Monday, March 25, 2013

The privilege of the challenge...

Our normal is about to be redefined again...this is one of the last "tube free" photos of my precious little Selah that there will be for the next 6-8 months. Unless she takes it out more often then expected. At some point today I will watch as the nurses hold her down and insert a tube threw her nose into her stomach. Our new schedule Will be something along the lines of 5 feedings, first mix a bottle and offer it to Selah give her 20 mins to try to drink it, whatever is not taken orally will be tube fed. I will be taught how to insert the tube myself and how to prepare, measure, and give her food. The allergist that we saw today wants her food free for the next YEAR...needless to say I am getting another opinion, we will be trying to schedule with Dr Brown at CHOP who knows a ton about FPIES (even the pediatrician today said to talk to this Dr to get a better plan!). GI is not in agreement with the feeding tube but the fear with out it is that we will be spending a ton more time in the hospital hooked up to an iv and the feeding tube will prevent that.

This is NOT a worst case senecio, I can think of a lot worse situations that parents and children have had to endure! This honestly isn't my fist choice but please know that I believe this is not Gods back up plan for Selah, I fully believe that this is part of her journey that only God can use for GOOD! I believe that this sweet little lady has already touched so many people here at CHOP! Everyone loves hearing about her big sister in Ethiopia! And are impressed with all of her "skills" LOL, she has made  everyone who has met her smile, and we all know how much a smile can change our day!!!

So in conclusion, I refuse to allow this bump in Selahs journey create a mountain in mine! I will be her nurse/mommy/advocate for as many years as it takes! For anyone saying that this is just "not fair" I challenge you...for I truly believe that my children walking with challenges now will know how to make a huge impact later pulling from their paths! This food challenge is a privilege that God knew Selah and the Fasnacht family could and would handle!

Being asked to take on the challenges is our pleasure and we thank Jesus that He has asked so much of us!

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