Home Again, Home Again, Jiggedy Jig

I am back. No, I didn't just get back. I was done Sunday but I was worn out mentally, then needed to just spend a lot of time with my family as the kids didn't like Mom being gone so much and poor hubby had a whole new view on my day-to-day doings while he's gone at work. 

However, I have to say it was 100% worth it. This was an incredible weekend of learning, understanding, and big changes in our kids lives. I have so much to share, far too much to share in one post. But, information I learned this weekend will leak into my posts as the subject warrants. I won't keep it to myself, no worries there. 

So, first I should start with where I was. I attended the 2015 Autism Education Summit put on by Generation Rescue. 

From here

It was 3 days of intensive learning from some of the top names in the Autism community. I got to hear, and personally speak with, the likes of Dr. Dan Rossignol, Dr. Jerry Kartzinel, Dr. Richard Frye, and so many others. SO many others. They not only spoke but were extremely available during their sessions to ask questions and seek help from for your child. Yes, I took advantage of any time they had to pick their brains and they all pointed me in single direction on one of our big issues and helped with some of our other issues. 

I have notes to go through. boy do I have notes to go through. I took so many it felt like a cram session for an entire semester at school. Our kids have already reaped a few benefits from my time there, and these have been awesome changes. I am talking complete 180s on a few things. I will be sharing those this week hopefully. 

I got to meet up with a few friends who I haven't seen in ages. I got to meet new friends from online support groups I am a member of on various boards. I learned a lot about the legal front and the political front surrounding Autism and the biomedical community. I sat next to Donnie Wahberg at one point. (if anyone is a fan) That was my weekend in a nutshell. It was an incredible experience but I am also so glad to be done so I can bring that education home to my family and get back into our daily lives. 

Talk soon!

Short Break for Some Education

From here

I won't be on a lot this weekend. That means I will probably not finish our story about starting this journey until next week. I am going to be attending a 3 day education summit on Autism. My brain will be too full and my schedule too busy to think about the blog part of my life for a few days.

I hope to share some of what I learn when I return. And yes, I will finish our intro story.

Have an awesome weekend. I know it's only Wednesday, but part 1 of our trek starts tomorrow, so I am bidding you adieu now.

I will leave you with this parting gift. Below is a list of a few sites to help you reduce toxins in your home.

Guidelines for Non-Toxic Living - Concise list of changes you can make, some slowly and some right now, for a healthier home and body.

Home Safe Home - List of very simple things you can do now to change your environment in your home and your body.

Live Toxic Free - Check out her "Shop" link. It's full of great websites with products that are safer options.

How I Got Started on This Path - Part 3

From here

To read the first two parts of this story, click on these links: Path - Part 1 and Path - Part 2

We went home, huffed, and put our oldest son in PPCD. We went through and IEP/ARD. We did all the paperwork, bought him his little school supplies, and sent him off to be with other kids like himself.

We called ECI and set that up for our younger son. He needed a lot of help and they could come to our home to give it to him.

But, honestly, I never was happy with PPCD. You see, my husband and I always wanted to homeschool our kids. We discussed it before we got married, discussed it even more before we got pregnant, and it seemed so sad that it wouldn't happen. But, the experts said to put him in PPCD so we did. But, as we saw what was going on in PPCD, the lack of therapy (he got 19 minutes/week of group speech therapy and nothing else, even with his other issues), and the disruption to our family's natural flow, we started to question it. I finally asked my husband WHY he had to be in PPCD. What was he getting there that we couldn't give him. And THAT was my step into a more toxin free life. I questioned those who were "in the know". Yes, it started out that simply and quietly.

We decided there was nothing they could give that we couldn't, and we even dared to suggest we could do it better. I was so happy the day I pulled him out of school. We brought him home and I started a mad search for therapy options. We found that. I started to try and figure out what he needed on a daily basis. We figured that out.

Time rocked on and I started to research more. The more I searched the more I found. The more I found, the more we changed. We looked at the medical care we were receiving. I learned about something called biomedical approach in the Autism world and we visited our first DAN (Defeat Autism Now) doctor. That was a huge, massive eye opener. Through it all I told no one what we were doing. Again, I wanted that unbiased eye on our sons development. We started very simply with things like Methyl B12 (MB12) injections. 10 days into treatment our older son said his first words in over a year. He looked across the room towards me and said, "can we take a picture of that". I about hit the floor. I thought I was dreaming. I honestly asked him, "what did you say". He looked at me like I was the one with a comprehension problem and said slowly, "can we take a picture of that". I called hubby in almost a panic. Something was working. People at church, my Mom, family, all asked what we were doing, what had happened to change him. It wasn't just us, he was really doing better with a simple vitamin.

We added more items as tests came back showing us which direction to go. Our younger son was harder as sticking him for blood was pretty much impossible. His veins were so thin, so deep, even NICU nurses attempted and couldn't do it. It was a mess. He was a mess. But we rocked on with no sleep, screaming all the time, and the only relief we found for him was if I wore him in a sling. He wanted his face covered mostly, to be held by me, and to be rocked gently as I wore him. It was his only relief.

For those who have a kid like this, you know where that was leading. Yes, he has Sensory Processing Disorder. But, at the time, we had no clue.

We had a DAN doctor now, we had a pediatrician who used homeopathic, natural, and traditional helps. We felt like we were, at minimum, in good hands with medical care. We were going to homeschool, so we knew educationally we were set. We had therapy going for our son, so that was all in order. Life was good.

Yeah, you know that means the other shoe will drop soon.

Read part 4 of our story later this week.

How I Got Started on This Path - Part 2

From here

You can read part 1 of this series by clicking on this link, Path - Part 1.

So, we still had a child screaming and crying all day, he wasn't sleeping, we couldn't bathe him or dry him off without screams of terror happening, and we had a toddler who wasn't talking, was running for hours a day, and was disengaged from life. We were surviving by the grace of God and that's all because it was a mad house.

To make it worse, no one would listen to us. Oh, they saw the issues. You couldn't miss the issues. It was like a 3 ring circus was walking into the doctor's office anytime we showed up, complete with me looking frazzled, sweating to beat the band, and slumped over in defeat. But, no matter what we were told it was fine. They were fine. Some kids slept less (he was sleeping 5 hours a day total as a newborn and that included all of his night time sleep), yadda, yadda, yadda.

Finally I had it. I decided something had to give. It was either going to be me or this situation and I was praying it wasn't me. So, I started to Google.

Let me stop here and tell you something I have learned. People will tell you, "don't be Dr. Google". You know what, ignore them. If they won't help you figure it out, they don't need to be the one to stop you. Yes, research with care, don't throw out logic, and really read what you are finding, but yes, the internet can be a life saver.

One day, as I sat in my chair, two kids sleeping for a few minutes at the same time (which never happened), I came across a list of symptoms that was 100% identical to our older son's issues. I told my husband, "I think he has Autism". My husband, a huge support normally, said in a very passive voice, "no way, I have seen kids with Autism. He's smart." I dropped it. But that feeling never left me. The more I researched the more sure I was. So, I decided to take a different approach with him. One evening I said to him, "oh, listen to this" and read him a list of symptoms I had found. He jumped up, yelled before remembering we had a sleeping baby, and said, "that's IT! That's what he HAS! What is THAT." I turned to him very slowly, and with a steady voice knowing he was going to be hit with a 2x4, I said, "honey, that's the symptom list of Autism". Yes, a 2x4 landed square between the eyes. He was silent as it sunk in. His son had Autism.

That was all I needed to get going. I decided to find out who tested for this type of issue. I first went to our Neurologist and told him something was off with our son. I never said what I suspected. I wanted an unbiased mind looking at him. He did a bunch of testing, a lot of looking, and talked to me for what seemed like forever. He shut his file, looked at me with that look of pity and said, "your son has Autism", and then he waited for it to hit me, tears to flow, and for the barrage of questions. I sighed, took a deep breath thinking, "Finally someone gets it" and asked him one question, "OK, what do we do next". He looked at me, stunned. He asked if I understood what he had just told me. I assured him I had, I wasn't shocked or going to cry because I was just waiting for someone with the right letters after their name to finally see it. He gave me a list of things to do, told me to see a Developmental Pediatrician for diagnosis confirmation, put him in PPCD (special needs preschool at the local public school), and that was all I could really do.

I walked out holding that tiny little hand, shed a few tears for the exact length of the sidewalk, stopped, looked at him, and that was it. I was determined this was not our story and not how this would end. I didn't know what could be done, if anything, but I was going to help him be the best little boy I could, no matter what it took.

We saw the Developmental Pediatrician with both of our sons. She did so, so much testing, a lot more question asking, forms to fill out about everything he ever did or would do, and she confirmed what I knew before anyone else, he had Autism and she had no clue what was wrong with our younger son but there was definitely something.

We walked out hearing the same recommendation, "put him in PPCD, it's all you can do".

I will continue our story with Part 3 soon.

Less Toxic Tube Feeding System

This was inspired by some women on a feeding tube support board I am a part of on Facebook. We started discussing what was in the bags that our kids formula and tube feeds were sitting in all day and night. Brainstorming started on many ends. My husband and I have been working on this plan and I finally have a workable model.

I am going to share the parts with their part numbers (for those parts that have them) and then how I put it together. This will allow for about 250ml of formula or blended food to be used. I am currently looking at 3 or 4 larger bottles that will hold 600ml or more for longer feeds. But, I haven't received those or tested them, so I am waiting before I share it as I don't want anyone to waste any money on useless parts.

There will be a lot of pictures in this post as I don't want confusion from merely writing names or descriptions. Forgive the quality of the pictures, I used my cell phone for speed.

Supplies

First I purchased an insulated beer bottle koozie. I found this at Walmart and it cost $1.00. There were a few color choices if your kids would like to choose a color. Make sure it's the type with a zipper. 

Then I purchased safe baby bottles. It needs to be a narrow neck, not the wide moth variety. You can also find bottles this same size that aren't baby bottles per se, but you must make sure the threading starts at the top. Many have a gap of smooth glass and then threads. That will not work. Amazon is a great source for lead free glass baby bottles. This is just a sample. You can use Dr. Brown's glass bottles, Lifefactory glass bottles, and more. You just need to make sure it's the narrow/standard mouth.

Now, this is where specialized pieces come into play. You will need to purchase a Kendall Kangaroo Safety Screw Spike Adaptor Cap. I purchased mine from ADW Diabetes. You don't need a prescription. They cost $1.92/cap. You can buy singles, multiples of 4, and boxes of 30. Your DME can also most likely get these if your insurance covers your feeding supplies as they are feeding equipment. 

ADW's part number is: 61775762

Kendall's model number is: 775762

This exact design is important. Notice the tall opening port and the small hole? The port is for the next part I will tell you about. The small hole is to allow air pressure to normalize for flow of food. 

Last is the tubing. I purchased an Enteralite Spike Right with Proximal End Connector. You can get this two different places without a prescription. ADW has them for $3.39/tube and Vitality has them for $4.20/tube. 

The pictures are misleading. You will see bags, tubing, etc in the picture but you will only get the Spike Right set, so no fears. 

Part number for Vitality and ADW is: 12223318

 This tubing has all the connectors and the cassette for your feeding pump to work properly.

This is what the end looks like. You will see why this is important in a minute. 

So, those are the parts we need. Total, for one complete set up, I paid $8.62. However all but $3.39 of that is reusable so you wouldn't pay that each day. And, $6.12 of that is medical equipment that you could go through your DME for, which should be covered by insurance. The bottles and koozie are reusable for an infinite amount of time and they account for $2.50 of the total cost. 

Now, let's move on to how to set this up so we can actually do a feed for our child. 

Directions

It's time to put this all together. This is very simple and very quick.

• Remove the lid from your baby bottle. I tossed mine as I will never use them since we are far past the baby stage in our home. Pour your formula/food into the bottle. 
• Screw on the purple spike cap and close it tightly. 
  
• Next, place the spike end of the tubing into the open port (the tallest and only open one on the purple cap). Make sure to screw it on tightly as well. 
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• Put the bottle into the insulated koozie. Zip it up and you are done. 
  
  
  
  

This is where you have some choices and decisions to make. You can use a backpack if you have one and slip the insulated covered bottle into the bag holder. I have a Kendall Joey backpack (not sure why the DME gave me that since we use an Enteralite, but it works great). It has a clip like the picture below. Fully extended (it's adjustable), it holds this contraption I made above perfectly and it doesn't move or slip. 

From here

You could also attach a piece of fabric or woven belt type material to the insulated cover and hang it from an IV pole (or whatever you hang your bag from now). You could accomplish this a few ways.

• Sew it on by hand or machine. 
• Use a snap setter to easily put snaps on each piece and attach it that way.
• Use grommets to attach the two items. 

Another idea is to make a bag. I am going to be making two bags for my son. One will hold this smaller bottle and one will hold the larger one. They will be similar to this one ... 

From here

Or this one ...

From here

But it will be a perfect fit for the actual bottles I use. I will make it open at the top and just a hole at the bottom so the opening doesn't open up in the middle of a feed and the bottle drop out. 

My husband has an insulated water bottle holder that is an option as well if you wanted to simply purchase a ready made item. It is very similar to the picture below, is insulated, and has a handle. You could simply tack the handle so it ends up at the other end in under 5 minutes. You can find them online or at any camping supply store (where my husband got his).

From here

My son was my final test subject. After a few well worded jokes from him, I asked him his thoughts about it, did he like it, did it make the feed feel any different, etc. His end result was two tubie thumbs up. 

The flow rate is the same and wasn't messed up with the different container. Clean up was a breeze. You know, let me share that with you as well. 

Clean Up

• Unscrew spike end of tubing from cap. 
• Unscrew cap.
• Empty and wash out bottle using warm soapy water. 
• Wash out cap using a rag or a gentle dish brush using warm soapy water. Air dry. 
• While squeezing the flow part of the tubing (the part of the tubing cassette that you squeeze to prime it), hold the spike end under warm water. It will clean out the tubing for you in seconds. After it is running clear water, stop the water and continue to prime it so all the water leaves the tubing. Air dry.

I use what we call the tubie octopus for all of my feeding tube parts that need to air dry. (extensions, tubing, caps, etc.). It's actually a baby bottle drying rack. It looks similar to the picture below. The cup in the center is perfect for 10ml and 60ml syringes, I drape tubing over the arms, can set caps and such on the grid at the bottom. It works perfectly. 

That's it. That's our new feeding system. Once I test the larger bottles I will make a second post sharing the name and vendor of those. If you find a larger toxin free glass bottle with the proper size opening that holds 600ml or more before I post, please feel free to share it in the comments and I will add it to my research and future post.

If you want to join our Toxin-Free Tubie group, please feel free to request membership on the board. We would love to have you. 

How I Got Started on This Path - Part 1

From here

I grew up like most of us did. We ate colored cereal, drank chocolate milk, and had school lunches served on little plastic trays 5 days a week. Food was just something we put in our mouths, utensils, cooking items, and household cleaners were just tools to use in our home and our world. We didn't think about it. In fact, the stronger the scent or brighter the color, the more we wanted it and used it.

I don't blame my Mom, grandparents, or anyone else for this. They didn't know. They just lived life with the things they had in the stores and thought very little about it. I know I did for a long time. They also had it a lot harder than I did because they had no internet and far fewer choices during that time. No one was out there asking, "what if".

And this is how I was living, that is until we heard we would be having our first baby. It all started innocently enough. I was online researching and learned about cloth diapers. My first response was "yuck, why would you ever deal with that". Then I saw one and it was, quite honestly, adorable. I started to look into them and discovered they were a huge money saver. I knew my husband would think I was nuts, but when I approached him with the words "will save us a lot of money", he was on board.

We rocked on with our oh so hippie cloth diapers (yeah, they were very much not hippie, but I was feeling quite tree huggerish) for about 2 years and had another baby. When we learned we would become parents again, something happened. Right about the same time we got the news, our older son had his 2 year old well child visit. We got such a glowing report. He was doing great. He was meeting all his milestones, developing wonderfully, advanced on his speech, growing like a weed, and had a smile that lit up a room. A few hours later that all changed.

We went home, I called Daddy to tell him how wonderful his big boy was doing, put our son down for a nap, and, when he woke up, something was wrong. He had gone from a speaking, laughing, happy toddler to a child who wasn't speaking. He started to do odd things like run for hours and hours a day. He would only stop when his body physically ran into something that made him stop (doors, walls, large furniture, etc). He would bang his head, run into windows so hard we put baby gates up afraid he would pop them out of their frames or break the glass, and wasn't speaking still. We were scared.

We took him to the doctor and he told us this was normal, he was upset about our new baby coming. I told the doctor, in utter confusion, "he doesn't know about the baby. I am not showing, we haven't bought anything for the new baby yet, we haven't told him, he has no clue." He smiled that "oh, you poor deluded woman" smile and told me it would go away soon.

It didn't.

That was life. I was pregnant, I had a toddler that had something wrong with him, and no one was helping me figure this out. I was tired, sad, and scared. My husband was tired, sad, and scared.

My pregnancy wasn't easy either. Our growing baby boy wasn't moving. I don't mean he only moved when I drank juice, ate sugar, or laid on my side. I mean he wasn't moving. We had scans, tests, and more. He was growing fine (in fact, like his big brother, growing like a weed), but he was not moving from the position he was in, ever. But, eventually he was born a nice big healthy boy and we couldn't wait to go home with our new bigger family. Day 2 of life changed everything for him. He went from sleeping awesomely, nursing like a pro, and just being a baby to screaming all the time and never sleeping. Our LLC said that coming to our room to help us with nursing was like a 30 minute break for her because he just knew what to do and did it well. She walked in right after he came back from the nursery that fateful day and was confused. She asked what had happened. We didn't know. We never did get him to nurse much after that. No matter what she tried, what we tried, what breastfeeding advocates tried, he was just screaming, unable to nurse, and rarely slept. I kid you not on the sleep. It would take us a good hour of work (hard work) to get him to finally pass out and, then, he would sleep for 30 minutes before waking up screaming again. He was refluxing like mad, spitting up his bottles everywhere. Because life was exhausting with all of this, I moved to disposable diapers and the most horrible rashes started. His skin would break down it so badly it looked like someone had used a potato peeler on his bum. Then, that would become infected with various things and we would be at the doctor begging for help. They had us change everything from soap, to kinds of diapers, to everything. None of it worked.

Finally, in desperation, I pulled out his cloth diapers, changed pediatricians, and asked her to help me heal his bottom. She knew what it was and was able to heal his sores. The cloth diapers took care of them ever coming back. Oh, he still wasn't sleeping, was crying all the time, and refluxed every meal, but at least his rear end could be touched to change a diaper, water could touch it without his screaming, and pressure could be put on it while he was held.

I will leave this story here and continue with part 2 in the next post.

Welcome to You, to Me, and to Everyone Who Enters

For my first post on this blog I am going to try very hard not to bore you with a lot of cutesy things about our family, my life, and more. Instead, I am just going to stick to the facts and save my words for future posts.

• I am a wife and mom, and I love both of those "jobs". I had things I wanted to be when I grew up, and they changed over the years, but I always, always wanted to be a wife and mom. 
• I am a city girl by birth and a country girl by marriage. I fit into the country life far better than the city life and I never could have dreamed I would feel that way. 
• I have two little stinkers I call son and they make me smile, laugh, and happy everyday (and, I won't lie, I have those days when I just want to yell "Calgon, take me away"). 
• We home school.
• We are Christians, and that seeps into every aspect of our lives. 
• We have pets. We have 2 dogs (polar opposites - 80lbs and 4lbs), 2 lizards (African Fat Tail, and Spotted Gecko) and a cat. My kids would have 40 acres of animals if we let them. 
• We live on 40 acres that backs up to my mother-in-laws remaining 360 acres. 
• We are, as I call it, knee deep in the medical world through both of my sons many medical and special needs. 
• And, as you can probably tell by my blog title, we strive to live toxin free. We are far from it, but are getting closer every day. There are many reasons for this, some of which we will explore in my blog, some of which is too personal and we won't. 
• I love to write, a hobby handed down to me by my grandfather who is an actual published author from the day when you didn't self-publish. I am writing my first book right now. It may or may not ever take off, but the joy of writing it was enough and my kids adore the story.

This is where I will leave you. We are so much more than this but this will at least wet your whistle about who we are and why we blog. 

I hope you have a wonderful weekend.