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

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.