Monday, March 26, 2012

More On The Neighbor

So the same day I had had enough of our neighbor-lady, the hubby stopped and chatted with the neighbor-man.  Since our lawn was freshly mowed (by the neighbor-lady), the hubby offered the information that our lawnmower was broken.  The neighbor-man responded kindly, and with a comment about how his wife was worked up about the for sale sign going on their lawn.  He gave hubby the name of a lawn mower repair guy, and then gave him a kiddie pool for our kids.  (Now, they have these inside dogs that I think the pool was for, but it was still a kind gesture and we could wash it out.)  He even came over later to offer us some piece of furniture that we said 'no thank you' to. 

Soooooo, yes. I was reminded that the actions of mean people are always about their own issues. And glad I never dropped of the letter.  And glad I let hubby take care of it.  But still irritated at the rudeness displayed by the neighbor-lady.  They have officially moved out and left a for sale sign in their place. And I am still pleased about that!

Wednesday, March 21, 2012

An Inarticulate Letter

Dear Neighbor,

No, I did not answer the door when you knocked this morning. Yes, I was home and know you knew.  I decided that would be best for both of us, especially since my children were watching.

I understand that in the 2.5 years we have lived here we have not come out of our house often, and when we did it was usually to run to the car and buzz off to an appointment.  I have, on occasion, knocked on your door for various reasons and introduced myself, but am not sure you have ever told me your name.  I know you are older and probably set in your ways, and I have attempted to provide grace for that.  I was even able to brush aside the typed note you left on our garage door less than two weeks after we moved in, making sure that we knew how we tended to our front lawn affected your property value.  The fact that you ignore me when I say hello, and barely turn your head when I wave, has all been brushed aside until recently.  Your recent rudeness is inexcusable.

Allow me to introduce myself. I am your neighbor. I am a homeschooling, full-time working, mom and wife.  And I have two special needs children.  My oldest is incredibly special, and her needs come from having a younger sister who screamed in pain for two years of her life.  My youngest has an immune system disorder that keeps her from eating food.  Eating food will give her any range of symptoms including profuse vomit, diarrhea, shock, lethargy, and seizures.  All of the crying and screaming you have heard is not because I am a bad parent; in fact, I have a sick child.

I understand that our front yard is not kept to your liking, and that you do not understand why we spend all of our spare seconds in the backyard tending to gardens and chickens that are most likely driving you crazy.  But I most certainly wish you would direct your rudeness somewhere other than my husband.  He is the last person you should be throwing stones at, and that is why you are very lucky I did not open the door today.

Your comment about mowing the lawn 'just this once' was insulting in more way than you could ever imagine.  You see, he works 24-7 in an effort to provide an income that allows us to buy the two very expensive foods that my toddler eats. (That's right I said *two* foods).  Any minute he is not helping with household duties he is wondering how we can save more money, because she is currently in need of some surgeries, therapies and procedures that we cannot afford.  The lawn has gone unmowed for 3 weeks because the lawn mower broke. It required the time to go to the store, get the part, then the tool, and then fix it.  Let us not forget that we don't have the money to buy the part to begin with and quite frankly money spent on a large cleanly mowed lawn that is not usable or even edible seems incredibly ridiculous in our lives right now.  But for the sake of our neighbors and his desire to have a nice home he works very hard through his exhaustion in an attempt to keep it tended. 

We know it is you that have mowed our lawn twice now.  In most situations this would be considered helpful, and if you did not purposefully leave large clumps of grass, mow at different heights, and then leave grass and trash all over our driveway to clean up as a passive aggressive statement of your frustration, we may be inclined to give you the benefit of the doubt.  This creates more work and irritation for my husband, and is actually illegal, so if you don't mind keep your lawn mower to yourself.

Due to years of stress and complete sleep deprivation, my point may not be entirely clear:  leave my husband alone and stay off our lawn.

In closing, I would like to acknowledge that you say you are moving and putting your house on the market. We have seen you load up trucks but you are still here. We hope you have a change in attitude at your new location, but one thing is most definitely certain - you have never been a neighbor here.

the woman who lives next door

(note: letter not actually sent.)

Friday, March 16, 2012

The Onion

We gave Ellie a week to try and clear her eczema after not doing well with the pro-biotic.  It only got worse, and by day 8 or 9 it started to look a bit different.  We headed in to the pediatrician for a culture and got confirmation that she had a secondary skin infection - staph (and thankfully not MRSA). 

She was prescribed 10 days of compounded keflex, I was told we had no choice, and I cried.

All I could think of was how we had spent ONE YEAR working on body bacteria - adding strains, controlling strains, controlling fungus, you name it. And now I was going to douse her with 10 days of bacteria killing medication that is discriminatory, hitting only limited strains and allowing other strains to take over and fungus to gain ground. 

Wretched yeast.  Fungus is a leaky gut's worst enemy. Thanks to it's natural formation it is similar to a corkscrew, and does just that to the intestinal wall if allowed to go unchecked. 

Fortunately I was able to pull from the wisdom and reminders of several other GAPS mamas, so my panic was short-lived (this time). In fact, another GAPS mom summarized it perfectly.  All I need to do is switch the name and diagnosis:   "I know that He can heal Kennedy Ellie at any time, that is the hope I hold onto everyday, but I also know that as long as Kennedy continues to have seizures Ellie continues to have FPIES, God is working through them it for good. I have to trust and be thankful that whether I have the privilege to see it in my lifetime or not, God is working goodness through our situation and fruit WILL be harvested!" (Hebrews 11:1)

So out came the pro-biotic, nystatin and fermented cabbage juice, and I pummeled her with them, along with increased numbers of detox baths.

Her eczema cleared! And then we had a day or two....before it came back.  And yesterday she ended with a screaming green acidic diaper that removed skin from her girl parts, and I had a PTSD flash back to the days of pre-GAPS FPIES. One late night baking soda bath helped, but her itchy eczema is back. Drat!

We have a new list of things to tackle, and a new set of doctors to visit.  And in the meantime she has transitioned into asking for 'food' (things that don't come in liquid form in her bowl or bottle), and doing a little jig with a 'wahoo' when I have something to give her.  I am hoping I can get it on film.  We will continue to work on texture and desensitization while beginning to examine some other new complications. 
It's no longer a sucker punch; instead it's an onion.  Another mom talked of this so long ago, and only now am I catching up in my own life.  It's the peeling back of layers to find healing, beginning with the base of broth and then watching to see what else gets in the way.  And we can do that.  I have no idea how much this round of antibiotics will set her back, but that is ok.  She eats, and she is thriving in the most amazing way. That is truly all we need. 


Safe is a word that is used often in the FPIES community.  So is cross-contamination. In the most sensitive individuals, they can have an allergic reaction to something manufactured on shared equipment, or in the case of the kitchen a shared plate.  I have long searched to find safe products for Ellie. Safe soap, safe lotion, safe conditioner, safe laundry soap, safe everything.

You also may not know that Ellie's daddy and I have a special place in our hearts for adoption.  We used the word safe when referring to orphans well before our journey with Ellie started.  We were down a three year journey of infertility and adoption prior to having Ellie's older sister, and during that journey we researched, read, and attempted to fund-raise quite extensively. Adoption is EXPENSIVE.  An international adoption can easily cost over $20,000.  Many resources we found talked about the responsibility of society (more specifically the church) to support orphans and those who can give them a family.  We firmly believe that not everyone is called to adopt, but everyone is called to support those who can.  Following the advice of several major Christian organizations we sent out support letters many years ago, and were naively devastated to find that our plea to help fund an adoption actually offended many people.  Some were quite nasty.

At this point you may be wondering what in the world these two things have in common. WELL! Many months ago another mom found this blog, and one of her adopted kiddos has a severe condition on the same spectrum as FPIES (an EGID).  That mamma has been making lotions and chapsticks to riase money for another adoption.  And....

That mama made us a SAFE lotion!!! Not only did I not have to make it, but it supported her adoption fund.  Since our current adoption plans are on hold, I was so thrilled!

Ellie's Safe Lotion!
Are you searching for a safe lotion or chapstick?  Cross-contamination free? 100% organic? Unrefined? Completely safe???  This mama may be your answer!  (just email her for options)

They recently put an additional adoption on hold, and any funds received are going towards her kiddo's medical care.  I know first hand these expenses, and families dealing with a medical special need are in huge need of support - especially financial.

Like any other situation, if you are not called to give financially - then dont. And dont feel guilty. But if you...
-are in the allergy community and want an amazing, safe lotion
-are a fan of natural, lovely smelling, fantastic body products
-want to support an adoptive family
-want to support the medical expenses of a special need child
...or just have money to spend (hehe)....please take a minute to email this mama.

She can be found at:

Friday, March 9, 2012

Bumpity Bump Bump

There is no doubt that the road toward feeding Ellie is one that has been bumpy.  I used to joke with other moms about Dorie from Nemo (just keep swimming, just keep swimming!).  Then I realized I had transitioned into more of a foot dragging trudge than a swim.  Lately it has included a few breath taking sucker punches.

Ellie recently had her first post-GAPS seizure, and has been having some neurological complications ever since.  Most of these involve her eyes, and they certainly may amount to nothing. But we learned that she appears to have been having regular seizures prior to going GAPS.  It was an initial sucker punch, but one that I came to terms with quickly.  It is not hard to make the leap from what we are already dealing with to neurology. There are lots of medical connections between the intestine and the brain.  And the seizures are obviously controlled.

Sucker punch number two came shortly thereafter.

We recently took Ellie back for a second O.T. evaluation regarding feeding therapy.  One year ago she was not considered far behind.  Now, she has no problem standing out as that bottle fed almost-preschooler.  We received good tips on body brushing and pressure points to desensitize her hyper-sensitive self.  The body brushing was not received well by her, and I believe it is because of her head to toe eczema as a result of a recent trial.  I continued with the pressure points and massage instead of brushing, and it has been working! One improvement is teeth brushing.  She has been asking me to brush her teeth regularly when she has never allowed me near her mouth much before.  The result was a new discovery.  Wait for it.....

Ellie has a lip tie.

What? You were hoping for something a little more dramatic?  Doesn't seem like much of a big deal?  WELL....*ahem* let me TELL YOU THE DEAL.

Ellie has had a panel of doctors since she was 10 weeks old attempting to understand and explain her feeding difficulties.  She has been scoped, poked, prodded, and pricked.  She has had two complete OT evaluations for feeding issues, and been continually re-evaluated for an EGID. She had chronic respiratory issues, coughing, reflux, and unexplainable 'asthma but not really asthma' symptoms.

Noone. has caught the lip tie, and the therapists never even looked in her mouth.

Now, we are not talking a small lip tie. We are talking a cant-pull-her-lip-away-from-her-teeth-and-why-does-she-have-such-a-gap-in-her-teeth sort of lip tie.  And yes, I know 'well, that can be clipped easily and corrected with surgery.'  But here is the deal.

1.  Our insurance does not cover O.T.  We pay over $600 a month out of pocket and get no O.T. benefits until after our extremely high individual deductible is met for Ellie. (as in thousands of dollars deductible)
2.  Our insurance will cover minimal costs for a surgery to correct this.
3.  The longer it goes, the more trouble she will have correcting speech and feeding habits. I listened to the 'oh that will just go away and is nothing' doctor suggestions for my 6 year old's tongue tie.  Dozens of complications, one frenulectomy surgery, and permanent speech problems later, I wish I had never listened.
4.  Did you know that in the first few months of life a tongue tie or LIP TIE can cause: colic, reflux, GERD, feeding refusal, constant feeding, distended belly from air swallowing, just to list a few.

Uh. Yeah.  That number 4 would be Ellie.  And would be classic infant FPIES symptoms.

*deeeeeeeeeeep breath*

Once I was able to inhale deeply and step away from that sucker punch, I was able to look at it a little more objectively.  Do I think that the root of all Ellie's problems and what led to her FPIES diagnosis was a lip tie?  NO.  What I *do* think is that it was another factor that made things that much more complicated, and are certainly complicating things now.  I did a quick (very small) poll and found four other lip tie or tongue tie's in the FPIES community.  Isn't that interesting?  Lip and tongue tie's are considered mid-line markers, if you would like something to visit doctor google about.

So we will be tackling the lip tie next, which now so easily explains why the girl can not get her lip onto a spoon no matter how hard she tries.  And though it may not explain all of her beginning journey, it certainly shows how each individual babe has an incredible amount of factors that add to their overall health.  From now on when I hear of that mom having trouble breastfeeding I will most certainly remember to say - hey! have you checked for a tongue or lip tie? they say they are nothing, but our experience says otherwise.  it could be an easy fix now that saves you and your babe in the long run.

And how will we pay for this surgery? Beats me.

I have picked up my feet and moved from trudge to a steady forward motion that sounds more like a bumpity, bump, bump.  This is partially in accepting that there will be sucker punches coming our way and I need to be prepared to roller-coaster right over them.  I am not sure I will ever get to the point of waving my hands in the year and screaming in delight as our car heads down for the next challenge, but at least now I am in a place where I can remember we will head back up the other side.

Sunday, March 4, 2012


Seriously? Sometimes I just can not think of enough ways to ask the same question in order to get all of the information I need.  I have been purchasing local, corn free, soy free, home grown bacon from the same farmer for at least 6 months.  His lovely workers have answered my questions every which way to Saturday, and I was reassured the bacon was all natural and free of anything I listed as being a no-no.  It was smoked in a basic brine of seasonings.  Sounds reasonable, no?

Well this morning I over hear the farmer himself answer the same question to another patron.  The answer? The FDA requires some form of sugar in the preserving and preparing of bacon in order for it to be USDA certified.  The only way to avoid is to make it yourself, which he strongly recommends even though he does not use any form of corn syrup.

WHAT?! Thank the Lord my Ellie does not chew and swallow. But no doubt her rounds of sucking on bacon have been adding a nice dose of sugar to her already stretched system. Not to mention I have been successfully sugar-ing my family without knowing it.

Lesson learned. Go directly to the farmer. Do not pass go, and do not stop me on the way.


P.S. It has been brought to my attention that it *is* possible to find bacon made with honey.  

Thursday, March 1, 2012

Cherries on Top

It is hard to find blogs or resource websites that provide real food and GAPS information without any fluff.  Those of us in the trenches with severe situations get tired of wading through the waffling opinions and fence sitters who don't have to worry about a child having a life threatening reaction to the chemicals in a sticker.  A 'virtual' friend has a no-fluff website I truly appreciate, complete with a section titled 'Cherries On Top'.  This section caught my attention because it is exactly the situation we are in. 

Any autoimmune condition has a spectrum.  Food allergies and FPIES are no different.  GAPS heals the majority of those with autoimmune disease without additional supplementation.  Still....I know too well by now that when I hear 'majority', I can count Ellie into the 'minority'.  The emotions behind that, and the reasons I believe this to be true, are material for another post.  But as I hear great success stories from other moms in the GAPSkids forum, I am affirmed that Ellie's body is having trouble jump-starting her healing. 

The average person can plan to be on GAPS for at least 2 years, moving through the stages at an individual pace.  I have heard Dr. Cowan mention to plan on 32 months.  Dr. Natasha says a child before the age of 5 has the ability to heal quicker than an adult, and will have much more healing success on GAPS than an adult who has been sick for decades (my summary, not a direct quote). 

Ellie has been on the barely beginning stage for over a year now.  This is not typical.  Her inability to progress is complicated, but largely in part to her body's inability to detox naturally.  The body has an amazing detoxification system that takes care of many things on it's own. Environmental pollutants, occasional ingestion of toxic foods, name it.  It binds it up and shoots it out via the colon (a little over simplified there).  Unfortunately it takes proper digestion and nutrition for all of that to work. 

One year later, Ellie is still not making sufficient bile, and not detoxing properly.  We have given her body a year of healing, and have now decided to give a few new things a shot.  They are not things we should have tried at the beginning, and I want to be sure that is clear for those on the GAPS journey.  Again: 80%+ do not need additional supplementation beyond GAPS protocols. 

So what's the plan? Well due to the recent probiotic drama, her body is having great trouble getting itself back under control.  We have stopped giving her coconut oil entirely.  She is back to her diet of broth, meat, zucchini, iodine paint, liver, fermented cabbage juice and GutPro.  Lots of detox baths are on the list as well.  And we are continuing two prescriptions we started shortly after our visit to see the doc- one is a liver enzyme, the other is a hard one to explain.  They are being delivered topically, and in a base that should be safe.  She has not appeared to have any reaction to the base but if her eczema refuses to clear after pulling coconut oil we will have to take a look at these medications next.  Because of the recent events we have no idea if they are helping yet.  They are both well studied medications for bowel disease, and our hope is that they will help move along the healing process.  Our intent is not for her to be on these medications for life.  (Due to that whole spectrum issue I no longer say things like 'long term', because that is relative. Everything for Ellie is long term.)  The medications are tools to help GAPS, if that makes sense?

Forward march, this time with the cherries on top.  Short term healing for a life time of eating.  Healing sounds so much better than a life time of the alternative.  Now to remember that 'short term' is relative to the spectrum.