Sunday, June 24, 2012

Our 30 Hour Feeding Tube Experiment

There are a few facts I have been floating around in my brain lately:
  • Mr. Boy has the ability to eat... he can and does swallow food from time to time. 
  • Mr. Boy likes to play with food and is not averse. 
  • The issue that necessitated the feeding tube, all day-long vomiting, is no longer an issue.
  • Mr. Boy does not eat because he is not hungry and does not realize food's purpose. 
  • Mr. Boy chokes a lot while trying to eat and the Drs mentioned this was probably because of the feeding tube in the back of the throat
These facts have led me to the following assumptions
  • If we take the tube out, Mr. Boy shouldn't struggle with choking while eating as much.
  • If we stop the feedings through the tube, Mr Boy should get hungry and eat.                                 Problem solved right?!

I've been thinking about these things more than ever with the fast approaching option of surgery to insert a feeding tube port in Mr. Boy's abdomen. During our last Gastrointestinal visit, I told our dr how Mr. Boy has been doing and that he was eating some foods and no longer vomiting. After saying this, the Dr said, "Well then it looks like Mr. boy will be off the tube in a year or a few years." Bleh. I know this is the norm and the typical procedure to take it painstakingly slow, but I still feel like I'm punched in the stomach when I hear it out loud. 

I was wrestling with all these thoughts on Thursday, when I left Mr. Boy alone for a moment in the living room without putting his feeding pump backpack on his back. Mr. Boy started crawling to me in the kitchen and usually when he does this, he will eventually get to the end of his tube which pull on his shirt where I put extra tape so it does not pull on his face, and it stops him in his tracks, where he will yell for me to come help him. This time the tape on his shirt failed and the aging tape on his face ripped off, sending the tube flying out of his stomach and nose. The poor babe was in shock and as I tried to console him and felt horrible for not changing his face tape as I knew I should have that morning, I felt the tingle of excitement, thinking, "now's my chance to try my experiment... maybe this will be it!"

All Thursday afternoon I happily offered Mr. Boy all kinds of foods. He actually ate the most food he has at any other time in one day. It was still nowhere near what a kid his age should be eating, but it was a start, and a good one at that, I thought. My excitement was through the roof, Thursday night, knowing that all night long Mr. Boy is usually being fed through the tube, but that night his tummy would rumble and he would awake to a feast. Mr. Boy would eat and all would be right in the world! I could just see my smug look as I told our therapists and Dr just how clever, wise, and insightful I was to try this. :) Well, Friday Mr. Boy was hungry alright, but this made him irritable and not knowing that food is the "cure" to the hungry feeling, just made him mad. He refused any nourishing drinks and almost all the different kinds of foods I offered him and only chugged water all day. I offered him anything and everything I could think of: I danced around in front of his highchair, sang, played music, took him to watch his cousin eat, tried eating in front of the tv, and all to no avail. He angrily pushed it all away. Alas, we decided we'd better put the tube back in that evening and did so. 

After sobbing a bit Friday, David helped me realize it's ok.  It was a good trial run and in one month when it is time to change Mr. Boy's tube to the other nostril, we will leave it out again, re-trying each month till we need the tube no longer or till he has the surgery. I'll update next month when we try again! We are praying that Mr. BOy will start eating and leave the feeding tube in the dust, but even if he has the tube for several more years, we are blessed. It is making him grow healthy and strong. Yes, it is inconvenient, I loath it at times, and it's not fun for Mr. Boy's face or fun for him when he wears the backpack with the pump in it, but it really is nothing in the scheme of things and honestly could be much, much worse. So here three more pics to reward you for reading through that long post. Good job!

Wednesday, June 20, 2012


It appears I am late again with my posts... but everyday is a good day to praise the men in our lives! 

Mr. Boy wants to be just like daddy. 
He puts on his hat anytime he sees it.

Going through daddy's wallet.

Grandpa Phillips

Grandpa Wright

Seeing his and his grandaddy's reflection in the mirror.

Proverbs 14:26 - "Whoever fears the LORD has a secure fortress, and for their children it will be a refuge."
      -Thank you Grandpa Wright, Grandpa Phillips, and David, for fearing the Lord and creating a safe, loving home for your children and grandchildren. 
Genesis 18:19 - "For I have chosen him, so that he will direct his children and his household after him to keep the way of the LORD by doing what is right and just, so that the LORD will bring about for Abraham what he has promised him.
     -Grandpa Wright and Grandpa Phillips, you were specifically chosen to be our Fathers and Mr. Boy's grandfathers because you are the perfect ones for the task. Thank you for directing us to the Lord and pointing us to the Heavenly Father through your loving example. David, you were specifically chosen by the Lord to be Mr. Boy's Daddy. Thank you for rising to the task and pouring your love out on our son. Mr. Boy is a blessed little boy with all these amazing men in his life!!

Wednesday, June 13, 2012

30 Days of Prayer

Ok, I am embarrassed that I am 19 days late on this, but you should all go right now, to the blog, Our Little Tough Guy . My friend is posting 30 Days of Prayer for a different sweet child with disabilities each day. Her precious son is only a few months younger than Mr. Boy and was born with the same condition. Her blog and posts have encouraged me throughout this year as I have known her and I know they will touch you as well. There are several kids with this condition included in the days of prayer, and Mr. Boy is Day 16, but I encourage you to read and pray through all of them with me as they are all so special and each post is so encouraging and precious. I learned about kiddos and disabilities/illnesses I could never even imagine. It will bless your heart. Thank you Jill, for starting this journey, I can not wait to see what the Lord does through all these prayers!!

Our friend (right) with his loving brother (left)

Saturday, June 9, 2012

On The Charts

It's official, Mr. Boy is on the charts for his weight, meaning the range of average weight for kiddos his age (1% being the smallest kids, 100% being the biggest kids and 50% being the average).  He is somewhere around the 3rd or 5th percentile for this age-group, but hey, he is on the chart! :) He is still far below the chart for his height, but that's ok. And quite frankly, the chart altogether doesn't really matter, but now that he is on it, I thought we could celebrate. :) How better to celebrate than with some random pictures. ha!

eating cheetos or sipping tea?

Friday, June 1, 2012

It's Raining Girl Scout Cookies

David's Aunt Patty sent us a BUNCH of girl scout cookies and we are very grateful!!! Mr. Boy liked the boxes... and I am loving what is inside the boxes. Whoever decided these should only be sold once a year, probably sits in their evil lair covered like Mr Boy, in cookies year-round, snickering sinisterly, while the rest of us suffer, girl-scout-cookie-less, most of the year.  But by the looks of it, this year we will be snickering happily as well. Mmmmwahaha ha ha! 

no cookies were injured in the filming of this video