Blenderized Diet: Our Tips & Tricks

Feeding Tube Awareness Week 2015

Little Man has had a feeding tube for over 3 years now, first starting with TPN (IV nutrition via a central PICC line), then an NGT tube followed by his surgery for a G-tube.  The G-tube has normalized his life, living with several food allergies that limits his diet.  The G-tube allows us to provide his safe foods, blenderized, for his daily nutritional needs.  He is strong, growing, and thriving. I wish I could have told myself 3years ago how much the G-tube would change his life.  But, the G-tube itself is only part of the reason of the success he has experienced because of the G-tube.  What goes in the tube is the other part.  He has so many allergies, finding him a safe, nutritionally complete, diet was a daunting challenge of managing his FPIES. At 5 years old, his diet remains limited but his life isn't.  That is because of the freedoms allowed from his G-tube.  For Little Man, he thrives because we are able to do bolus feeds of his safe blenderized foods throughout the day.  We can't use gravity feed or the pump because of the thicker consistency of his feeds, but we have learned the best ways to provide his blended foods through his tube. 

I thought, in honor of Feeding Tube Awareness Week 2015, I would share some of the tips and tricks we have learned to making his bolus/blended feeds more successful, convenient, and less messy! 

First, this is how we dry out his tube- we rinse/wash it out after every feed.  We only get 4 of these a month from insurance, 1 per week, so we must keep reusing the same one as long as possible.   I wish I could take credit for this ingenious idea but I got it by following another great resource Mic-key's on the Go when they posted about it one day. Be sure to follow their page- they post some great things! 

Next is this kitchen appliance I couldn't live without!  We were fortunate enough that my sister donated her Christmas bonus to Little Man's needs one year -- this was needed so we purchased it, even before we knew he would need it for a blenderized diet for his G-tube. 

These two pictures show our storage methods.  The top picture is the every day needs of syringes- kept out on the counter, ready to be used for the bolus feeds. We wash them as many times as we can before the rubber tips wear down and are too tight to be used (wish they would last longer!) The bottom picture above is the shelf in the pantry- handy in the pantry, for quick restock of his supplies, including his tubes/extension sets. 

Next up, mason jars.  Mason jars work excellent for storing feeds- I can keep extra feeds in the freezer for back up and thaw easily in the jar (in the fridge of course). I label the feeds with the date, for food safety.  If it goes into the freezer, I also will mark what is in the jar but these jars are just ready for the fridge.   This is Little Man's current mix of purred pork roast, peaches, and goats milk. 

Next, I would like to share a bag I purchased.  I purchased this from a fellow FPIES mommy via a Thirty-One Sale she was having.  I had actually saw a post for another bag and how easily they fit the same mason jars we use for his blended feeds so I ordered that bag and got this bag half price -- and found this bag to be even better for holding his supplies -- and keeping them at a perfect temperature!  In the pocket of the bag, I keep some supplies handy - some wet wipes (because blended feeds can get messy), an extra tube (because tubes clog!), a syringe, bottles of fresh/safe water.  

This is what the inside of the bag looks like- an ice pack (not included with the Thirty-One bag but purchased separately) designed to hold soda cans, neatly holds our 6oz. mason jars with feeds in place in the bag; while the Thirty-one bag holds up to the frequent uses, washes clean for spills and keeps foods at the right temperature.  (disclaimer: I am in no way involved with Thirty-One sales and am just a happy customer!). 

This next picture shows the syringes ready to go for a 'feed'.   The extension line is 'primed' and ready with fresh/safe spring water, and the 2 syringes are filled with the blenderized feed.  If little man is not in the kitchen, I can easily go to him and I take along a damp washcloth to wipe up any drips (they happen!) 

This is a trick my husband discovered, if you wet the rubber end of the syringe before inserting it back into the tube, it slides in easier (for these repeated uses when the rubber end starts to wear down and make the syringe tight).  

A final photo tip is another one my husband discovered - a clogged tube that will not push through the dispensing end of the tube can be sucked out through the button end with a syringe!  This has saved us from having to throw away countless tubes because of a stubborn clog!  

To learn more about Feeding Tubes, be sure to visit Feeding Tube Awareness Foundation! 

A Blenderized Diet for Tube Feeding

Little Man has a G-tube.  This tube was surgically placed in his stomach in March of 2012, by the fall of 2012, we were beginning to use it for his blenderized feedings...."feeds" as we call them.  His safe foods get blenderized with a commercial grade blender and this is his 'diet' - his 'safe' diet.  This is what assures he thrives.   A blenderized diet has become a necessity for him due to his multiple allergic 'triggers', his corn 'trigger' being the most detrimental to his ability to tolerate pre-made, complete nutrition, formulas.  His FPIES triggers from minuscule amounts of his allergen - from contamination to trace ingredients, to hydrolyzed proteins.  All result (for him) in severe inflammation, and often villi damage, in his intestines causing malabsoprtion of nutrients.  A bit counterproductive to achieving optimal nutrition for growth.  A blenderized diet of his 'safe' foods- foods that his body accepts as nutrition instead of perceiving as an invader (as the body is capable of doing with this allergic syndrome called FPIES).

I wanted to take this week of honoring Feeding Tube Awareness Week, to provide a peek into what his blenderized diet looks like.

It starts here, well- it starts at the store or from our farmer supplier but here is where his daily diet starts.  A freezer full of foods ready to be prepared for his 'feeds' (or 'blends').   This is mostly peaches.  Processed and purred to be ready to be defrosted and then added to his daily feed. Peaches are a safe food for him but not shelf stable, canned, jarred or other prepacked frozen peaches.  All of those peaches have additives, additives that cause Little Man to have symptoms.  So, we get the safest source- fresh from Georgia in early summer.

 The top of the freezer is some foods we have purchased, and have planned 'trials' for.  There is also some papaya in there- that has been off and on "safe".   Papaya itself is safe but papaya (among other tropical fruits) are frequently 'gassed' to help in their growing and that 'gassing' is where corn is introduced and we have seen symptoms that disrupt his quality of life from even this seemingly small amount of corn, so we have to limit how much we give him and ration it when we feel his body can handle these symptoms -- he tolerates papaya itself and it provides Vit.C so we find ourselves bargaining with FPIES this way some times.  But that is another post, for another day.   Today, we're talking about his blenderized diet for his tube feeding.

On the bottom of the freezer is his safe pork- ready to be roasted in the crock pot (as pictured to the left). We purchase a half a hog at a time, and have the butcher process it into varying size of bone-in roasts.  I leave the bone in for the roasting time and I give it a long roasting time to help some of the components of the marrow to leach into the broth that I use for the liquid of the blend. These nutrients provided in the bone/marrow are providing Little Man with some essential nutrients he can't otherwise get (doesn't have enough safe foods).

Looks yummy huh?  His brothers tease that it looks like a chocolate milkshake! Not quite....

There are several reasons for a blenderized diet, it has several advantages and a few disadvantages and may not suit everyone.  It is perfect for our Little Man, and it is what is keeping him thriving. We are grateful for his tube to provide his much needed nutrition this way.  I am daily reminded of this and, during Feeding Tube Awareness Week, I honor this means of providing optimal nutrition to keep this little boy allergic to so many foods, thriving.

Little Man's "Faces of FPIES Spotlight" visit with Hope for Wyatt

When I first started blogging, among the reasons to do so was to share Little Man's story with others - to keep friends and family updated but also to help other families know some of the experiences we have had.  This blog, although I have written nearly 400 posts in 3.5years, is a mere fraction of what Little Man's FPIES is and looks like from day to day; and that is only a mere fraction of who HE is.  FPIES is a diagnosis, not a definition.

I wish I could share more, I wish I had more time to share more because I have always taken my time with my posts -- being very careful about what I put "out there".   There is so much to Little Man's story that would be scary to read if you didn't know his whole story, so my blogging has lagged behind.   Some would say (have said) that my posts here, sharing Little Man's experiences, are 'scary' in and of themselves, just for being what they are.   I wonder if those people think of what they are saying?   That a little boys life is scary? A sweet little boy only wanting what any other 2, 3, 4 year old boy would want from life -- to be happy, safe and loved.  I never intended telling his story would be 'scary' because his life isn't scary.   FPIES itself can be scary, not knowing how to help your child through the pain, symptoms and vomiting of the FPIES being "triggered", not knowing how to properly read a food label, or how to completely exposures of the 'trigger' food, not having adequate medical help when your child is sick,....these can be what is scary about FPIES.  But, they don't have to be.   One can learn how to read a food label, how to avoid a food trigger, how to avoid cross contamination triggered symptoms and reactions, how to advocate for your child with their medical team -- your partners in the care of your child.   Our son's experiences and life are not scary, FPIES can be scary but it doesn't need to be.   Empower yourself, help empower others, share what you learn, advocate -- help your family, friends and doctors learn about what FPIES looks like in your child and how to help keep them healthy and thriving in their individual environment.  Get help and support and know you are not alone.

I am not alone in our blogging, there are now several dozen blogs dedicated to FPIES from other families on this journey, sharing what they are learning, what FPIES looks like in their child, how it affects them and their family.  A friend I have 'met' on this journey, who recently started to journal her families journey with Food Protein-Induced Enterocolitis Syndrome on a blog, "Hope for Wyatt", asked me if I could share Little Man's story for a "Faces of FPIES Spotlight" she is doing on her blog.  Hop on over and read what we shared on "Meet Samuel", and "meet" Wyatt and his family while you're there.

FPIES Registry!!

The FPIES Foundation announces the first of it's kind FPIES Patient Registry!  This is an exciting step for the families of children living with (and outgrown of) Food Protein Induced Enterocolitis Syndrome!!  A patient registry that provides a voice to patients in a rare diagnosis is so important, a diagnosis that still has research windows open with treatment and management protocols still being developed.  The exact mechanisms of FPIES is yet to be fully understood....and in the meantime, the number of those diagnosed is multiplying rapidly.   This is a critical time for the voice of the patients to be connected -- for doctors providing care today, for studies of FPIES, for additional, new and varied research for tomorrow, for families to be connected, for FPIES to be 'on the map' in this new way.

Please add your voice, your child's voice to this registry.  

Advocacy

“I always thought someone should do something about that, then I realized I was someone.” ~ Lily Tomlin

FPIES and Advocacy are words that seem to go hand in hand.  Many times, for me, the word "over-advocate" has come to mind; but that is another story for another day.   Today, the story is on Advocacy in complex diagnosis.   Complex Child E-Magazine put a call out for parents who have advocacy stories to share them for their September edition, highlighting Advocacy.  As I mentioned above- I have a few on how I've had to advocate, and too many times, over-advocate for Little Man's needs (medical, physical, psychological, etc). All of these the inspiration to the one that I felt compelled to tell...the story of the beginning of The FPIES Foundation.  I wanted to help others feel empowered with the education and support they needed and to advocate where needed- for their children, for the diagnosis, for children that may follow in the spectrum of this diagnosis. No one should travel this journey alone.  A Foundation was needed, a Foundation I, along with 8 other moms and a community of families, created.  We created it to help families advocate for their little ones and their families within the challenging situations that a rare and little understood diagnosis of FPIES was, and remains yet.  A Foundation whose mission is woven into every ounce of our work, dedicated to offering tools for education, support and advocacy to empower families and the medical community.

You are invited to read more about the beginning of The Foundation for FPIES in the September edition of Complex Child: FPIES, The Formation of a Foundation.

Dear Sarah, I just didn't know about FPIES. Food Allergy Awareness Week 2013: A Guest Post

I shared a post the other day on Food Allergy Awareness Week, and what it means to me to bring awareness to FPIES. Today, in the midst of Food Allergy Awareness Week, I am very touched by these beautifully written words, expressing so much of the frustration, anguish and most importantly, forgiveness we must give ourselves, as mothers, that we are doing the best we can everyday.  This is shared by a fellow FPIES mom, whom I have had the honor to 'met' via a Parent-to-Parent support group.  Jenn Booth has given me permission to share her letter to Sarah, here, on my blog. 

Sarah, I just didn't know about FPIES.

If I had known that you could look adorable on the outside, but be very sick on the inside, I would have known how much you needed me to help you.

If I had known that your newborn tears were from pain, I would have complained less about being up all night.

If I had known that feeding you baby food would put your life at risk, I wouldn't have spent all day trying to get you to eat it.

If I had known that you were desperately trying to tell me it hurt your body to eat noodles, I wouldn't have made you finish them before I got you out of your highchair.

If I had known that you had no other way to tell me that you were suffering, I wouldn't have punished you for hitting me.

If I would have known that you didn't just "get the flu" more than other kids, I would have questioned the doctors more.

If I would have known that your tantrums were a cry for help, I wouldn't have let people label you with a "behavior problem".

If I would have known how close we were to losing you, I wouldn't have wasted time brushing my teeth before taking you to the hospital.

If I would have known that the cookie I gave you at lunchtime could make you throw up 4 hours later, I wouldn't have gave it to you.

If I would have known that food allergies don't always show up on allergy test, I would have tried an elimination diet earlier.

If I would have known that anaphylaxis is not the only kind of life threatening allergy out there, I would have demanded faster treatment at the E.R.

If I would have known that your vomiting, bloody diarrhea, screaming, constipation, hair loss, pale color and passing out was from food, I would have eased your pain sooner.

If I would have known the juice I was mixing your medication into was the reason you were constipated, bleeding rectally, malnourished, vomiting, and bloated in first place, I would wouldn't have force fed it to you.

If I would have known that pediatricians, children's hospitals, specialist, and feeding clinics could all be wrong, I would have sought help elsewhere.

If I would have known that there were other kids like you out there, I would have tracked down their families and compared stories sooner.

If I would have known that the scopes weren't going to show much because the prep for the scope is to stop all FOOD days before the test, I wouldn't have put you through it.

If I would have known that not all kids with FPIES outgrow it, I would have prepared better for the long haul.

If I would have known that some kids have NO safe foods, I would have been less freaked out about only having 27 safe foods.

If I would have known that not all ingredients are listed on labels, since you can never be sure how each ingredient is derived, I would have called food companies earlier.

If I would have known, if the doctors would have known, if anyone I rambled on to would have known, it wouldn't have taken 6 years to diagnose you.

If I would have known that at 7 years old you would be in so much pain and feel so "not normal" that I would overhear you pray to go to heaven early, I would have explained sooner that there is no such thing as normal and reassured you that it will get better someday.

If I would have known how embarrassed you are about a medical need to wear pull-ups at 8 years old, I wouldn't have waited to tell you that I was a bed wetter until 5th grade.

If I would have known how isolating, scary, confusing, frustrating, and financially debilitating it is for families living with fpies, I would have reached out to give and receive help sooner.

If I would have known how many well-meaning people would offer you treats, I would have stopped them before you realized you were missing out.

If I would have known how many good people we have in our community, I would have asked for help sooner.

If I would have known there was a place we could get information, support and understanding, I would have contacted thefpiesfoundation.org sooner.

If I would have known you were suffering from food multiple food allergies, I would have found you help sooner, saw you smile more, and kept you safer. Because I love you, because you are my child, because we are in this together, we will be okay.

Love,
mommy

Please spread the word. It is Food Allergy Awareness Week and these kids and their families don't need to suffer. This is a rare type of reaction to food, and most of the medical community are not aware of it, or don't clearly understand all the symptoms.
If you ever asked how you could help or if you know and love Sarah, please repost this, like this or whatever....after all, I did just tell you that I peed my bed until fifth grade. :)

Remember being new to FPIES?

Do you remember being new to FPIES?  I do. Our son wasn't diagnosed until he was just shy of his 1st birthday, and those months prior were some of the longest, most stressful and anxiety filled months we have endured.  Little Man is now 3.5yrs.old, FPIES is no longer a new diagnosis. We are versed in the changes that we needed to make to keep him safe, to learn about his allergies, to trial foods, and get support, to help friends and family understand and support us by respecting our sons needs. FPIES is still a big part of our Little Man's daily life as although his list of safe foods is growing,  his list of avoiding foods is still long enough.  

Recently, Little Man and our family got to meet another FPIES family who were in town receiving some further consults on their son's complex FPIES.  Their son has no known foods he can tolerate at this point. He survives, and thrives on an elemental formula for his sole nutrition. He is 3.5yrs. old, just a few months younger than Little Man. They were instant friends. They both noticed right away that they shared 'bobbles' (they both said bottle in the same cute way!).  And although it wasn't a big part of our meeting, they did both recognize that they shared "food makes my tummy hurt"'; which may not seem like a 'happy' thing to share- it is their reality, so having others to share that with is important for them.  

Little man has met other little friends with FPIES, but Little Michael had not. Little Michael had only recently even received the FPIES diagnosis (just before he turned 3yrs). His family had been managing his allergies under "multiple food protein intolerances" and since he was thriving on elemental formula since 4mo.old, and no one knew why food caused the symptoms they did- they were alone.  They were alone in trialing foods, alone in keeping him safe, alone in trying to have others understand, and explain to their growing son why he couldn't have food, they tried foods here and there- hoping and praying each time that they could find something that didn't cause excessive and irrational screaming, violent vomiting and days of diarrhea....not to mention how some foods also caused edema-like swelling and hospital stays. 

So, what would you say to you if you could go back to those first months of the diagnosis? What things helped you understand the most about FPIES?  What helped you cope? What helped you with food trials? What helped you help family and friends understand the magnitude of this allergy? What things helped you feel less alone?  

 These two boys share so much, and they knew it. 

How to go from Feeling Powerless in Every Sense to Finding Peace in Every Situation?

How do you go from Feeling Powerless in Every Sense to finding Finding Peace in Every Situation?

FPIES can feel powerless, waiting for reactions, and over reactions of the immune system that is attacking something that is meant to nourish the body.   Being the parent that has to chose which foods, in a gamble fashion, that may or may not cause the reaction.  To cause your child to be sick - violently and/or for days on end.  So, how do you find peace in that?   Everyone finds it in their own way...

My faith helps me with mine, but even with a strong faith- I had to allow myself the stages of grief for this loss to nurture my child through food and instead to nurture him through a chronic illness that is little understood.

I still have times of feeling powerless with this allergy; but for me the key has been in being in tune with my inner peace and strength from Above, and not search for my own power,to help me on this journey.  Peace provided by Divine Love, and surrounded by family and friends that care so much for our family and our little man.   Friends that are like family, family that are friends....helping us in our time of need- through strength and prayers, and hope.  And of course, the newly found friends that make up our FPIES Family, friends that hold us up in prayer and who inspire our hope by learning together on this journey.

We trust in our Faith and that provides us Peace.  

Motherhood is calling, an FPIES mom...

Last week, a fellow mom shared this letter she wrote to help her family understand what it is to be the mom of a child with life threatening food allergies:

To My Family by Beth Cowart

"My son has a severe protein allergy to milk & soy. This is not the same as being lactose intolerant.  This is not the same as colic.  This is a severe allergy that has almost taken the life of my child twice. This allergy is time consuming, life consuming, overwhelming and frustrating.  People seem to think it is as easy as just not giving him milk or soy, but it is not. 

It is label reading.  It is shopping at 4 different stores to get all of his safe foods.  It is frustration of not finding any foods he can eat because soy is in everything.   It is the disappointing trips to the grocery store, and returning home yet again empty handed for this child.   

 It is calling and being on hold with food companies for what seems like hours to be 100% certain that the vitamin E or natural flavoring is not soy based, because soy fat ingredients do not require labeling for allergens.  It is constant cross contamination research to check what foods are run on the same line as foods made with dairy and soy, because I will not let a drop enter his body.

It is constant research, constant planning, and constant thought about what foods to try next and in what order.  It is the facts about food constantly running through my head.   

 It is constant recipe search, trying to find new ideas for the same foods search, and recipe experimentation. It is the constant meal planning. It is food journaling.

 It is frequent trips to the store, since everything needs to be made from scratch.  It is the steaming, blending, storing, cleaning, and repeat, multiple times a day.  It is the not having the luxury to do "fast food" ever, even on those days where you just need a break from cooking.

It is trying to explain to his sister why she can't share her cookie with her brother.  It is the look on his face when he wants to try just a bite of what you are eating.  

It is expensive! All his foods need to be organic, natural, and whole.  It is having to give up the luxuries that are my sanity in order to pay for hypoallergenic formula, because each can cost $39 and one can lasts about 48 hours.  Although expenses are the smallest of the issues because his health is more important than anything money can buy!

It is the constant wonder if a behavior is due to an allergy or not.  He is fussy: is he tired or reacting? He is not eating:  is he full or is he reacting? He had 3 dirty diapers today:  just an off day, or is he reacting?  He is sleeping a lot today:  is he just tired, or is he reacting? He seems uncomfortable:  is it his teeth or is it his stomach? It is the fact that your heart always goes to the allergy, and your head has to try to talk your heart out of it. 

It is the poop checking.  Every day for 7months, poop check.

It is the not having anything in common with your friends anymore, because you eat, sleep, and breath this allergy.  It is talking to people in online support groups that you have never met before more than talking to your friends, because they are the people that truly get what you are going through. 

 It is the prevention and worry of cross contamination in your own home. It is the little decisions about food that have turned into monstrous ones.  It is the selfishness of wanting to introduce more foods then you should for convenience, and then the guilt of even thinking of that.  It is the constant thoughts of food running through your head that have taken all the joy and fun out of introducing them to your child.

And the worst of all is the constant anxiety that you are going to put your baby through a reaction again if you don't do everything right.  It is the constant fear that overwhelms you every time you put something new into your child's mouth."

I reflect on what she is writing because so much of it are my very own thoughts.  There is a connection between FPIES moms because we can so easily relate to one another with this journey we have been thrown into before our babies are even past the infant stages.  Just when you think you're settling into a routine past the infant days, you are thrown into the life of a chronic illness.

A mother is created to nurture, a baby is born completely dependent on that need.  A baby soon grows into a toddler, preschooler, and before you know it, they are off to school.   Children grow up so fast, life happens in the blink of an eye.

Motherhood is calling, and when it calls an FPIES mom it takes nothing less than a woman made of steel- one that can exist on what seems like no sleep to stay up all night comforting a crying baby, one that can push past their own fears to feed a baby food that may end up making them sick in hopes to expand their diet and nutrition, one that has to chart food logs and keep poop journals, one that has to search for a doctor knowledgeable in this allergy -even if it requires them to over advocate for their child, because not every doctor is trained in it and a clinical diagnosis benefits from experience, one that has to put on a strong face when their heart is crying as they watch as their child undergoes procedures and allergy testing to help doctors carve out the individualized care plan their child will need to thrive through this illness,  one that has to stand strong and kindly tell a begging toddler "not for you" when they ask for a food that is unsafe or contains unknown ingredients, one that sets aside their own needs and sits with a sick child for hours or even days just to be next to them because the loved ones touch is the only comfort they have after a chronic reaction and the gastrointestinal stress it does to their body.

Motherhood is calling, an FPIES mom.....

Am I doing enough?

I appreciate this blog.   I am a talker (in case you hadn't noticed).   My posts are often simply reflective of our reality, of what I have learned from it, and sometimes just putting out what we are going through in hopes I can learn from others who read and have experience, knowledge and insights to share.   I process through my thoughts by talking them out.   They aren't always positive thoughts.  We're all human, read what Little Henry's mom has to write about that.   As I read her words, this mom of 4 catching up on her blog as well, updating on how she and Henry have been doing; I marvel in how closely united we all really are. 

Our FPIES world has been difficult again lately as Little Man now turns 2 1/2 and we were supposed to be "growing out of it" by now....and in many ways I feel we are being pushed back to the beginning.   Little Man is thriving on TPN (IV nutrition), and I am so.very.grateful for that.   He has gained 6#- we are about to hit 30# now, as the geneticist that we saw last week pointed out, it is encouraging to see that his body knows what to do with calories, calories that his gut does not have to absorb (or malabsorb in his case).  It IS good, it is all very good.  But he is now becoming dependant on this TPN, he has less interest in even eating- how do we do trials when he only nibbles?   He is 2 1/2 and has no positive relationship with food except to give food to his brothers and watch them eat.  And I am struck with the "what if".  What if he isn't outgrowing this?   What if we don't find him safe foods?  What if we find him safe foods that he refuses to eat, or doesn't know how to?   What if his body begins to reject the TPN?   What if there is something more going on that we are missing?  What if there is some metabolic disorder that is compounding his FPIES that we haven't tested for yet?  What if this new normal is our normal now?  What if?  

I trust in God, it is the thread keeping my peace....I have inner peace knowing that His plan is being carried out.  My worry remains with what part I am playing in that plan.  What does He want me to be doing?   Am I doing enough? 

FPIES Island

An FPIES diagnosis can be like being on an island. At first, it feels deserted with you standing alone, when you start to explore, you find out there are others on the island, they help find food, and nourish your survival knowledge and coping skills, and help to feel a little less alone in this new world. And you are assured by others that have been there that there are ways off the island; and you know you too will someday find your way off, and you feel less alone. Then you need something from off the island, and you find a bridge or two and you take them, only to be thrown back to that solitary place, on your island. Bridges to nowhere, bridges that don’t work, bridges to solitary islands themselves. So little is known about FPIES, and Doctors trying to help and yet unable to in this clinical diagnosis with misunderstood mechanisms and complexities, are also on an island- an island often with no bridge connecting to anyone else to help the FPIES patient/family.

Too many times on this journey, we have found ourselves alone on this island. In the beginning, we didn’t know anyone else lived on the island and we didn’t know to look for ways off or invite someone else on for help. Then it became clear that our little man needed more than what we could give him, his illness was becoming out of my scope as a mother. That instinct I had all along that something was wrong, was now a burning fire, and the need to find more bridges to connect our island became the mission. We quickly learned that a clinical diagnosis, was easier to file under “mom not coping” (ie mom is crazy) than to say medical science did not know, understand, much less be able to help. We tried so many times to connect bridges between different islands, but the complexity of little man’s FPIES needed a strong bridge to a specialist….which, after much searching and persistence, we finally located that bridge. We were happy to finally use it and didn’t know if we’d need any other bridges.

Unfortunately, it soon became clear that we were in need of other things for survival on our island so we went in search of other bridges - only to be quickly sent back to our island- our little man has an illness no one wants to touch…..even though he has needs for these bridges to work, they do not. A corn allergy with an allergic symptoms to even an elemental formula is too scary for most to deal with, so it becomes easier to simply send you back to your island, even though this little boy still needs help. It is left up to the parents to find that way, keep searching for another working bridge. Some really, really long bridges are found- but the cost is very high and the journey long to use those bridges; especially when the shorter, closer bridges should work. Last week we found a bridge that other FPIES families have been using, we hope to be able to as well….maybe we don’t have to travel on the long, long bridges; but maybe we still will……

I don't mind the island, I just want off this island long enough to get what is needed for survival….which bridge is that on?

FPIES is ugly, but we remain thankful.

FPIES is ugly...but there is so much to be thankful for!   FPIES has shown us how beautiful people are, how caring and empathetic, and helpful.  

Recently, we had a fundraiser to raise awareness, a month later and I am still overwhelmed at the response we received.   Money raised, in Little Man's name, for The FPIES Foundation, to help future families in more ways than one.    To enable The FPIES Foundation to provide assistance and programs, and educational materials (such as a flyer we distributed at a recent Food Allergy Fair, more on that later) to further raise awareness and support for FPIES families following in the same footsteps as we have on this journey.  A treasure beyond measure, the gift that will keep giving. 

Kindness, empathy, thoughts and prayers for strength and healing....all among the richest gifts we have received from family, friends, neighbors, acquaintances, even complete strangers.    God has mysterious ways of showing us how beautiful His world remains- because of the very people who have shared our journey, who have provided us with this support.

God never promised there wouldn't be trials and troubles in this world, He only promised he'd help us through it.   This diagnosis can be ugly, but God is giving us the graces to get through it- the strong instincts to know what to do next, the drive to do it, the graces to perservere through adversity, and the support from others.  Assurances we are on the path He intends for us and Faith that there is something at the end of this journey. 

Prayer Blanket

Recently, we received a package in the mail.  In the package, was a special gift from a hometown church parish: St.Joseph's Prayer Angels, a beautiful prayer blanket.   What an amazing gift, a reminder of how much Little Man is held up in prayer, a reminder of the strength that is given to us in grace's as we need them.  A prayer and support wrapped up in a prayer blanket hug. 


Prayer Blankets are sewn with love and prayers for those who receive the blanket. This prayer blanket is a symbol of our faith sharing community “covering with prayer the individual who receives it”.



The Prayer Angels of St.Joseph parishes, commit to prayer as they fulfill their part in construction of the blanket. The process involves shopping for material, washing, coordinating fabric, cutting, sewing, ironing and tagging. After the blankets are complete, they are placed on the altar at a Healing Mass and blessed by the priest. Those who are to receive the blanket are held in prayer. These beautiful acts truly transform the blanket into a “PRAYER BLANKET” whose very threads become interwoven with pleas for healing on behalf of the recipient.


Each blanket bears a tag that reads ‘You are covered in Prayer.” This blanket has been prayed over and blessed at St. Joseph Healing Mass. Be Not Afraid, for the Lord said, “I am with you always, until the end of age”. (Matthew 28:20).


This gift of prayer originated at the MD Anderson Hospital in Houston, TX where the chaplain who gave the blankets to the sick found that they so uplifted the patients that she began to deliver them on a regular basis. Blankets were given to hospital patients, the sick at home, the Veteran’s Hospital and cancer support groups. Missionaries presented them to the orphaned, very elderly, and those who were sick in Guatemala and Volograd Russia. The gift was received as another wonderful way that people are doing God’s work.


The Prayer Blanket brings comfort to the suffering and peace to the fearful. When one sees and touches these blankets, they know they are not alone – that they are covered in prayer and there are those who do care about them.


God has used this beautiful ministry not only to touch the lives of countless people who have received the Prayer Blankets while they are going through extremely difficult times in their lives, but the lives of those involved in the ministry as well. We are blessed to have so many people who give abundantly of their time, talents, and treasures, making Prayer Blankets possible.

Cost of Livin'

I keep hearing this song play on the radio, on my way to and from dropping off the boys from school, taking Little man to appointments, to and from the hospital when he is admitted: Cost of Livin' by Ronnie Dunn and it makes me think of my husband and the weight of the cost of FPIES on our family (and I imagine shared by so many others).   The cost is high but the value is immeasurable.   The cost of living with this chronic illness is high: formula, special foods, compounded/specific medications, multiple tests to rule out other diagnosis', specialist visits, hospital stays, keeping a family of 6 afloat through all of this.....nothing in comparison to the outcomes of health for our Little Man.  

Little man's daddy holds this end of our rope, his dedication to his work provides our family with our cost of living....and by God's graces, we have all we need.   Who else tells anonymous donor what we need so it will appear in our mailbox on the very day we need it most?   Who else assures donors at our Benefit how much we needed contributions to our Little mans current cares and needs, as much as, we needed contributions to FPIES research?  Who else would whisper to family and friends, and friends that are like family, to supply us with groceries?  Who else gives strength to a sister to move to live with us while our families needs were so very high that only a sister could step in for?   Where else would the messages me received to "fill the boot" for our trip to CHOP, again.   Where does the generosity come from to loan us an RV to drive our family to CHOP, again.  More than just understanding for sick leave from co-workers but donations of time for more.  This is only a partial list of God's graces that surround us like a blanket of warmth and protection, assuring us that He will always provide our needs- in any form He can.

Support is Everything.

As I mentioned in yesterday's post- we've been busy.   Little man has been primarily well and we've been enjoying the moments we can as a family.   So, I've been busy and Little man has been cycling (apparently his normal) that reflecting and blogging do not come easily but also because we are in the same cycles and don't like to feel as if I have only negative things to say!  I feel guilty that we don't have more good news to share. 

There are so many good things that happen everyday, but telling you the little things of a 2yr.olds normal development isn't exciting is it?  It is exciting to me, when he says "more please" and "knock knock" (for the joke), and when he picked up 3 dice and turned and played with them and turned them all to the 5's- and then put 2 more beside them to match, when he looks at the number 2 and says "2!", and puts a puzzle together.  These are all things a normal 2yr.old is doing....but they mean, and say, so much to me.  

Little man looks good, the compliment we have been getting so much of lately.  And it IS a compliment, because he DOES look good- since his transfusion, he isn't pasty or pale and he even has a suntan from our week at the lake.   And he handled our trips well and he's coping with our schedule....but it is because we work so hard at it.   But, if I don't tell you how hard it is- will that make it easier?   Does it make it easier to not know how hard it is to assure your chronically ill child is thriving, to assure your other children get the love and attention, time and training they need to become fine young men.  It is good for others to see how good Little Man looks, how well he is thriving....it speaks volumes to how hard we work -- even if the one giving the compliment doesn't know that is what they are saying.   So, thank you.  Thank you for your compliment and your continued prayers, a thank you to all our family and friends who have supported us through all of this.  

There are different stages we go through, and we continue to cycle through them; each time getting somewhat easier.   But, some things get more difficult....I sat with my little man while he received 2 iron iv infusions, after trying to tell ourselves that we were holding because he "looked" so good and that his other symptoms were so chronic....he fell severely anemic and I sat with him while they poked him 3 x and finally found a heel vein to put blood in him, more blood exposure....to pink and perk and tank him up - so that we could enjoy our vacation time with him and our boys, so that he would not be dangerously sick.   I share a lot here on this blog, but we also do a lot privately.   I am not looking for your sympathy, in fact I am asking you to please not give it.  People who know us, know we do not like/want pity.  Our Faith is too strong for pity.   Empathy and support, and most of all prayers go a long way.   I read something today...."we'll pray and then stand back and see God at work".    So profound.  

Another very profound reading is a blog about a family with a special needs child.  Her post: Amsterdam International highlights the famous "Welcome to Holland" poem written for parents of special needs children.   It was a very inspiring and worthwhile read for the thoughts, and stages, that a parent goes through.   No sympathy, no pity, never regrets.   Unconditional Love (and way too much momma guilt!)

Gratitude.....

You find out who your friends are....

The support started early, the irony of a social networking sight...yes, I'm talking Facebook. 

Who would have thought Facebook would be such a support arm for me for such an isolating diagnosis?   Not me.   2am darkness, isolation, can anybody hear my cries for my baby?  The doctors were not hearing.   Friends and family were.  The support from the beginning has been the humbling experience of a lifetime for me, I can't imagine forgetting what it felt like to know everyone who knew me, who heard my words, trusted them and trusted me....that if I was crying out for help- I meant it, I needed it.   Heard in my "voice", my plea for strength, and wisdom, and prayers...all of which I received- family and friends not all living near but always close.   A gift of community, a gift of family, a gift of friendship.  A darkness given light.   I wish I had adequate words to describe how much this has meant to me. 

Recently, my sister gave our Little Man a Benefit (where do I even begin to show gratitude to my sisters for helping me in the trenches....for helping our family dig out of the trenches -- or at least get good breaks from them!).   The financial trench is a deep and wide one, and although we don't like to think about the money when it comes to health....our little boy's health is priceless.   Finding the right doctor, the right foods, being in the hospital, paying for his formula, making our own formula with special ordered ingredients, many months of caring for a constantly crying baby - while trying to meet the needs of 3 growing boys....all take their toll on digging that trench further and wider.  Again, a cry out- this time given in support and financial assistance as well as fund raising for awareness and answers for this little known, yet so severe, allergy.  Where do you find words to give thanks?  I pray all that have helped us, helped us dig out of yet another trench this diagnosis has put us in, not just knows but feels our gratitude.  

No one has ever disappointed us, in fact many have surprised us....praying just when we need the strength and graces from Above, offering a hand when we need it most, providing a shoulder when the load was so heavy....there has always been someone there.  God has watched out for our family, given us the graces to get through each day- the good and the long.  

We are so blessed....

FPIES Friends!

I "met" this FPIES family online last year, when she joined the FPIES babycenter group I was already a member in.  She titled her post something like "MN families".  I remember that post as if it was yesterday and it was almost a year ago!  How exciting!  Another family close by!  Well, as long as you consider 5+hrs.close by!    We have connected on many levels and conversations online, through FPIES support groups, facebook conversations, blogs, and phone calls but we had yet to meet in person.   

Our Little Man's benefit was planned for our hometown, which was further north than they live! But we wouldn't be passing by their house on the way; but they did it one better!   They came to our benefit!  A 3hr.drive!!  They even brought Kara to meet Sam!  Kara and Sam are just a month apart, and received their diagnosis around the same time.   They both have FPIES and intolerance's to milk and soy and have limited diets.   They connected right away, as if they had known each other all along....much like we did! 

I have been so grateful for the friendship we share, the common ground shared in the crazy world of FPIES.  Friends that become like family....

Hope

Hope can come in many forms.  My hope stems from my Faith, the fingerprints of God can be visualized throughout our days.   We have been given the gift of sight, to see this in every corner of our lives, throughout the past 2yrs.  The gift given through the child of a chronic illness.   I am very well aware that it could be worse, things could be more complex, our Little Man could be more sick, have a diagnosis more devastating.  Please know, I never intend to imply that his diagnosis is the worst thing that could happen.  Although it is very difficult right now, we always have hope.   Hope for things to improve.  For his diet to advance, for him to have more pain free days than days and nights filled with pain, hope that he will continue to develop on track, that he will continue to gain weight and grow appropriately.  Hope that the means will be made available as the need arises.  Hope in the Faith that we are doing everything within His plan to help our little man heal and thrive through this illness.  Hope that even if he does not outgrow his allergies, or that if they develop into more illness, or auto-immune disorders, that God will provide. 

We have spent so many countless hours researching into his allergy, researching into helpful doctors, doctor appointment after doctor appointment.  Some helpful, some not so much but always worth that risk that it could be someone that may be able to help.   Along with that comes costs that are priceless but not countless.  

When our little man is screaming day and night, pain is with him all hours of the day, we are told an expensive prescription-only formula will help him.  It's costs are high but we do not hesitate, if this is what he needs- we will do it.   After a few months of emptying out our savings account, our insurance appeal is accepted and the formula is paid for.   God provides, we have hope.

We then have a little man who is throwing up every few days and we hear of a hospital (CHOP) that has physicians familiar in diagnosing this rare allergy....what would you do?   We got the first appointments available, and make a trip half way across the country.  We were blessed to find an allergist that not only knew immediately that Little man has FPIES but also that his worsening of symptoms and inability to heal is due to a corn allergy.   God provides, we have hope. 

We find out the prescription based formula that so many kids are able to thrive on,  is what is causing his pain and throwing up and inflammation to progress, now we must move him to a homemade formula with specialized ingredients available only through special order or natural food stores.   We can't not buy it, and there are no sales on these items, no coupons to clip.   His new formula will not have insurance reimbursement.   Just when we feel there is no way we will stay afloat for another 2 weeks, something comes up that helps us through.  God provides, we have hope. 

Little man continues to be ill and requires a month long hospital stay, providing for a family through a hospital stay stretches past our already overstretched budget.   We continue to have Faith.   God provides, we have hope. 

A specialist in Non-IgE Food allergy is found to be accepting patients through her research study.   It is half way across the country again, and we feel her consult will be a big piece to our puzzle.   The research I have spent countless hours doing shows me that it will be a worthwhile consult.   We have achieved a better baseline with him than we could do on our own, with her help we are closer to healing him.  God provides, we have hope. 

A benefit is planned in our little man's honor.  A benefit to raise awareness and funds for research but also to raise funds for his medical expenses and formula.  God provides and once again, we have hope.  

Benefit/Fundraiser a HUGE success!!!

I have so much to process through from our great weekend with the Benefit/Fundraiser- this may take a few posts! But thought I'd get started for those that are interested in how it went!   

Little man's daddy and I are from small town community's.   There is just something about a small town community that rivals no other community you will form.  From the beginning stages of this illness with our son, we have received unending support from "back home"- by way of prayers, special sentiments and supportive words sent our way. We wanted to help all those, that have supported us all these months, to understand what this allergy that our son has is about.   We also wanted to raise awareness in our communities- for those not familiar with us or FPIES.  We accomplished those goals and then some.   As noted in a previous post, we were published in a local paper: The Watch.  That paper has far reaching clients and we received support, and donations from people we did not even know but whom had read this article!   Not only that but 2 other local papers printed articles in conjunction with this article.  One paper (the RLF Gazette) printing that same article and the other (Oklee Herald) printing this article I wrote for my File Cabinet blog: What is FPIES?   A-mazing!!  I was so surprised when my mom, who had saved the articles for us, showed them to me!  As we were putting together last minute details and setting up for the benefit, I was reflecting on the success we already had....our goals already so accomplished.   We had raised awareness.  

OOF-Da Taco's  provided the food, with 100% of the proceeds from the sales going to the FPIES United Family Fund established through CHOP Foundation for research, supportive and education services to be established for FPIES.  Unequivocal generosity.  And again, our goal was accomplished.  Funds were raised, in Sam's name for future research, for supportive services to be established for families and education for doctors.  So that future families will not to endure what our Little Man, and our family had to because of the unfamiliarity of this rare allergy.

The day started out raining....and kept raining, and raining.....but friends and family from far and near, came anyway -- all to eat for Sam!   And to meet him!  Again, our goals were met.  Those that couldn't make it in person, were with us in thoughts, prayers...and donations.

We had a Silent Auction, in which we (by way of my sister and her friend who managed this Benefit) had numerous generous donations for!  Thankfully too, we had interested bidders!  We also did a free drawing/door prizes as well as balloon sales with a chance for a prize.   Our sons, J.(8yrs) did a Kids booth- with games and prizes for the kids, while W.(10yrs) with help from T.(3yrs) did a lemonade/cookie/donut stand!  They all did a really great job, and they felt so good for contributing to their little brother's benefit and fundraising efforts.  We also had a slide show, an array of informational sheets on FPIES, and a display of Little Man's safe foods.   

We were so fortunate to be able to visit with everyone who came: friends, family, neighbors, teachers, and even a fellow FPIES family.  A family we feel like we've known for years, a family that drove over 3hrs. to Come Eat for Sam- and to meet us!  We were so grateful for them to make the trip and for Little Man and K. to meet! 

We are so very blessed!!   

Front page news!

Just in time for Food Allergy Awareness week (last week), an article on Little Man's FPIES in a hometown paper...the front page!!  It was published in the Northern Watch.   The author did a wonderful job telling our story of our FPIES journey.   It is raising awareness to this type of Non-IgE allergy. 

Our little man has what has been coined as "Atypical FPIES", this is due to his chronic ingestion of his main trigger.   There is little research into chronic FPIES but a few articles are beginning to unravel it.   His symptoms differ some from "classic" FPIES.   Classic FPIES is where the research has been, the research has not caught up to where Little Man and so many other FPIES and Protein Intolerant children are.   We have hope that by continuing to share our story, it will help to raise awareness to the dimensions within FPIES that so many of these kids experience.  And, so that families like ours will not feel they are alone.  It was others' sharing their story, their experiences, their journey that helped us see we are not alone....and that although our son has a rare allergy, he can be helped, he can heal.  And most of all, he can grow and thrive- despite all his struggles.