Monday, October 9, 2017

The Ridiculous Lines You Hear If You Want To Make A Blended Diet

Photo Credit
When we have children food becomes a huge part of our daily lives. We have to decide, from day one, how and when and where to feed our children. When our kids have a hard time eating and need a feeding tube that doesn't change. We still need to feed our kids quality foods for their health and safety. 

Many tubie parents are starting to wake up to the reality that their children would still thrive and do very well on real foods instead of formula. The problem is, the medical system as a whole has gone very backwards in their thinking and will often poo-poo this idea if a parent brings it up, though this is the way tube feeding started. 

Photo Credit: ME! I grew those.
In fact, they have gone so backwards I have heard of parents being threatened with CPS if they dare say they are going to feed their children a blended diet through their feeding tube. It's ridiculous. 

Today I had one of those silly experiences myself, though not threatening (thankfully). Our GI was insistent on us seeing the dietitian before we moved to a fully blended diet. Ha, yeah, we already do it. But I wanted to make sure our sons had no gaps in their nutrition. I stupidly thought the day we got our sons feeding tubes that their nutritional needs were calculated and had been kept updated all this time. Instead I was told the dietitian only ever figured out their calorie need and nothing else. To say I was dismayed is an understatement. 

I showed up today to our appointment and was told the dietitian had read our entire chart, knew what we needed, etc. I was pumped thinking we were finally getting somewhere. She went on to tell me she had NOT figured out any nutritional needs so she would have to do that and it would take another week.

Then came the silliest part of our appointment. I was actually told the biggest reason why she's not fond of blended diet is the sanitation issues. It seems amazingly horribly hard for a parent to wash their hands before prepping food and not using raw meat in a blend. 

And there you have it folks. We should not blend food for our tubie because you have to wash your hands and not use raw meat. BUT, if we feed formula all this goes away? No! I have to still wash my hands. And, for the rest of my family that eats by mouth, I have to still not feed them raw meat. I was taken back. I wanted to laugh in her face. I wanted to say, "I have been married 16 years, have two sons who are 12 and 9, and have managed to never kill any of them or even make them sick with my food (any food poisoning we ever got was from a restaurant). 

It's insulting to parents to pretend they are too stupid to blend food for their tubies. If the same child didn't have a tube, these doctors and dietitians wouldn't care one tiny bit what went into their mouths. Don't believe me? When MY sons didn't have their tubes, this game GI team told me it was perfectly OK if my child ate ice cream 3 times a day, ate chocolate each day, and had hot dogs all day for each meal as long as they got their calorie goal met. They never asked if I cooked those hot dogs. They never asked if I washed my hands before scooping the ice cream. They just cared that my children were fed enough calories each day. What has changed just because there is a straw as the entry point?

Photo Credit
So, for all tubie parents out there, stand up and stand strong! There is no reason for most tubies to not have real food. The logic is on our side, not theirs. If you let them talk and share all of their thoughts, you can almost always easily find the errors of their thinking as I did above. It rarely makes sense. You will hear lines like "clog the tube", "g-tubes aren't made for blended diets", "you don't have the skills to make a nutritionally complete diet", and the list goes on. Laugh on the inside and then show them the studies that show a clogged tube is not the issue, show them the documentation that comes WITH THE TUBE that says it IS made for a blended diet, and stand up to show how much you have grown since infancy to prove you have the skills. If all else fails, do what's best for your child no matter what the GI team says. 

Monday, October 2, 2017

Ripple Milk - Product Recommendation

My younger son cannot deal with milk. He refluxes on it no matter what fat content is contains. It also means calcium is hard to come by without a lot of vegetable intake ... which mean volume increase ... which mean gastric emptying problems. 

Enter Ripple Milk ...

Ripple Milk is a pea protein dairy drink alternative. It comes in a few flavors (original, unsweetened, vanilla, and chocolate). It also comes in shelf stable drink boxes for meals on the go (think lunch boxes!). But, the reason why it's an answer to our son's issues is due to what's inside.

Ripple Milk contains 8g of protein (plant based), 450mg of calcium (50% more calcium than cow's milk), 32mg Omega 3, and 1/2 the sugar of 2% milk (no sugar if you get the unsweetened variety).

It goes into a feeding tube well, tastes good, and is easy to find. If you click on the links in this post it will take you to their site so you can compare for yourself and find a store near you that carries Ripple Milk.

Sunday, October 1, 2017

Cornbread Recipe

This is cornbread that's so good you will want to write home to your southern mama about it. I love cornbread, but this one takes the cake. It has a texture more like a cross between cornbread and a biscuit. It has a great flavor and, if you add butter ... hold on to your bloomers.

My youngest made these last night with some taco leftovers. 


1 1/2 Cups Masa (yellow or white, doesn't matter)
1/2 Cup Flour
2 tsp Baking Powder
1 tsp Salt
3 Tbsp sugar (it would be quite tasty if you used brown or honey, but we just used sugar)
1 1/2 Cups Milk or half and half (we used milk)
2 Eggs
4 Tbsp butter, melted

Extra melted butter to drizzle over top (optional)



1) In a large bowl combine all dry ingredients. Stir to mix.

2) In a small bowl whisk together all wet ingredients.

3) Combine wet and dry ingredients. Stir until you get a sticky dough.

4) Pour into 9" cast iron pan, cast iron muffin pan, or cast iron corn bread pan (you can use a non-cast iron pan just make sure to grease the bottom and sides very well)

5) Bake for 20 - 25 minutes or until toothpick stuck into middle comes out clean. It only took us 18 minutes.

6) Drizzle melted butter on top once you pull them out (optional but so yummy)

Tuesday, September 26, 2017

Too Beautiful to Not Share

This came across a mitochondrial disease group that I am a member of on Facebook. This family is so sweet and their story will break your heart but will also give you hope.

For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal. 2 Corinthians 4:16-18

Monday, September 25, 2017

When Life Isn't Easy

When our older son regressed at 2 years old in a single day we had a very new world introduced to us. When our younger son couldn't sleep, couldn't stop crying, and was throwing up all of his meals as an infant, we have a very new world introduced to us. But, eventually, we felt we would understand the new world, get used to how it worked, and the heartache would lessen because it would become our new normal. Eventually even hard becomes your routine so you don't have the constant ache of the newness.

The problem with that thought is ... life doesn't work that way with special needs.

Photo Credit
What we thought was a one time regression, was just the first of many regressions our son would have throughout his life. We didn't realize he would learn to add, subtract, and write only to lose them in the blink of an eye. We had no clue he would learn to pay for his little toy he had saved up for only to not understand what that process was overnight. None of this was explained to us and I never read it on a blog, website, magazine, or medical journal. This keeps the heartache fresh. Just as you finally peel off the band aid from the wound, it's like you hear "not so fast, friend" and it starts to hurt all over again.

When our younger son got older we felt he would grow out of some of his anxiety and other issues that seemed to have plagued him since he was a few days old. When he got his feeding tube we figured this is as bad as his eating will get. We got this under control. We didn't realize after a year on the tube we would put a child to bed after a small supper and a small tube feed and wake up with a child that needed 100% meal replacement because he wouldn't eat a single bite. We didn't know. No one told us it could cycle that like.

To make it all worse, most doctors don't seem to grasp any of this. You go to them in a state of shock and sadness to ask for their help and they tell you they haven't ever seen this or, they have seen it and have no idea what causes it. They send you home to deal with what they, as medical professionals, don't even know how to deal with themselves. You, as a parent, are supposed to know what they haven't been taught.

Photo Credit

It's a hard place to be, and it doesn't seem to let up for so many. It's also a situation that is foreign to most people in our world. When you grieve, have heartache, or have pain, it's usually for a time, for a season. You lose a loved one and are stricken with sadness, but you eventually move to a lesser and lesser amount of pain as you carry the wonderful memories of that person and, if you are a believer in Christ, with hope. But, when you live a life where you start to get your feet under you finally after a huge shock or loss, only to have the rug pulled out again and again, that point doesn't seem to truly come.

What can you do? 

Here's what I have learned:

1) Allow yourself to feel the pain - No, don't live in it. Don't let it consume every part of you. But allow yourself to feel that initial grief, sadness, pain, frustration, and whatever other feelings come. 

2) Find your strength - MY strength comes from my faith, my deeply held belief that there is a God, a Creator of all, a lover of souls, a Savior, a comforter and friend. Honestly, without that, there are days I would completely crumble. I have seen miraculous things and my hope is in one who cannot be changed or destroyed. 

3) Accept this is your new normal - Eventually you have to say to yourself, "OK, this is where I live" and learn to navigate it. You have to. If you want to thrive, you MUST. I know it stinks. It's not where you wanted to be, but reality is ... it's where you are. You have to deal with reality. 

4) Accept that your new normal might change at any minute - I hate change. I like knowing what's coming over the horizon. Yeah, well, joke's on me. I live in an environment where the child I put to bed is often very different from the child I wake up with in the morning. So, I have to take each day, each moment, as it comes. I have to look at a situation and say, "wait, is this a new normal again or just a temporary hiccup". Then I make a battle plan and move forward. The enemy is moving, living, and changing, just like in a war. You have to allow yourself to change with it. Period. 

I would love to say I have this down pat. I don't. I cried to my husband this week that it wasn't fair and was too hard. He held me and told me he knew and understood. He didn't tell me to "allow yourself to feel the pain, find your strength, accept this is your new normal ... " He just held me and let me cry. But, eventually I start to move forward with it, I do work to move to a healthier view of what's happening, and I make a new plan to help my kids. Honestly, I am so grateful to have my husband beside me, and even more thankful I have a Savior that loves and strengthens me because I truly don't know how I would make it another step some days without it. 

Photo Credit

Monday, September 18, 2017

Weighted Blanket Giveaway

We are big believers in weighted blankets. They comfort my high anxiety child, bring peace to my child who is very stimmy, and honestly I like it when I am not feeling well. But, they can be a bit pricey. That's why I wanted to share a giveaway with you. 

I am not affiliated with this company in any way. However, I did win a blanket from them earlier this year and I can attest to it's quality. 

Before you enter Lifetime Sensory Solution's giveaway, where you will need to know what weight blanket to ask for, make sure you know how to calculate the proper weight. More weight is NOT better and too little isn't going to help much. 

You need to know the weight of the person who will be using it. Unless your kids, or you and whomever you live with, are very close in weight range, it will serve one person. Now, take 10% of the person's body weight, add 1lb, and that's your blanket weight. 

For example:

If your child weighs 52lbs = 5.2lbs (10%) + 1lb (for growth) = 6lb blanket (actually equals 6.2 but you would round down for anything under 6.5 and up for anything over and including 6.5). 

Head on over to Lifetime Sensory Solution's Facebook page to sign up. I will include the link below. 

I receive no compensation, award, notoriety, or any other payment if you click or use this link. 


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