Monday, February 29, 2016

Conversation With Our Son

My 8 year old son and I had a conversation Sunday afternoon that reminded me of a Bible verse in 1 Corinthians.

What? know ye not that your body is the temple of the Holy Ghost which is in you, which ye have of God, and ye are not your own? For ye are bought with a price: therefore glorify God in your body, and in your spirit, which are God's. - 1 Corinthians 6:19-20
He was laying on the sofa after talking Daddy into a nice long back scratch (he does take after me in some things) and this is how our conversation went:

Littlest Mr. "Momma, do you know what arms and legs and eyes are for?"

Me: "What do YOU think they are for."

Littlest Mr. "I think feet are to take you where God wants you to go. Arms are to do the work he wants you to do. Eyes are so you can see the people He wants you to tell about Him. Ears are so they can hear what you say about Him. And a mouth is to tell the world about God."

I couldn't have said it better myself little man. Of course, it also reminded me of another passage once I was done speaking to him.
And said unto him, Hearest thou what these say? And Jesus saith unto them, Yea; have ye never read, Out of the mouth of babes and sucklings thou hast perfected praise? - Matthew 21;16
I always tell our kids that God can use them, even when they are young. Today was perfect proof of that. You are never too young, too old, too anything, to be used by God. Just be willing to let your arms, eyes, ears, feet, and mouth work for Him.

Sunday, February 28, 2016

A Little Einstein for Today

We are working through something with one of our sons. He appears to be gifted, though we are just now exploring that idea. I was reading an article about giftedness in children and came across this quote that I felt was wonderful for all aspects of education and it rang so true with me.

Education is what remains after one has forgotten what one has learned in school.
~Albert Einstein
Who knew Albert Einstein was so smart. (ha ha)

Saturday, February 27, 2016

SO Not Pollyanna

How many of you remember who Pollyanna is? She's a little girl in a movie named after her character. She was known for seeing the sunny side of life no matter what. Pollyanna is a term often used to make fun of people who are always chipper or glass half full types. 

  1. the expression of criticism of or pessimism about something.

  2. The world, however, thrives on negativity. It cherishes whining, complaining, and griping. It welcomes it. And, honestly, the church is often just as bad. 

I have a confession. Negativity, focusing on the bad, is one of my struggles. Oh, I am not outright dissing people with gossip all the time (though I did partake). But it's the glass is not just half empty but it's probably not even filled with something I like type thinking that was getting me. 

The thing is, no one said a word to me about it, not even my friends and family. I live with children who have a lot of struggles. I live with a husband in a hard line of work. People understood when I complained or whined. They took pity on me. The fed the fire. 

Then, 2 Sundays ago, our pastor spoke from Ecclesiastes and about how we spend more time whining and complaining than we do with God each day. He mentioned Facebook, social media, and just flat out unhappiness with our situation. He asked if we spent as much time on things of God as we do with negative thinking. He didn't ask us to speak out, but in my head I was screaming, "NO! I DON'T". 

Unbeknownst to me, my husband was having the same conviction. You know how you walk out of church with a bit of a headache from the proverbial spiritual 2"x4" between the eyes from a really good sermon? Yeah, I think we were both rubbing for a while. 

I decided to try hard to make a change in my life. 

Not only am I trying hard to focus on God more in my day, to lean on Him more, and to have deeper and more meaningful prayers, but I am working hard on watching my words and my thoughts. I want them to be pleasing to God and a blessing to those who hear them. 

Here's the problem with that second part. It's HARD. It's so hard. I never, ever realized how much I spoke in a way God wouldn't be pleased with. I felt justified in complaining or talking about how others hadn't done me right. I mean, they should treat me right and my life WAS hard. But, eventually I had to say to myself, SO WHAT! 

OK, someone ticked me off. So what. 

Someone wasn't nice to me or hurt me. So what. 

It takes me a long time each day to deal with medical issues or special needs my kids have. SO WHAT! 

Christ took a beating like no one alive today can imagine. He was taken near death and plucked back just before he died at their hands only to have to carry a heavy piece of wood (which would have been hard for the healthiest of men) and then was nailed to that piece of wood in excruciating pain. Wahh, poor me. 

It's still hard. I work at it every day. I work at it every single minute of every single day. Sin is like that, isn't it? You fall into it so easily, almost without realizing it at the time. Then, when you want out it's the hardest thing in the world at the time. 

I tell you this not to hold myself up as some shining example. Please, don't be like me. Be like Christ. No, I tell you this for two reasons. 
  1. I want to admit I am a sinner who struggles with hard things and to share so I am more accountable for my words and thoughts. 
  2. I hope someone else might look into God's word on the subject if they are also struggling with this same issue.
 We need to turn back to God. We need to spend more time thinking about God, doing His will, and worshiping Him than anything else, but especially with thinking about our own hardships and lives (and ESPECIALLY the doings of others)

If you are wondering about the passage our pastor spoke from, it's in Ecclesiastes 3. Actually it's was a much smaller portion but I wanted to share it and the next week's portion since they obviously so together so beautifully in thought. 
What profit hath he that worketh in that wherein he laboureth? I have seen the travail, which God hath given to the sons of men to be exercised in it. He hath made every thing beautiful in his time: also he hath set the world in their heart, so that no man can find out the work that God maketh from the beginning to the end. I know that there is no good in them, but for a man to rejoice, and to do good in his life. And also that every man should eat and drink, and enjoy the good of all his labour, it is the gift of God. I know that, whatsoever God doeth, it shall be for ever: nothing can be put to it, nor any thing taken from it: and God doeth it, that men should fear before him. That which hath been is now; and that which is to be hath already been; and God requireth that which is past. And moreover I saw under the sun the place of judgment, that wickedness was there; and the place of righteousness, that iniquity was there. I said in mine heart, God shall judge the righteous and the wicked: for there is a time there for every purpose and for every work. I said in mine heart concerning the estate of the sons of men, that God might manifest them, and that they might see that they themselves are beasts. For that which befalleth the sons of men befalleth beasts; even one thing befalleth them: as the one dieth, so dieth the other; yea, they have all one breath; so that a man hath no preeminence above a beast: for all is vanity. All go unto one place; all are of the dust, and all turn to dust again. Who knoweth the spirit of man that goeth upward, and the spirit of the beast that goeth downward to the earth? Wherefore I perceive that there is nothing better, than that a man should rejoice in his own works; for that is his portion: for who shall bring him to see what shall be after him? - Ecclesiastes 3:9-22 (KJV)

Thursday, February 25, 2016

Safer Drinking Bottles

Many years ago we used Lifefactory baby bottles for our youngest son. We had made the move to safer items for them (well, we were starting) and I liked that not only was this a glass bottle, but it had a sleeve on it to help the child grasp it and to reduce the risks of breaking if it was dropped. This was especially nice in the church nursery where he had to feed himself since he wasn't an infant anymore.

We got past bottles and got a bit lax with our concern for toxins in those types of items (read, life went nuts with two children with special needs). But, we finally came back to a more toxin free life and I started to look for items when we were in the car, at someone's home, or just out at a restaurant. I found a lot of cheap junk that said it was toxin free but it wasn't, or they just didn't fit our needs. I don't mind paying a little bit more for quality, but it has to be true quality.

Enter Lifefactory again.
I started to research and found that they have a HUGE selection of items. They even have drinking glasses.

Tuesday, February 23, 2016

Happening Week

This has been a crazy week and it just hit me that I hadn't posted in a while. I am sorry about that. So, what happened at our home?

Let's see:
We got our sons music room together ... mostly. Yes, that is a tool box you see. I said mostly. But this point I was wiped out. This room, you see, is our younger son's bedroom. We moved him in with brother and their drums and piano into his room. They love it. But, it was a lot of work taking down furniture just to move it to the next room and have to put it all up again. We have some things to move to our storage building and we are done in there. I am thinking of moving our big book shelves that house the medical supplies in there. I believe there's room for it (it's a tiny bedroom). That would free up some nice visual space in our living room.

We also bought an 8 pack of chicken nuggets. That was completely unexpected. We used to have chickens. We have beautiful Rhode Island Red layers. Our younger son figured out where eggs came from and never ate another egg. Our older son dived so much in his eating that he didn't eat them just because he felt no hunger and ended up with a feeding tube. So, we just had more pets to care for each day. We gave them to a friend with a chicken business and moved on.

Now my sons are doing better. But we weren't getting chickens. A few days ago we were all in town doing errands and my husband asked what all we needed to do. I told him and he asked if we needed to go anywhere else, then listed the farm store. I told him I didn't need to head there, but if he had something he needed to go for it. He said he saw their "chick days" sign up and just thought we might take a look. I couldn't figure out why, but the boys wanted to see the chicks and the bunnies, so I told  them we could go look but we were NOT buying anything.

Yeah, by the end of the trip Daddy and the boys ended up deciding we needed chickens again. We got home with me saying 4 chickens, you can each pick 2. That night my husband was chatting with his Mom on the phone and said, "yeah, we are heading back into the chicken life. The boys are getting 8 chickens". WHAT! I asked what he meant. He said he figured 4 each would be good, didn't I think so too. Um ............... sure.

Yesterday, after music lessons, we went back to the farm store and picked up our 8 pack of chicken nuggets. Seeings as the kids wanted them and were going to care for them, I let them choose what they wanted. They picked 2 of each breed. A few have names. The yellow ones are Sunflower and Buttercup (you can tell Sunflower because she has a black spot above her eye). The little black one there by herself is Egg Nog. The two striped ones are Mars and Chocolate. The other 3 are still waiting on their names.

And so you see, THAT'S why I have not posted in a few days. Add in church, taking my mother-in-law to hear her favorite local gospel group sing, music lessons, thinking about food all the time to get it into my sons, and more, and life got a bit crazy.

Friday, February 19, 2016

We Have a Winner!

We have a winner! A Dinner Winner, that is.
Amazon's Stock Photo
Our younger son doesn't eat well. He's following in his brother's foot steps. We are in the part of the journey where we try anything. Someone recommended this to me and, for $17.10, I couldn't pass up the opportunity to try it. If it doesn't work, fine. If it does, best $17 ever spent.

We just got it today and unpacked it.

Here's what you do. Each compartment is a place on the game board. You fill each one with the food of your choice. The last spot is a compartment with a lid. You put the prize in the little box. It can be a treat, a non-food item, whatever you want that the child will be excited about. Our rule is, you can't even peek until your food is gone.

I filled it with the following:

  • Gluten/dairy/soy free Matzo crackers by Yehuda
  • organic carrot
  • few organic strawberries
  • pear sauce (like applesauce but pears, he can't have apples)
  • half of a safe hot dog
His prize was cherry licorice by Lovely Candy Company. It's free of all of his allergens.
I put the lid on the prize box, set it in front of him, and waited. His first reaction was that it was the coolest plate he had ever seen. SCORE. Then he asked "what's this stuff", pointing to the pear sauce. I told him and he tried it without batting an eye. DOUBLE SCORE. He liked it. TRIPLE SCORE. He then saw the hot dog. I waited for the meltdown as he hates meat. He said, "is that a hot dog". I wanted to hide in a hole but was confident and said "yes" like it was no big deal, paying attention to what I was doing. He smiled and said, "oh good, I love hot dogs". 

I might have hit the floor at that point. He does NOT love hot dogs. Maybe he loves hot dogs on that plate, but never before has he loved hot dogs since this feeding issue started a year ago. I just smiled and said, "good, buddy". 

In about 25 minutes, this is what I ended up with:
He was just finishing up the cherry licorice. 

Let me break this down for you:

His normal meal consists of around 50 - 80 calories before he says he's full. 
This meal consisted of 265 calories and he ate every bite of it. 
That's a difference of 185 calories from his best meal and 215 calories from his lesser meals (I won't say worst because his worst meal on record was 11 calories - a few pieces of fruit). 

I am working from here. I will be adding in higher calorie foods. I will mix up the foods so he has a nice variety. Every plate of food will have a "challenge food" on it about mid way along the path (today's was that awesome hot dog that he loved because he loves hot dogs - eye roll). The "challenge food" will be a food he either hasn't had before or doesn't like. It won't be one that he genuinely just doesn't like in the way we all have some foods we don't like the taste of in life. 

Thursday, February 18, 2016

Home School in the Woods Review


In case you didn't know, it's coming up on election time. In our home we have been talking a lot about words such as voting, President, Senator, and so on. So, when I was offered a chance to review HISTORY Through the Ages Hands-on History Lap-Pak: U.S. Elections from Home School in the Woods, I said "Yes, please!"

We received the digital pack of the Hands-On History Lap-Pak: U.S. Elections. It has all you need to make your lap book from start to finish. This is a very well done lap book, so you have a lot of choices of items to put into your family's folder. You set the schedule, the method, the order, and choose what you want to take from it, perfect for people who enjoy flexibility in a program.

What you get: Instructions, MP3 of the reading text, the reading text in printed format, and 21 projects to include.

My first impressions: You will NOT wonder how you are going to fill a lap book once you see this program. There are a lot of options and choices for what to include. Also, the artwork is awesome. When your children color the pictures, it's actually like a piece of art. I think that's what stood out to me the most when I first opened the pack, the beautiful images I saw. Lastly, it was so simple to get going. There weren't a bunch of confusing file names to try and figure out. You downloaded it, clicked "start" and off you went. It was in a logical and easy to follow order.

Overall Information: This lap pak is listed for grades 3-8 and I think that grade level fits quite well.Oh, and you get all of this for only $18.95 for the digital download. Yeah. Love it! You could use certain portions for a second grader that wanted to work with his siblings and even an older child would enjoy the depth of the knowledge contained in this kit, but for the most part I feel this grade range is right on track with the information, how it's presented, and the activities included. This means it's great for a family project to work on together.

I started by looking over everything. I read how to do this pak, the information that the kids would learn, almost like a mini class for myself so I could understand the process. I printed all the items for the book, put them in order, and got our folders, glue, colored pencils and crayons ready.

What We Learned: HISTORY Through the Ages Hands-on History Lap-Pak: U.S. Elections from Home School in the Woods includes such information as election vocabulary, 3 branches of government, suffrage, primaries, caucuses, national convention, forms of government, qualifications of someone who wants an office, and more.

What I Liked: I liked the MP3 that came with the download that read aloud to us. That was a nice change from Mom reading it out loud or each child having to read their own text. This set really lent itself to great discussions that went deeper into each of the topics. It doesn't tell you who to vote for but helps you understand the why, how, and when of voting so you can make sound decisions, understand what you are seeing on TV, and even lead to a discussion about who we, as the parents, were voting for and why we felt we were making the best decision. (which made us think hard about the WHY on some of our own decisions there because we had to explain them to our children).  Discussion is huge to me and a big part of my teaching method and just how we live our daily life, so that was a big point in this project. I loved the discussion it brought to the table.

Friday, February 12, 2016

Feeding Tube Awareness Week - Day 6 (Resources)

So you find yourself with a feeding tube, or your child has one, what now?

Easy. Educate yourself and get support. I am going to share a few resources with you where you can do just that. (click on the pictures to go to the websites)

The one I have talked about all week will be my first one on the list:
They have a very nice site with TONS of information, support, and just anything you can think of related to feeding tubes. This would be my first stop if I was a new tubie Mom. 

Have a tubie? You are a tubie? You love a tubie? Well, get your tubie a Tubie Friend. This is an awesome program where your tubie will be matched up with a volunteer that will sew the same type of tube your child has into a stuffed animal and send it to them. If you can pay for it, awesome. If not, awesome. Our son has a guinea pig that he named Bolus (good name). He loves Bolus and it really helped him step out of his shell with his tube.

Check out Feeding Tube Awareness's Facebook page for a ton of real life support.

From support group lists to resources and online help, you will like the Oley Fondation's website.

Below are some Facebook Pages for various feeding tube and failure to thrive topics.

I hope these will help you on your road to being a successful tubie parent. There is a lot of support out there, you just have to reach out for it. 

Thursday, February 11, 2016

Feeding Tube Awareness Week - Day 5 (How My Son Feels)

Today I decided that I would share my son's thoughts on his g/gj-tube. A little back story before I get started:

Our son is 10 years old and got his tube 16 months ago. He's your typical little boy. He loves all things Lego, anything to do with robots, Lego, reading Calvin and Hobbes, and did I mention Lego. He has a small thing for Lego. His favorite subject in school is handwriting and he is learning to play the drums.

He also has quite a few medical needs and special needs that prevent him from being able to eat enough calories to sustain his life. 16 months ago his doctors decided it was time to place a feeding tube in the form of a gastrostomy tube.
    A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. - Kids Health
    G-J tube is a single tube that passes through the abdominal surface, into the            stomach and down into the second part of the small intestine (the jejunum).  The tube stays in your child's stomach because there is a balloon inflated inside the  stomach to help “hold” it in place.

Below is my interview with him. I had a fun time doing this and I think I might chat with my kids more often for my blog. They seem to have a lot to say.

Our son started with a g-tube. After a while, and for no reason we can figure out, he stopped tolerating his feeds no matter how slow we went. We eventually moved him to a gj-tube. This has a longer tube that goes into the upper portion of the small intestine through the opening between the stomach and small intestine.
G-tube (Top left picture)

Mic-Key GJ-Tube

Now, back to our interview.

Q: Buddy, do you mind if I interview you for my blog for Feeding Tube Awareness Week?
A: Do I get paid? (incredible laughter by my son - you will learn he's quite funny).

Q: How did you feel the day your doctor said you would be getting a feeding tube? Do you remember how they showed us a doll with a tubie in her tummy and let you play with it and learn about it?
A: I was nervous because who wants a hole all the way to their stomach and then put a tube in it? I know I don't. But now I am used to it.

Q: How do you feel now that you have been living with a feeding tube for a while?
A: I just do what I can. I play sports (he's on a team for kids with differing levels of ability), irritate my brother (and with that the question was over because he couldn't stop laughing).

Q: Do you like your feeding tube?
A: Uh huh. It feeds me when I don't feel like eating or can't eat.

He stopped me at this point and said, "Mom, you are forgetting an important question I want to answer."

I asked what that was.

He said, "What did it feel like the first couple of days after I got my tube?"

Q: OK buddy, what DID it feel like the first couple of days after you got your tube?
A: I was kind of nervous and felt like I was going to throw up (we later figured out he was refluxing due to not tolerating his formula and, once we changed, he stopped that). But I didn't want to barf because I was afraid it would hurt.

I also felt important because everyone was sending me presents and flowers and the nurses were all doing things for me. It was fun. (leave it to a kid)

Q: What advice would you give one of your friends who was going to get a feeding tube?
A:  You get used to it.

Q: What is the best part of a feeding tube?
A: The J part of my GJ-Tube is cool. But it's kind of gross that it goes into my ... let's talk about something else. I can eat all the candy because Mom gives me nutritious stuff in my tube. KIDDING MOM!!! (more laughter)

Q: What is the worst part of a feeding tube?
A: Getting it changed. They stick something in the hole in your stomach. (if you can't tell, that just freaks him out when it's the center of attention)

Q: Is there anything else you want to say?
A: Yeah, you should do these more often. I have a lot of things to tell people.

So, there you have it from the horse's mouth. He really is just pretty cool with the whole thing. He hates changes, even when it was a simple G-Tube and we did it at home. Other than that, he's pretty relaxed about it and I think he forgets it's even there. It's just part of our daily lives that he's learned, over the last 16 months, to work with each day.

Wednesday, February 10, 2016

Feeding Tube Awareness Week - Day 4 (How I Feel)

So, it's Feeding Tube Awareness Week, but what do families really think about feeding tubes, about how our lives have changed since one or more of our children got one, and about the daily life with one? Well, I am going to share me and my husband's thoughts and feelings, what I have heard from other parents, and maybe a few quotes from my extended family members.

Other parents I have met and talked to have very similar feelings. I have yet to meet one that, down deep, doesn't love the feeding tube. Oh, they wish their kiddos didn't have to have it, they wish they were healed today, they wished they could eat by mouth in a way to sustain their lives. But, seeing as their children't aren't there yet, they are happy that this tube is available and saving their child's life. They don't view it as a sad or horrible thing. It's a blesing.

I decided to take the easy way out, I simply asked my family and friends a few questions. I will share them and their responses below.

For my extended family and friends, I asked the following:
When you look at our son, what are your feelings towards the feeding tube and regimen he has? Even if you don't fully understand it's intricacies, compared to how you felt 16 months ago when we first said he was having the surgery, how do you feel about it now? How has it helped his life, his health, anything else about him you feel it's affected? Is there anything you would like to share with those who are facing this road? Is there anything you would like to share with the extended family members or friends of those who are about to head down this road?

A friend of mine responds:
I was heart broken for him to have to endure surgery and anesthesia. Worried because I knew that he didn't respond to meds the way most do. Sick to my stomach knowing the worry his momma was going through and that I couldn't at least be there to hold her hand and pray.  BUT... grateful for a procedure that gives his wee body the nutrients it needs. That this can make all the difference in the world in how he develops not only physically but neurologically and emotionally.
And lets face it. Momma and Daddy sleep better knowing their son's stomach is full and full of all the good stuff!!!

My Mom responds. Take note, she is an RN and a Nana, so her view is quite different than most:
 Here are my thoughts as a medical,professional and as a Nana.
 First, as a medical person, I was concerned about his fragile nutritional status, yet somewhat fearful of the feeding tube. Never having cared for a G tube or a J tube, I didn't know what would be involved. Would it be easy to use and care for? Would he be uncomfortable with it?
 Eventually, I saw it as a gift from God that literally saved his life and his brain from starvation. I saw his color get better, his mood and attention get better and his personality come out more.
As a Nana, I was worried about his acceptance of it, how you all as a family would be able to work it into your everyday lives and would he feel different or left out? Would he be able to eat his favorite food? Would he be hungry?  
I   am so thankful he was given this chance to live a fuller life than he would have otherwise
For my husband's take, I personally interviewed him. Here's what he had to say:

Q: How awesome is your wife? (followed by giggling)
A: Incredibly awesome. (ahhh).

OK, on to serious things.

Q: What were your thoughts and feelings before our son got his g-tube?
A: He should have had it sooner. I was nervous about the care of my son and being responsible for that. I feel like the doctors didn't adequately follow my son's care and, if they had, they would have realized he needed the tube within several months of him not meeting his calorie goals.

(me inserting a note - you will notice my husband is much more level headed and "just the facts ma'am" about life. I am the mushy teary-eyed one.)

Q: What feelings did you have the day of and 2 - 3 days after his surgery?
A: The day of? I felt like the people at the hospital in charge of training us on the care of our son with the tube really didn't know what they were doing. You would think they would have started the training process before the tube was put in.

Q: How do you feel the tube has changed our son's life?
A: It's allowed him to get the nutritional need to grow and develop. I think it's taken the stress of meeting his calorie goals off of him.

Q: Good and/or bad, how has it changed OUR lives?
A: Good - I would say I'm seeing my son meet his milestones.
     Bad - It's just the complication of planning things like going camping or to Nana's for a few days.

Q: What would you tell a dad who just heard the words, "your child needs a feeding tube"?
A: Embrace it. If someone's telling you that, it's got to be bad. A lot of times you have a fear of the unknown. I didn't have that because, I figured anything would be better than seeing my child starve before my eyes. I am thankful for the feeding tube because I truly believe without it my son wouldn't be here right now.

Now, for my take:

My thoughts on my son getting a feeding tube before we actually had it? NO WAY! Just NO! It wasn't happening on my shift. My son would NOT be having a feeding tube. That was giving up. That was for kids who were sick and had serious feeding issues. Nope, not my son.

The problem is, my son is sick and has serious feeding issues. I was in denial about that. I kept thinking there HAD to be something we hadn't tried. Maybe a new therapy, a new technique, a new medication, the list goes on. I kept asking and no one had any ideas of anything we hadn't tried to get him to eat. I remember laying in bed the night before his surgery talking to my husband in the dark. I told him I didn't want this for our son. I begged him to think of something we hadn't done yet. He held me and said, "tell you what, you pray. Give this to God. Ask Him to direct us. If He gives us something we haven't tried, I will personally cancel that surgery myself." So, I stayed up for hours giving it all to God and asked for Him to guide us to what would work. Instead of a new therapy/medication/technique, He gave me peace. You know that old "peace that passes all understanding" thing? Yeah, He graced me with that.
And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus. Philippians 4:7
So, the next morning we woke up early and headed to the hospital to check in for surgery. I remember when they came to tell us our son was in recovery and we could go see him as soon as we talked to the GI and surgeon (they performed the surgery together), all I wanted to do was see his face and then see his tube. I needed to see both to know it was OK. Yes, I heard glowing reports from his doctors on how well the surgery went, how well he handled it, and so on, but I needed to see him to know this was OK. As soon as I saw his face and his sweet eyes looking at me, I knew this was OK. I asked if I could lift his gown and the nurse said it was fine. I looked and thought it didn't look nearly as scary as it did in my mind before the event.

We had a 4 day stay in the hospital (because of our silly insurance dragging their feet on getting the medical supplies he needed to go home with approved, but that's a whole other vent post for another day). He did so well. He needed a little pain management the first day, less the second, and by mid morning he was asking to go to the play room.

I remember watching with an eagle eye the first time they put something into his tube. It was like a kid watching the lunar landing on TV. I was in awe and scared that I had to learn how to do this. They were going to trust me to put formula, meds, and more into my son's tube? Were they nuts? But they trained me decently. My husband was right about the lack of training we received. I didn't know we weren't well trained until we got home into the thick of it. But we were not well trained. Thankfully there are lots of websites out there, YouTube videos, and support groups to help you figure out the intricacies of daily life with a feeding tube.

 I asked my husband how the tube has changed our son's life. Wow, I never imagined how much it would change his life. I was so used to seeing a sick child that watching his weight blossom was incredible. I remember going to follow up visits and seeing that number on the scale going up. I wanted to dance down the hallway each visit. I couldn't imagine why nurses weren't high fiving me and each other, balloons being released, and dance music being blasted over the intercom. My son was growing. To them it wasn't a miracle. They saw this happen each week in their offices. But, to me, it was a blessed event. He started to smile more, have more peace about him, grow, and did better in his school lessons. His brain was being fed so he could actually think. His reading seriously improved. He has dyslexia, but once his brain started being fed, not being able to read words stopped.

Our home life has changed a lot. Gone are the days of grabbing my purse and running out the door to do something fun. Now I have to think ahead of time. I have to make sure everything he needs is packed in our backpack (my new purse). I have to make sure, if we are gone longer than a backpack will handle that I pack him a bag. We have to calculate how much food to bring, which means water, formula (if we need that), blended foods, meds, syringes, extensions, pads, and the list goes on. We have a huge book case in the area between our living room and kitchen where my pretty wall hangings used to be. Now that area houses medical supplies. I have to think about every calorie that goes into my son's mouth so I can then calculate how many calories need to go into his tube.

I hated math in school. I hated science in school. I was never the little girl that wanted to be a nurse or doctor. I am now doing math daily, science weekly and I have done more nursing procedures than I care to comment. I have been asked by many doctors if I have had previous medical training or went to medical school for even a bit of time. I laugh and tell them no. They tell me how well I pick up the medical jargon, can use it like a pro, and learn medical procedures. I laugh, point to my son, and say "this was my residency". It's true. You just learn, as a Mom in this world, how to speak doctor and act nurse. Oh, I am no where near where an actual doctor and nurse are, but I am very comfortable filling in for when they aren't around.

I like what my husband told dads when he said "embrace it". You really have to. Your child's tube is like a new family member that has to be cared for. Seriously, it is bathed, sometimes gets diaper cream, is clothed (tubie pads), is fed, and is cared for 24/7. I mean, if that's not another family member, I don't know what is. So, just go at it full force and embrace it.

I know it's scary. Unlike my husband, I was scared. He is much more level headed and factual than I am. I think with my heart. This was my baby and I hated it for him. I think what would have helped is a lot more education up front, before we even had the surgery. If you are going through this, ask for it. Don't leave until you get it. Go online, look at the support groups, check out the Facebook pages, look at the feeding tube websites (the pictures above all link to a major website). Don't be afraid to branch out and tweak how you care for your child. Be safe about it but this really is an art form and every parent ends up with their own method. You CAN do this. Pray a lot. God will hold your hand through this just like He did mine. I am here for you. You can contact me anytime. You can do this and your child will be healthier for it. That's what it boils down to, your child's health. The rest is gravy. 

Tuesday, February 9, 2016

Feeding Tube Awareness Week - Day 3

We went out of town for my younger son's birthday this past weekend. We liked the cabin we stayed in so much, we asked the office if we could get an extra day. Since no one was coming in Sunday night, they were happy to oblige. It was great to have that extra day of rest and relaxation.

Now it's back to life as usual (which is wonderful) and back to feeding tube awareness.
Yep, today we are going to talk about reasons why kids have tubes. Let me start with the simple information first. You can't tell by looking at a child if they need a feeding tube. There is no sign on their forehead that blinks all their medical issues. So, if you were thinking of a comment that starts with "but he looks so normal" or "he looks so healthy", just go ahead and stop right there and keep that thought to yourself. The parents won't take you seriously, they will understand you don't want to get it, and their shields will go up. If you want to really grasp the situation, ask good quality questions. Also, remember, only ask those questions if you have a right to know the answers. Don't ask a random stranger in a grocery store. Their child's medical information is not your business.

Feeding Tube Awareness has developed a wonderful list of conditions, diseases, and disorders that often come hand-in-hand with a feeding tube (or at least they are very common with those diagnoses).

You can check that list out here:

Condition List - Feeding Tube Awareness

Now, I am going to get more personal. I am going to share our son's reason for needing a feeding tube. This is the diagnosis he received after years of testing, scopes, biopsies, feeding therapies, labs, and doctor visits with specialists. It took a lot of trained eyes on him to figure this out and it was exhausting.

Ready for it?

Idon'tknowthisisnewtome disease.

Yep sometimes you have a kid with a feeding tube and the doctors don't understand the mechanism of why they can't eat enough to sustain their bodies. Oh, they have medical issues. Our son HAS medical issues. None should cause him to not be able to eat and fully process his food. His tube was put in because, no matter how hard they tried to figure it out, he was failing and the point was to get him healthy and make him thrive. There comes a point that you need to start treatment even before you figure out why you need the treatment. His labs show issues. His feeding therapists can't figure it out but see the issues. His doctors can see that he can't do it. They just don't know why.

Society doesn't like that. We like names for everything, especially anything medical. But, when you live in the medical world, you quickly realize how much we don't know. I wanted to bang my head into the wall every time a doctor said "I don't know" because I knew they honestly wanted to know but didn't.

Here we are, 16 months later, and our son is doing so much better. He looks healthy BECAUSE of the tube. We are blessed to have it in our lives. I never wanted it. I fought against it. But, in the end, the doctors were right and he is healthier now. It wasn't the easy way, it wasn't giving up. It allowed his body to be healthy so we could actually work harder to get his body to do what it needs to do on it's own. A sick body can't heal many times simply because it's too sick.

Sunday, February 7, 2016

Feeding Tube Awareness Week - Day 1


That's right, for the next 7 days I will be posting about all things tubie. I will have funnies, hard to hear, and everything in between. This will be a chance for you to get to know our family and our journey with a feeding tube. So, if you have a question you would like to ask, please feel free to do so in the comments and I will promise to answer it for you. No question is silly, no question is stupid, ask away. 

I would like to get started with the most common questions we are asked or things said to us. MOST of the time these aren't asked out of honest care and sincerity (well, the first one is, but the rest aren't). But, I will still give them attention because, as I said, there are no dumb questions. 

  • "When is he getting the tube out" - This is the number 1 most common question most tubies get asked. My answer is what most people answer, I don't know. His doctors don't know. No one knows. When he can thrive and survive without his tube, he will have it out. But, that means he has to thrive and survive for at least a year without it before we remove it. This could be a few years from now, it could be when he's a young adult, it could be never. So, please don't be offended when we say we don't know. We honestly don't know. 
  • "Just don't feed him eventually he will get hungry" - I always laugh at this one. Just don't feed him (aka starve him to death) and he will get hungry (even though I know nothing about his medical issues and don't know that his body doesn't feel hunger the way our bodies do so, no, he won't get hungry. Please, before you say something like this to a tubie parent, think about what they are hearing. They hear, "you don't know what you are doing and have medically abused your child because he missed one single meal". Just to let you know, most of our kids would very much starve before they would eat. My son's body was doing just that. 
  • "Just put food in his mouth" - Tell ya what, you put food in his mouth. I will hand you the rag you will need when he either spits it back out at you or, if he attempts to eat it when he can't, the multiple rags you will need when he throws up on you. You let me know how that works for you and then get back to me about "just put(ting) food in his mouth". LOL. 
  • "You just chose the easy route" - Most of these I can laugh about and do. This one makes me angry. No, I didn't choose the easy route. No, my doctor didn't choose the easy route. In fact, this was the hardest decision we ever made as parents. It involved years of testing, therapy to help him eat, scopes to see why he wasn't eating, doctor visit after doctor visit to work through med changes and new ideas. It took my GI looking me right in the eye saying, "it is time, you have done all you can do to keep him from this tube". I walked out crying that day. I felt like a failure. I knew, logically, I had done everything I could do. We had used multiple therapists and therapies, too many meds to list, and had done everything our doctor asked of us. It wasn't enough because it wasn't what his body needed. Oh, and lest you think it's easy to tube feed, think about. How easy is it to make your child a sandwich, put a side of fruit, a few carrot sticks, and maybe some chips on a plate? Now, do all of that, but make sure you measure and weigh every single ingredient as you put it on the plate. Also, make sure to keep out all allergens. Add in that you will need to know EXACTLY how much of that food he ate so you can put it in his daily calorie journal so you know how much he's missing each meal. Then, you have to compensate by blending just the right mix of foods in your blender, then spend 30 minutes slowly hand squeezing it into his tube. Add in that you just dirtied twice the amount of dishes, pots, pans, etc as the typical person does in a meal since you made two meals in one, and you realize once you get up from tube feeding your child you have to wash all of those dishes. Oh, and you have to do it all while still caring for your tube fed child's other needs, making sure to stay on top of their meds, caring for any other children you are blessed with, caring for your home, caring for your spouse, and more. 
  • "Is that REALLY necessary" - Yes. It is. 
  • "Can't you do that in the bathroom or car" - No, I can't. YOU go eat in the bathroom stall or sitting in a car when it's 105 degrees outside or 22 degrees outside if this bothers you. 
  • "That's gross" (talking about the simple presence of the tube on his stomach which you saw simply because you looked over just as he raise his hands high enough to show a bit of his belly) - No, it's not. But, please, while you are smacking your food/gum with your mouth wide open, spitting while you talk with your mouth full, tell me how this tiny near clear, plastic piece on his belly disgusts you. 
OK, now that that's over with, let's move on to actual awareness for those who are concerned and care about others (Which I know will mean all of my readers). I will be back with more on this topic as the week goes on. 

Friday, February 5, 2016

Judge Not ... (not what you think)


Judging others has become almost an art form in our society. We base our opinions about people on their looks, their clothes, their manner of speech, their children, their lack of children, the number of children they have, their husband/wife, their job, their home, their car, the number of credit cards in their wallet, the list goes on!

But, out of all the judging in the world, Moms seem to not only be the worse but have it pretty bad. We judge each other for everything, down to the hair on our kids heads. Worst of all, however, we judge ourselves the harshest.

We constantly compare ourselves to other Moms out there. They all seem to be doing it better than we are. We see a tiny snippet of their lives (and I do mean tiny) and think they are doing it so much better than we are, and it needs to stop. That's the enemy talking, tearing us down, hurting us which, in turn, hurts our children.
Look Moms, we are all in this together. Each of us has our strengths and weaknesses. No Mom has it all figured out. None. We all need to stand together and support one another. We need to hold each other up in prayer and when we see a Mom struggling, that nose we like to look down needs to be lowered so we can see a Mom in need. We need to soften our hearts with God's help and love our neighbor (Mom). We need to stop looking at the Mom in the store with two crying children begging for candy and assume maybe they skipped their naps due to an emergency and Mom is just here trying to pick up a few things for supper after spending a long day dealing with something unplanned. We need to not look down our noses at the woman whose child is wearing no shoes and has unbrushed hair thinking maybe that little guy just tossed his shoes off in the car for the umpteenth time and Mom just finally packed them in the diaper bag to save a little of her sanity.

Hmm, sound familiar?

No matter how well coifed another Mom's hair is, no matter how pretty her kids perfect dresses are, no matter how well they walk hand-in-hand in the store, you didn't see that she wrestled with them for 45 minutes sweating bullets to get those outfits on them. You don't know that this is the one day every few months she actually makes it to the salon and since they styled her hair just before she walked in the store, it still looks good. But, give her another half hour and it will be all over the place. You didn't see that her perfect children had been throwing toys at each other all morning and she just wanted to hide in the bathroom because she was sure she was messing her children up each and every day.

Hmm, sound even more familiar?

Or, even more importantly, you see that Mom at the store who you can tell is at the end of her rope, a child is melting down in her cart, another is tugging at her skirt, she's trying to pick up some produce, and you can tell she just wants to go into a corner and cry. Her reason doesn't matter. Maybe it's special needs issues, maybe medical for one of them, herself, her husband, another family member. Maybe her husband just left, died, or is never home. Maybe she is lacking so much confidence that she just needs someone to come along side her, put an arm around her shoulder and tell her she can do this. God will lead her and she CAN love and parent these children. You just don't know. So, instead of putting your nose in the air, bow your head. Pray for her to be filled, to receive what she needs, and to know she is a child of God that is loved beyond measure. And, if the opportunity arrives, smile at her. Maybe tell her you know how hard it is and are praying for her. Maybe just give that Mom look that speaks volumes such as "been there, you got this".

It all comes from love. Do we have the love of God or not? If we do, it should radiate from us, especially to other Moms. We are in their shoes. They are the people we should easily relate to in this world. Let's not hurt each other in the way we do. The little decisions we make don't matter. What matters is our Heavenly Father's love for us and for them.

Tuesday, February 2, 2016

Talking it Out

We talk in our family a lot. We discuss everything. It's not uncommon to hear "hey, can I talk with you a minute", "kiddos, come here, Mom and Dad want to chat with you", "can we go in your room for a private discussion", etc from us or the kids. We believe communication is a big thing in families and also something that is a lost art.

This doesn't just apply to when the kids are in trouble or when one sibling is picking on another. We talk about life changes, goals, ideas, thoughts, feelings, medical things, and more. We want the kids to know they are important in our day and for us to be the natural source of support for them. Our kids know it all when it comes to the big things in life, and the small things (of course, not the private things my husband and I discuss as a married couple).

Having said that, sometimes we, as parents, choose to keep things that will directly affect our children private. Some things, even if they aren't huge, will have an affect on our kids (emotionally) that we want to prevent.

For instance, our older son HATES change. He doesn't care if that change is going to be the best thing in the world and a blast to do. Change is bad in his mind. He loves where we live, doesn't ever want to move, hates the city, and yet still longs for his old house that was smaller, older, with a small yard, average neighbors, no real friends, and on a busy, busy street simply because it's what we had when he was born and anything else is change. Change is hard for him. He's just now, over 5 years later, starting to talk about how we should live in this house forever and not buy a new one. So, this is just now beginning to be his norm. 5 years people.

Now, this isn't such an off-the-wall thing seeing as he has Autism. In fact, it's extremely common for many kids on the Autism spectrum. Just ask the OT who has had to half drag a child out of a room because moving from blocks to home or from a chair to a swing is a horrible thing because it's change. Ask the Mom who dared put pepper on a food instead of salt and "what are those black things, I am not eating that" happens at the dinner table. Ask the Dad who went down 1st street instead of how Mom always goes down Main St. and you will know all about change in the ASD world.

You can see why we are very, very selective with how we communicate change or new things to him. More specific and recent case in point, his diet. He has a very lax diet because he was so self-limiting due to his medical issues. The diet his doctors wanted him on made his issues worse so we put it off until we could build up his food options for oral intake to the point we felt safe to make the big dietary changes. We wanted him beefed up physically and with what he would take by mouth. We have reached that point. It's time to make his diet changes. His doctors agree.

We aren't telling him.

We tried to tell him about diet changes in the past and he got so anxious over changes that it was worse for him than the actual new food and eating method. We are just going to work on the wean and new foods and see what happens. We hope, by the time he figures out there have been ongoing changes, that he will be past the initial hump and will be living with them so we can say, "but you have been doing it for 3 weeks, so it's not new and you see you can do this". My husband and I talked about this and feel it's best considering his issues. His doctors feel it's the best as well.

So, communication ... it's hard. We are talkers in this family. We don't like to spring things on our kids. We like them to feel included and like a vital part of family decisions. But, as parents, sometimes you have to realize you know your child best, you know how different topics will make them react, and you have to withold information, at least for a while, to help them transition.

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