Tuesday, January 31, 2012

Update on the Pot

Thank you, thank you friends!

We have had four offers to loan us pots, two dropped off for us to borrow, and some super sweet friends even offered to purchase us a new pot to meet our need.  In fact those super sweet friends have a SUPER cute daughter.

We are humbled and very grateful.  And Cynthia, I will send your pot home with some soup!

Monday, January 30, 2012


Not the kind you are thinking of I am guessing. :)

Friends...we are currently down to one lidded stock pot in the house due to a glass lid accident, and need at least two to keep enough of Ellie's food going.  We are unable to fund purchasing one at this time.

If you have a large stock pot with a lid that you are not using and wouldn't mind if we borrowed it for a short time, would you send me an email a.s.a.p.?

It would truly be a life saver.

If you don't, would you take a minute to say a prayer for our need? 

Thanks, Friends. 

Saturday, January 21, 2012

Lovely Bunch of Coconuts

Surprise! We are still giving Ellie coconut oil.

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

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

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

Thursday, January 19, 2012

Rock Star

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

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

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

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

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

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

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

hold on.

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

What made it amazing? Here are some brief highlights:

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

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

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

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

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

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

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

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

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

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

And I cried.

Sunday, January 15, 2012


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


That one is still hard to even write.

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

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

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

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

But He has never said: I will heal her.

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

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

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

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


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

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

Tuesday, January 10, 2012

Welcome to Middle Earth

Ellie's detox went from manageable to critical within 24 hours. When we increased her coconut oil from 1/2 teaspoon a day to 3/4 teaspoon she suddenly manifested symptoms we have not seen since February of 2011, plus a few new ones.

We pulled coconut oil.


Last night she was wheezing and coughing, snotting and draining. And having trouble breathing. Today I skipped her dosage, and after a four hour nap with the humidifier going she woke up bouncing and practically her old self. That fast?!

I was left wandering around today wondering how in the world we would manage a little body that rids toxins via the sinuses and lungs.

Thinking and researching and cooking and sourcing. (yeah so what's new. nothing there.)

As I sought out new treatments for detox and possible medications, it has seemed a little bit.....surreal. Recommendations that include false unicorn root and activated charcoal leave me feeling like I am entering a new land....a land somewhere between the Shire and MacBeth. In fact, sourcing Ellie's food often feels like I am asking someone for dragon scale or eye of freakin' newt. But I am reminded of the grade school lesson that just because you don't understand something does not mean it is bad (or have cooties).

So coconut was not an FPIES fail. It was another sign of a toxic little body working hard to heal, and a mommy who just does not know enough.

While at the WAPF conference I had the amazing gift of getting more information about a doctor who is a couple hours drive away. Nine months ago I looked him up, and thought 'no way. I bet this guy recommends eye of newt'. Today I pulled up his contact information, and made a new patient appointment for Ellie, hoping that he would know how eye of newt works, what it helps with, and would maybe even write a prescription for it to help with the cost.

That is the GOOD thing about coconut. It finally helped me to say: I can't do this by myself anymore.

While I will forever be indebetd to Dr. Natasha for her continual emails of direction and hope, there is only so much an occasional email can provide from another continent. The top, numero uno, GAPS trained-MD-plus lives within a 2 hour drive of us. I think that might be more divine than coincidence. It's time to go see what he has to say about FPIES. Should I warn him we are coming?

Friday, January 6, 2012

More on Fungus and Coconut Oil

Did I forget to mention that coconut oil is anti-inflammatory and anti-fungal?

In her book Dr. Natasha talks about the over growth of body bacteria and how it has amazing potential to wreak havoc. She discusses sensory issues, like those we commonly associate with autism. I can't remember where I read it in her book or pieced it together, but the concept as it applies to Ellie is this:

Certain bacteria belong in your gut. When the body flora gets out of whack, it can travel up into your mouth and even into your sinuses. An example of this is thrush. This imbalance can cause foods to taste funny and even burn, change your sense of smell, etc.

One thing we always found to be bizarre with Ellie was her insistence on drinking her bottles super hot. HOT. Shortly after going GAPS, she started complaining it was too hot. And now she practically drinks her bottles cold...which is handy for travel.

After introducing the coconut oil she began to want her bottles warmer, and after this last increase she has jumped back to wanting them pretty darn hot again. Crazy stuff! The detox in her body is changing her senses and how she feels.

The other thing we are seeing with the increase of coconut oil is eye goop. Not a lot, but it's there, and enough to bug her and ask me to washcloth her face clean. We never saw this even when she was full blown FPIES. I don't even remember seeing it when she was on inhalers and nebulizers and wheezing from all the phlegm and gunk. I know other FPIES-GAPS mamas have mentioned it as a detox reaction with their kiddos, but this is the first time we have seen it. And tonight when I put her to bed she was a bit gunky in her sinuses, too. Gonna have to keep an 'eye' on it. Might be pushing too hard too fast.

Today was day 8, and day two of 2/3 teaspoons. The goal is one full teaspoon per day. We will see how she feels tomorrow.

Oh, Enema

One major part of the GAPS learning curve involves enemas. Oh yes. That's right. Enemas. As if we don't deal with poop enough in this house. Apparently in some holistic type granola-ee communities enemas are all the rave. And colonics. In our house we are 9 months into GAPS for Ellie and still getting used to the enema idea.

What is that you say? You really didn't want to read an Ellie Belly Update full of enema speak? Well picture me jumping out from behind a curtain and yelling ENEMA at you as loudly as I can. Did you jump? Were you frightened? yeah, you and me both. But here is the deal. We NEED to talk about it more. Poop in general. Because it comes out of our intestines which is the root of all our immune system. So in an effort to provide an update and perhaps even a little education, here is our enema-capade.

Enemas. They get toxins out faster. Period.

Before giving Ellie her first enema I was scared to death. I had read a bunch of Dr. Google on how enemas are bad and can be addictive and damaging and blah blah. Ok YES. If you dont do it right. So please for the love of everything FPIES, be sure that you have information on how to do it right. (email me for resources on that if you are interested, but please don't go buy a standard enema in the store and use it- otherwise check your GAPS book for more info)

Ellie hates anything near her butt, and can you blame the girl? For the first 18 months + of her life anything that came out burned her skin into blisters. (side note: anything in your body can show up in your urine, so major hints on toxicity there)

We are well into the introduction of coconut oil. She is up to 3/4 teaspoons of raw, unrefined coconut oil per day. In addition she gets a full rub down morning and night, with occasional touch ups during the day. When we increased her from 1/2 tsp to 3/4 tsp oil...she didn't poop. I let her go one full day, and the next morning her eczema had increased to be full body, and very painful. It was also not the typical rashy eczema she gets. This time it was cyst like, bumps under the skin that seemed fluid filled.

So yesterday she was not feeling very well. By evening she still had no pooped, and luckily during a phone chat with another FPIES mom the light bulb finally turned on - she hadn't pooped! Crap! (harhar) She was detoxing and not getting it out the fastest and correct way via her colon, so her skin was doing the work. ugh. Detoxing through the skin is painful and nooo fun.

So last night we enema'd her. Twice. It took one kids enema and then one adult enema to get her to go. And the girl never cried. In fact when I said 'ok Ellie we have to tickle your belly again because you didn't go poopoo' the girl clapped and yelled 'yaaaay!' (At that point I gave my husband a very puzzled look.)

Enema-capade complete. Detox bath of epsom salts. Rub down of coconut oil. Off to bed.

This morning I was stunned at the improvement in her skin. We are talking dramatic. Most of it is localized back to her legs now where she has her trouble spots.

Bye bye toxins! Hello healing! Oh enema, you saved the day!