Bites

We have bites! 

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

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

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

Onward Once More

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

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

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

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

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

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

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

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

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

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

photo credit: ayblazerman

Retracing

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

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

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

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

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

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

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

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

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

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

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

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

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


photo credit 1: WilsonB  photo credit 2: telepathicparanoia

Top Post of 2012

My top post of 2012.....

is on enemas! 

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

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

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

Onward with 2013! Bring on the hope!

In health,
Nichole

Speech, Feeding, and Occupational Therapy

Ellie received her first feeding evaluation when she was around a year old.  She began refusing a spoon at 10 months of age, and had several other sensory and milestone issues by 12 months. Since we were also in the limited foods, and FPIES what-should-we-feed-now guessing game, the feeding evaluation seemed to go nicely with the nutritionist recommendations. We had a great evaluation and she recommended follow up, but insurance didn't pay.  She had given me several things to work on and it took months to come close to conquering those, so I had no desire to go back for more of the same. 

Her second feeding evaluation came around the time she turned 2.  This evaluation was focused a lot more on her increased sensory processing issues, and what the therapist called being 'hyper aware'.  Ellie still had lock jaw and would not let me feed her a spoon or brush her teeth at this point.  Of course she was still on primarily broth at the time, so I think we became a feeding therapist worst nightmare.  Instead of suggesting foods, she focused on introducing us to skin brushing to help Ellie begin to process exterior input a little better.  Insurance didn't cover this either so we did not go back.  At home Ellie did not tolerate the skin brushing at all, and some very knowledgeable friends suggested trying pressure therapy so I did.  This worked for quite a while, especially during her sensory melt downs.  

We have better insurance now, and so I asked for Ellie to be referred for evaluation again.  Her neurologist felt she needed to begin with an extensive neuro-psych evaluation to eliminate Autism first (whatever?!).  I figured that would get us in the door to finding an appropriate therapy team for Ellie. So we went. Four hours later and a team of doctors and interns staring at us through a one way glass, we were told she does not have Autism (duh), and that she is on par for an average preschooler. In fact the doctor said it was quite remarkable the growth and adjustment that had been made in the last 12-18 months, to which I gladly explained was due to her change in treatment (we started GAPS).  We were then referred for speech evaluation, feeding evaluation, and occupational therapy evaluation, and told she appeared neuro-typical aside from controlled, food-induced seizures.

In addition to still being on a bottle, Ellie has been hugely attached to the pacifier (which we call a soother and she calls a soo-soo).  We told her that she could get a prize when she threw them all in the garbage. The conversation went something like this:  


Me:  Big girls don't have soo-soos.  
Ellie: I not big girl. I Ellie.
Me:  Are you a baby? You are not a baby! Baby's have soo-soos.
Ellie: I not a baby. I Ellie.

bear, soo-soo, blanket

So I figured we would be toting that stubborn girl's pacifiers around until she went to college. Alas, on the one day of the year I said I would never leave the house (Black Friday) Ellie walked over to the garbage, tossed them all in, looked at me, and said "What my prize?" Off to the store we went for her heart's desire - a stuffed tiger like her sisters.  It made this mommy sad that she simultaneously gave up her bear, which she has used for sensory soothing since she was an infant. Bear, soo-soo, and blanket were the must have trio for sleeping, and woe were we if we went out and left any of them at home.  She is hanging on to the blanket still, occasionally asks for a pacifier, but poor bear doesn't even get a glance.  Sad, sad day.

Last week we headed off for her fourth feeding evaluation, and arrived to find we were working with a speech therapist. Hmm.  I went with it.  She was very warm and put a lot of effort and energy into helping it be a productive appointment.  She had reviewed Ellie's super thick file and was more aware than most of the doctors we have encountered.  I did not have to go through her medical history much at all, which was incredible.  In fact, I think I might fill out one of those nice 'star reports' that they have in the office the next time we go in.  She admitted she did not have many specific foods to suggest, but gave me great ideas instead.  She suggested dipping activities, and to not focus on Ellie actually eating but to just get her to the table by making it desirable and fun.  My biggest hang up was that all of her MD approved handouts recommended ridiculous things for therapy.  Cheez Whiz? Seriously? But Ellie warmed up to her nicely and we went home armed and ready to cut up pancakes with knives, and play basketball with toothpicks and meatballs.  This all seemed quite ridiculous to me, but within a couple days Ellie was asking to feed me and joining us more at the table.

chair outside drying....

She has also always sat in the same chair eating her bottle the same way for 2 years now. The house is filled with tragedy whenever the chair must be washed and temporarily unavailable.  Now she has been eating her bottle in various places around the house! 

Overall we are making progress. It seems like a crawl but we are still moving in a forward motion.  I have been convinced her lack of chewing is due to her lip tie, but a friend's daughter (same age, same diagnosis, same lip tie) just began chewing away, so I am no long so convinced.  My absolute biggest hope is that we can get some solids into her and that might trigger a full night sleep.  At this point in the game my body is dragging from waking up multiple times every night. Thank goodness Daddy helps with that!

The Hard Stuff

"(The) GAPS introduction diet requires patience and perseverance."

~Dr. Natasha Campbell-McBride, WAPF 2012 Annual Conference

One of the GAPS circles I am privileged to participate in has coined this phrase about "choosing your hard".  I mean, come on, GAPS is hard.  And putting your child on GAPS is really hard.

There are lots of reasons for this.  The transition to GAPS usually means a transition to a whole new world of information, and in reality, this sometimes leaves even the best of us sticking our fingers in our ears and yelling "I CAN'T HEAR YOU" at the top of our lungs.  Ignorance didn't involve all this learning.  In fact, sometimes I think my brain is actually smoking from this learning curve hike.

GAPS is hard.  The learning curve is hard.  All of the newness is just plain hard.

One of the absolute biggest changes occurs in how we relate in the doctor's office.  I mean, let's face it - most of us are not already visiting naturopaths or holistic physicians. If we were then our kiddos probably would have stood a better chance at not needing GAPS in the first place. And asking your pediatrician for nutritional advice is not usually the best thing.  Or your gastroenterologist for that matter.  That's why they all send us to nutritionists for dietary help. Remember that the Standard American Diet includes low salt, low fat, low animal protein, and high fiber recommendations.  The reason for this is a whole other post, but it does not exactly follow the food-as-medicine principles.  As a result we are left explaining (and often defending) why we have chosen a holistic approach in order to heal our child.  This can be difficult and scary.

Another hard adjustment that comes with 'going GAPS' is the social implications. Everywhere I go someone is trying to feed my children.  Lollipops, candy, granola bars, and maybe even fruit. I am not of the innocent.  I have done it.  My classroom days were spent bribing good attention with the toss of a Jolly Rancher.  Unfortunately we are producing sick and allergic kids much faster than the general public can switch to a 'don't feed the children' mentality.  The result is the parent running interference between child and food anytime they leave the house.  This is hard enough with a severely allergic child. Throw in a bottle of broth that looks like you are feeding your infant hot steaming coffee, and you are certain to catch some unwanted attention. Hard.

Once in the land of broth, kraut, and kefir, it is now not so easy to leave the house. Family schedules, routines, outings, and extra-curricular activities all must be re-evaluated for the ability to bring food, as well as the ability to make it.  A quick jaunt through the closest drive-through is not an option.  Not packing enough might mean hungry children and a feeling of mommy failure.  This one has personally caused me a lot of anxiety.

And let's not forget the mountains of broth pots, blenders, juicers, and greasy kitchen tools that need to be washed all.day.long.

Hard.  These things are all very hard. They require making adjustments that are not for the weak of heart. And most people know that.

"That must be so hard".  "I don't know how you do it."  "You must never sleep."  "How do you get all that done?"  I have heard it all from commiserating friends and well-meaning strangers.  And they are right. It's HARD.  I don't sleep much.  And I really don't know how we do it. We certainly don't get everything done. Ever.

I slept an average of 3 hours for two years.  I still get up multiple times every night. I rarely shop at the actual grocery store.  Our 'convenience' food is frozen vegetables.  We raised special chickens on a suburban lot.  We sold the house and moved. We have gone to living on one income.  We are incredibly financially stressed. And it is all.so.very.hard.

But wait. It is not that I am just looking to complain. And I most certainly am not encouraging you to NOT do GAPS.  It is just that in the last month or so I have begun to reflect on the differences between the hard that we choose, and the hard that we don't.  

We did not choose FPIES.  We absolutely did not choose the hard that started us on this path.

But most of the hard that we are now living is by choice. 

There is something that changed when we made the leap to GAPS.  Without even really realizing it, we went from running from doctor to doctor looking for answers, from researching and reading and waiting for someone else to tell us what to do, from feeling like every food I fed Ellie was a sick game of Russian Roulette, from begging insurance companies to pay for her crappy MSG laden chemical food, from tracking down every ingredient or sourced chemical in everything from canned baby food to laundry detergent, from all of that and more...to hope.  

When we started GAPS a transformation took place.  It was not that we had a mapped out plan.  We still had to do a lot of figuring out within the protocols of the diet.  But we were given permission to be the ones who know best for our daughter.  We were given the information, and the medical studies, and the case studies, and saw the proof right in our own home, that there is hope and a plan for healing. From the unknown and the scary suddenly came hope, direction and a chance to watch God reveal some of the amazing ways He designed our bodies.  And we were empowered once more to do what we feel is right for our children - to keep them safe, and to keep them healthy.  

THAT is the hard we have chosen, and with great privilege. 

Everyone chooses their hard.  GAPS is the hard we have chosen.  And it is indeed a hard choice. But the alternative? That is harder. SO much harder. 

Can you choose hope?

Guest Post: GNOWFGLINS

Wardee is one of my all time favorite real food resources.  She even has online classes for those of us who are entirely visual in our learning style (hello, ME!), and podcasts, and recipes, and fermenting book, and ebooks, and resources galore.  Today I am entirely and completely privileged to have a guest post on her blog! So jump on over to GNOWFGLINS to say hello, and be sure to check out her GAPS series.

And don't forget...have hope!

Overwhelming Gratefulness

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

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

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

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

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

Too Much

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

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

SO whatcha think?  Pretty darn amazing, eh?

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

     

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

Truckin'

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

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

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

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

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

Outgrow: an FPIES reflection

I'm a literalist. When it comes to the sharing of facts I find it completely frustrating when information is obscure, misleading, or not entirely clear.  For this reason, and many others, it did not take long on the FPIES journey for the phrase 'outgrow' to make it to the top of my list of pet peeve's.

Most do outgrow, will likely outgrow, might outgrow, probably wont outgrow, may never outgrow,...are all phrases I have heard, and phrases I loathe.  Why such passion for such things, you ask?  It's simple. What in the heck does 'outgrow' mean?  It's obscure.  It's misleading. It's unclear. And when dealing with a sick child, it is hope stealing.

Children outgrow the terrible twos, and they outgrow being afraid of the dark, and they outgrow the need to talk on the phone.  They don't outgrow barfing, or reflux, or diarrhea, or failure to thrive, or any other sign that something is wrong.

In less flattering times I have retorted sharply when an inquiring mind wanted to know if 'this is something she will grow out of'.  Well no, I have responded.  It won't just magically disappear, but we do hope she will heal beyond these limitations. oops.  Not my finest moments.

In less than complementary conversations, I have mentioned to medical professionals how irritating it is that there is no definition for what 'outgrow' truly means.  They throw it around as if it gives an answer, when it really says nothing.  They, of course, have had their various explanations of how sometimes the immune system or intestines or whatever just simply heals on it's own or grows past this struggle or matures to a certain place or begins to whatever.  Like a miracle? I wish I had asked.

I have my own definition:  doctors and society use the phrase 'outgrow' to mean something that may at some point in time stop and no one knows what, how, or why.

WELL....I'm a what, how and why kinda gal.  As in WHAT is going on medically, HOW did it get that way, and WHY did it change, go away, or stay the same.  It's kind of like how curiosity killed the cat.  I am certain this feature of my personality will be the death of me.

Indeed miracles happen and many of these situations may be just that - an unexplained miracle in the medical community.  But many times it is truly that they just don't know the reason or have not made the connections.  It makes me so sad that there is an abundance of information about immune system disease, and how they ALL can be healed or at least dramatically improved, yet the medical community in general continues to stay within their little boxes of no hope and outgrow.

These are not helpful explanations.  These are non-explanations.  And here is my response:

Never accept 'that is common' or 'they will outgrow it' as an explanation for your child being sick, hurting, or showing signs of distress.  

Ellie is now 3.  She has won the sickest kid award in just about every competition we have unwillingly entered. And today she is a marvel.  She is eating, she is thriving, and she is saying good bye to all of those symptoms that once puzzled even the best.  

She is not outgrowing FPIES. She is healing. And there is hope for even the most hopeless.  How do I know?  Because I am an expert. I was there.  I was one of those moms. At the very worst we heard 'expect her to at least be on only elemental formula well into her school aged years'.  

I thank Jesus every day that one doctor half way across the globe took the time to answer a very obnoxious and lengthy email from one desperate mommy of a dying child.  I thank my God every time I look at my girls and know what our new normal will do to create a legacy of hope for their future. And maybe someday their story will be common, and hope will be found for so many more. Until then...

"you teach, you teach, you teach!" Dr. Weston A. Price

On the Move

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

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

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

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

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

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

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

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

Did you catch that?  WAS.

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

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

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

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

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

Navigating Air Purifiers

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

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

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

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

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

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

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

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

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

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

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

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

Packing and Purging

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

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

At this point in time we are saving for:

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

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

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

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

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

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

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

Let the Eating Begin

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

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

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

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

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

What is next?

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

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

Eggs: A Labor of Love

Eggs.

Grain free eggs.

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

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

Eggs which Ellie is now eating!!!



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

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

No, Thanks.

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

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

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

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

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

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

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

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

Life Change

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

- Dr. Natasha Campbell-Mcbride, 

Gut and Psychology Syndrome, pg. 155

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

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

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

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

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

What I realized was this:

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

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

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

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

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

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

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

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

Post Procedure Confirmation

I didn't talk about the trip to the dentist for over a week. To anyone.  Daddy and I didn't even talk about it, and spent the week fighting nasty fights spurred by guilt and anxiety.

The revision site for Big Sis does not go between her teeth, and the muscle is still very obvious there.  I was worried that the surgery did not release enough of her lip, and that the surgery was incomplete.  The photos included in Dr. Kotlow's literature show revision between the teeth with severe lip tie.  How was I to find out if the surgery was complete or not?

Big Sis Before

Big Sis After

As for Ellie, obviously hers was not complete.  Now what?  Could I seriously take her anywhere except for someone who would put her under general anesthesia? We can't mess around. She will now need to see either Dr. James Jesse in L.A., or Dr. Kotlow in NY, but neither of them use general anesthesia.  We can NOT allow another event like this.  Will we ever get her into a dentist chair again?

Ellie Before

Ellie After

Over a week later I began to process things with a friend.  She suggested emailing Dr. Kotlow about the procedures, and ask him the questions directly.  Was Big Sis' procedure complete?  Would he recommend just doing a general anesthesia with Ellie considering her history and this experience?  So I did.  I sent the before and after pictures, along with a very brief email.  I purposefully left out the name of the dentist who we saw. I have no desire to bash him publically or appear as if that was my motive.  And at one point the receptionist had said she knew Dr. Kotlow personally, so I really did not want to bring that up.

The following morning my phone rang, and when I answered it I heard "Hello, this is Dr. Larry Kotlow in Albany, New York." Say WHAT? That caught me off guard. WOW!  We chatted. Actually, I mostly just listened.

Confirmed: Dr. Kotlow would have cut between her teeth and saved her the complication of additional orthodontics in the future.  Not all dentists do this.  He is not concerned about her lip which looks resolved; he is concerned about her teeth. She needs a palate spacer immediately.  It's not too late to go back and finish the procedure.

Confirmed:  The experience with Ellie was set up to fail.  She would have been in the chair for 90 seconds in his office.  He does not recommend nitrous oxide.  He does not recommend valium.  Obviously she still needs the procedure.

I can not explain how grateful I am for that phone call.  The top tongue and lip tie specialist in the world  took the time to call and answer my questions.  This confirmed his rock star status for us.  A doctor who cares about what he does.  Who takes the extra time out of his day incredibly busy day to phone a very upset mama.

Big Sis has recovered nicely.  She still has a little residual anxiety, but the revision site is almost entirely healed and thanks to some homeopathic remedies she had almost no swelling or pain.

Two weeks later and we still have one angry, angry little Ellie on our hands.  I prayed for three days that she would not turn inward like she normally does. On day three she started yelling. And screaming.  And hitting.  And yelling a lot more.  I have spent at least three times every day watching her escalate in frustration over anything or nothing.  Screaming which becomes banging her head, hitting herself, and then rocking her on my lap until her yelling stops and she cries.  And in the middle of it all God is gracious.  I have prayed for two weeks straight - I have begged - that she wouldn't refuse food other than her bottle and clamp her mouth shut permanently, and those prayers were answered.  Instead of regressing she has decided she wants to eat.  For the first time in her life she shows signs of understanding the difference between 'liquid' full and 'solid' full, and is asking to eat bites.  She is eating puree for the first time since she was 10 months old!

As for our next steps, we are looking for a functional orthopedic for Big Sis' palate spacer. And I have no idea how, but it looks like we may need to go to New York.

The Rest of the Story

("Botched" part two)

We arrived at the dental surgery appointments with nervous anxiety.  We had preconceived ideas of how things would go, and I comforted myself by reminding myself it would go quickly. They were ready to go when we got there.

Ellie went first.  I took her back to the room and placed her in the chair, and then ran out to the car to get the Valium bottle we had forgotten so that they could log it in her chart.  They covered her with a blanket to make her comfortable, which was my first major mistake.  I allowed that, which in retrospect was a major invasion on her little sensory issue body.  Fine for 99.9% of the population I am sure, but was not o.k. for Ellie.  Then again maybe not.  It seems a bit scary to me for any 3 year old to be put into a dentist chair and then covered with a blanket.  When I got back I was asked to wait out front and told it would be better if I was not in the room.  I figured since it was a fast procedure and I was not thrilled with the idea of watching, that would be o.k.

Time went on and she was not done. We were reassured several times that she was fine, not crying and just sitting in the chair. They were waiting for her to go to sleep. This bothered me tremendously, as we were told prior to coming that the goal was *not* for her to be asleep, just 'relaxed'.  Time ticked on.  We had an additional dosage of Valium left, because per doctors orders I had dosed her low.  We didn't know how much she would need.  They asked how I administered it and said they were going to give her the remaining dose.  Uhm...O.k.  I said I would get her water and they said, no worries we have ours.  I was not prepared for this.  I froze. And I totally regret allowing this.  FPIES complications allow for cross-contamination fears and I did not like the idea of them feeding her anything with anything.  Was the water filtered? Did they use a cup with wax? I decided that one time, small amount would be fine.  It did not occur to me until later that Ellie barely lets her daddy and I feed her anything.  Had she been scared that they had fed her? How did they get her to take it?

I also had not gone back to the room to check on her.  Every time I got up I was reassured everything was fine.  She wasn't that far away, and I didn't hear her crying.  I was told she was asleep, and then told she wasn't, and then told they were just waiting for her to go to sleep. And then told the dentist gave her nitrous oxide, and that he had checked and it was perfectly safe.  At this point I began to get angry, but felt totally and completely trapped. I desperately wanted this procedure done and successful, but had no information on laughing gas, was not told it was a possibility, and the idea that they found a document saying it was 'FPIES safe' was laughable alone. Those types of documents do.not.exist.  We were an hour in.  And at this point I did not go back to check on her; I took their word that she was o.k.  I regret it terribly.

At this point we were so far behind they said they were going to go ahead and get Big Sis situated and ready.  My anxiety and feeling of being overwhelmed because immeasurable. Two kids in separate chairs at the same time.  We went back with Big Sis to the room next to Ellie.  They also gave her a blanket, and another dose of Valium since she wasn't sleepy enough.  She was a trooper.  She had no fear and barely wanted us in the room.  Daddy said he was going to check on Ellie. I said I couldn't look or I would just go get her and the procedure will be done. And that's what I should have done. I should have gone and got her and called it quits then.  I thought I was doing the best thing by staying away because she would not go to sleep if I was there. She HAD to go to sleep for them to do the procedure.  She MUST have the procedure. We don't have the money to go to anyone else.

Daddy said he thought Ellie could hear us in the next room and she was stirring.  I told Big Sis to talk quieter and was horrified.  All three of us were next door where she could hears us, and she was alone and scared.  We backed to the wall between and I peeked in on Ellie.  She was not moving and I couldn't see her clearly.  She was being monitored but I couldn't stand it anymore and went in. Daddy followed close behind.

What I found will be etched in my mommy mind forever.  I have never, nor do I ever wish to see again, the look of fear that was on her face when we approached the table. I don't really remember what happened in what order for the next 45 minutes or hour.  She was wrapped in a heavy blanket, her body stiff as a board, her mouth clenched shut so that her jaw muscles were visible and her eyes huge.  She was not crying.  She was not moving.  I was worried about the medication so I checked for breathing. It was shallow but there. I asked her if she was breathing ok and she nodded a little.  She never opened her mouth.  She saw us but did not move, or even turn her head.   I stroked her forehead and said 'mommy is right here'.  Large crocodile tears rolled down her cheeks but she still did not cry or relax her jaw.  At some point we backed out of the room to try and get her to sleep. Somewhere in there we heard Big Sis start to cry and I went to comfort her. I had told Ellie I was right there and going to check on Big Sis.  As I walked away her lip began to quiver and more tears.  Big Sis was ok. Her fear and crying was from the shot of Novocaine.  It was impossible to be in both places at the same time. I heard Ellie call a cracked "mommy!"  Daddy stayed and kept an eye on Big Sis, and I hurried over to her.  She was sweating.  I pulled back the blanket and her arms were stiff and stuck to her side, her fists clenched.  She did not hold her comfort bear.  'Owie lip' she said.  That was from the novacaine shot.  It wasn't until the next day that I realized she was so afraid to open her mouth that she didn't cry, and she didn't call out for me.  That makes me want to vomit.

I picked her up and comforted her.  It took many minutes for her to relax and for her breathing to return to normal.  Maybe if I held her she would go to sleep and they could do the procedure?  No way.  It didn't take long for her to continually beg to leave to the other room.  I can't say I blame her.

Procedure done for Big Sis, and called quits for Ellie. Big Sis did great and he had to 'cut more than he had thought, and he could have cut more'.  We received instructions on how to care for the revision site.  For Ellie, we were told they had started and done one quick swipe with the laser but it was nothing to even check on.  It was nothing that needed cared for and even worth mentioning.  Later I discovered a milimeter of a revision site when it started to tear at home and bleed.  She would not let us near her mouth and I had not known.  I thought there was 'nothing', so I had not even given her motrin or homeopathics for pain.

By the time we left we were stuck in construction and traffic.  It took us over 4 hours to get home.  Maybe 5.  I cant remember.