Friday, February 21, 2014

~~~Living on expired food~~~

We have now gotten to the point that Mack is living off of expired food.  There has been little progress from Elecare (Abbott) because they have changed their formula yet again.  So we have called and requested a sample of this new, new formula in hopes that Mack’s body will accept it. 

The feeling that goes through a mother and father when they have only one source of food for their child and it is expiring soon is torturous. 

What do you do?  Where do you go?  How do you care for your child?  How will your child survive?

You would like to think you could go to the local farmer pick up safe organic 
food and feed your child, right?

Saturday, February 15, 2014

Our Mack Attack: "Real Worth" ~~~ Updated

Our Mack Attack: "Real Worth" ~~~ Updated: What is the worth of a child?   What is the worth of your child?   Do you have a worth on your child? Is your child worth spending...

Friday, February 14, 2014

"Real Worth" ~~~ Updated

What is the worth of a child? 
What is the worth of your child? 
Do you have a worth on your child?

  • Is your child worth spending every day and night taking care of them?  Pouring your whole heart and soul into them.
  • Is your child worth every smile because you spent time with them?  Consoling and comforting them in their time of need.
  • Is your child worth every hug because you love them?  Unconditionally.
  • Is your child worth seeking out every specialist to help him survive?  Yes, yes they are…

~Our Little Tubie~

For months after being born, we tried as hard as we could to feed our child.  It was a constant battle night and day, screaming, crying, getting sick, and just not being comfortable at all.   He was born at 20% and slowly declined to a 2%, due to unknown reasons at the time.  Except for constantly getting sick and throwing up.  Doctors at the time said it was GERD and should outgrow it by 6 months….  

Six months came and went with a hospitalization, to switch from nursing to formula.  Because they thought he was allergic to my breast milk.  So doing that should help him thrive. 

Then the bottle refusal began, would only drink 15mls and done.  Absolute refusal…  This is when our juggling act began.  My husband would try feeding him, he would refuse.  My daughter, he refused… UGH.  So by November of 2009, we had gone from 2% to below zero and we were holding our lifeless child. 

They tried doing a NG tube and he started bleeding everywhere out his nose.   The doctor at the time rest assured me she knew how to help him and would save my son.  She picked him and said “We will save him”. 

What mother would argue? I said “OK “and off they went.   She came back in a couple of hours, with a feeding team and explained what they did.  “You did what…?”  I asked “You did WHAT????”  I asked again…. As shock set in.   

What is the tube?  And how am I supposed to take care of him?  Dazed and confused I called my husband.  I had never ever heard about a tube, never mind taking care of a child with one. 
"Oh, What a trip this is going to be! "  Hands to forehead in disbelief

He woke up after a couple of feeds and looked great!  Doctors were amazed on how well he was doing.  We were only there for two days and he still had some volume issues, but was doing better.

So they had a nurse come in and taught me how to hook-up his peg tube and do all the fun stuff to keep him healthy and thriving.  She did save my child’s life… That I will thank her for, but we still had a long road as to his diagnosis and why he needed a feeding tube in the first place.

After a year of struggling, we found out he was aspirating on all of his fluids and had severe food allergies (Food Protein-Induced Enterocolitis Syndrome (FPIES) and Eosinophilic Esophagitis) this was why he was not able to nurse or accept a bottle or even eat foods like you and I would.


We are still in the process of controlling is food tolerances and he still aspirates on his foods, but he is a happy go lucky boy who despite all of the ups and down…. It will not hold him down.


This is our “SUPER TUBIE” and my SUPER HERO.


To follow Mack and his other tubie friends stories go to Wyatt's Blog
Thank you Jessie for all your hard work in getting these stories out.

DISCLAIMER:  The pictures used in this and all posts are property of Mack and family. 
Please no copying or using his pictures or stories without written permission first from his parents. 

Foodless Birthday Party

Food less cake for the birthday boy....
Filled with love and of course gifts <3
Happy 5th Birthday Mack

 He had such a blast playing with all of his friends and family ... 

Everything looks better upside down
Kids loved Aunt Mary

Mack's cake - Made with love <3

Say Cheese!!!
The awesome staff  at Nuttin' But Good Times

Thank you all that came to celebrate Mack's 5th Birthday. 
In lieu of gifts Mack raised a total of $400 dollars that sent directly to the foundation of his choice.
And the best part is none of the kids got sick!!! 
Yay for snow cones!
DISCLAIMER: These pictures are property of Mack and family. No copying or use of pictures or stories are permitted without written permission from parents.

Check out the FPIES Foundation Facebook page and see Mack in the news:

Saturday, February 8, 2014

The Golden Castle

As you now know Mack has FPIES and EoE.  
These are both very rare food allergies and to have both combined, is even more of a challenge. 

Mack at one point was able to eat some foods and was able to develop a love for food. 
His favorite was Breyers Natural Vanilla Ice cream, Salami,
Lays potato chips and yogurt.