Monday, September 18, 2017

Weighted Blanket Giveaway

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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. 


Sunday, September 17, 2017

When Mom Is Sick

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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. 

Tuesday, September 12, 2017

Tracking Problems

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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.

Monday, September 11, 2017

Short and Sweet

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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.


Wednesday, August 23, 2017

New State and New Changes

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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.

Sunday, July 30, 2017

The G Word

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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.




Tuesday, June 13, 2017

Feeding and Sewing - Reality

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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.
 

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