Small, GIANT Successes

Things have been so incredibly busy and full of new progress that is has been difficult to find the time to update.  Days 3 through 7 of Team Ellie have brought some seemingly small, but in reality extremely large successes for Ellie. Some of these leaps have come after months and months of hoping and waiting.  While we have made some adjustments to her routine and treatment, there is absolutely nothing that be credited except for prayer. Prayer has done amazing things for Ellie in the last 6 days!

Some examples:

Ellie does not like to let us near her mouth.  It is usually a fight to brush her teeth and we have to do everything with the promise that we won't shove a food in there or do something unexpected.  Her teeth are not developing properly because she doesn't chew, and because of her lip tie.  She has this yellow mineral build up on her teeth that is left from the formula she was on, and some of her teeth have not come all of the way in and still have skin over the top because there is nothing pushing down on them from chewing.  She never had the opportunity to even gnaw on something because we were always taking things out of her mouth to keep her from vomiting.  This week she has decided she has 'dooty teeth' (dirty teeth) and has been letting me floss them daily! Slowly the yellow is coming off and her teeth are looking better.

This week we started Ellie back on her topical glutathione (liver enzyme) for the third time.  The first two times it appeared that it either didn't help and/or it made her eczema worse. I was concerned that after all the research I had done to find the cleanest possible base she was still not tolerating the added ingredients.  That may very well have been the case, but this time she seems to be doing great! Her eczema is clearing which means she is detoxing the right way instead of through her skin.

By the first day of Team Ellie I was getting concerned that she had a staph skin infection again.  A couple of weeks ago we let her play outside in a cheap plastic baby pool filled with unfiltered water, and the result was chemical type burns on her butt cheeks.  It was not healing and I was beginning to get worried at how it was spreading and looking like staph.  Within 24 hours I saw that the prayer had changed things dramatically, and today it is almost entirely healed. 


On another note, I celebrated earlier in the week because Ellie was showing obvious signs of detoxing (properly) for the first time in 15 months.  There are several signs, but one of them was that her urine was darker and had a new smell.  It took a couple of days to get to the bottom of it, but the truth was that her older sister was secretly peeing in Ellie's training potty and leaving it for me to dump. This resulted in a good laugh between the daddy and I (sheesh).

After some bumps in finding the right adapter we have fluoride free water, and are cleaning out the freezers of broth and meat made with fluoride - using some up while we refill the freezer, and then tossing the rest.  I am really excited to see how much of a difference this makes for her.

She had a three day streak (pun intended) of pooping without help which was awesome....but that has stopped and tomorrow we resume GAPS constipation protocols of daily enemas.  I have been so busy with my work schedule the last two days that it was not until she was in bed that I realized she had not pooped all day.  Major fail. Bummer.

And I should also add that she has a new food!....sort of.  We have started giving her fermented zucchini juice as a part of her daily probiotic support and she has done fantastic! In fact, she has shown no signs of adding it at all.

I am so grateful for those of you praying.  She has had some amazing growth and success since May 1, and it is all because of Team Elie.  I feel so blessed to see and feel the hand of God working in such an obvious way, and we have felt it within other areas of our family life as well.

Prayer requests:

I have had decided to turn in an application to the local Shriner's Hospital in hopes that their specialists can help with the lip tie and evaluation, as well as the spinal MRI. They have great resources there for the treatment she needs.  Please pray that should it be the Lord's will, her application will be reviewed quickly and they will agree to treat her.

Ellie needs a new, all natural, chemical free mattress.  The one she is sleeping on is very toxic for her.  Please pray that we will be able to save up the $400 needed for this mattress.

Next up is a new food trial! I am extremely nervous (for seizures mostly).  We have a few things to choose from.  Please pray that I know which to try next.

And I am in need of some wisdom regarding a couple of other supplements - whether to give them to her or not.  Prayers for that would be fantastic as well.

7 days!

7 days of intense prayer for Ellie has shown amazing things - things we have been working towards for months that have been realized in a matter of days.  I can't help but wonder what else God has in store!

Day 2: A Puzzle Piece or Two

For months I have been trying to figure out why Ellie's body is still not detoxing properly. After such a length of time on what is known as stage 1 of GAPS introduction, she shows signs that are still puzzling.  Her eczema flares with any change in food, she still has large amounts of urine, and there is still plenty of evidence she battles fungus.

In a properly functioning body, God has established an amazing detoxification system.  Outside toxins that make it inside, inappropriate things ingested, or waste produced within the body by bacteria is simply packaged up nicely and sent right back out thanks to enzymes and an amazing immune system (major over simplification there). Ellie has not been dumping toxins properly, and we know this because her body is still trying to push them out through her skin or respiratory system.  We began giving her a topical enzyme supplement which has helped in some ways, but has not been enough.  Her skin has still been a wreck, and I am fearful of seizures.

Last week I received one new piece of the puzzle.  We have not been treating her constipation properly.  We have been letting her go too long without giving her an enema and helping her body rid of toxins.  The longer those toxins sit in her intestines, the more they get absorbed right back in and her body was detox them all over again.  It is imperative that she poop daily (as should we all).  We have started following GAPS guidelines on constipation and began to see improvements within a couple days. 

The second puzzle piece has been a horrifying find, and one I have been contemplating for a few weeks. But I confirmed my suspicions when I finished my research today. (hooray for Team Ellie and answered prayers!)

We have a whole house carbon filter that eliminates chlorine and toxins like pharmaceuticals from the water.  Yes, treated city water is full of all kinds of toxins. And summertime in California is the most puzzling of all.  I know many a household who have spent thousands of dollars to filter drinking water, and often bath water, yet go spend every afternoon in their chlorinated swimming pool.  Not only is there an actual respiratory infection associated with the gas produced by chlorinated pools, but your skin sucks up more chlorine in a bath or pool than you would ever get from one day of drinking chlorinated water.  Thus, the image of a bottled water drinking person soaking up the sun in their chlorinated swimming pool is a puzzling picture for me.  Sorry, California. The EPA has labeled chlorine as one of the top 10 carcinogens. 

All that to say we have eliminated chlorine from our water a long time ago.  But we did not filter our water entirely.

At some point in time someone governmental decided that it would be a good idea to add fluoride to our drinking water.  Fluoride and heavy metals are not removed by a traditional carbon filter like the one we have in our garage.  Recently I began looking into fluoride to see how bad it really is, and was absolutely righteously angered.  Here are a few facts:

-The largest state legislature in the U.S. recently passed a bill mandating infant fluoride warnings on all water bills in fluoridated communities.
-  Ingestion of as little as 1 percent of a tube of flavored children's toothpaste can produce acute fluoride toxicity in a young child.
- Infant formula contains fluoride, and the CDC acknowledges that mixing infant formula with fluoridated water is too much fluoride.
- Fluoride in our water is actually industrial waste.

I could keep going but will stop there.  A little google will get you a long way with fluoride.  As will a Medscape article on fluoride toxicity.  Not only is fluoride stored in the thyroid if it can't be detoxed, it has an amazing effect on the gastrointestinal tract.  Lets take a look, shall we?

Fluoride has several mechanisms of toxicity. Ingested fluoride initially acts locally on the intestinal mucosa. It can form hydrofluoric acid in the stomach, which leads to GI irritation or corrosive effects. Following ingestion, the GI tract is the earliest and most commonly affected organ system.

Bitter much? Why yes I am! But thoroughly and totally grateful that God has revealed a barrier to Ellie's healing, and yet another way she is making the rest of us healthier.

Summary:  As we were trying to help Ellie dump toxins out of her body and properly heal, we were continuing to give her fluoride which her body must work to eliminate.  If she is already overloaded and damaged from excessive fluoride intake, this is a losing battle.

The plan:  We have purchased some amazing fluoride filters (cha-ching) and will be transitioning her onto non-fluoridated water as-soon-as-I can get the filter hooked up.  We are putting her back on her enzyme supplement to help with the detox load that will begin to happen naturally in her body, and are considering adding a natural form of vitamin C to assist with the detox as well.  If we do it will have to be *very* slow to avoid overload of her system.

Please pray for wisdom on the vitamin C.  There are risks involved in giving her an oral supplement of any kind, and a few specifically tied to (natural) vitamin C.

Please pray for Ellie's body, that it will begin the detox process and that it will not show complications.

And perhaps check out this amazing and reasonably priced website to rid your own home of fluoride: Friends of Water

The Never Ending Story

This is the song that never ends....oh it goes on and on my friend.... 

I often feel like that children's song when giving Ellie updates. Yes, she is still sick. No, she still isn't well.  Yes, she only eats the same three things. It is difficult to explain where she was, how far she has come, and how far she still has to go.


Ellie is the perfect storm. Her layers are many.  Her situation is severe.  She has been one very sick little girl, and over half of her little life has been spent in pain.

Today is May 1. Today Ellie is 33 months old. And she has been on an extremely restricted version of GAPS for 15 months.  Every day I am torn between the joy that comes from seeing how far she has come, and the pain that comes with knowing the journey is far from over.  Those two extremes are hard to explain to someone who asks how Ellie is doing 


Today when looking at Ellie you will see eczema, and for the trained eye perhaps her turned in foot or favoring of the left side of her body.  She is not kept in a bubble.  She can touch food without causing us to panic, and I have lost track of when we last saw an FPIES reaction.  If she gets stickers, or markers, or needs a band aid, we don't panic.  Small exposures no long cause her to vomit until she passes out from exhaustion, or to poop green acid that burns off her skin.  She is growing without issue, and has a full head of adorable brown curls.  She is talking in complete sentences, can identify all of her colors and is learning her beginning reading sounds.
 
She has already healed a tremendous amount.  But she has a long way to go.

GAPS is hard, but for Ellie GAPS is tremendously hard.  Each individual moves through the stages of GAPS depending on their own factors and amount of healing needed. The longer Ellie is stuck, the more insight we get into what she needs to progress and where her hang-ups are.  And without looking into the eyes of a screaming, malnourished, hurting child, I can begin the process of attacking those hang-ups to further her healing.  It is a slow and frustrating process, but I am comforted by knowing that on GAPS she is nourished completely.  And when you have spent months being told you cannot feed your screaming baby under the false promise of 'gut rest', nourishment is something you never take for granted again. 

Ellie has three hurdles to overcome in the near future.  They seem rather large, but I am confident that they are just layers of healing and part of her journey.

1.  She needs an oral evaluation.  She has an obvious lip tip, and needs to be checked for other restrictions that are keeping her from chewing food.
2.  She needs an examination of her spine for possible hidden complications.
3.  She is not detoxing properly and we need to figure out why.

These three things seem huge when added to her already established eating and therapy routine.  And let's not forget every day activities and life in general (did I mention she is also potty training??).  But God is good, and He has promised healing.  Not only for Ellie, but for all of us.  It's just a journey to get there.  And we are going to make it!

It's A Wiggly Party

Ellie loves the Wiggles.  Loves is actually a mild word for it. I should probably call it more of an obsession or completely love struck.  I recently took a look at their website and found that they will be touring again starting this summer and heading to the U.S.!  Ellie's birthday is in August and they are visiting Sacramento in July, so we are hoping to make it an early birthday present.

The Wiggles also support Anaphylaxis Australia, which is pretty cool. Wouldn't it be cool if I could get them to sing this song for Ellie?

Did you see the guy in the big meat suit? I can't help but wonder what it would be like to have the Wiggles go GAPS with their song and have their descriptions of symptoms disappear into a pot of mom's chicken noodle soup.  Perhaps someday I will get creative and do a snazzy video of my own (never).


For now I will just film our own Wiggly Party with the rockin' Ellie.  That alone reminds of how far we have come in 14 months.  I love her spunk!

Hold the Diagnosis

The appointment with the neurologist was very helpful.  The doctor was able to put into Ellie's medical file very important information that has not been there until now.  He documented her limited diet, her severe responses to corn, and her probable seizures (seizures I think need to be confirmed on an EEG).   He checked her gag reflex and swallowing abilities. He acknowledged her turned in foot and leg, hip issue, and sacral dimple/line.  He said she needs major feeding therapy by someone who is very experienced, and disagreed with some of the advice we had already been given.  He said she needed to be seen extensively by someone who had experience working with severe cases, such as stroke victims.  He brought up several things that had never been addressed, and he also helped us piece together a few new things.  This was GREAT.

BUT.....

We will be considering the MRI; we will not be doing the EEG.  The reasons for this are several.  For starters Ellie has never had seizures except in response to food or perhaps environmental exposure.  She has no signs of a brain tumor, has no evidence of a brain bleed, and has not been in an accident or injured, just to name a few.  NO additional complications came up or were of concern to the neurologist.  The topical glue and chemicals they would use to adhere the monitors would most certainly cause all kinds of problems for her overloaded system.  When I read the handout that said to be sure and scrub her head to remove all chemical adhesives immediately after removing them I though 'yeah right. she would be a wreck before we left the outpatient facility'.  At this point we do not see an epilepsy diagnosis being helpful.  We already know she is at risk for seizures, and aside from diet modification the only accepted form of treatment is medication, many of which destroy the intestines.  It is a label that could affect her for years to come.

And by the way....

We don't make our choices based on fear (no matter how afraid we may be). But I felt it important to note that while I am new to the world of epilepsy, it is obviously a diagnosis that is considered rather severe in the world of children.  No one doubts that seizures are scarey, and (potentially very) damaging.  Opinions on how to treat epilepsy are strong, and if you choose an alternative approach to managing seizures and your doctor is not in agreement, child protective services can be contacted.  Far fetched as this may sound to some, I know moms of epileptic children that this is happening to.  I have read major news stories of parents choosing non-traditional approaches to their child's cancer who this has happened to.  I know FPIES moms with Munchhausen by proxy in their child's charts.  One of Ellie's GI's documented that Ellie's dietary restrictions are exacerbated by an over protective and apprehensive set of parents.  Who do these doctors think they are?  Just like teachers, there are some good ones, and some bad ones, and some who have forgotten the oath they pledged.  We are so grateful for the team of doctor's Ellie has had;  we have been spared much when compared to others.

And another thing....

Additional deciding factors for us right now are rather large.  They are:
- Our insurance would not pay for an EEG and we would have to pay for it out of pocket, and
- Our insurance is changing and this doctor is not on the provider list.

So....

For now we hold off on a diagnosis.  While this doctor is amazing and uses diet as a form of seizure treatment, we have no idea who Ellie's next team of doctor's will be.  And the potential medical bill coupled with the risks far out weigh the need for a label for new symptoms.  The goal is the same: healing.  So for now an EEG is not even making the list of 'to do's'.  We are loosing her 'team'.  And that is a pretty major event.  Or is it?

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!

Boil, Blend, Repeat

Things around here are hard.  There is truly no coating that over with much, and certainly not anything sugary or filled with corn.  Everyday we boil, blend, and repeat. And repeat again.  In the middle we work, do laundry, try to feed the family, and look around at the things we don't have time to clean.  Then there is home school, the research, the doctors appointments, and....well, you get the picture.  The last thing I enjoy doing is adding another regular activity to the every day schedule.

Long before going GAPS I investigated the issue of disposable diapers.  Conversations about butt rashes, diaper creams, and diaper choices are common in the FPIES community.  How could it not be with so much revolving around poop? I too, participated in the investigation of which diapers had corn, which did Ellie seem to be ok with, and the reality that her uber sensitive self should probably be wearing cloth and not disposable.  But like mainstream thought, I had examined through the lens of 'what can we get away with' and not 'what we truly should be doing'. 

We switched Ellie over to cloth diapers and her skin improved.  I had no doubt that it was beneficial for her. But then came the laundry and the time involved.  It's work to keep cloth diapers clean, and to figure out how to keep a child who seems to pee 12 cups in one shot from peeing all over the house.  It wasn't just a matter of pee filled diapers, either. It was pee filled beds, and pee filled car seats, and an entirely new hurdle for even leaving the house.  Over time we became more lax, and back to disposables we went.  First it was just when leaving the house, and then it reversed to only using cloth at night to help contain the pee.  And I began to complain of the cost of disposables again. And the old way of thinking was back. 

"These disposables are probably not the best for her, but she seems ok....look how well she has healed that she can tolerate them....and she always did ok with Huggies...and the expense will be short lived once she is potty trained....and holy cow who wants to wash an FPIES poop off of those cloth diapers anyways??" 

The little beads that were left on her skin when I changed her diaper bothered me still, but they didnt leave a rash and any other diaper either had corn or caused a rash.  So onward we went.  Until recently.

Recently Ellie had a staph skin infection.  It was extremely heartbreaking to feed her the anti-biotic which I knew would be damaging her intestines and set us back on the healing journey.  She had never had staph before. In fact, all of our battle has been largely tied to fungus and those corkscrew little demons that can burrow right into the gut and leave gaping holes.  I had never stopped to consider other bacteria, such as staph or strep.

And then over twitter came a link to an article on disposable diapers.  I glanced through the article quickly, and assumed it would be like most of the other articles I read - discussing how landfills were full of them, and how our government was probably putting them in capsules and burying them in the ocean or some other environmentally damaging tragedy.  What I was shocked to find actually came near the bottom of the article and just happened to catch my skimming eyes.  Staph.  Staph. huh? STAPH!

Here is what I read:

One of the dangerous chemicals inside disposable diapers is called Sodium Polyacrylate. Even the “eco-friendly” diapers contain this chemical, too. This is the chemical added to the inner pad of a disposable that makes it super-absorbent. When the powder gets wet, it turns into a gel that:

• Can absorb up to 100 times its weight in water.
• Can stick to baby’s genitals, causing allergic reactions.
• Can cause severe skin irritations, oozing blood from perineum and scrotal tissues, fever, vomiting and staph infections in babies.

What in the.....

A quick google search confirmed.  This is another one of those 'common facts' that no one cares to share, or even thinks is important.  Dear Jesus, forgive me.  My eyes had been opened to risks so long before, and I couldn't deal with the thought of more laundry.  I was ashamed.

My 8^th grade teacher required the entire class to memorize a fantastic little quote. It has bounced through my mind repeatedly in the last few weeks.  Having been a professional educator now for more than 10 years, I feel confident in saying he would be pleased that I still have it tucked away in memory. While in junior high I had absolutely no idea what a little jewel this quote was.  I remember thinking it had everything to do with me not wanting to complete my homework, and this quote was meant to rub it in.  Now I see the incredibly important life lesson behind it.  Here it is:

"Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not." - Thomas Henry Huxley.

I was not exposed to the second part of this quote.  The entire quote by Mr. Huxley goes like this:

Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not.  It is the first lesson that ought to be learned and however early a man's training begins, it is probably the last lesson that he learns thoroughly.

Indeed.  The last lesson that he learns thoroughly.  And in my case, must learn repeatedly.

Ellie survived her round of compounded keflex, but her skin still struggles.  We have transitioned her back to cloth diapers and the laundry has begun to pile up.  I have no idea if we will see a significant change in her skin after this, but I can be comfortable knowing I am not giving her a staph infection (or cancer).  And I also do not find it coincidental that in conjunction with the anti-biotic, her pee amounts have decreased significantly (what was in her bladder?) and she has begun to sleep for longer stretches for the first time. 

Only God's grace would allow that.  In the end I may get more sleep!

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

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

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. Not.one.person. 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.

Drat!

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.

UGH!

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

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, ...you 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.

Bright Side

Thank you for the well wishes and questions regarding Ellie's new developments (there have been a lot!).  At this time we have decided not to pursue testing regarding Ellie's seizures.  There are a few reasons for this.

The first is that initial testing would involve giving her an MRI and because of her age she would need to be put under anesthesia to keep her from moving.  I am not a fan of giving her anesthesia because of her last experience, or dealing with putting chemicals ('medications') into her blood if not 100% needed.  Also, the test may not show anything.

The second reason is that standard treatment protocol would be to put her on seizure medication.  This would be another thing I would like to avoid, and since she is not having them regularly it does not seem prudent to put her on medication 'just in case'.  We have only seen this one in the last 8+ months.

The last (and in my opinion the most important reason) is that we already have her on a medical diet designed to control seizures.  And it appears to be working.  I believe now that Ellie was having these seizures prior to starting GAPS at 18 months old, and shortly after stopped having them.  That is enough proof that they are controlled with her diet, and the recent events have given us information on how to watch and be aware.

I am also amazed once again at the human body.  There seem to be many types of seizures and causes (I am very much at the beginning stages of research and learning here), but one thing that I have learned is that a seizure occurs when the brain becomes irritated and an 'electrical storm' occurs. I have also learned that there are chemical and food induced seizures, which clearly seem to apply here.  The protein structure that holds together the intestinal cell wall for protection is very much the same as the protein structure that holds together the cells forming what we call the blood-brain barrier.  Things that cause damage to the gut wall, inevitably cause damage to the blood-brain barrier as well eliciting a neurological response to leaky gut (ie. Gut And Psychology Syndrome).  Proteins and toxins that are not supposed to be in the body at all can make their way into the brain, where it becomes 'irritated' and reacts. Amazing! If the foreign protein or toxin gets past the first line of defense, the body has a new alarm bell to let you know something is wrong. Seizures is one of those alarm bells.

Clearly I am not happy about this new development, and it will add  new dimension to every food trial we do from now on.  It illustrates further how sensitive Ellie's specific situation is, but the bright side once again is that her body is working properly and recognizing foreign funk. I will hang on to that!

Seizures

At this point in my life I consider myself to be a poop and vomit expert.  I am getting pretty good at immune system and gut health 101, yet I really know very little about neurological symptoms.  I know they are connected to the gut, but admit I have paid little attention and put all of my focus on the symptoms we label as 'FPIES'.  As a result, the last three weeks I have once again felt that panicked run, as I headed up the steep hill of learning once more. 

About three weeks ago we gave Ellie a microscopic dosage of a new probiotic.  This is a probiotic we have been building to for a year.  It is a probiotic that would show she was healing and that I hoped would push her into the realm of eating more foods. 

That afternoon I put on her shoes and she headed for the door to the backyard.  She stopped short like a stiff board, and there she stood, not moving,.... frozen for a good count to five.  She then fell over the same way, bouncing off the table leg and hitting the floor with a thud.  She laid still for another count of maybe 5, and then the screaming began.  It was a scared, hysterical scream, and she fought me holding her or even picking her up. She used no words, and only grunted a weird growl at me when I asked her questions.  When I looked close her pupils were not the same size.  It took about 5 minutes for her to calm down, and she was no longer interested in going outside. She seemed a bit worn out. 

In my head I thought 'wow, that was scarey and weird.'  For several days I mulled it over in my head, and kept an eye on her.  For the next two weeks we continued with the probiotic, spacing the dosages out farther and farther because her eczema was horrific and she did not seem to be tolerating it at all.  We don't think she had another 'fall down' episode, but she would wake up screaming that same hysterical scream in the middle of the night.  By the end of about two weeks her verbal abilities were a slurry mess, and she had lost complete words. 

Needless to say, the last few weeks have been time of research, processing, and some good mommy panic.  I remembered these 'thumps' prior to starting GAPS and had even blogged about them.  I paid little attention to them, and they stopped a couple of months after starting her on GAPS.  This is the first time I had witnessed the 'episode' from start to finish. 

Yet never fear, God is always preparing the way.  I have a colleague/friend whose son has epilepsy and I ran the information by her.  I also now have a long distance GAPSkids friend whose daughter has Dravat syndrome, a severe form of epilepsy.  I was able to get insight from her from a GAPS perspective.  And that Rockstar GAPS doctor we love...well her first doctorate happens to be in neurology.  I had listened to some basic information on seizures from her sessions at the WAPF conference in Dallas. 

I emailed Ellie's doc (Dr. Cowan) just to let him know and confirm I should stop giving her the probiotic.  Of course he said yes. I think in the back of my head I hoped he would tell me it would stop and get better and that this was just an adjustment period. I knew better.  I knew that it wasn't. I knew that pushing through symptoms of something wrong was just a ridiculous way of ignoring the body's warning signs. These symptoms had caught me completely off guard.  They were frightening. 

It took 7 days for Ellie's verbal skills to return to 'normal'.  It has been 2 weeks since the last dose of this problematic probiotic, and her eczema is still a disaster.  Her cracked arms and legs keep her up at night, and bleed from her scratching.  While we wait for her body to heal, we tweak her next steps.  The plan changes again, and I delve into learning about neurological symptoms.  We adjust. The plot thickens.  The complications increase. And I get used to the idea that my FPIES toddler is also prone to having seizures.

Well, Shoot.

Today as I watched Ellie suck on a dried mango I was launched into a surreal moment.  I was breaking the rules by letting her have it, but truly I had no idea she would actually put it all the way in her mouth and try to eat it.  We have headed back to Occupational Therapy, and are taking a look at her major feeding delays and sensory issues.  She has begun to finally show signs of wanting to put food in her mouth and learn how to chew.  Today she surprised me by putting a dried mango quite into her mouth and following it up with a 'dat yummy good'. As I looked at the mango smears on her face and revved up for the coming confrontation of having to take it away, I had a flash back to what that would have meant one year ago.

A year ago it would have meant panic. It would have meant waiting and watching the clock and wondering if there would be vomit, or skin blistering diarrhea, or hives, or fluctuating blood pressure, or.....?  Today it meant 'oh crap, how much fungus is that feeding', and 'she is going to be crushed that I have to take that away'.  And she was.

She sobbed as I told her that was enough because it would hurt her belly, and screamed 'mine' repeatedly at the top of her lungs.  She let me hold her as she yelled in frustration to the point where I was certain the neighbors would call the police.  And then we moved on.

There will be consequences.  Regardless of what symptoms we may actually see, those minor slip ups are not minor at all when dealing with the extremes of Ellie's gut health.  But in one year's time she has had enough healing that the day ended different.  I am not gearing up for a long night in the over-sized green recliner holding a baby crying in pain, and cleaning up continuous vomit.  And for this I am thankful. 

A few steps backwards due to a dried mango certainly stinks.  But this time I have the opportunity to see evidence of healing, and be happy she is showing progress with self-feeding.  Works for me.  Makes all of that broth making a little easier.

It's a GAPS-iversary!

On the night of February 10, 2011, I held a dying child in my arms. 

Her weight had plummeted, she was dehydrated, and her elemental formula had failed her.  I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear. 

We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error

We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'

We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her

Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet.  Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby.  And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'.  Her body was tired and worn out from fighting.

We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time.  And on the night of February 10, 2011, I was certain she may not make it until morning.

Fear. I could never explain the fear.

I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.

The actual dates are muddy since email dates do not match blog post dates;  I certainly was not focused on taking notes.  I had already purchased the GAPS book and had skimmed it.  My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research.  I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask.  There are a lot of things I should have done....differently.  And a lot of things I did not understand.  But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.

It was hard work.  And it was petrifying.  

Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing.  Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.

Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear:  You can heal your daughter.

One year ago tomorrow, someone I had never met saved her life.

And I vowed I would not be quiet about it.

GAPS heals autoimmune disease. Period.  It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.

Need hope? 

Grain Free Chickens

We did it. Ok well the Daddy of the house did most of it.  And we had lots of help, like from Opa who helped with the chicken coop.  But we did it.  We have our first pot of grain free chicken broth brewing on the stove. 

About three or four weeks ago several of our backyard birds decided to hit puberty and announced their arrival by crowing all at once.  Not sure yet what we wanted to do with these roosters who were not quite big enough to butcher, we loaded them up and delivered them to my parent's house for holding.  Daddy and Papa threw together a second coop there to hold them, where they are happily gorging on worms and getting fatter.

We were left with 7 birds in our backyard for laying hens; until Sunday when one of them decided to crow.  We were unable to drive it up to join it's 'brother's', so the unlucky fellow has become the first grain free chicken grown from our yard to feed Ellie, and the ultimate homemade chicken soup for healing.

Exciting times around here.  This is a hard won battle in the fight for safe food to feed Ellie, and one step in a larger plan.  Stay tuned for more chicken stories as we supply our kitchen table....and hopefully those of some others.

Note: If you are looking for information on raising chickens, please check out this book by Harvey Ussery.  I had the blessed privilege of learning from him for an entire day at the WAPF conference in Dallas.  His information and teaching has been pivotal in our success. 

If you are looking for more information about our grain free chickens, please hop over to my new site where you can find the details: http://hopecentric.com/our-grain-free-chickens/

Lovely Bunch of Coconuts

Surprise! We are still giving Ellie coconut oil.

When we stopped the dosage because she was having horrific respiratory symptoms and it was too much for her body to adjust to, she was fine for one day, had the most amazing lets-take-a-picture poop on day two, and then day three began to have all kinds of crazy symptoms like something was wrong. It was as if I was watching the fungus take back over her body, and I realized that we had made SOME ground and I didn't want her to give it up! So we added back in 1/4 teaspoon of coconut oil per day and have been holding strong there ever since.

She is doing great, eczema cleared, and seems to be more of the pace she needs. We are learning a lot about healing and the myths and truths behind die off and detox. The trip to see the new Dr. helped with that a LOT.

So for now we move sooooper.sloooowly. So slowly that it is painful for this impatient mama. A little bit of coconut oil....figuring out how to make fermented coconut water...and on to purchasing a lovely bunch of coconuts!

Rock Star

Do you know our Rock Star? I had an incredibly privileged chance to meet her at the WAPF Conference a few months back. Getting a picture with her was an amazing feat, as she was followed everywhere she went by crowds of people wanting to ask her a medical question about themselves or a loved one. And true to her nature, she would take the time to answer each one. I just wanted to say thank you without erupting into a puddle of tears and snap a picture for the baby book, which I barely managed to do. This is me with Dr. Natasha Campbell-McBride, who we most fondly refer to as the doctor who saved Ellie's life. And mine, daddy's, and big sisters. She is the author of GAPS, which combines current science, with been-around-forever science, to create healing science. It is what got Ellie eating - GAPS. And what the entire family is now on. Contrary to what several of my friends keep saying, we are not on a 'diet'. We are on a 'lifestyle change', that is focused on healing us from the inside-out. Each of us will be moving at our own pace through these healing stages, and eventually we hope to be eating just plain 'ole real food.

Here are a couple of other Rock Stars I had the chance to meet.



Sally Fallon is the author of Nourishing Traditions, President of the WAPF, and owner of New Trends Publishing. I had the opportunity to work as a full time volunteer at her New Trends booth at the conference.













This is the booth where I volunteered and assisted another WAPF Rock Star named Agnes Bunagan. She was awarded the 2011 WAPF Activist Award.


Here is a picture of me with Rock Star Sarah Pope, The Healthy Home Economist. This is one kick butt nutrition mama, who also serves on the WAPF board. She is so incredibly petite, that even though I have lost 25 pounds on what I love to refer to as my "Bacon Diet", I still look like a truck standing next to her.

This is as close as I was able to get to Rock Star Dr. Mercola.

Another major Rock Star at the conference was Dr. Thomas Cowan. He was a founding board member of the WAPF, is the author of The Fourfold Path to Healing, and is a well-known anthroposophical doctor who practices holistic family medicine in the San Francisco area. This brilliant MD was followed around the conference in large groups, much like Dr. Natasha. I knew little of him before the conference and did not track him down for a photo. Now a picture seems a little silly, since he is Ellie's new doctor.

hold on.

Did you catch that??? Ellie's new doctor. That's right. Unfortunately Dr. Natasha insists that her practice in Cambridge is full and that I should not fly Ellie there (you know I would). I am just worn out from trying to manage the learning curve we are on, and in need of someone to explain and remind me on those days that my brain is mush (oh wait, that is everyday). So yesterday we had our first appointment with him, and it was amazing.

What made it amazing? Here are some brief highlights:

-During our appointment we spent at least half of our 1-hour appointment with him taking her entire medical history. At no time did he tell me I was crazy, nor did he tell me anything I said was impossible. He understood her severity, and her extreme sensitivity.

-He said she is doing fantastic, especially considering the severity of her damaged little intestines.

-He knows and understands GAPS. In fact, he knows Dr. Natasha very well. Hello!

-He answered our questions thoroughly. (This mama needs things explained, and re-explained sometimes, which I am certain Dr. Natasha can attest to with all of my most obnoxious emails to her with the same question worded fifty different ways.)

-He was not afraid to say that she may not ever eat more foods, and that he couldn't tell me which ones to try next. He reaffirmed that she will continue to heal, and that we would have to just keep trying GAPS legal foods as she progressed.

- He said she will need more time to heal. Perhaps a lot of it.

-He offered ideas to help her progress. Not magic cures, but things to try to see if they will speed up the healing process.

It was a brain-filling day, and I still have a lot to process.

Last night I looked at Ellie's daddy and I said:

We have a doctor for Ellie. A BRILLIANT doctor. Someone I can call, or email, or take her to see when I am doubting and confused. Someone who knows GAPS, understands the hurdles for her healing, and who came along side us. Someone who has examined her, and confirmed that she is nourished on her current diet. I feel like a million bricks have been lifted right off my shoulders.

And I cried.

Indefinite.

As I prepared for yet another new doctors appointment for Ellie, I am baffled at the amount of scars that were festered. I suppose there are some things that will always be painful to relive. The unknown, the confusion, the feeling alone...all as my toddler was dying from the inside out.

Ouch.

That one is still hard to even write.

I have been praying all week for clarity and direction. I have been praying for comfort and for hope, and for knowing that this is the right next step. And He has been faithful. He always is.

If you have been on this journey with us from the beginning, then you know how critical things became for Ellie. You know how far she has come, you know how far we have come as a family, and you know how far the journey has stretched me. And you know the nervous anticipation that surrounds this appointment tomorrow.


It was not until yesterday that I finally found myself in a place where I could pull it together and begin to make notes on her medical history. Not until after I had a chance to process through the first part of my recent conversation with God. You see, I realized that He has been very clear on this journey.

He has said: I will provide.
He has said: I will take care of her.
He has said: I love her more than you ever could.

But He has never said: I will heal her.

Never. And with this came the realization that after 29 months of fighting to fix her, I have a sick child. Indefintely. No matter how much we do, or what science says, or what doctors know, she may stay sick. It is His choice, and her testimony.

These hard lifestyle adjustments and months of sleepless nights and fighting for answers shows me that the only place I really should be is on my knees. This is an imperfect world. This is a place of sickness, and disease, and terrible tragedy.

What He does promise is that through all things He will bring good. (Romans 8:28)
What He does promise is that He gave her a future and a hope. (Jeremiah 29:11)

He made her. He knows her inside and out. He knit her together in my womb. And He loves her.

Indefinitely.

Tomorrow we head to an entirely new experience...a holistic MD. And I am letting go, and letting Him take control (or at least trying hard to).

And I am grateful. Grateful that while He has never said He will heal her this side of heaven, He also has never said He won't.