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!