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.

The Promised Land

Just like her big sister, Ellie absolutely loves music and dancing.  Last week she was dancing her heart out in the living room when a Veggie Tales song came on, and suddenly I heard the words:

It's time! It's time! Did he just say it's time?! 
We didn't have a lot of fun in the desert.  We didn't have a lot of fun in the sand. 
But saddle up your cow, and fall behind us now, because we're going to the promised land. 

I looked up at Ellie and grinned.  She kept bouncing.

For years I've eaten nothing but manna - a dish that is filling, but bland. 
But now we're on our way, I'll have a cheese souffle, because we're going to the promised land!

At one time this song would have made my heart hurt.  It was about food, and the promised land, and all those things so far out of reach. But this time all I could do was grin.

Sometimes it takes 40 years of work and waiting because of choices other people make, choices you have made, environment, things outside of our control, genetics, and who-knows-what-else in order to find healing and see promises fulfilled.  It's part of the big picture. It's part of His plan.

He is always faithful to complete that which He starts.

My biggest realization that she has had significant progress occurred a couple weeks ago.  We have been using a medicated lotion for Ellie's eczema and persistent skin staph.  The goal has been to avoid additional rounds of oral antibiotics, so I began lathering her with something I would normally avoid.  It has worked fantastic, and we have slowly decreased how much we use it. On the surface this sounds like it is not a big deal, except this lotion has three things that would have sent Ellie into a standard FPIES episode 16 months ago (complete with respiratory response and vomiting).  Let me try and put it into perspective:

The lotion has lactic acid (from milk), and propylene glycol monocaprylat (propylene glycol can be derived from corn) as ingredients.  These are two of her biggest FPIES triggers.  I now know that with immune system dysfunction it really doesn't matter what things are derived from.  The body has the potential to react to anything, be it food, environment, chemical or natural.  In fact, there is even more chance that the body will respond negatively to chemicals because they are toxins and must be detoxed through the body, and with leaky gut the body's natural detoxification system is broken.  This was Ellie. There is not an ingredient in this lotion that should not send Ellie into a profuse vomiting and pooping state of affairs.  But instead this lotion has made her skin better.  (Please note that this lotion is still not perfect and we are happy to use it less and less as the ingredients tax her detoxification process, but it is a million times better than multiple rounds of oral antibiotics.  We use it only when our natural options are not working)

 
Here are some of the other ways we have seen Ellie's healing in the last couple of weeks:

We no longer need to seed her zucchini.  She tolerates the seeds fine.  We do still peel it though because the skin holds oxalates that are harder on a newly healing body.

She is eating all grey, green, white, etc. colored summer squash without problems.  Still squash, but still amazing.

She is also eating fermented red cabbage juice, fermented summer squash juice, and fermented coconut
water.  These provide her with amazing benefits.

Things that have changed in our home and no longer bring FPIES reactions (or panic):

When I wasn't looking she stuck her finger in the (GAPS friendly) pancake batter and stuck it in her mouth.

She picked up a package of Pink Popcorn at the zoo and carried it around before putting it back.

We used a very very small amount of NON-compounded topical medication on her staph skin bumps.

She crawls around on our kitchen floor when I have not swept for a week, and I don't have to brush all crumbs off of her skin immediately.  OK, so I don't have to keep the floor swept by the hour!

She helps cook foods she cannot eat.

She uses markers, crayons and stickers without incident.

Ellie is sleeping better, eating less at night, poops more regularly, and has less constipation

Her belly is flatter.

She recognizes when she is hungry and when she is full.  She has said 'I ate too much; my belly hurts', an ability she did not have 12 months ago. 

We are gearing up to move forward in GAPS.  We are ready to leave the desert.  We are ready to test what we think we are hearing - it is time.  And I am ready to bust at the seams with anticipation. Stay tuned!

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.

Lip-Tie

Last Friday we loaded up the girls and headed to (city removed)* for a much anticipated, long sought dentist appointment.  We were not disappointed.  The office of (dentist name removed)* was fantastic with it's fresh flowers and beautiful decor.  His lovely receptionist/scheduler met us with a kid friendly grin. She happens to be a licensed O.T. which I find to be a complete score for the dentist.  And the visit started with Ellie's first non-house pee-pee on the potty, so we were off to a good start. 

Big Sister was the first to be examined.  (Dentist) took a look and announced her tongue looked great - no posterior tongue tie! Hooray!  However further examination showed that she has a severe lip tie (from his description I am guessing it is a class 4), and a very high, misshapen palate. He believes the palate issue is affecting her sinuses, breathing, sleeping, and swallowing.  It has created a cross bite making it hard for her to chew, and he said sometimes it can even effect the tonsils.  He said the lip tie will be easy to fix with the laser, and then very kindly explained that the palate issue was due to her mouth muscles.  The summary:  confirmation of my mommy fear. My listening to her initial pediatrician about how tongue ties are no big deal resulted in her mouth not growing right.  My solace was someone finally validating what I see when I look in her mouth - a palate that could hold one of those round, rubber, bouncy balls from a vending machine.  It only took 6 years. She will need an orthodontic spacer retainer for the roof of her mouth, and she needs it now to avoid further complications or surgery in the future.  When I asked how long she would have to wear it, he said he was sorry she would have to wear it from 4-6 months.  4-6 months? Piece of cake! After 6 years of worry and knowing something was wrong, I am certain 4-6 months will be nothing.  Unlike Ellie, Big Sister has gone through extensive speech and feeding therapy yet no one ever diagnosed her lip tie and palate issue (insert giant exasperated SIGH here). This is the first time we have had answers and a solution. This makes me ecstatic.

Next up was Ellie.  Following Big Sister's brave lead she climbed up into the exam chair without coercion.  Getting her to open her mouth was a whole other issue.  She insisted on clenching and baring her front teeth each time he asked to see them, and no matter how many times I explained 'say ah' she did not open her mouth.  I finally was able to pry her teeth apart so that he could take a general look and count. And then I carefully lifted her front lip so he could see the tie - to which he said, 'hers is actually worse'.  Wow!  Big Sister's class 4 already extends into her palate, so what does that mean for Ellie's? A worse class 4, I guess.  He said her tongue appeared o.k., but was unable to see into the rest of her mouth, so he will complete her exam when we come back for the laser surgery.

The surgeries are important.  In addition to speech and feeding issues, both girls would have a gap in their front teeth that is never able to close due to the muscle in the way.  I only wish we could have discovered the need and gotten the treatment sooner.  I was thrilled to hear that (dentist)'s office focuses on providing education about the treatment of tongue and lip ties to the local agencies that work with infants.  There is a huge gap in knowledge regarding feeding issue and GI symptoms in infants.  If you have not had a chance to investigate Dr. Kotlow's work, it is quite remarkable.  His paper titled "Infant Reflux and Aerophagia Associated with the Maxillary Lip-tie and Ankyloglossia (Tongue-tie)" took my breath away and then reduced me to tears when I found it.  Not every FPIES child, or GAPS kid, or child with GI issue has a tongue or lip tie; but I was horrified to discover the number of them that do.  There may be some medical and nutritional reasons for that, which should be reserved for another post. 

We head back mid-July for two lip-tie surgeries and a retainer fitting. Details to be worked out include the oral sedative for both girls.  I am hoping to get it compounded for both, but forgot to write down the name of it.  One of my absolute favorite things about (dentist) is that he is a doctor who is still learning.  What a gem to find!  When we called to make our appointment he did not have the ability to give a sedative of any kind to a pediatric patient.  Because of the need for my girls, and my friends infant and toddler who also saw him recently, (dentist) sought out a solution.  By the time we arrived for our consultation he had an answer for us, knowing and recognizing Ellie's limitations.  Can you see my grin? I'm a happy mamma!

*name and city of this dentist have been removed after the writing of this post. procedures did not go well (see this post) and while this dentist was not spiteful or intentionally harmful in any way, I do not wish anyone finding this blog to feel we are referring to him for a pediatric patient.

Toxic Dump

Ellie's body has continued to have problems detoxing properly.  This is a classic GAPS issue, but of course Ellie has to take everything to the extreme.  She was clearly detoxing when we first put her on GAPS, yet she has since stopped showing visible signs.  Not detoxing holds up her healing.  Because she has a broken detoxification system her body does not get rid of normal everyday toxins, and has also built up a reserve of them that must be flushed.  We have been giving her topical glutathione, an enzyme the liver needs to push toxins out and help the body heal.  Even with the enzyme her urine has been clear and without smell, her eczema continues to be a problem (toxins coming through the skin), and yeast flares with every change we make.

It has been a long haul to try and figure out what is exactly keeping her body from dumping toxins, and I have learned some interesting things along the way.  I am always amazed at the body, and I learned about even more ways that it is designed to self-protect - by 'hiding' toxic metals in various places of the body and using yeast to protect the body from mercury.  Fluoride is a poison, and once I realized our house water filtration system was not removing fluoride and heavy metals I was certain this was the key to Ellie's detox problem.  Fluoride is stored in the thyroid, and the thyroid is extremely important in making hormones and enzymes.

I had to wait for us to have the money to purchase the filter we needed, which gave me the time to deal with my anger at the institutions I pay which decided to ADD the fluoride to our water to begin with (costing me money and making us sick).  We purchased the filter and installed it in mid-May, and began cleaning out the freezer of frozen broth made with fluoridated water. 

Sure enough, within a day or so Ellie began detoxing fluoride. The result was borderline fascinating to watch.  Her urine became cloudy white and the stench was horrid.  If you have ever been around an indoor chlorinated pool or spa, and are familiar with that breath-taking chlorine gas smell in the air, this was very similar.  She would go to the bathroom and use her little potty, and I would have to hold my breath or cover my face to go in behind her and empty the bowl.  Her breath changed as well, and her eczema changed in appearance. Somewhere around this time her skin bacteria made a change from primarily fungal to staph, which we have been working to keep at bay ever since.  I can't remember exactly when that change started.

The major detoxification symptoms lasted a week or so, and have since mellowed.  As long as we keep her on the glutathione, her urine smells and has some color and we have signs that her body is detoxing.  The significance? More healing!

Chew

Ellie began refusing food and being fed at about 10 months old.  She has not taken a spoon ever since. A combination of associating food with pain, never allowing her to put things in her mouth for normal development milestones, not being able to eat food, and an entire list of other factors have created a toddler who is almost 3 and still on the bottle ... or so we thought until recently.

Specialist appointments and two feeding evaluations have left doctors saying her delays are not physical, but are entirely developmental.  They all agree she needs intense therapy and now has full body hypersensitivity.  We were introduced to body brushing and the importance of desensitizing the mouth.  The toothbrush introduction went semi-o.k.; the body brushing was way too much for her to handle.  Instead we use our hands to put pressure on various areas of her body and help bring awareness to things other than her mouth and butt.  We especially use this when she gets a bump or bruise because her sense of pain is completely exaggerated.  One skinned knee brings hysterics, and I quickly learned that if I grab her and begin applying pressure to other areas of her body she has an easier ability to calm down.

About 4 months ago I was attempting to 'brush' Ellie's teeth when I discovered what appears to be a class 3 (perhaps a class 4) lip tie.  I soon learned there are lip ties, anterior tongue ties, and posterior tongue ties. Having one increases the risk of having another, so I want to be sure she is examined for all three.  Research has also shown that there are only a handful of doctors in the country who are trained to diagnose and treat posterior tongue tie.

Big Sister was born with a class 1 tongue tie, and it is one of the biggest mommy regrets I have.  I listened to the pediatrician who said 'oh tongue ties are over diagnosed - she will be fine', and the result has been speech and feeding issues.  It took months of fighting to get her a frenulectomy at three years old.  It could have been a no risk office procedure when she was an infant.  She has gone through feeding and speech therapy, and at 6 years old she still has trouble swallowing and speaking.  There is a chance she has an untreated posterior tongue tie.  NOW I know that tongue and lip ties are most likely completely underdiagnosed.

For 4 months I have searched for someone to examine both girls, as well as fix the problem.   Finding a doctor, oral surgeon, or dentist who is trained in posterior tongue tie, uses a laser, and also does pediatric sedation, is almost an impossibility. The Intenational Affiliates of Tongue Tie Professions, founded and led by Dr. Kotlow of NY, has given me help on the search; yet everyone I called was either unable to treat the posterior tongue tie, did not do pediatric sedation, or could not do a lip tie this severe.  We are applying for Ellie to be seen at the local Shriner's for her spine and mouth, but this is of no help to Big Sister. I began to think I would have to fly them both to New York.

A friend looking for her own kids led us to a pediatric dentist 2 hours away.  He does not do pediatric sedation, but is experienced in posterior tongue tie and considered an excellent laser dentist by Dr. Kotlow. Not covered by insurance, an evaluation will cost me $75 per kid.  Tomorrow morning we get up extremely early to make the 2 hour drive to Sonoma, and I think this will be $150 well spent. And I believe Ellie is ready.

On the final day of Team Ellie, I was witness to one of the biggest miracles I had seen in some time.  At Ellie's last O.T. evaluation it was strongly suggested that we feed her meatballs.  Meatballs she can feed herself, are safe, and provide new texture.  After at least 6 months of trying to bribe, beg, and manipulate her to eat a meatball, on May 10 she asked for one, put it in her mouth, and spent 45 minutes carrying around, sucking on, and attempting to bite pieces off of meatballs.  I was floored.  She has slowly progressed from that day, and now she will willingly feed herself soup and participate in dinner. I can no longer let her carry around food that she is not ready for, because she may take a bite!

It is not in the plan for either girls to receive surgery tomorrow morning, but I am anxious for the information an evaluation will give us.  Big Sister needs to eat without gagging, and Ellie needs to learn how to chew.  It's not often I am excited about a doctors visit!

Not My Idol

I grew up in the church.  Having had my fair share of mission, ministry and overall church experience, I feel fairly well equipped to say that the Western Protestant church lacks in the area of addressing food.  In fact, most will quickly put up a defensive wall regarding all things food, and limit its spiritual implications to food laws being old testament, and 'all things in moderation' justifying most everything else. When we ventured down the eye-opening path of Ellie's healing, I found myself ill-equipped to manage the balance between trusting in food and trusting in God.

There is no doubt in my mind that information on GAPS was divinely placed directly in my path.  It has opened doors once unimagined, and created a healing hope that was non-existent in Ellie's future. At the same time, I have often been reminded by other GAPS moms that it is God that does the healing.  During the 10 days of Team Ellie I felt compelled to be sure I had laid the burden of healing Ellie where it should be - at the foot of the cross, and that the food changes we have made in our home have not become an idol.

The real food world of bloggers has created some interesting dynamics.  Various food perspectives and experiences are thrown about, often condemning opposing views, and lately there seems to be a surge in accusations of food idolatry. Ironically, at the same time as I began my ten days dedicated to Ellie, a small group of Christian bloggers launched a real food attack, blogging about those who shamefully damn souls and stop spreading the love of Christ for the sake of maintaining self-righteous eating habits. As I read through their posts and a few others I found, I realized that there were indeed some points that held true.


In the last 15 months I have learned how incredibly important it is to remember that the God of the universe does not operate bound to the laws of the universe - He did create them, after all.  He can heal (or not heal) whenever, wherever, and however He chooses that will most effectively glorify Him.  In addition, one quick read through the Bible will confirm that food is much more spiritual than any mainstream Westerner would like to admit. Eating, fasting, and hunger are referenced throughout both Old Testament and New to illustrate the power of God.  To ignore these references is to ignore the spiritual implication of food.

Ironically, one lesson that was difficult for me to learn was that while it is inappropriate to preach food over the love, mercy and grace of God, I don't have to sacrifice the well-being of my children because other people feel uncomfortable.  I will not tell my child that there are certain times it is acceptable to eat something harmful, any more than I will tell them there are times it is acceptable to lie, cheat, or steal.  We do the best that we can, and we often fall short in all areas (fast food anyone?) which is where we rely on the incredible grace of the cross.  Our God is not a God of grey; He is a God of black and white.  That being said, there are times as an adult we are called to ministry and asked to sacrifice our bodies knowing that God has asked us to trust Him.  This may be realized through surviving without running water, living in a hostile war torn territory, or sharing a potentially harmful meal, just to name a few.

Yet thanks to FPIES, the focus in our home has been food for so long, I still wondered how that was manifesting spiritually. Long gone are the days of carved images representing fertility or rain or good crops.  Generally speaking, mainstream America recognizes idols as statues of wood or stone; yet it is possible to make an idol out of anything, and food is no exception.  I took this to the Lord, and I asked Him to show me: had I made food an idol in our home?

What I found was one of those rare times that I received reassurance instead of reprimand. I was reminded of the path He orchestrated for Ellie, leading us to GAPS, and showing us the proof - she is getting better. I was reminded of the countless times I learned something new and amazing, and how every time without fail it brought me back to the feet of Jesus in an effort to express awe at His perfect creation. From the sun, to bacteria, to the basic functions of the body (poop!), science can only begin to see the tip of how we need the world as it was designed. That is not an idol; that is properly placed praise. Food is not an idol in our house.

For the first 18 months of Ellie's life I fought doctors and mainstream medicine for answers, and treatment protocols, and demanded the cure. I spent every day reading as many medical articles and studies as I could find, piecing together concepts in one spot with information in another.  I examined existing treatments and was devastated beyond belief when I was told 'we don't know'.  I clung to the hope that medicine would have an answer, and I scrounged through every medical journal I could find looking for it for 18 months. Trusting anything for knowledge, power or provision instead of God creates an idol. I had made medicine the idol.

James 5:14-16 instructs:  Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

The dietary changes we have made in our home are a reflection of our experiences and evidence seen in one amazing little girl.  We have watched a toxic little body rid itself of symptom after symptom with God-given, properly prepared, and healing real food. I believe the lessons learned are universal.  But we are all in different places in our journey and in different stages of healing - physically, emotionally, and spiritually. May only God get the glory every step of the way.

Matthew 5:13-14
You are the salt of the earth; but if the salt loses its flavor, how shall it be seasoned? It is then good for nothing but to be thrown out and trampled underfoot by men. You are the light of the world. A city that is set on a hill cannot be hidden. Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house.  Let your light so shine before men, that they may see your good works and glorify your Father in heaven.

May I always be salt and light.