Tuesday, May 1, 2012

The Never Ending Story

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

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

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

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

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

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

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

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

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

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