New Year ~ New Hope

Last year was quite the rollercoaster ride for our family.  Lots of in and outs of hospitals, doctors, nurses, friends and family.  The one thing that has remain constant is the love and respect that we have for each other in our house despite one heck of a rollercoaster ride.



1.  Mack has been on the Tolerex formula now for well over 8 months and is doing very well on it - clean scopes and no reaction!!!  Yay, for a glimpse of hope, he made it to his 6th Birthday, which we didn't think was going to happen.

Sissy made a Ice Castle for my cake <3  Yummy!

2.  He also has been on cod liver oil to help fill the gap of the oil missing in the Tolerex and again, clean scope and NO FPIES reaction!!!! 
Yay for wonder number 2!!!!!


3.  And the best one of all is....   We have found Mack loving and caring team of doctors that listen and have helped him grow and thrive in the past 5 months!!!!  Forever grateful!

 

We still have a long journey ahead of us,

but the pluses outweigh the negatives and

there is a glimmer of hope that we have never seen before.

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. 

Life With The Never Ending

Virus-Like Food Allergy....



So you say you hate being sick and it sucks to have a cold, agreed.  

 

*************** 

You say, tis the season (allergy, cold, or flu season) and that you feel like you are dying, agreed it's not fun. So you take some medicine to help you feel better and comfort yourself until the ailment goes away.

Funny how anytime we are sick, we absolutely hate it and are miserable.  Why you ask?  Well we do not feel good and our body hurts, logical enough.  But somehow we seem to have some type of medicine or concoction to help sooth ourselves or someone we love. 

 

Say we have a really bad belly ache from something we ate that didn't agree with us... we run for the tums, pepto or even ginger to help us feel better and find some comfort, right? (hopefully).

 

************** 

Now lets say, the virus, flu or cold starts to go away, you feel better and you stop your medicine and carry on with normal life, sounds great right, yes in a normal world this would be ideal.

Ok, not so normal world..... you get better and then you catch it

again from another family member and you feel yucky all

over again.... actually that can still be in the normal world ;-) .

 

Now not so normal world... your two week flu with all the major symptoms of muscle ache and pain, nausea, vomit, dehydration, diarrhea with blood, belly pain and no medicine to help you...
Miserable, right?  

 

Even worse.... this virus, flu or cold is there everyday your

whole life, caused from food proteins.  One crumb or lick of thisfood could put you in the hospital from shock and dehydration.

 You have no safe medicine at home to help your body fight it off.  Soyou get put in the hospital with IV's and fluids to help you stay alive, but the pain remains.

 There is no EPI PEN for FPIES Reactions!!!!



Imagine your child sick and the care that you give that child while they are sick....you bring them chicken noodle soup, crackers, ginger ale and medicine to help the fever and food stay down.  Now Imagine being a mom of a child that has a food allergy that mimics a virus - EVERYDAY!  There is no getting better, there is no medicine to help with the symptoms, there is no food to help comfort them, there is no way to promise it will end in a couple of days.  Oh and I forgot to mention.... there is very little sleep, but...

There is love, hope and toys... 

 

I hope that one day this hell will end for my child.  I hope that one day he can sit down with us as a family and have a holiday dinner, together. I hope there will be a day that he can go to school and run and play with the rest of the kids and not fear that one piece of food
will put him in the hospital.

Until then, yes we have our good days were we celebrate being together and try to bring some normalcy into our lives...

those are far and few between.

 

 

+

We hope that by posting this people will understand a little bit more as to how Mack feels.  To suffer every day with EoE and FPIES.  And when  you see him smiling and running that means he is actually having a good day.  Please, smile back, because unlike a virus, flu or cold,

he is not contagious.

 

He is just a boy!!!

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. 

 

Celebrate TODAY

because you don't know what tomorrow will bring

 

 

 

Tis the season for SOCCER!! 

Both Mack and his sister, Alyssa, love soccer, wait...  LOVE Soccer. 

This will be Alyssa's 3rd year attending the Challenger Sports British Soccer Camp and Mack's 1st year.

Day 2 because we forgot the camera for day one...



Getting a game plan



 

Wow!!!  Look at him go...

Mission Accomplished!









 

 

 



Alyssa with her soccer face on.
 

 

We love how this camp work because they have the young ones with the older ones to help build a respect and a good team approach. 

Plus it gives our kids something else to do together and have fun.

 

Also and underlying message, is it gives Mack some normalcy and being with other kids his own age instead of in the doctor office all the time.

Yay for Normalcy!!!!

 

 

 

 

 

 

 

 

 

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.   

 

 

 

Kid Time

A Good Day in the Life of Mack
We went to Story Land in Glen, NH and they had a blast.











Mack was having a good day so we decided to venture out into society and give him some "Kid Time"

Finally the first year I have gotten him to sit on the trunk to watch the spider come down..... despite what he is going through the kid still has spunk and energy.



Nothing like an old fashion

carousel ride with the kids.....   LOVE EM' 

 

 

 

Sissy, Mom, and Mack on the Carousel Ride



 



Mack playing a Mad
Scientist in the Loopy Lab

Mack on Dr. Geyser's 
Remarkable Raft Ride




 

 

 

 

A cool train ride at the end of the time to have his feed and

tour the park before heading home.



 

 

He was worn and tired (but so were we)

and it was so worth it!!!

 

 

 

 

 

 

 

 

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.   

 

 

 

New Doctors and New Hope....

We are trying to remain hopefully despite our ups and downs with Mack and his healthcare as well as his teams that we have had in the past.

We are approaching this new team with open minds in hopes that it will work this time.  We can not judge the new doctors based on how others have failed us in the past.  Always keep the light on in the room that you are entering, for you never know who is in the room.

These are hard lessons for adults to learn never mind explaining this to a 5-year old that is tired of not having food and living in pain for most of his life. 

Moving on and moving away from the old.... 
Hoping the old saying prevails that things happen for a reason.... Please God, let this be the reason.

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. 

 

I try to fix you............

When all the world is against us
I try to fix you...But I can't
So Please God ~ Can you fix 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. 

  Worth?  What is worth to you?

  Honor?  What is honor to you?

  Trust?  What is trust to you?

  Truth?  What is truth to you?

  Life?  What is living to you?

  Peace?  What is peace to you?

  Freedom?  What is freedom to you?

  Respect?  What is respect to you?

 

 

This is my child, that deserves my worth, honor, trust, life, peace, freedom and respect.

Despite the ones that can't follow their own oaths. 

I stand by my child with worth, honor, and respect in truth.

He trusts me to teach him what worth, honor, trust, life, and respect are to bring him freedom.

That is my oath to him.   To teach him the truth and show him what real worth is... 

Because he is worth it. 




~ Good-bye...


DISCLAIMER: These pictures are property of Mack and family. No copying or use of pictures or stories are permitted without written permission from parents.

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. 

 

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:


https://www.facebook.com/media/set/?set=a.724507770907024.1073741838.262828370408302&type=1

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. 

Can you tell the difference?

 

 

One keeps him healthy, happy and carefree

The other one homebound, sick and lifeless

One keeps him swimming, skiing, and

riding rollercoaster rides

The other one hospitals, doctors, and

long car rides to these places

 



 

The company said they changed nothing to the label; tell this to my child…

he does not know how to read labels. 

He only knows one day he is fine, the next not so much.

 


Safe for Mack

Not Safe for Mack

We are going to be testing the new label one more time (already done it 3 times) but we have to…. If it does not work, my child will be left with no safe food source because a company did not change anything, but they cannot tell me their supplier source or from which plant the product was manufactured, because those are their protective rights.  Where my sons’ right to have  his safe medical food that was prescribed to him by his doctors? 

 

Where is my sons’ right to life? 

I need help right now trying to find his safe until I can find a safe replacement or get the company to reveal what changed or what facility the safe can comes from...

DISCLAIMER: These pictures are property of Mack and family. No copying or use of pictures or stories are permitted without written permission from parents.
 

Lego LEGAL!!!

 

Today is the day when our little boy has become

Lego LEGAL! 

He has found his new love in Lego building

and letting his imagination run free

 with creating houses and cars...  

Despite all that he has been through

I love seeing him being a happy and loving child.









DISCLAIMER: These pictures are property of Mack and family. No copying or use of pictures or stories are permitted without written permission from parents.