Friday, June 1, 2012

Weight loss, blenderized diet and G-freakin'-J.

So, such as the feeding battle (sometimes) goes, there is no clear answer yet. No "easy route". No easy fix and no diagnosis. I took Case to his pediatrician Tuesday. He is concerned. Case lost another 4.5 ounces (in one week). In the month and 1/2  since Case was at the pediatrician he's gained (all in all) only 5 ounces. It's looking like the next step is a blenderized diet (through the tube). There is no malrotation (which sucks, I was really hoping that would be our answer). Dr. Chopra (pediatrician) and Dr. Ruldolph (GI Dr.) mentioned the possibility of giving Case GJ tube.

"A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum in the x-ray department.
GJ tubes are used for children who cannot tolerate feeding into the stomach, usually due to gastroeshophageal reflux (GERD)."
This tube would stay in his body most the time. If the tube got pulled out we would go to Pittsburgh. We would run continuous feeds 24 hours a day (I think we would have some small breaks) instead of the 5 bolus's during the day and night feeds. The food would go straight to the intestines and nothing into the stomach. Blah. GJ's sound like no fun...BUT if that is what he needs, that is what he will get. Don't quote me on the details, I'm not a hundred percent sure exactly how this works and I am hoping and praying that if he needs, it it will work. That eventually they will find the problem and that maybe, just maybe this blenderized diet will miraculously make all of this go away..:)
Which takes me back to trust. I do trust that God is in control. That he doesn't always just make your problems go away but instead teaches, grows and blesses you along the rocky roads. I have been and continually am blessed. It's been difficult to ALWAYS trust. I cried a little in Dr. Chopra's office. I just want my baby to be okay but the truth is he is okay. He is lovely, and he is being taking care of. This is only a season, and He is stronger than any possible, terrible scenario today.

I've had the song "Your Hands" stuck in my head lately. My favorite part and the part that plays over and over:

"When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands"-JJ Heller, Your hands.
*disclaimer: please do not think that I am complaining or that I wish Case were any different. I don't like seeing this sweet boy in pain and struggling to grow even a little. Today I decided to blog with my heart on my sleeve and my prayers on my tongue.  ;)

You Hands.-JJ Heller


  1. "Lizzy": You are a strong spiritual girl, and everyone is allowed to feel as you are! In fact, we would think you abnormal if you didn`t!
    My Niece goes through some trying times as well with her son, 3(leg issues since birth),you both come here & talk to us & tell us your feelings & questions, and it just shows us even more how much God is in control of your family`s life.
    I love you very much <3

  2. There is nothing wrong with feeling as you do AND expressing it. Someday, there will be someone reading this blog and they will feel better knowing there is someone else who feels the same way! I pray that you find the answers you seek and that the GJ tube will help Case to thrive.

  3. There is now a 100% real food, shelf stable option for those on a feeding tube. You can learn more at,