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

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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?

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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. 

Cerebral Allergies

I wrote an article for Complex Child Magazine on Food Intolerances and Behavioral Problems. It was published yesterday in the newest edition. Since I have some people coming here from the link to my blog in the article, I wanted to share some information that helped us on this journey.

Dr. Rapp - Childrens Allergies to Food and Environment

Could Allergies Be Ruining Your Child's Life - By Dr. Doris Rapp

Misdiagnosed Allergies, Food and Environment - Dr. Doris Rapp

Dr. Mercola Interviews Mold Expert, Dr. Rapp - Part 1/5 (the other parts are in the side bar)

Is This Your Child - Book (NOT affiliate)

Is This Your Child's World - Book (NOT affiliate)

Cerebral Allergies

Mental Illness or Allergy

Cerebral Allergy - PubMed

The Underlying Mechanism of Brain Allergies

Psychiatric Syndromes Produced by Allergies - Ecologic Mental Illness

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.

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. 

Ingredients

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)

Directions

PREHEAT OVEN TO 425

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)

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

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.

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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.

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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. 

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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. 

When Mom Is Sick

This weekend has been hard. This Mom was sick! It all started on Friday when my incredible husband took me to a fabric store. I know, I know. He IS the perfect man. Want to know more? He bought me "I Love Lucy" fabric. Stand back ladies, he's mine.

As we were coming home, because living in the country means an hour drive anywhere you want to go, my throat and ear started to hurt. I don't mean they started to ache a bit. It was full on pain. Sweet guy that he is, he stopped to get me a drink at Sonic to help alleviate the ouchies with something cold. It didn't work.

I went home, smiled at my new additions to my fabric stash, and laid down. I felt like poop. Actually, poop would have been an improvement. I laid around all evening and convinced my family that sandwiches and such was a wonderful supper -- mainly because it's all I was going to fix. I went to wash up after supper and found out the water was turned off. I called the water department -- though I am not sure why since they are only open 9 hours/week (not a joke, serious) and their last time to work is 12pm on Wednesday. Oh, also, there is no answering service, not even an old fashioned machine. However, I guess the pain was too much and I gave it a whirl only to find them in. They told me that they were getting calls from all over town and they weren't sure what was wrong. They also couldn't get in touch with the guy that fixed it. I admit to panicking a bit.

Thankfully we keep a 5 gallon jug of water for our water dispenser just in case. We needed it because I just given the kids a tube feed and had dirty supplies. Did I mention I felt horrible?

Hubby took over all the kid care and I went to bed.

And then he went to bed because ... he worked the next day. This means on Saturday and Sunday I would have the kids by myself while I was sick.

What's a Mom to do when sleeping all day can't happen? I went BASIC.

• We all stayed in pajamas all day long. I knew I didn't want to change, and I really didn't want to help the boys find underwear or whatever piece of clothing they suddenly couldn't find. 
• We ate simply. Sandwiches, cereal, and other quick foods were the order of the day. Yes, I still had to tube feed. So, I used baby food pouches that I could just draw up and push. 
• I made camp in the living room. I gave the boys the floor in the morning as I laid on the sofa. By mid-afternoon I stretched out in the floor and gave them a DVD and the couch. If I could see them all was good. This made it so much easier. 
• I let go of some of my rules. Juice twice a day never happens. But, my kids can pour their own juice so have at it. When Mom is sick, rules have to take a back seat. 
• I allowed every toy and book imaginable to surround me as I rested. Toys were everywhere. I figured I could demand their clean up after I didn't feel like I was hit by a Mack truck. 
• Take out was also on order. I called my husband and asked him to pick up something for us. I texted him what we wanted and waited right where I was under the covers on the floor until he got there. 
• I let hubby take control. Shocker, I know. Us women have a hard time with that one. But he's smart, has a job that requires mental and physical agility on a daily basis, and he has a very high IQ. He can handle things like taking trash to the kitchen from dinner, getting the kids in pajamas, helping with tooth brushing, etc. He did great. I didn't have to move. 

I think all of these boil down to simplify, simplify, simplify and ask for help. We just can't do it all. And, the more rest we get, the quicker we will heal. Ladies, it's OK to slow down and allow others to do things for us when we are sick. It also blesses them as they are able to serve us in our hard time. Allow that blessing to come to your family. 

Tracking Problems

Our sons both have feeding tube which obviously means feeding issues. Getting enough calories is one small part of tube feeding. We also have to make sure our sons have all their nutritional needs met, as well. And that part is a pain! After asking on my board on Facebook for tubies who use a blended diet, I have the answer.

I downloaded the Cronometer app on my iPhone, entered my sons information, and off I went. Now, if you have multiple people to follow you will need to create two accounts. I simply made two gmail accounts that were VERY similar and all I have to do is make the very simple change on the login page and I am in the other son's account. Right now you can't track multiple people. I hope they will change that eventually.

There are a few screens at the simple touch of the screen. With one touch you can add a new food. You can either type in the name of the item or scan the barcode. You will see every food, their calorie content, and how much that your child ate through the day.

Once you have entered things like their food intake, biometrics, etc, you  can click on "Trends" to see nutritional and biometric reports for any time frame you want. It defaults to the previous 7 days, but changing that setting takes seconds.

You can also touch "Macros" and see a quick synopsis of calories, fats, carbs, etc.

Last, and my favorite part, you can click on "Targets" and get a detailed breakdown of every nutritional need your child has. This enables you to make recipes that are tailored to get all of their nutrients each day, lets you follow trends to see where there are deficits, and makes sure you aren't getting TOO much of something that might have negative effects.

You can also add in foods that the huge database doesn't contain. So far I have only had to do this with two items and both were smaller brand organic baby food pouches. But, once I enter the information I never have to again as I can scan the barcode of the package and it will pull up what I entered before.

I can't recommend the Cronometer app enough. Just check it out, you won't be disappointed.

Short and Sweet

12 years old.

1 year from 13.

365 days from the teen years.

Add in Autism.

It is already kicking my tail.

That is all.

New State and New Changes

We have had a crazy ride recently. We moved. It was unexpectedly expected. What do I mean by this? I mean we, as in my husband and I, had been talking about it for a long time and, yet, somehow never actually thought it would happen.

A little over 5 years ago my Mom was diagnosed with breast cancer. She had surgery and that was, thankfully, all she needed. That sounds so simple, it wasn't. It was removal of the breast, drains, pain, fear, reconstruction of the breast eventually, more drains, more pain, more fear that it might return. From that point she wasn't ever quite the same. She became tired, very tired. She felt uneasy like her blood sugar was tanking all the time. Fast forward a few years and she has what is called Chronic Fatigue, though I don't know if that's the right diagnosis or if it's just the only thing the doctors know the call it.

My husband and I, in the whispers of night time talking before sleep, started to discuss her needing help. She either didn't realize it or wouldn't realize it. I was seeing her fatigue more and more. Washing sheets for one bed and putting them back on was a 2 - 3 day task instead of 2 hour task. We decided it was time to offer to move in with her and help her with daily life. This would mean massive changes for us. We had a farm. We had farm animals. We had a life, a church, friends, and lived 2 minutes from my mother-in-law who was also not in the best of health.

But it's what we had to do and felt was the right thing to do. We prayed, we talked, we discussed it with our kids, and we finally made the offer. She said no. We offered again, letting her know we were serious. She said no. We stopped offering and resigned ourselves to not knowing what she was going to do. We felt she was making a mistake not taking our offer. But it's her life.

Finally things seemed to change and I offered one last time. I am not even sure why I did, but it felt like I should. This time she cautiously accepted. We started to discuss plans and ideas of how this would work.

We found it quite easy to sell our animals. We have two friends who really wanted them, and we knew they would really care for them the way we would. I started to move things to her home slowly. We weren't going to sell our home and wanted to live with her part time. We would spend 60 - 70% of our time with her and the rest of the time just relaxing as a family on my husband's days off. This would also enable us to still attend our church that we had grown to love so much. It's a long drive each week, but so far it's working very well. We come "home" to my Mom's on Sunday right after church and then leave our Thursday afternoon, take the kids to music class, and spend the weekend at "home" in the country.

We are finally starting to get into a good groove and a routine. But with doctor appointments, school starting, the move, and my husband's job, things have been nuts. But the final calming of the insanity is nice.

Who knows what tomorrow brings with this set up. We are helping my Mom in many ways, and I hope it will be a long term thing so she doesn't have to make bigger decisions on living situations and how to be cared for. We did similar to this when my grandmother had Alzheimer's (she moved in with my Mom, but she was cared for by family). We moved to our last home to help care for my father-in-law so he could stay home instead of having to go into a nursing home. It's just something we believe in as a family. If possible, care for family. I will say, I hope my brother and his wife can move back to our state eventually. That would give some help if she gets worse or never gets better.

The G Word

This has been a crazy, crazy time in our family. We have found new answers to old problems and our world has kind of exploded. But, before I get into all of that, let me back up to the beginning. WAY BACK ...

Our older son stopped feeling hunger about 6 1/2 years ago. It started slowly with just a lessening of food at each meal. Then came the "I feel sick in my neck" comments. It got worse until the obvious thing happened, he ended up with a feeding tube.

We tried feeding therapy and he graduated. I was told the sensory side of his issue was taken care of, but you can't fix "hunger" via therapy. I didn't understand why our son didn't care if he ate, felt very little hunger, and refluxed so much.

As we were moving through this time the exact same thing happened to our younger son. That was it. This made no sense. One day he ate a full meal, the next he didn't. What was going on? I started to research even more. Nothing. I found nothing that really fully explained their issues.

Our GI ran the tests she should. We had scopes, swallow studies, x-rays, gastric emptying scans, the works. Everything was clear for the most part. The things that weren't didn't cause this issue. We had almost resigned ourselves to never knowing why our sons didn't eat.

ALMOST!

Then one day, about 7 1/2 weeks ago, our older son got sick. We ate at a restaurant, he had a milkshake, he got food poisoning. Oh it was fast and bad. That lasted about 2 days. But something odd happened. He stopped being able to keep food down. Yes, he had thrown up with the food poisoning, but this new throwing up was different than that. I couldn't explain it, but it was very different. I called our GI after 5 days of it and said we needed to be seen. We came in, she took a look at him, asked lots of questions, and said she felt he had "post infectious gastroparesis".

OK, let's stop there. What does this mean?

Post-infectious is pretty simple. It simply means after an infection. It can also come with non-infection issues, but means it's tied to a cause (like our son's food poisoning) and is very often short lived (meaning acute, not chronic).

Gastroparesis that's a bit harder. Gastroparesis is literally paralysis of the stomach. It is a disease where your stomach doesn't empty after having a meal. This can be for only a few hours, or it can be days that the food sits there. Each person is different and sometimes each meal is different.

Now that we understand what our GI just said, let's keep going. She decided to put him on a motility medication to help the food move from his stomach into his intestines in a more normal manner. She said we would come back in 6-8 weeks and see where we were. Great. See ya then, doc!

Except I am not one to just "see ya then, doc" and forget about it. I came home and did some research. Since this would be a short term gig, I didn't put a lot of time into it, but I wanted to know more. Wow. I started to read about Gastroparesis and my mind was blown. This sounded EXACTLY like our son. It sounded like his issues from day 1. I remember his huge belly, his early satiety, his reflux with every meal, his inability to tolerate fatty meals or lots of fiber, the list goes on.

As we watched the medication work like near magic, my husband and I started to have discussions. I asked one day, "what if this isn't a new disease? What if this is what he's always had and this food poisoning just made it worse so we could find it?" He said it sounded logical. We couldn't deny what we were seeing with the meds.

I emailed our GI and asked her if our thoughts could be right. I figured she would kindly tell me I was nuts and move on. I mean we had a gastric emptying scan (not done to standard I now know and not a great indicator in children). She didn't tell me I had gone off the deep end. She said she would actually consider it after we saw what our son did while on the trial of medication.

I researched even more and learned about lifestyle and diet changes that are common with GP. We began to implement those on our own. They were simple enough that we didn't need medical input. He just got better with each thing we changed.

We then decided to go really rogue and approach her about our younger son since his symptoms were so similar and the outcome the same (feeding tube due to early satiety, reflux, etc). We asked if we could simply do a trial of the medication before we came back in to see her. She quickly agreed that it made sense with his symptoms and we started him that day on medication.

We finally had our follow up appointment and spent a lot of time telling her what we saw, what changes had happened, etc. She couldn't deny our older son's weight gain either. He grew taller and gained weight in that trial period because he was finally actually digesting and using his food. It was shocking to see. Our younger son weighed more than he ever had before. Getting weight on him had been so hard.

We walked out with a new label, one that fits their issues so well. Our sons have Gastroparesis. This is not post-infectious like we first thought. It's simply Gastroparesis that was worsened during a health issue which enabled us to find it.

Are we happy our sons have this issue? No. Absolutely not. It's not an easy one to deal with. I am learning new things about how to help them each week. BUT, and it's a big one, they had SOMETHING. Not having a name didn't make that something go away. It just made it nearly impossible to treat and really hard on us as we saw our kids health doing poorly. Knowing a name allows us to say "aha, there it is, this is why we were seeing this". In this case it also allowed us some treatment options we didn't have when we didn't know what was causing it.

There is no cure for Gastroparesis ... yet. Medical science is learning new things all the time. The natural side of medicine is always growing in knowledge. I hope one day there is a cure.

But, until then, we are treating our sons and they are doing so well. No, they are not fully eating by mouth. Not even close. But the medication isn't an appetite stimulant. They weren't hungry because their bellies were always full of food, even hours after eating. But, some of the changes we have seen are incredible. Instead of giving our older son a tiny bit of blended food and him getting nauseated or refluxing, he can have a bolus of an entire meal comfortably. Instead of having to give him one meal over many hours via a pump with his tube, he's having a meal in 30 minutes via a syringe in his tube. Instead of our younger son saying, after only 1/4 or less of his tube feeding, "Momma, please stop, I am so full. I feel like I am going to be sick" he's feeding himself his blends via tube and finishing the whole meal.

We are in a really good place right now. But, I know with GP this can all change. We can see worsening of symptoms, changes in symptoms, meds can stop working and you need something different, etc. We have already seen that with our younger son. We had to add a bedtime dose most of the time for him because he was massively urping up after laying down, no matter how early we had eaten. Our GI said this isn't uncommon and to add that extra dose to help him at night time. Worked like a charm.

We did do some diet changes. For example, all carbonated drinks are gone. ALL of them. High fat foods are gone (red meats are the hardest, our older son doesn't do well with them. That made no sense to me before this diagnosis). We spread our sons fats out during the day. We also walk after a meal, don't lay down for a good hour after eating, the list goes on.

So this is life now. It's always an adventure. But we are so happy to have another piece of the puzzle that helps us understand our kids.

Feeding and Sewing - Reality

It's hard to be real. I mean, there are messes when we do real. But, this week has been one very deeply rooted in real.

Last Friday Charlie Brown got food poisoning. We decided to go to a burger place while we were out doing things and allowed him to get a chocolate shake as a treat. On the way home everything he had eaten that day came back up ... on the side of a dirt road ... in the middle of nowhere. Sigh.

At first we figured he had a stomach virus. Then, while working on Saturday, one of my husband's coworkers mentioned his son was sick and had thrown up the previous afternoon like our son had. My husband jokingly asked if he had, by any chance, eaten at the same restaurant (we live an hour from it, he lives in the same town as the burger place). Wouldn't you know it, he had. To top it off, his son had a chocolate milkshake as well. Both of them were the only ones in their family to have a chocolate shake. Mystery solved. Food poisoning.

They called Teledoc to get Phenergan and we went the homeopathic route. Saturday, after they had both gotten sick a few times we both got meds on board and both boys had happier tummies.

However, things aren't that easy in our home. When you have a child with feeding issues already, you don't just bounce back and start eating again once the nausea and vomiting leave. He lost all sense of hunger and hasn't gained it back. Thankfully we have tube feeds and off we went. We started just like if a child had no tube and introduced basic simple items, then got more normal as he held them down. He did great. No nausea at all. Just no hunger either. Yesterday I did a slow tube feed over the entire day for his calorie intake. Not bad. Until supper. He suddenly felt over full. He went to lay down and this is when things get realer than real.

If you don't have a tubie, you don't know the joys horror of how to help. You do a tube feed in reverse. Yep, you pull the food from the tummy instead of putting the food in. I hate that part. UGH! He hates that part. Double UGH! It doesn't hurt, but you can just imagine what it looks like and smells like. Yep. I pulled 10oz off of him. I don't know why he had that much in his belly, but he had stopped digesting quite a while before if 300ml was still in his belly. (there was more, but I stopped there) He felt so much better. He got up, his face pinked up, and he asked for food. I laughed and told him I had just taken dinner out of his belly, was he sure he wanted to eat. Yes, he felt great, he was STARVING. OK, first time we felt hunger so let's roll with it since I knew he only felt icky because of too much food in his belly.

He ate.

He brushed his teeth.

He got his pajamas on.

He hugged us all goodnight.

He went to bed.

He threw up everything he had for dinner plus the food that was left behind from my adventures.

ARGH!

This morning I decided to go low and slow. I gave him 150 calories over a longer period of time. Worked great.

Then it was time for a second feeding. I gave him 2 1/2 syringes full (each is 60ml) and he got sick. Seriously? Before Friday he could have 350ml in a very short period of time without blinking an eye. So we laid him down, asked if he wanted us to pull it from his belly instead of throwing up. He wanted to wait. He felt horrible but it finally passed with just a few very nasty burps.

And THAT, folks, is the reality of a tummy bug with a kid who has feeding issues. I don't know when his sense of hunger will return. I don't know when he will be able to tolerate more volume of food. It's all a mystery.

And that leads me to sewing. This reality of life isn't nearly as UGH worthy.

I picked up a robe pattern for my sons. Yes, in the summer. Yes, where 100 degrees in the summer is a nice day. Yes, in a part of the country that does NOT have a "dry heat". They are all about their robes. They love robes.

Photo Credit

Cute, simple, and yes made of warm fuzzy fleece (I will give you a minute to wipe the sweat from your brow as you think of fleece during the summer).

But this is the reality of my sewing area as I looked at all the pattern pieces, measured the boys with my tape measure to find the size they needed, held up pattern pieces to them to verify the size, and more.

And, yes, that is BB-8 fleece for the robes. The boys love BB-8 and this was on clearance at my Walmart for $2.00/yd. 

The mess will leave, eventually, just like the tummy troubles. But, right now, I feel neck deep in mess. Reality. Hard to show but totally worth it.

Cute Reusable Bag Pattern - Free

I had some small pieces of fabric left over from other projects and I wasn't sure what I wanted to do with them. However, when I saw this free market bag pattern from Stitch Upon A Time, I knew I had found the perfect project for my scraps.

Photo Credit - Stitch Upon A Time

Come on, how cute is that? I downloaded the PDF pattern and printed it. By the way, let me stop here. PDF patterns ... have you heard of them? They seem to be all the rage with those who sew. Cheaper than patterns, many times free, lots of options, just a great idea all around. This was my first PDF to make, though I have a few on my computer waiting to be used.

Back to the story. It said it could be made in 30 - 60 minutes. They weren't lying. If you add in the time it took me to tape the pattern together, it was just at 30 minutes total. The best part is, now that I have the pattern together, I can skip that on all future bags. Yes, there will be more made.

The best part is, I finally, finally, FINALLY got to use my new serger. I will admit to being a bit intimidated by it. But, I figured a bag was about as basic as you could get and, if I messed it up, big deal. I didn't mess it up. Don't let that scare you off if you don't have a serger. You can totally do this with a regular sewing machine. You will notice red and yellow thread. My serger came with thread already loaded and I didn't feel like rethreading the machine. Since it doesn't show, I just used the 4 colors that came with it. As my younger son said, "that's a good idea Mom, free thread".

How cute is this? I made one of my jeans to skirts out of this fabric and has almost exactly how much I needed left. The tiny piece I had left over is now in my scrap bin and will be used for something cute once I get enough collected. 

I could't be boring and just have that floral print. Inside is a coordinating color. You could EASILY make this reversible with just a bit of forethought on how you put your handles together. That's the only part that shows any seams. 

This bag is a lot sturdier than I thought it would be, especially since this is just a cotton fabric. I will be making more of these with non-scrap fabric. My Walmart is having a big sale on fabric right now and I just happened to see a cute pink bolt that was thicker and would make a wonderful bag (or three).

Skirts From Old Jeans - The Video

Don't you love it when you get an idea, figure it all out, and THEN find out YouTube has videos that show you step-by-step what to do? No? I am the only one who forgets the great and wonderful Oz that is YouTube?

The skirt that I made the other day is super easy, but you might want a video to see it actually going together. I found two that are good.

This first one is done with two pairs of jeans, but you simply skip the second pair of jeans (hey, make a second skirt - woo hoo) and use fabric instead (or use the second pair and go totally denim!). My only advice on this video is to ignore her when she says you can't use skinny jeans. My first skirt I made was using skinny jeans and it totally works. You just need a little bit more fabric.

Next is a video of a Mom (I think I heard a little in the background) making a skirt with fabric like I did. It's short but she shows you how it's done.

You should know, I have become a massive fan of this process and how these skirts fit. I rummaged through my closet yesterday to see if I had any more jeans that I could deconstruct in this manner and found a set that the rise has always been a bit shorter than I liked. With a skirt, rise doesn't matter! I spent a bit of time after my kiddos went to bed and ended up with a second skirt that's fuller. My first set was made from skinny jeans. This set was using wide leg with a fun accent on the pockets. 

Do We Call Them Jerts?

I have a pair of jeans that are the best. Oh, they are soft, fit me like a glove, move how I move, and are like buttah (in my best Jersey accent). It's like they were custom made for me.

Then I dried them in the dryer a few times, instead of hanging them up like usual, and they shrunk in the length.

No biggie. I wore them with cute flats and pretended they were supposed to look like that. I LOVED these jeans.

Then I lost over 25lbs and they fell off of me ... quite literally.

OK, time to toss them in the donate pile.

Or should I?

Instead I decided to make a skirt out of them.

Here's the process I am going through, all I have left is to stitch them and I will have my finished project.

Step 1: Lay your jeans out and find the inseam. Starting at the ankle, cut up the seam just to the INSIDE of the natural hem that's already sewn into the pants. You can see me doing it below. Yes, you can seam rip, but it's just not as pretty, doesn't give you the same finished edge, and it a lot more work. Scissors take a few minutes. Cut right around the crotch (know there's quite a bit of fabric there, so use quality fabric scissors) and down the other leg to the hem.

Step 2: You will have a place like the below picture where the crotch met the zipper/rise. If you don't not alter this, you will end up with a funky pokey out part (yes, that is a word, just don't look it up in the dictionary - lol). So, you need to cut that to the LEFT of the seam the way you did the inside of the seam on the legs. You want that nice finished seam showing. Repeat for the back or you will have a tail.

Step 3: Once you make this cut, lay your pants out and smooth them out on each side, front, and back. It doesn't have to be perfect for this next part, just flat. Your jeans will look odd now, like they aren't quite finished. This is what you want.

Step 4: The piece you just cut under the zipper is important. You want to now lay the right side (the one with the pretty finished seam) over the left. Make sure it's very flat. If you have a small pucker, cut a tiny bit higher (do a little at a time so you don't have to sew extra). Do this snipping until it will lay nice and flat. Pin the flap down. Repeat this in the back with the flap you made there. 

Step 5: You need to have a contrast fabric. You can also use another pair of similar jean and just cut the legs off as close to the back pocket as you can, cut down the leg the same way you did with this, and use that open flat piece as your fabric. You can have fun with this. I chose a nice color similar to my jeans so I could have a lot of options for shirts and accessories. But chose a funky fabric, a contrasting color, whatever suits your style. 

Either way, cut a piece of fabric bigger than your opening and make sure it's long enough for a hem. How nice it is does NOT matter. You won't see any of it so no biggie. Lay it in the opening and smooth everything out. You want to pin it all the way up and around. Start at one hem at the bottom, pin it up and down to the other hem, making sure it's smooth with no puckers. 

Step 6: Do you see the jeans factory hem going down both legs on the front and back? You will want to follow that hem. Just stitch right over their stitching. You have a few choices. You can use the jean thread that comes on most jeans, choose a blue thread so it blends in, or choose a funky color if you want that exposed stitching to show. I will be using navy as I want the jeans and fabric to be the star.

Make sure you stitch down the flap you made cutting below the zipper and you are ready to hem. all you need to do is hem the new fabric. The rest is done for you since the jeans are already hemmed. If you have used a second set of jeans to make the entire thing denim, you don't even have to hem. You are ready to go onto the final step.

Step 7: Hem your fabric. this is the part I do not have finished yet and will have to show you once I take a picture of my entire skirt on me. You simply want to fold up the fabric, pin it to the length you need to match your denim, and hem it with a coordinating thread. I will be using navy since it matches my denim and also coordinates with my print fabric. 

That's it. You are done. You have made a skirt. This can easily, easily be done in an hour. Imagine the possibilities. You could find old jeans second hand and have a fun time making a whole new wardrobe cheaply. 

I popped around the internet to find you some inspiration. Check out these cute skirts. 

Mother's Day Again

My husband's plans for my mother's day present fell through ... hard. But, I am not so sure I am upset about it. Because of that, this little beauty is on it's way to me this coming week. I already had 7 projects in the works for it. 

Photo Credit

It's been years since I used a serger. I won't tell you the exact number, but it involved a high school home ec. course. I am excited and nervous all rolled up into one. I will be practicing and figuring it out for the first few days, that's for sure.

If all goes well I will have a few projects to show you soon. If not, just look for the crazy lady running down the road with old pieces of thread and bits of fabric trailing behind her.

Mother's Day in an Alien Land

Before I was convicted about some of my movie watching, I saw Twilight. I remember a scene where Bella and Edward and his brother were trying to get her to safety. They were driving in her truck running from a very dangerous situation. She looked out the window to see, in slow motion, her high school friends all coming out of a local coffee shop/diner. They were happy, laughing, just going on with their typical teen lives and she felt so outside of that, so removed from it, like that was her life and now this is. She felt alien to it.

That's so often what it feels like to be a special needs Mom. This weekend as families celebrated mother's day with flowers, fun meals, laughter, and more. I was giving my child with pale skin and huge dark circles under his eyes a breathing treatment trying to help him stop coughing so hard he couldn't breathe. I was giving him tube feeds because food just wasn't in the picture. I saw Moms, as I went to the pharmacy and the ER, laughing with their kids, walking with them, wearing cute skirts, and just having a wonderful weekend. I don't wish they knew this life. I am glad they have THAT life. It's just that it feels so alien to me to see such a relaxed situation, such ease, and I feel so removed from it.

Even when we were in the ER I saw parents bring in children with some typical pains and illnesses of childhood (a young girl got hurt on the soccer field, a young child woke up with a little fever and a slight cough but he was young and Mom was nervous, and a third child had a rash). I pray each of them feels 100% better today. But even then I felt so removed. I was wondering if the hospital had medicine that was safe for my son (sometimes they don't). I was contemplating how to get the medical food to the hospital because I DEFINITELY knew they didn't have his medical food for his tube feeds. I was praying we had a doctor/nurse/staff that wouldn't use the N word (needle) because that would set him off and I needed to prep him for anything that would hurt. I prayed he wouldn't beg me, AGAIN, to not "let them do this to me Mommy, please." because my Mom heart couldn't handle it.

I love my boys, as they say, to the moon and back. I adore them. I would walk this journey with them for a thousand years if that's what they needed and I had the ability. But it just seems the world keeps on turning, people keep living and breathing and smiling and laughing, and wearing cute dresses with kids in matching outfits and I am walking around with a thousand thoughts in my head wondering if anyone notices the medical food I spilled on my pants that morning as the med port of the extension popped open.

I am not looking for sympathy. It's just the feelings I have each day. I am so grateful I have a God that loves me through these raw feelings, these feelings of being so removed from reality and gives me strength to face another day of it.

Book Recommendation

We have started to use some homeopathy in our home with our family. So far it's working well and we are appreciating the effects we are seeing in our health. We have addressed this two-fold. We are using a homeopath that we feel comfortable with her methods and we have a "self-care" book that helps us with acute issues as they arise. (headaches, stomach problems, injuries, etc)

I really like how the book I chose is set up and think its explains everything well to the common user and makes finding remedies very easy. Thus, I wanted to share it with you. It is called Homeopathic Self-Care: The Quick & Easy Guide for the Whole Family by Robert Ullman, N.D. and Judyth Reichenerg-Ullman, N.D., MSW

I hope you will enjoy this book as much as I have. Click on the picture to take you directly to an Amazon page that sells it. I get no money if you look at it/purchase it from the link. It is just provided for your ease.

Sleep Issues

From the day we brought little Linus home, sleep has been an issue. When he was an infant we would work for a solid 2 hours to get 30 minutes of sleep out of him, only to have him wake again and we would start the process over. He barely slept. Oh, I don't mean the typical baby issues of sleeping a bit less than their counterparts. I mean he BARELY slept. I don't know how you can survive off such little sleep. I should know, I slept less because I had to get to sleep after he went to sleep.

It moved to the point he couldn't sleep without touching me. Not Daddy, not big brother, not anyone else in the family or outside the family ... me. I wore him during the day a lot, just to give my arms a break.

We finally moved to sleeping in our bed even if he wasn't touching me. I worked and worked with him, trying to teach him to sleep on his own.

We put him in his brother's room, thinking company would help.

Nope.

We put him in his own room thinking he need to be alone.

Nope.

We put him in our room to go to sleep and then carried him into his own bed.

Nope.

We tried it all. We bought fun bed tents, sleeping bags, pillows, toys, no toys, special books, fun sheets, anything and everything to help him sleep in his bed.

His anxiety always won out.

We gave up for quite a while and just said sleep in our room. We were tired after years of trying. It wasn't getting us anywhere and I think we all just needed a break.

We worked on the anxiety and learned what caused a lot of it. We started to heal that. That was hard since it wasn't from a trauma, experience, or other situation where traditional therapies or meds could help. It was from food and that's hard to even diagnose, much less treat.

Finally we decided it was time to try again. But we knew just saying "stay in your room" would not work and we would doom ourselves to failure. We weren't sure how to proceed.

One morning we woke up to find our older son had pulled one of our camping cots out and had slept in the living room. He was just uncomfortable in his bed the night before, not sure why, and came up with this solution. It also gave me an idea for Linus.

I asked him if he wanted to sleep in the living room with big brother on camping cots. I told him we could work on getting him into his own room this way. I also offered a reward. I told him I would pay him $1/night for 7 nights if he could sleep outside of our room. He was all for it and big brother thought it was going to be a fun week of sleeping on cots in the living room. Win-win. We told him our bed was available if he needed it, but to try his best, that's all we asked.

Night one came and went ... no Linus in our bed.

Night two came and went ... no Linus in our bed.

Night three, four, and five, same outcome.

On night six I suggested maybe a bonus if he slept in his own bed. I told him $2 instead of $1 if he did this. He tried. He couldn't. I told him no biggie. He still slept in the living room so he got his $1.

Last night was night seven. He asked if the $2 deal was still offered for sleeping in his own bed. I told him it was. He said he wanted another chance. I think he just needed that extra day to really wrap his mind around this new change of bed location. I pulled the cots into the living room, but kept them folded against the wall. He could open them up if he needed to and sleep in there. He likes a safety net.

I will just say this, Both boys are sleeping and I am in the living room typing this post. Yep, he was successful and I am out $8. It's the best $8 I ever spent.

He doesn't know it, but the next offer will be different. He will get $1/night for 7 nights if he sleeps in his own room this next week. After that we will move to $1/2 nights, and then $2 for the whole week. We have used this type of reinforcement before with him. It's been successful when he's ready but still having a hard time with the transition. When things get uncomfortable, the temptation becomes strong, he has something tangible to help him move past it.

I am hoping for a good report when he wakes up in an hour or so.

Well That Was A Fun Break

I had bigger plans for the Autism Awareness Month posts but life went very wonky.

Photo Credit

My brother, for those that don't know, got married last weekend. A few months ago his beautiful bride asked me to be one of her bridesmaids. I happily agreed and we decided just I would be going as it's half way across the country. Long story short, my brother really wanted my entire family there and we all ended up flying out to be with them. Longer story short, one of the reasons he wanted all of us there is they wanted all of us in the wedding. Yes, this means I got to see my handsome men in tuxes. You can't beat that as a wife and Mom.

Being the wonderfully Pollyanna, positive .... naive self that I am, I misjudged just HOW stressful this would be with my kiddos and had my plan of attack for packing medical supplies, how to handle the trip, etc all set out.

Yep, we all got sick before we left. I was supposed to head to my Mom's the weekend before we left because said brother was coming into town for his bachelor party and wanted one last visit with us. (bachelor party consisted of his groomsmen playing old vintage video games and poker together - lol)

Too sick.

Did I mention my bridesmaid's dress had been messed up by Nordstrom's and I needed to get back for what should have been a final fitting (should have is the operative word here)? I needed to get outfits for the rehearsal dinner for my guys. Yep, canceled.

So, I had to nurse us all back to health, including me, and get out the door within 24 hours of feeling decent enough to get out of bed.

This means I had to pack 4 suitcases, 2 large backpacks, and my purse all to carry on. I couldn't risk any of it getting lost, not with my bridesmaid's dress, shoes, rehearsal outfits and shoes, medical stuff,, emergency medical kits, and more. Nope, just not an option to check bags on this trip.

I managed to get it all done, have my third set of correction alterations done on my bridesmaid's dress (I was kidding when I said they kept messing it up and in the end it still was very wrong), have a mani/pedi, and get to the airport 2 hours early like we were told to do.

Only the flight ended up being 2 hours late.

We waited what seemed like an eternity (really only 4 hours) and finally boarded.

It was a wonderful weekend. We go to spend a lot of time with my brother since, well, honestly, he's the groom and only had to pick up his tux. The bride was busy with last minute planning with her coordinators, so we spent that free time with him.

We saw Grauman's Chinese Theater, took pics of my boys pretending to steal John Wayne's footprints in the style of Lucy and Ethel, saw the walk of fame and I took my picture with Vivian Vance's star, took pics with the Hollywood sign, went to Hermosa Beach and saw a school of dolphin playing right off the pier, and more. 

Needless to say, I am back and we hit the ground running. We were wiped out from our trip (got about 4 hours of sleep each night because of fun activities tied to the wedding). I had to shop for food (for some reason my guys still want to eat) and yesterday we started final work on the goat pasture (started, did not finish). 

Oh, and to throw another "relaxing" (read insanity) moment into our month, we decided I should go to our state's homeschool convention next weekend. Why plan? Just go with it. 

And THAT, dear readers, is why I took a bit of a break from blogging suddenly.