Momma Pride~

 

I can’t tell you enough on how proud I am of my little boy and how big he has gotten.

Today we went to the natural food store to look for his new safe food.  Upon arrival, we looked around and could not find it.

So I asked him “What should we do?”  His reply was “Well let’s go ask the clerk” 


Ok this sounded very old for him…  So he turned around and walked up to the cash register all on his own looked up at her with his sweet loving eyes and asked  “Do you have any amaranth balls or flakes?” 

They all just stopped with hands over their mouths almost in tears that this 5-year old knew exactly what he was looking for…. 

So the clerk nicely led him to the amaranth. 

 

Then Mack asked “Do you know if there was any corn or wheat in with those?  I don’t want to be sick tonight.” 

 

Her reply was “I am sorry Hun, we don’t know”

 

He looked at me with disappointment and said “well, I guess we have to go somewhere else, I don’t want to be sick Mom.” 

 

She did nicely say that if mom gets her the brand that she can carry it there for him from now on…

 

Mack’s reply was “That would be nice, Thank You!” (so I did let her know what brand we use). 

 

And yes, I still bought the one he asked for because it meant so much to him and he is going to make crackers for sissy to have with him.

 

As a mother with a food allergy child, I am so proud of my child for learning so much and trying so hard to keep himself safe and reaction free. 

 

He was so proud of himself for his first real food pass and wanting mom to make crackers for him.

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. 

Mack has found his safe food...

This has been the hardest thing we have ever had to face before in our
lives and do not wish this kind of stress and anxiety on anyone.   EVER!



The thought of loosing all food for your child and you have

nothing at all to provide your child is so unimaginable. 

 

To even explain it to another parent or doctor just seems

so delusional that we stopped explaining it. 

It was tearing our family apart never mind our sanity. 

 

It got to a point were even his "safe"  was making him sick.  It was time... 

We could not wait anymore for Elecare to help us.

We had to take a Leap...  A big LEAP!

"Fight 4 Mack"

                                                 by Cyndi Merrill

Sorry my child does not look sick

His food is what keeps him strong

For the doctors had to pick

What would make his body sing a song

 

No other food has worked for him

No other food has kept him healthy

Please Elecare why commit a sin

And starve my child to make you wealthy????

~~~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?

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...

"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.