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.  

 

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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).

 

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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.