Monthly Archives: October 2017

The Comeback

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Ever feel like this guy?  I have and quite often lately.  After developing The Poopinator I was sure Matt’s problems were over…and for a while they were.  Slowly it stopped working.  Before I knew it, Matt was back on Miralax and then some.  Each additional medication and technique would work for a while then stop working.  At one point I told his GI doctor in exasperation, “I feel like I am doing CPR on his colon all day long!”  The terms appendicostomy and colostomy began to circulate and I became worried.  How could this be?  He’s super hydrated and has the cleanest most fiber filled diet of anyone I know. What am I doing wrong?  Answer:  Absolutely nothing.  Even the best blenderized diet can’t fix a mechanical problem.

Eventually he ended up back in the hospital for yet another clean out. I needed answers to questions that sometimes even doctors can’t answer.  My thoughts became filled with “What ifs?”. Further tests were done that showed he did not have a specific area that had stopped working but that he was slow over all.  So we left the hospital cleaned out and back to square 1.  If the current regimen fails then we will have to carefully consider what is best for Matt. Even though the test didn’t show something that was an easy fix,  I still feel better.  Knowing is way better than not knowing.  Now we can move forward to whatever the future holds for him.  And always, I pray and hope.  God had a plan for Matt’s life when He placed him in our family (Jeremiah 29:11).  My job is to make that life the filled with as much quality as I can.

So, since quitting is not an option, I will blend on while listening to my new anthem “The Comeback” by Danny Gokey.  Feeling defeated today?  Click, listen and be revived.

Raiden’s Breakfast Blend

 

Raiden Barnes
Raiden

One of the most rewarding parts of being a tubie parent is being able to help others along on the journey.  Raiden’s mom and I connected through a group online and now I get to watch him thrive on…You guessed it.  Real food.  Just look at that smile!  I don’t know about you but I think he’s saying, “Thanks, Mom!”

Getting started can be scary and overwhelming.  Just remind yourself that, barring any dietary restrictions, tubies are real people who need real food.  Think to yourself, if my son, daughter or family member could take in 100% of what their body needs to thrive orally, what would they eat?  If the person was able to eat before the tube was placed, what did they like to eat?  That is always a good place to start.  If your tubie is a baby just starting out, introduce 1 food at a time just as you would any baby, paying special attention to possible allergic reactions.  There is also a hidden benefit to the tube.  Tubies often get a more balanced diet because you don’t have to battle their taste buds.

Now, the title of this post is Raiden’s Breakfast Blend so let’s get to it.

Raiden's Breakfast Blend 8

Ingredients:

  • 1/2 cup of old fashion or quick oats
  • 1 cup of Fairlife whole milk
  • 1  cooked scrambled egg
  • 1 apple

Directions:

Combine oats and milk and cook according to the directions on the package.  Cook the scrambled egg and set aside.  Cut apple into quarters and remove the seeds.  DO NOT PEEL.

  1. Place apple oatmeal and egg into the Vitamix container (in that order) and secure lid.
  2. Select Variable1.
  3. Turn machine on and quickly increase speed to Variable 10, the to High.
  4. Blend for 1 minute or until completely smooth.
Raiden's Breakfast Blend (4)
Enfit Syringe with Adapter

This blend is about 300 calories.  If the blend is too thick, water can be added to reach the desired consistency.  Thinner blends can have lots of bubbles so it’s best to let it sit a while before giving it as a bolus feeding.