On the night of February 10, 2011, I held a dying child in my arms.
Her weight had plummeted, she was dehydrated, and her elemental formula had failed her. I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear.
We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error
We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'
We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her
Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet. Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby. And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'. Her body was tired and worn out from fighting.
We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time. And on the night of February 10, 2011, I was certain she may not make it until morning.
Fear. I could never explain the fear.
I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.
The actual dates are muddy since email dates do not match blog post dates; I certainly was not focused on taking notes. I had already purchased the GAPS book and had skimmed it. My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research. I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask. There are a lot of things I should have done....differently. And a lot of things I did not understand. But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.
It was hard work. And it was petrifying.
Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing. Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.
Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear: You can heal your daughter.
One year ago tomorrow, someone I had never met saved her life.
And I vowed I would not be quiet about it.
GAPS heals autoimmune disease. Period. It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.
Need hope?
I am in tears reading this. I am so very glad that you found GAPS and that you are healing her. Hope is indeed an amazing thing. Thank you for taking the time to share this.
ReplyDeleteThanks Patty :) I am also SO very glad! And thankful for your path ahead of us. You help keep me truckin forward!
DeleteThat last paragraph will be quoted again and again! You and Ellie are an amazing inspiration!
ReplyDeletelol thanks Friend. You are a pretty amazing mama yourself. And I lucked out that you are nearby ;)
DeleteI am with Paul when he says, "I thank God everytime I remember you..."
ReplyDeleteI cannot imagine having had the courage to do this start this had God not brought our brains together! I know that it would have been painfully difficult and overwhelming without your support over the last year.
I cannot even believe it has been a year!!! I knew it was coming, but honestly I was hoping to be a lot further along by now. BUT that is just my impatience speaking. ;)
That one thing Dr. Natasha said has always been the bottom line right...to help us push past the fear...HOPE.
HOPE!!!
What a year, eh? But I think my heart is finally at peace with the waiting, knowing what the end result will be - healing! Let's just keep reminding eachother ok?
Deleteon my to do list!!!
DeleteI will never forget spending the weekend with you guys when you had just started Ellie on broth and the difference even I could see when she had a couple bottles with no formula in it. What a transformation! What a testimony to your steadfast faith and the grace of God. Keep running the good race, my friend!
ReplyDeleteahhh Julie! You are my unbiased witness :) How can I ever thank you for your encouragement? I know....over a glass of wine. SOON!
DeleteAmazing! Along the way, sharing your story, you have given many others hope. I reached out to you exactly at the time, when Ellie was so sick, and I didn't realize it, but yet you encouraged me and you always gave freely the knowledge you obtained. I too am with Paul and Nicole "I thank God everytime I remember you" Thank you for sharing your HOPE!!
ReplyDeletejoce
I giggled when I saw your comment on PAN's blog from last year. Hang in there mama. You are doing it...one step at a time!
DeleteHi Nichole You are one awesome Mumma, I saw a private message from you on the FPIES board re.mutaflor, I replied but I dont know if you got it, we love Mutaflor, if you want any more details just Email me sunsea1@bigpond.com
ReplyDeleteLove Suna and Mitchy in OZ XXXxxx
Hi Suna! thanks for the note. I totally missed you on BBC. I will send you an email.
DeleteHappy Anniversary! Has it really been a year??! Love following Ellie's progress and healing and your growth in the face of adversity...thanks for keeping us informed on this journey.
ReplyDeleteThanks Joy! :) how do you do it? I have no idea how you keep up with everyone else in the middle of how busy you are with Sam and your boys. And yes..a YEAR! crazy!
DeleteWhat gaps book did you purchase and where do I buy it? I think it's time I started our healing process.
ReplyDelete