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Repost from December 2011: Grateful for c. Diff and Dirty Laundry

Facebook reminded me about this post from my family blog today. I had forgotten some of the details about the day, like how it ended, and all I really remembered was cleaning up the vomit. I'm glad I wrote the rest of it down because it's pretty warm and fuzzy at the end. I'm also glad life is different now than it was then because that was hard in a different way than the hard things we're dealing with now. Anyway, I thought this would be worth sharing again since I don't know if I ever posted it here.


Yes, that's right. Today, I found a reason to be grateful for c. diff (which is a terrible gastrointestinal illness that causes diarrhea, is highly contagious, and is not killed by hand sanitizer) AND dirty laundry. Let me back up a little.
Last night, I went to bed (later than I should have) with a tension headache. The kind that starts in between your shoulder blades, crawls up your neck, and makes you feel like someone has taken a chisel to the back of your hea…

Black Friday Deal on Instant Pot!!

Instant Pot!!
Okay, people, if you don't own an electric pressure cooker yet, now is the time to get one! This is my most favorite small kitchen appliance! We have adapted most of our favorite recipes so they can be made in a fraction of the time in this beautiful little piece of stainless steel and plastic.
There is nobody paying me to say this, I just have found it really, really useful! I can make large batches of things that my food allergic kids like, and then freeze them in portion sizes. I haven't tried making bone broth yet but that is on my list of things to do this weekend! Bone broth is so good for the gut, especially when you have a compromised gut like many kids who are on nutrition support do, and when you can make it yourself in about 30 minutes, why not?!

Amazon is having a SMOKING deal on the 6 quart Instant Pot for Black Friday. For today, the price is cut from the usual $129 down to $68! It really is an amazing deal so if you've considered getting one, n…

ENFit is here!

After years of waiting, stressing, and anticipating, ENFit is FINALLY rolling out! Yes, I used an exclamation point, and yes I meant it in a happy way. I can't be the only one that's tired of adapters, right?? I first heard of ENFit in early 2013 and at that point, it was supposed to roll out in 2014. Here we are in the 4th quarter of 2016 and we are FINALLY getting ENFit supplies for both ends of the connection, and all I have to say is it's about time!

A lot of people are still unsure of what ENFit is and why the change is happening. For more about that, you can read here, here, and here. The condensed version is that there have been serious injuries and deaths due to medical misconnections, so all medical device connections are changing in phases to be incompatible with each other. ENFit is the name of the enteral (feeding tube) connection. The process started 10 years ago, and although this {ridiculously long} transition phase is a pain in the rear, the end goal is saf…

Kindergarten: DONE!

It is unreal to me that another school year has come and gone for my awesome kiddos, and that kindergarten is already over for Raya! A lot has been asked of this crew in the last 10 months. Huge things that have meant making new sacrifices and taking on new responsibilities. They've risen to the occasion and I think we've had a great year! {read: we friggin' survived!} 

I can't believe how much they've all grown up this year! And how trashed their shoes are. Haha. I'm so proud of them and we are ready to have a fun summer!

Because of her feeding tube

There was a time in this girl's life when we wondered what the future held for her. We wondered if she would ever be healthy enough to live a normal life. If she would go through her whole childhood feeling as sick as she did during her first 18 months. How malnutrition would affect her development. Every now and then, I catch myself watching her in amazement. She has come so far and overcome so much! A lot of things are still not easy for her but she does them anyway.  In my role with the Feeding Tube Awareness Foundation, I talk to parents all the time who are hesitant to go forward with tube feeding. They're afraid that using a feeding tube means they're giving up on their child, or that they're doing something permanent to their child if they consent to a G tube. I used to be that parent, and I wish I could help every other parent facing that decision to see that the most important thing is that their child is receiving adequate nutrition, and that for some kids, …

FTAW 2016- Development: The Power of Tube Feeding

Today's topic:
Development: The Power of Tube Feeding
What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding?



Development is not the first thing that comes to mind when the topic of tube feeding is discussed. The first thing that comes to mind is survival. Ironically, it is the act of living in survival mode that inhibits developmental progress for many children. I remember sitting in a class in high school and listening to the teacher lecture about Maslow's Hierarchy of Needs. It looks something like this:

I can still remember the teacher talking about the most basic, primal human needs. The bottom of the pyramid contained physiological needs like food, water, sleep, breathing, and shelter. She explained that once those needs are met, the individual moves up to the next tier of the hierarchy to the safety and security needs, such as employment, financial stability, health, and…

FTAW 2016- Nutrition: The Power of Tube Feeding

Today's Topic:
Nutrition: The Power of Tube Feeding
There are long-term consequences to malnutrition. For some people, there wouldn't be life without tube feeding, but for others, they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren't able to eat enough on their own to get the nutrition they need.

Nutrition can be a touchy subject among tube feeding families. In the tube feeding world, I think many of us have different feelings toward nutrition in its various forms at different points in the tube feeding journey. Before Raya was even born, I planned on breastfeeding her just like I had done with her 3 older siblings. It wasn't that I had anything against formula, I just wanted to breastfeed. (and formula is 'spensive) One of the hardest things that happened in the beginning of all this was being told that my breast milk was literally harming my daughter and that I had to stop giving it to her. For a while, I kept pumpin…

FTA Week 2016- Energy: The Power of Tube Feeding

Today's FTA Week topic is:

Energy: The Power of Tube Feeding
Post your story or pictures of you or your child thriving with energy as a result of tube feeding. Or post before and after pictures to show how much tube feeding has improved you or your child's energy.


I've seen a lot of really incredible before and after pictures over the years that I've worked with the Feeding Tube Awareness Foundation. We've seen so many children who have struggled for months or even years to keep from losing weight that they can't afford to lose. They are skin and bones. Shadows of the children they used to be, and a far cry from their peers. Then they get feeding tubes and the life is restored to them. They gain weight. They grow. They run and play and do all the things they didn't have the energy to do before.


Our before and after pictures aren't quite like that, but they are incredible nonetheless. This is our before:

When I think about Raya's "before," th…

FTAW 2016- Awareness: The Power of Tube Feeding

It's Feeding Tube Awareness Week again! Today's topic is:

Awareness: The Power of Tube Feeding
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding - most of which you can't see.

There are many reasons why Raya has a feeding tube. There were many reasons why she got one at the age of 10 weeks old, and there are many reasons why she still has one 6 years later, so I will explain both.

It started a little something like this:

And this:

In short, we had a miserable, refluxy, crying, screaming, projectile vomiting baby. She wasn't our first refluxy baby. She wasn't our first to spit up what seemed like most of what she had eaten. She wasn't our first to cry more than the average newborn either. She WAS different from the others though. She was the first of our babies to projectile vomit. She was the first to not respond to the comfort measures and interventions that had helped the others, a…