The role of diet

Fingers raw and eyes weary from endless research to discover how we can help our little one feel well, gain weight, reduce inflamation, eliminate ulcers, absorb nutrients, grow, develop, reach milestones.  Today she still has her NG tube.  She consumes 900 ml/900 kcalories of Elecare per 24 hour period.  I am starting to introduce broths again, with the intention of transitioning her fully to the GAPS diet (http://www.gapsdiet.com/).  So many people are healing and sealing their guts using this diet, and are achieving remission (dare we call it a "cure?") for decades.  We have an appointment tomorrow to see Dr. Cowan in S.F., a doc recommended by our acupuncturist and a friend of a friend (whose son has been grappling with a "failure to thrive").  He is well-versed in the GAPS diet and is known to integrate treatments from various traditions.  I look forward to his input and an introduction to a new pathway to health for Ayla.

A few days back I found myself sobbing on the phone to a social worker we've been working with, and through our conversation I'd realized that I had stopped exploring options to heal our little girl.  I got tired.  On one hand, seeking various forms of treatment is incredibly empowering, especially when it appears that one is getting results.  On the other hand, it's exhausting and costly, and prevents us from snuggling up to that cozy state of denial when she's doing well.  But then, as the pattern goes, she gets sick again, and we're funneled into the hospital, where she needs IV fluids just to get her back to functioning, and then a blood transfusion because she's so anemic, and then an NG tube because she won't consume the calories necessary to function or grow, and the labs to ensure she doesn't have a serious infection before she gets her next Remicade infusion.  Really?@#!!!  I continue to be baffled by all of this.  For the last couple weeks she's been feeling quite good.  For the last few days she's been stellar.  If it wasn't for her NG tube, nobody would be the wiser.  So today I began implementing the GAPS introduction diet.  And tomorrow we see Dr. Cowan.  On to the next chapter.......

Daddy and Ayla (with NG tube....still out and about)

Jonah still having a blast!  LOVE it!!!