or so of therapy with Lilly most days. I have a little notebook where I write down exercises her PT and OT do with her so I can try them with her. I have to say that therapy time is just about her favorite time of the day. (Well at least it can compete with when her daddy gets home from work. He always gets the biggest smiles from her.)

Lilly just loves the stretching and working. She loves playing with her pinto beans. (Today's last two pictures.) Last week she wanted to crawl so badly. So I put her on our wood floor, and put her flannel burp cloth under her face and hands. I put my hands behind her feet and she pushed off on them. Her legs were crawling! She doesn't have the strength to lift her head or get up on her arms. But those legs were crawling and pushing her upper body along (sliding on the burp cloth). She was grunting and went several feet across the floor before she stopped. Definitely a missed video opportunity!

When Lilly is feeling well she is truly the most joyful and content human being that I know.

"The Lord has done great things for us! We are glad!" - Psalm 126:3









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!