Bites

We have bites! 

Ellie has been attending feeding therapy for a few weeks now. Her desire to please 'Ms. Blair' has been big, and we are using it to our advantage.  

Starting with cutting and stirring, we have moved on to playing with food, and trying to actually touch things that are not dry.  We have had small successes with a bite of sour cream, some bites of muffins, and big time bribery with an occasional Funky Monkey.  She is not ready for freeze dried food, or fruit, so we use this sparingly. It took one package spread out over many days to get her moving on to bites of other things. For Ellie she needed evidence that she would not choke before she would buy into taking bites.  

Her healing still holds many components, but overall she will not progress until she starts chewing. Her lip tie is making things a bit harder, but not impossible. She has shown that when she is motivated, she will give it some good effort. I am not sure if she will have to be directly taught how to chew and swallow, or if it will just take practice and time. Either way, we plug forward, and I try to remind myself that she will not be heading off to college on a bottle!

Onward Once More

Ellie's current plan is changing a bit.  Her allopathic doctors are pleased with her progress and feel that she is doing fantastic 'in spite of'.  She will be getting weekly speech and feeding therapy to help move her forward and off the bottle.  I am not a fan of where she is, and thankfully neither is her holistic practitioner, so we are changing her  plan a little bit in an effort to move forward.  

Her recent illness has shown that she (still) does not tolerate an increase in carbohydrates because of her systematic fungus. NOT because of allergic response, intolerance, or dissacharide deficiency, all of which are well on the path to healing. (insert big mama grin here)  

Her fungus battle began the first day of GAPS, and we took the edge off with a 6 month round of pure oral nystatin powder. At the same time we began increasing her Gutpro probiotic, fermented cabbage juice and eventually starting her on refined coconut oil.  These things took a long time to build, starting with pencil point amounts.  It took 6 months to get to one teaspoon a day of cabbage juice. Gradually we transitioned her to actual kraut juice, and onto raw coconut oil.  We began fermenting vegetables and adding those tonics in as well.  The ferments were pivotal to her progress.  And once we let her chug fermented coconut water we saw substantial healing.  This was hard to source, hard to make, extremely expensive, but entirely worth it.  It has done amazing things for her.

Once more we are again looking to add something else that will help her with the fungus.  This fungus is a frustrating, pesky and amazing thing.  Dr. Natasha explained it at the WAPF conference in a fascinating way.  Here is my summary:

When the body is in crisis and dealing with a problem - say a bacteria infection - it literally sends out a signal inviting fungus into the body.  The body then uses it to help protect and clean up the decay present.  Fungus feeds on decay, and is attracted to rot.  

Rot! Amazing and gross all at once. Fungus is also opportunistic and can spread like crazy.  So in other words, fungus is not necessarily the primary problem. Fungus can be the secondary problem, especially if it is being used by the body to clean up infection, or shield against metal toxicity (for example).  

From what I gather, our next step is to finish beating back this fungus, and a primary issue may show up in the process - something that is inviting the fungus to hang on.  I am guessing that this might end up being her continued issue with staph that has reared only after making some significant strides towards healing.  Either that, or the corn syrup solids she was on for 18 months just gave the fungus so much food we are retracing those steps, making it the primary problem. Fungus can adapt quite well.

Either way....where does that leave us....

Because her broken detoxification system is so severe, we will continue her on a topical glutathione supplement. This has been great for her. And we will try her on a new anti-fungal medication called Lauricidin.  

She is in a new stage of healing.  New clues and new milestones means new healing. And most of all it means she is nourished.  Her body has the nutrition it needs to deal with illness, and continue to heal instead of getting worse. For that I am grateful to God.

photo credit: ayblazerman

Retracing

One thing that is absolutely for certain about our healing journey with Ellie, is that some things are just hard to understand until you live through it. Isn't that so true for life in general? Often I find myself just shrugging and stepping out, figuring we will make sense of it when we get there....or not. Sometimes it never makes sense. Such is life.

Periodically I have heard other mamas talk about retracing.  It has been a hard one to wrap my brain around - this idea that as healing progresses and the body is more equipped, it deals with unfinished business from the past. Sounds even more hokey in writing. 

I have been attempting to learn more about sensory processing and how to help Ellie with her missed milestones and gaps in attachment. She missed out on quite a bit from 0 to 18 months of age.  Even though I did everything possible at the time to help her sick, hurting, and malnourished body, the pain did not stop.  The result was an attachment issue that until now I would have naively assumed applied only to children without parents sitting in orphanages. Oh, the ridiculous assumptions and generalities we make based on our limited experience.

About 2 months ago Ellie began to regress emotionally.  She began to do weird things, like want to crawl,  baby talk, and be carried sideways by me like an infant. At times she would just simply sit and cry, wanting to be held.  Sometimes she would start yelling "mine! mine!" She had separation anxiety. And I began to realize that she was working through some of the things she missed. Her behavior was about that of a 12-14 month old.

Interestingly enough, this time frame coincided with the same time that her health began to really take a nose dive. By 16 months old her complicated symptoms were at their worst, and by the time we started her on GAPS at 18 months old she was critical.  This 12-14 month mark was a time of developing unexplained respiratory symptoms, rashes, and a LOT of diarrhea. I remember her poor little bum was so raw and bleeding from her green acid poop that she would scream whenever she had to pee.

About 1 month ago Ellie started to get sick. There were a lot of factors, but the decline began about the same time our hens stopped laying eggs and her daily egg intake went down. She kept getting sicker so I sought out another source for eggs.  I found soy free, corn free, wheat fed eggs and figured that her need for the eggs seemed to out-weigh the possibility she still might have an issue with what the hens were fed. I was wrong. Eczema, diarrhea, reflux, then on to vomit. We don't know whether the eggs were the main culprit, or the honey and fruit I gave her access to prematurely, or the addition of winter squash, or the other environmental toxins she was dealing with (for example I put up one of those white boards at the same time, DUH mommy fail!). Most likely it was all of it rolled into one big episode of pushing her too far.

Nightmares, toxic all night pee, sweet smelling breath, cradle cap, constant inconsolable crying...it was all a strange flash back. Her neurological symptoms were getting worse, and her verbal was disappearing.  Environmental exposure pushed her into a daytime seizure and I called it quits. Though we had pulled the egg it was not enough. Her body was so overloaded she was refusing coconut oil and fermented coconut water.  Back to meat, broth and a little bit of summer squash we went. 

Daddy had a hard time with this.  He was adamant that after all this time she did not need such drastic measures, and determined she was healed beyond this. It was hard for him because the symptoms combined with the food changes, sent us reeling backwards to a time we longed to be in her distant past. We had to stop and evaluate and realize that it was not as it appeared.  It was the equivalent of Ellie getting the flu. What do we ALL need and benefit from? Broth. Soup. Basic. 

Brenda at The Well Fed Homestead published a post about how she got physically ill while helping her children heal missed milestones.  It got me thinking, and I made the observation that Ellie's symptoms were entirely pre-GAPS, and coincided to her behavior changes as well. Bizarro. Right on down to the funky respiratory issues and crazy horrible eczema. As I tried to clean her poor burning butt I thought 'boy, this is harder with a screaming, talking toddler'. Diarrhea! Up until now she has never had diarrhea like this on GAPS. She has battled constipation for months, and this is not great for progressing in the healing category. Her systematic yeast was out of control again, and this time her body was doing what it was supposed to do by pushing it out. Retracing. Back to a time when it was not equipped to respond in such a way. 

Remarkable! This was the sign that she was entering another stage of her healing journey. Progress in illness? Illness that is resolved and that her body was allowed to fight and work through. Illness she was nutritionally equipped to handle...finally.

It took about 3 days for her body to begin to reset. That is astonishing after the length of time she has needed in the past. Her eczema is almost gone.  Her distended belly is gone once more. Her words are all back. That funky breath smell still comes and goes. She is guzzling coconut water and eating coconut oil once more. 

She has come out the other side sleeping longer at night (will it stick?), not peeing as much at night (sweet!), and with loose formed stools multiple times a day, instead of constipation (say what!). And she finished it up by getting a snotty virus that she has shared with the rest of the family. I can not even remember the last time she had a snotty, respiratory anything that was not toxin or food related, causing us to bust out the nebulizer, inhaler, or make trips to have her oxygen levels checked.  She seems to be working through it this time just fine, all on her own.  

I think I may be finally starting to wrap my head around this idea of retracing. 


photo credit 1: WilsonB  photo credit 2: telepathicparanoia

Top Post of 2012

My top post of 2012.....

is on enemas! 

That's right. According to my blogging stats...the most googled, read, and talked about post is enemas. 

OH enemas, how we spent months and months using you during the GAPS constipation protocol. You were so helpful, and still are when the situation arises. 

If you would like to read the enema post click HERE!  As for GAPS and enemas....Don't forget there is an entire chapter on it! Please use that for guidance and not my post :)

Onward with 2013! Bring on the hope!

In health,
Nichole

Overwhelming Gratefulness

Yesterday and today I have been overcome with thankfulness for two things:

First, the amazing amount of hunters and fishermen who, for almost 2 years, have gone out of their way to supply us with food for Ellie.  From bear to ling cod, whenever our supply gets low someone shows up with an ice chest.  Some hunters have even said they had to carry their spoils for miles on their shoulder's, only to donate it all to Ellie's belly. Some have stopped to be sure that organs were saved when those parts are usually left behind, just to be sure that it met Ellie's needs.  That to me is some serious kindness.

Second, this Thanksgiving week I heard Ellie ask if she could be excused from the table.  We offered her many of the dishes on the Thanksgiving table, and watched her eat pumpkin muffins and taste pumpkin pie.  Thanks to understanding and adaptable family members, we said yes more often than we said no this holiday. Cross-contamination is no longer a cause for fear and panic in our home, and the floor gets swept because it is dirty, not because I am petrified she might touch a crumb someone has dropped.

We are picking up as a family.  We are repairing, adjusting, and healing from all things FPIES and all things fear. We are embracing our new normal much easier these days, and I am so very grateful.

Thank you to all who have been on this journey with us, and who continue to trudge along. To God be the glory-for it all.

Too Much

Tonight I updated the blog page 'What She Eats'.  It reads like this:

Ellie is now on stage 3 of GAPS. This includes nut butters, pancakes, squash, goat ghee, scrambled eggs, fresh juices, and others.  At this point in our journey she has too many foods to maintain an accurate list.  Amazing, eh?

SO whatcha think?  Pretty darn amazing, eh?

I am in awe that after thriving on broth, meat and zucchini for 16 months, she is now eating like this.  From nothing to too much.  From pain to healing. From fear to hope. God is good. Amen?

     

I can't wait to see what these teeth are gnawing on next!

Truckin'

We have hit stage 3!  It's all eating from here.  Ellie is now eating winter squash, carrots, onions, leeks, nut butter, ....the list keeps growing.  Many of these things she could not tolerate at the start of GAPS and she is now doing great.  The fact that she can now eat 'sugary' vegetables means that she has fought back the yeast, begun detoxing properly, and healed beyond dissacharide deficiency.

There are odd adjustments going on in the family dynamic as she begins to eat.  Often she gives a surprised look when she asks for something and we respond with "YES!", instead of "Not yet! When Jesus heals your belly! but SOON!".  All day today I heard her singing her made up song of "pum-kin muffin yum-ME! pum-kin muffin yum-ME! pumkin muffin yum-ME to meeeeeeeee".

Aside from textures, she still can not truly chew.  This hang up is due to missing some developmental milestones, but also due to her lip tie. After her last growth spurt the restriction on the left side of her face became much more visible.  Her lip on that side does not move the same when she talks, and sometimes turns blue when the muscle is strained. I am certain the issue of chewing will not be fully resolved until she has the surgery she needs.  Unfortunately we can not afford it yet, so it will have to wait.

In the meantime she compensates by tearing microscopic pieces off of pancakes or muffins, and we are working on textures with things like nut and seed butters.  We are doing our best to offer her more and more options within her chewing limitations.  We have to think of her as a beginning eater, and remember she is susceptible to choking.

It's truly a whole new world around here.  As we near the end of Team Ellie's 6 months of prayer, I see God's faithfulness. I heard Him say clearly to establish a team of prayer warriors, and I heard Him say that 6 months was the time frame.  During this 6 months He has revealed hang ups and hurdles, and amazing healing. Thursday will be the 6 month mark.  And she is truckin', leaving FPIES and EGID in the dust.

On the Move

Yesterday we met with Ellie's new pediatric G.I.  She has not had an established G.I. for over a year, and in order to get her feeding therapy services we had to get one on board with the team. The appointment went well, but was the first time in a long time that I had to give her entire history from a G.I. perspective.  He was great, young, new, and honest.  He said he has never treated a patient as severe as Ellie so he did not have a lot of wisdom to share.  That actually caught me by surprise.  Not that Ellie is 'so severe', since I have heard that far and wide from every specialist we have seen.  What was surprising was the questions he asked and the learning he wanted to do.  That was refreshing. I told him I appreciated his telling me there we NO procedures he would recommend at this time; that alone is very wise.

I was also jarred back into thinking of Ellie and her progress, because most days I see a little girl who is no longer sick. We are in a new place where instead of fighting for answers, doctors see the improvement she has made and ask me HOW.  I love that.  I love that when they ask me 'what DOES she eat?' I have to stop and think and sometimes forget something.  What a change from times past!

We have spent our fair share of time waiting. GAPS is a very individual diet, helping to peel back layers and reveal core issues that are preventing healing.  We have played that game for 20 months now.  For Ellie, much of the time has been spent just waiting for her body to heal.  The rest has been dealing with individual healing hurdles.  5 steps forward, 3 steps back......2 steps forward, 1 step back.....it has felt like a crawl.  With prayer paving the way, the push for foods has begun.

It has been so long since Ellie has had an FPIES reaction that it is beginning to feel like another lifetime.  She still has allergic response to corn and I suspect that may be the situation for many months (or years) to come.  But this week we had a major success.  This week she ate her first pre-GAPS FPIES food fail.

Ellie failed so many foods pre-GAPS, and reacted to so many foods at the start of GAPS, that we have reached a point where we can no longer avoid them all.  This has been an amazing turn of events.  This has been the place we have been waiting for. This could have been ugly, but instead has shown that the recommended 2 years on GAPS is more than just a guess Dr. NCM has thrown out there.  We are nearing 2 years and we are finally moving forward.  From a stand still, to a crawl, we are getting ready to run!

Ellie has now added virgin coconut oil to her diet.  Up until now she could only tolerate refined.

Ellie is now eating fresh carrot juice.  Up until now she could not drink even one drop without the sugar causing her body bacteria to explode.

Ellie is now eating fresh apple juice.  Ellie WAS FPIES to apples.

Did you catch that?  WAS.

For the first time we can step back and say...wait. WAIT! Was FPIES.

For the first time we can actually say FPIES will someday be behind us.

For the first time we can say that FPIES, EGID, leaky gut, seizures, and all of her complications will eventually be gone.

Today Ellie is trying her next new food.  Today is day TWO of homemade goat ghee.  Ghee is clarified butter. Ghee is DAIRY.  And dairy has been banned from the house for over 2 years.

So far, so good.  She is on the move.  She is doing great.  We are SO incredibly thankful.  I can hardly wait to try her next new foods.  Stay tuned!

Navigating Air Purifiers

Thanks to the sale of some furniture as well as a monetary gift from some friends, we were able to purchase air filters.  This was a hard purchase for me because the best of the best are thousands of dollars, and the science behind some air filtering methods is controversial at best.  Also, just like water filters, many are restricted and unable to be purchased for shipment to California. We ended up with two - one that is in the main living area and one in the girls' bedroom.  These are doing a good job of keeping up with the toxins in the house as well as things like the wretched stench from outside in the evenings (oh! We have moved! Guess I should do that blog post next).  This has been one of the ways we know they are working! No smell in the house.

The amount of research I did was quite extensive, and absolutely exhausting, so I thought I might share a little to save someone some time.

Here are the basic filtration systems currently being used in air purifiers:

1. pre-filter. This is a plain filter that works to capture large particles before they hit the more important filters.  It extends the life of the other filters and is rather important.

2. HEPA filter.  HEPA filters are the most efficient for catching large particles such as dust, dander, and even some bacteria.  They work against mold, but there are studies showing that HEPA filters can also get mold within them and have issues so it is recommended that you remove the mold source before using the HEPA to clean it up.  Just a HEPA filter is not enough because it only removes airborne particles down to .3 microns.  Most household contaminants (VOC's) such as formaldehyde are smaller than this.

3.  activated carbon filter.  This is probably (in my opinion) the most important thing to look for in an air filter.  The efficiency and size of the activated carbon in the air purifier will determine what particles smaller than .3 microns are removed.  From what research I did, it appears that activated carbon filters are effective down to .1 microns.

Most of the super expensive filters stop here and use the first three filtering systems.  Just like with a water filter, the more activated carbon there is for the air to move over, the more effective it is.  These expensive filters are large boxes of activated carbon with HEPA filters.  Most of those filters cover one average sized room and cost around $1000. We obviously could not afford this, and I also wondered about the particles smaller than .1 microns that would be missed.  However, any additional filtration methods came with controversial reports regarding safety.

4.  UV Lamp (germicidal). This filter gets a bit tricky.  It kills micro-organisms like mold, germs, etc. and also has several variations whose safety are questionable.  In general, there are either UV lamps that kill germs with ultraviolet radiation, or those that generate ozone. Both have risk factors.  If the cover comes off of the ultraviolet radiation lamp you can receive dangerous exposure.  On the other hand, there is still much controversy over appropriate levels of ozone.  It is hard to find an air purifier that does not have one of these, so we chose one with the light instead of one that produces ozone into the air.

5.  Ionizer. This is one of the components that caused me the most stress when researching; I really did not like what I read.   An ionizer changes the charge of ions in the air so that particles which are normally airborne become heavy and fall to the ground.  Theoretically you then sweep or dust them up, or they become airborne again where they are then again made heavy and fall to the ground.  Many say ionizers are great, are not problematic  and have improved their air quality tremendously.  Ionizers produce ozone at varying levels. There are also some studies showing that those exposed to ionizers have particles in their lungs that are not normally found there.  This made me uncomfortable for the girls' bedrooms where they would be lying flat and breathing the filtered air.  For this reason I purposefully searched out filters that had extremely low (virtually no) ozone production, and was excited that the one we purchased for their bedroom has the option of turning the ionizer off.

6.  Electrostatic filter.  An electrostatically charged grid traps particles and is very effective.

7.  Photocatalytic Oxidation (TiO2) filter. This technology is used by NASA and the newest.  This filter is 99.99something-crazy% effective for cleaning the air of VOCs.  The potentially questionable part is how it does that.  This filter oxidizes the particles and destroys them.  Extensive tests have shown that what goes in does not come out and chemicals are indeed destroyed.  The problem is that there are not conclusive studies on what comes back out of the filter.  The chemicals are destroyed and changed into something else, but I could not find any studies saying that the new particles being inhaled were actually safe.  If formaldehyde is destroyed, what does it become?  There are no answers for that yet.

There you have it.  More information on air purifiers than you have ever wanted to know.  We ended up with  two  filters that include a combination of the above systems and are proving to be very effective. If you are in the market for an air filter I recommend checking out Friends of Water who have already done the narrowing down of choices for you.  We purchased some great options there for very reasonable costs.

Packing and Purging

Within a week of finding our perfect rental, we received notification from the bank to get out.  We had been in an active short sale and not planning a foreclosure, so we *really* would rather not have an eviction on our credit as well.  The packing is in full force and so is the purging.  We are downsizing from over 2400 square feet to 802.  This means we have way too much furniture (and toys, and just plain ole stuff).

Barring other future surprises we also have 4 estimated large expenses that remain for our family needs.  We have decided that we will use our packing and purging abilities to try and raise some needed funds for that, since the funds are pretty restricted otherwise.

At this point in time we are saving for:

1- air purifier.   The rental house will have fresh paint, new floor, and new kitchen. The new kitchen is rather awesome since it will be free of anyone else's funk, including various forms of corn.  However, all of this will be very detrimental to Ellie's healing, and our overall health.  This need feels particularly urgent as we will be moving in a few short weeks.  We are going to be handling this in-home air quality issue in two ways.

I have been researching for weeks into the wee hours (what? so what's new? hey!) regarding air purifiers. What I found was that there is no fool proof, 100% effective system out there for cleaning the air in the home. The most interesting thing I found is that NASA has a BioHome that is maintained by plants.  They have done extensive studies and have found that the right, efficient household plants remove up to 87% of household toxins within 24 hours!  You need to have enough of them to do the job, and the recommendation is 15-18 plants, 6-8 inch in diameter at least for an 1800 square foot home.  Check out the list of recommended plants HERE.  Our first line of defense for our new home will be plants! We will be in 802 square feet, and my goal is 15 plants from this list.  My hope is that it will be cheaper to accomplish than purchasing the outrageously expensive, top of the line air purifiers.  Now I think I understand the tradition of bringing a plant as a housewarming gift.  Isn't that smart?

The second thing will be to purchase a lower cost, as efficient as we can find air filter for the main living area, as well as one for the girls' bedroom.  I believe I have two picked out, so overall we are looking at about $400 + plants.

2- lip tie surgery.  We have decided that the best fit for Ellie (and our second attempt at this surgery) will be with Dr. James Jesse in the Los Angeles area. We have found a local, fantastic functional orthodontist for Big Sis who will not need a repeat surgery after all (woot!). Our estimation is that we will need approximately $700 in funds to make this happen.  ($200 in gas, $150 for one night in a hotel w/kitchen, $350 for surgery)

3- natural organic mattresses.  Because of some fire retardant laws passed around 2007, conventional mattresses are one of the most toxic pieces of furniture in the home.  Mattresses out gas into the air polluting the entire house.  Since Ellie spends time sleeping in our bed, and we want a healthy environment for Big Sis, too, we are working to replace all three of our mattresses.  We have found an organic kid's twin mattress that will cost approximately $500, so we are working to save $500 x2 plus $1000 for a queen.  Total we need to save $2000.

4- a generator.  Due to black outs, brown outs, and living-in-the-country outs, we need something to power our Vitamix in the event of an outage or emergency.  Ellie still eats primarily from a bottle so without electricity to puree her food she would have no food.  I have no idea how much a generator like this would cost and have not had a chance to research it. Of course is she started chewing this might not be such a huge cause for panic. ($???)

Right now these costs seems incredibly out of reach, but God knows our needs and we know He will provide.  We are going to begin posting items from our home on craigslist and to our facebook friends to try and get things started.  Prayers would be appreciated for the sale of items we don't need in order to fund these things that we do.  We received word today that we will be able to be begin moving stuff into the garage of the rental next week!  Time to figure out how to move some chickens.

Let the Eating Begin

Sometimes it seems hard to update Ellie's progress, because "she get's 2 probiotic capsules instead of just 1" seems ridiculous to those who don't know her entire story.  In Ellie's life, these changes are huge and a sign of amazing progress. About 3 months ago we finally determined what remaining obstacles were keeping her from healing and now I can hardly believe her progress!

What were her obstacles?  Ellie had fluoride toxicity and chronic constipation.  We have worked hard to resolve both issues.  We believe her conventional mattress is still causing her problems and holding up some healing, and are saving up to replace it.

In the last 6-8 weeks Ellie has begun eating: broccoli, turnip, cabbage, egg yolk, and brussel sprouts. She drinks around 1 cup of fermented coconut water a day, has doubled her dosage of GutPro, and even enjoyed some homemade marshmallows.  Her eczema is almost gone, and she is resolving the pesky staph skin infections.  She has had lemon water and apple cider vinegar without incident, but declares it 'nasty' and does not drink it regularly.

Please note that she had an FPIES reaction to applesauce prior to starting GAPS, so I was very nervous about giving her apple cider vinegar.  She has also had no problem using various art products that gave her FPIES reactions previously.  We do limit her exposure to these chemicals still (as we would for any child), but are no longer fearful.  One example of this was a recent trip to the zoo with family friends.  While in the zoo cafe Ellie picked up and brought me a package of pink popcorn.  My sweet girlfriend freaked - WHAT! She touched popcorn! QUICK!... All while I had calmly said, 'Ellie please put that back'.  We laughed.  What a change from 2 years ago!

Ellie now has 5 vegetables she can safely eat, and averages 3 egg yolks per day.

What is next?

In the next few weeks we will be trying foods higher in starch that Ellie has not previously been able to tolerate.  If she is able to tolerate them, it will show that her disacharidase deficiency is healing.  On the list are onion, leek, spaghetti squash, cauliflower and carrots.  We will be starting fermented garlic.  Once I can find a goat, sheep or camel milk source, we will also be trialing ghee.

We are BEYOND ecstatic. The Lord is gracious and has been incredibly good.  My heart runs over with her signs of healing and continued hope!

Eggs: A Labor of Love

Eggs.

Grain free eggs.

Eggs from hens that were fed no corn or soy 6 months prior, and I drove 2 hours to pick up once I found them.

Eggs we hatched, and chicks we raised into 6 prized grain free hens on our suburban lot.

Eggs which Ellie is now eating!!!



After 18 months on stage 1 of GAPS, Ellie is now eating egg yolk, and in GAPS land that means she is on stage 2.

STAGE 2!!!!!!!!!!!

No, Thanks.

With the change of medical groups Ellie became the proud recipient of 7 specialist referrals. I think. I lost count. Some good. Some ridiculous. And some a flat waste of time.

My personal favorite was the new neurologists referral for an autism evaluation.  Huh?  When I questioned her she explained that she felt Ellie needed to be evaluated for harbored anger and management of emotion. Oh, and she would not look the doctor in the eye when on the examining table alone.  Whatever.  It was obvious that she really wanted to help get her the intense feeding and sensory therapy that she needs, so we will jump through whatever hoops we need to.

Neurologist also wants an EEG. No harm, no foul is the motto. What could it hurt? It would be good just to see. Might show something, or might show nothing.  Afterwards we will determine if we should use medication.  *AHEM* No, thanks. For starters, Ellie's seizures have been controlled since starting GAPS.  Seizures are directly related to the immune system.  Standard treatment protocols for epilepsy includes gut-thrashing medication and hope for seizure control through the ketogenic diet.  Kids on keto have to be strictly monitored because keto does not meet all of their nutritional needs.  In addition, kids with an epilepsy diagnosis can have treatment mandated should the doctor deem it necessary, and then Child Protective Services become involved. (yes, seriously.)  An EEG may show seizure activity or it may not.  In fact, I found it interesting that the first neurologist had one way he wanted the EEG done and the new neurologist another.  At this point in time, there is no helpful reason to put Ellie through an EEG.  An official epilepsy diagnosis at this point in the journey would add nothing.  We are declining.

Another more obvious referral was to the allergist.  It makes sense to the pediatrician we would need one of those.  I didn't see the need quite as much, but agreed. I received a call from the allergist's office.  They informed me that they were unable to get the information they needed so they expected me to get copies of all her medical records showing office visits, tests, summaries, etc. and once received the doctor would evaluate if she authorized an appointment (or some other funky wording like that). No, thanks. We declined. Not to sound like a smarty pants, but I think we have a pretty good handle on what her allergies are.

Referral to the Pediatric GI was up next.  Good to know there is one of those around. I suppose at some point we should go meet him or her.  One thing Ellie needs investigating right now is the neurological function of her lower spine and how it relates to her ability to go poop.  There are lots of spinal complications (aside from Spina Bifida) that have potential to cause issue.  The Pediatric GI would be aware of that and would help with getting any tests done.  I had thought that would be the neurologist, (wouldnt that make sense - it is a neurological complication) but not so much.  They just care about her brain.

Finally is the referral to genetics. Oh yea. That one. The referral that the first neurologist was wondering why I had never received. How could a child with such complications have never received a genetic work up? Especially one with EGID (oh, did I mention that? She has a new diagnosis in her file. We are compiling them at this point like hotels in Monopoly.).  The EGID diagnosis is clinical, because I won't take her in for genetic testing or allow for another scope.  They looked at her eosinophils from when she was an infant, reviewed her tests for the first 18 months of her life, evaluated her current sensitivities, and said it is an EGID.  The first neurologist agreed that genetic testing was only if I was curious.  He is one of the top neurologists in the country, so I found that interesting - he knew all about EGID and seizures.

At this point there is no reason for us to head to genetics. In fact, it could be harmful to Ellie to have the genetically proven diagnosis of EGID in her medical file, because it is considered an illness for life. (Pre-existing condition anyone? The girl has already had a colonsocopy.)  Genetics will attempt to put Ellie in a box, where there is nothing but an excuse for her to be sick.  Mainstream medicine would love to find a genetic tie to all conditions from a cold to a heart attack, which does nothing other than rip away hope for healing.  The reality is that science is piling up for epi-genetics.  Epi-genetics is the concept that environmental factors determine which genes turn on and off, and acknowledges that there are many genes that never 'turn on'.  Over time some genes can even 'turn off'.  How's that for hope?  *insert thumbs up here*

By the way, at no time did anyone think we needed to see a nutritionist. Their examination of Ellie, review of her file, and who.knows.what.else was enough for them to believe she was getting her nutritional needs met.  Or not, and just figured an EGID was enough proof that she shouldn't be eating.  I found it amusing.  In fact when I finally said to the second neurologist that 1.5 years ago her allergy patch testing left a third degree burn on her back from corn, she said: "Oh wow. She is so severe. You really need to make that clear to everyone you come into contact with, all the time, multiple times, because we as doctors hear 'food allergy' all the time and it usually means something very minor."  Funny.

Life Change

"Your patient will never be able to go back to the typical modern diet full of sugar, artificial and processed ingredients and other harmful "foods".  Use the years of following GAPS nutritional protocol for developing healthy eating habits for life!" 

- Dr. Natasha Campbell-Mcbride, 

Gut and Psychology Syndrome, pg. 155

We bought this house when Ellie was 2 months old.  We moved in one month later, two weeks before Christmas, and have never fully unpacked.  Boxes and piles throughout the house have sat untouched for over two years. We are selling.  As I clean and pack I am witness to the insanity and change of the last 2.5 years. We have never really had the chance to make this place home, and though we didnt know it at the time, this house would not be what we needed.

When we bought this house it seemed ideal.  It is located on the fringe of a newer subdivision, a couple blocks from farm fields, and within 20 minutes of most everything. On 1/4 acre corner lot it has a huge backyard and we made plans for a play structure, sand box, raised beds, and fruit trees.  Now it sits with chickens, chicken coop, metal swing set, sand box, and a half-dozen unfinished projects.  We did get in three raspberry bushes that the pet rabbit loves to torture.

The last 18 months have been absorbed with finding safe food for Ellie, and now my family. The hunt has been tough.  Regardless of how I tried to phrase the question the results were often the same.  Farmer's were offended that I questioned their feed practices, and some were dishonest which put Ellie's healing at risk.  Safe food has been hard to come by, and often expensive.  When I find it, I stock the freezer like a beef bone hoarder.  Often times my sources will just disappear.  Randomly they just stop calling me back, or tell me they are not comfortable selling their products to me.  This has gone on for over a year.  Search time and drive time have kept my days tense.

About a year ago I was in the thick of searching for Ellie safe meats when our local chicken guy just didn't show up to give me my eggs. He literally went from weekly chatting it up with me, to dropping off the planet.  It was so bizarre.  It caused me to pause and seriously examine our situation.  There has always been this underlying fear of 'what if we can't find food for her' or 'what if we don't have the money to feed her'.  This incident made those fears very real, and pushed me to my knees.

I told God that I knew He would heal her, and thanked Him for hope. I told him that I was tired of chasing safe food and unsure how to continue.  I asked Him if I was to continue searching, or make a change. Was He really expecting me to spend an unknown amount of years driving my car all over hill and dale to find food for her?  Food that I couldn't always even trust entirely? He knew our situation. He knew that I simply could not continue to squeeze a GAPS family, an FPIES toddler, working full time, and hours of searching for safe food into every day.  He also knew I was willing to do whatever it took, for as long as needed.  His response response gave me clarity and a vision.

What I realized was this:

I do not wish for Ellie to be 30 and looking for safe food on craigslist.
As the parents, I believe it is our job to make sure she grows up to be an adult 
who can provide for, and take care of herself.  
In addition, we want to always have a safe place
for her to come home to.

I took that to daddy, and he agreed.  We didn't know how we would get there, but we knew God had that plan for us.  We laid it at His feet, and the rest is history.  

Here we are a year or so later.  We are making a life change.  We are moving.  We have a vision. We have an idea of what we want to do.  We are even a little bit excited.  We plan to raise some animals for Ellie, for the family, and for other's in need.  Sounds exciting, eh?  It IS...now.  It was not all roses getting to that point, let me tell you. When I was a little girl I never said 'I can't wait to grow up and be a chicken farmer'.  We have had to do more accepting of our new normal, but that is o.k. Things don't always go as planned, and certainly not when we decide to have children.  But isn't that how it is supposed to be?  

We are officially on the hunt.  We are looking for a home.  We are open to most anything, and I am just specifically asking that it not be under a bridge (truly).  In all reality I am very comfortable saying:

It doesn't have to be big enough.  It doesn't have to be fancy enough.  It just has to be safe enough.  

And with that we have hopes of acreage and the start of a chicken farm.  Want to help? Know of a lead? Have a safe place for Ellie? Have a rental property that needs some great tenants? Want to sponsor a barn raising?  Or help us launch our business?

By the way, Big Sis has been asking to live on a farm since she could speak.  After we moved to this house she informed us that she liked it, it was nice, but when was God going to give us that farm?  We laughed.  And I am certain God did, too.  He clearly hears the prayers of children.  

For more info on how you can help or what we are looking for click HERE

Botched

Confession time.  This last 10 days I have been a wreck.  Our laser surgery experience was so bad that I have not wanted to think about it, talk about it, or even come close to blogging about it.  I have been so busy dealing with fall out, disappointment, questioning God, and fear for our next steps that I have had no problem ignoring everyone who asks how it went.

*deep breath*

I did an incredible amount of research on tongue and lip tie.  One of the newest doctors on our rock star list is actually a dentist.  Dr. Kotlow is the leading tongue and lip tie specialist in the world, and maintains a very busy dental practice in Albany, N.Y.  Unfortunately there are only a handful of dentists in the country that can perform the minimally invasive and extremely fast laser surgeries that he does to correct tongue and lip ties.

We are limited on money.  If I had the money I would have loaded up the girls and flew them to N.Y. for a fast procedure that would have changed their lives.  Within 24 hours they would have gone from limitations to freedom, but there was no way I could see that as a financial reality.  Air plane tickets, place to stay, rental car, figuring out Ellie's food for travel, and the cost of the procedure (because we all know how great dental insurance is) were all expenses that made me have small panic attacks.  So I spent months searching for a doctor within driving distance.

There is one doctor recommended by Dr. Kotlow on the west coast.  He is in the L.A. area and known for being an excellent pediatric dentist, as well as having the ability to perform the procedures that Dr. Kotlow does.  I called their office and spoke to their receptionist at least half a dozen times.  Each time she sweetly reassured me that Dr. James Jesse could do the procedure, and that the girls would not need sedation.  What!  This was my major hang up.  In their office they have the parent hold the child and help restrain for the procedure. No matter how fast the procedure was, I could not imagine subjecting Ellie to that.  Her years of poking and prodding have caused her to ask 'doctor hurt me?' before we enter any appointment of any kind.  I did not want her associating me holding her down with the procedure, and felt that if she was awake she would most likely never open her mouth for a spoon again.  I prayed and prayed and prayed, and every time I thought of taking them to L.A. and holding her down, or expecting big sister to sit still, I wanted to vomit.  The cost of travel down seemed out of reach as well, and at the time we did not have a reliable vehicle that we could risk driving that far.  It all seemed like the wrong choice.

I kept calling until I happened to find a doctor that was closer and within a 2 hours drive.  He is not  pediatric dentist, but is known for being a most excellent laser dentist, which I confirmed with Dr. Kotlow by email.  This doctor is familiar with Dr. Kotlow and his procedures, and I was told by the receptionist that he had attended Dr. Kotlow's training.  They don't typically do children between the ages of 2 and 6 because they do not sedate them and they do not have restraints; they, too, expect the parent to hold the child.  However, they heard our need, and wanted to help.  They researched sedatives and those that Dr. Kotlow uses, and they worked with us, as I had multiple emails back and forth regarding compounded solutions for Ellie.  I insisted we find something, because I really wanted the girls to be relaxed and as 'out of it' as possible. The receptionist continued to remind me that the "goal is not to knock them out completely - just relax them enough so that they don't fret/get too anxious/be very wiggly during their appointment".  They scheduled both girls on the same day, half an hour apart. Daddy took the day off and it all seemed stressful but like it had worked out.  The procedure is 10-15 minutes from start to finish, so we should be on the road and headed home within an hour.

The week prior to the appointment there was complication after complication regarding the sedatives.  The first one didn't work at all, the second on was out of production, and the third one we were unable to do a trial run prior to the appointment.  The girls' previous pediatrician expressed his concern about the procedure and was not on board.  But this was the only dentist we could get to, who knew of all three mouth ties, and we are running out of time for big sis.  I prayed non-stop for months and saw this as the only option, and the best option.  In spite of my anxiety, I was excited - excited for what this would mean for both girls.

That day did not go as we had hoped.

That morning we got up extremely early, loaded up the girls, packed our lunch and all of Ellie's food, and headed to the dentist office.  We planned to arrive in town early to administer the sedatives because we did not want to do that in the car on the way there and then watch for symptoms, etc.  We left early enough to avoid Ellie falling asleep in the car, in hopes it would help with the procedure.  We were well planned out.

We got stuck in traffic and were 30 minutes late arriving to a local park where we fed them a small lunch and gave them their sedative (Valium - the easiest to compound, and best suggested sedative by our respected doctors).  They did not have enough time for it to entirely kick in and were only groggy and goofy, but that was ok because we (they) only wanted them relaxed, so I had to let that go.  Off to the appointments we went.

(part two)

Leaving On A Jet Plane

About 2 years ago a group of 5 semi-local FPIES moms gathered at my home.  We had 'found' each other via some online support systems.  Looking back it is quite amazing considering they all loaded up their young, vomiting children and lugged them to my home without any previous knowledge of who I was.  The farthest drove 4 hours to get here.  We were desperate for interaction with other mamas that were adjusting to the life of FPIES, and desperate for hope.  So desperate in fact that four of these mamas went on to help found non-profit organizations, and the fifth currently serves on the board of another.

One of those moms lives within close driving distance of our home, and has a daughter two months older than Ellie.  She has not one, but TWO kiddos with an EGID being healed with GAPS.  Over the course of the last 2 years I have been incredibly blessed to have her along the FPIES/EGID/GAPS journey.  


When someone has experienced a struggle similar to your own, they understand.  When someone is where you are, then you can trudge the journey together - side by side, working to jump the hurdles. This mama is such a friend. 

She has come along side me in the good, the bad, and the ugly.  And I am incredibly privileged that she has shared hers with me, as well.  She has said 'hooray for good poops', and 'I'm so sorry for that set back', and 'put on your big girl panties-it is what it is'.  She has reminded me to slow down, and speed up, and that sometimes we just won't know.  She has kept me from looking back unless it is only see to see how far we have come.  And what better way to feel 'normal' while in the midst of massive life changes, than to see someone on the journey with you, running alongside, and helping you to laugh along the way?

Words can not capture how valuable this mama and her family are to us.  She has shared her family, and my family loves hers. And I have found it incredibly comforting and....happy, to think of my Ellie growing up with a best friend who has a similar medical history, food story, and journey to healing.  Whose parents both tried hard to give them the world within the priority of getting them healed.

But it is not to be so.

In less than 2 weeks our friends are leaving on a jet plane for the other side of the continent, for that is where their new normal is taking them.  And we are sad.  I am sad. We will grieve when they go.

But we are happy for them, and excited for them, and nervous for them, and know that thanks to technology we can still stay 'close'.  And we will still talk chickens, and sourcing meat, and making kraut, and poop (goodness we have talked a lot of poop!).  And we will wait anxiously to hear all about their new adventures.  For they will most certainly be missed.

Godspeed friends. May the Lord bless you and keep you. And may we hug you again soon.

My Unbelief

I've had a change in perspective.

When Ellie was born I began to use the phrase 'here we go'.  Here we go with a newborn who vomits, here we go moving to a new house two weeks before Christmas, here we go to the doctor again, here we go living in a bubble, here we go GAPS...here we go...here we go...here we go.  That phrase always seemed to illustrate what I was feeling:  deep breath, close your eyes, and JUMP!  Each time I mustered up the ability to make the next leap, I was never quite sure how far I might fall or where I would land.

I have a couple of favorite Bible stories - and Peter walking on water is one of them.  In case you are unfamiliar it goes something like this (a.la.my version) - The disciples of Jesus were in a boat in the sea during a crazy storm.  They looked out across the water and saw a figure walking towards them. They yelled "ghost!" and were afraid.  Through the loud and crazy rain, the bold, impulsive Peter called out, "Hey Jesus! If that is you tell me to come to you on the water!" To which Jesus shouted back, "come on out!"  So Peter stepped out of the boat and onto the water, where he walked!  But alas, it did not take him long to loose his faith and down he went into the water where he was forced to call out for help.  Jesus reached out, and grabbed his hand before he sank into the waves.

This is the way I have always 'heard' the story - be it in my own reading, or listening to it taught.  Poor Peter. He of little faith.  He diverted his eyes from the One who kept him afloat, and down he sank.  His bold, impulsive self was not faithful enough.

A few months back the Sunday sermon included this favorite story of mine, but this time it held a new significance.  The pastor suggested that instead of focusing on the fact that Peter sank, we might make note of the fact that he was the only one that got out of the boat. Everyone else was a boat-sitter.  Because of his faith, Peter was the only water-walker.

And then I realized:  Peter stepped out of the boat expecting to walk on water. Why would he step out and expect to sink?  He did not say 'here we go' and wait to see how far he would sink.  Peter stepped out of the boat because he could see Jesus right there. Right in front of him. If he sank, He could shout out and He would be saved.  He didn't worry about the end result because he knew it was taken care of by the One who loved Him the most.  He had an expectation because he knew the promise: to be saved. Instead of saying "here we go!", Peter begged for permission to jump, and then shouted "I'm coming! Stay tuned for what Jesus is going to do!"

Oh, me of little faith. 

I headed to the Bible again and began re-reading all the stories of the new testament where Jesus healed the sick, focusing on His interactions with children.  And what I discovered is that Jesus healed anyone that came.  He healed multitudes.  And when he healed children, He told their parents to expect it.

He told them to have faith.

Mark 9: 21-27

Jesus asked the boy’s father, “How long has he been like this?”

“From childhood,” he answered. “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”

 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”

Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”

When Jesus saw that a crowd was running to the scene, he rebuked the impure spirit. “You deaf and mute spirit,” he said, “I command you, come out of him and never enter him again.”

The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, “He’s dead.” But Jesus took him by the hand and lifted him to his feet, and he stood up.

 I prayed: help my unbelief.  

And He answered.

I retired the phrase 'here we go', and began expecting miracles.  And He has been oh.so.faithful.

One night I was doing more reading about the quality of (stainless steel) pots and thought to myself: 'I suppose I should check the quality of the pot I warm Ellie's bottles in. I wonder why that has never occurred to me before. I will look into that tomorow.'

The next morning, for no reason, the handle broke off of that pot.

Ellie has not been sleeping well for several months, waking several times a night.  I mentioned to a friend 'I wonder if I should start her back on this medication.  I just don't know what I should do.'

That night she slept for 7 hours straight.  And has dramatically improved sleep patterns every since.

Almost 1.5 years ago we began Ellie on the road to healing.  She was 18 months old, and horribly sick. Critical, missing milestones and starving, with an empty promise of 'outgrowing it'...someday.  That little girl no longer lives in this house.

Stay tuned for this little girl.

She may not eat much yet, but she is already well on her way.  She won't just walk on water; she will move mountains.

Stay tuned.

I *heart* Neurologists

Dr. Natasha is a neurologist. And obviously we admire her greatly.  As for here on the home front, I wasn't planning on taking Ellie to the neurologist.  In fact, I had several reasons why it would be a waste of time and had made up my mind we were not going. But alas, a beautiful friend helped us jump through red tape to see one of the (if not THE) leading neurologist in the area, so we went.

One of the most amazing things about this appointment was that another mom had warned of my coming (and yes I feel as if warning is a proper description).  Thanks to this lovely friend - a mom who knows me, and who has an epileptic son treated by this doctor -  I didn't have to come with a resume of why I am not crazy, or an explanation of my daughter's extreme situation.  Once I got there I realized that was probably the last thing I had needed to worry about.  It was easy to see why he is in such demand; he is phenomenal at what he does. 

He took Ellie's novel long history, and we had an hour long conversation.  He knew of FPIES, and EE, and ceilac, and asked very important questions like: has she been scoped? were her eosinophils checked? who was her GI? has she seen a geneticist? why not? He was even interested in her dissacharidases tests.

He asked about her allergies and why her chart just said peanuts and a couple other things.  I explained that I was always told it was not possible to put the information in the computer.  I told him what her biggest triggers are (dairy, soy, grain, corn), and emphasized corn.  He typed away, and then said "Oh! so she can't do corn syrup, or corn....." I didn't hear the rest. I was floored! Did a doctor seriously just offer that to me without explanation? No argument about corn? or derived foods? He just kept typing.  For the first time we were able to get that information spelled out in her charts.  I was giddy.  I commented: wow! most doctors don't even understand or believe that is a possibility.  I said we were grateful to our fantastic allergist for that realization (to which he wanted to know who and said 'oh yes he is great.')

He then asked what she ate. I gave the 2 minutes version of the GAPS diet and its origins in SCD for Celiacs.  I explained her current diet, and said that she would react to meats fed corn, soy or grain. His response while typing was a quick: "well, of course. That makes perfect sense."  I about fell off my chair.

He confirmed what we have seen is most likely seizure activity, and believes she has heightened seizure activity at night. He asked a lot about what she does when she wakes up and how often.  He said that night time seizure activity is common with kids like her due to body changes at night.

He shared several stories of healing, and treatments he has used for other children. The appointment was very full of information and conversation.  He took a look at her spine and her sacral dimple/line, her hips and her turned in foot.  He said there is possibility that one side of her brain is having more activity than the other which is contributing, but that he did not really feel that was the case.  He has some tests he would like to run (EEG, MRI) and then discuss things further. And he finished up by saying he 'looked forward to working with her. She is a very interesting case.' I laughed out loud. Interesting indeed!

Safe

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:  http://andykiara.blogspot.com