The fork in Selah's road...
We stood at a point in this FPIES road where we were to find out how "serious" it is and what we do next...turns out that Selah is blessed to walk the path that only 5% of children with FPIES will be able to walk. The allergist today explained that 95% of children with FPIES have reactions to 3-5 foods, now remember that may not sound tough but if soy is a trigger it is in SO MUCH same as milk or wheat so this comes with MANY challenges!!!! Then there are 5% of children with FPIES who have reactions to all foods...Selah is there. She believes that this group of children actually have something other then FPIES but currently there is not another diagnosis so they are under the FPIES umbrella...
What does this mean...Things Dr Brown said during the appointment...
"You will need to get used to the NG Tube...Selah will more then likely rely on it for years to come."
"I would not recommend a G Tube unless absolutely necessary, I have seen children be successful with NG Tubes for years."
"Please remember that the 5% never truly have safe foods...any food can become a trigger at any time"
...I asked her about food combinations and she said that we just never know, Selah may be fine with bananas and fine with blueberries but when eaten together may cause a reaction...
"It does not matter which foods you try because she will more then likely have a reaction some day to it"
"A food rotation may work but we have not seen success in other children like Selah."
"Selah should stay on the infant formula."
...SHE BLESSED US WITH 6 CANS!!!!!!!!!!!!!!!!!!!...
"When Selah hits school age you could switch to night feeds and remove the tube during the day so that she fits in better with her classmates."
"You have done a great job so far with her Mom so keep doing what you have been."
"Watch for dehydration and take her to the hospital if need be."
We were not given ANY sort of a road map for a 5% child...we were not provided a flashlight, or the promise of a light at the end of this tunnel...we were not even given hope of an easier path in the future...we were gently pushed to this side of the FPIES fork and told to try our best, take good, notes, and look to the hospital for hydration when needed.
No follow up appointment is needed because there is nothing that can be done. The Dr truly believes that 5-10 years down the road they will have a way to test for this but does not see a treatment option anytime in Selah's childhood.
These words sound SAD, HOPELESS, and HURTFUL...BUT I have to say that Dr Brown was so pleasant, loving, and praise filled!!! Selah LOVED her and allowed her to examine her (HUGE FOR SELAH). I feel obviously a little hesitant in my confidence of parenting Selah THOUGH truly truly blessed that God is allowing us as a family to walk a new path of need! I know for sure that I can not make it though one minute with out His help, His guidance, His peace!!!!
So I refuse to be knocked down by this!!! I refuse to allow Selah to be hindered in ANY WAY...SATAN CAN JUST LEAVE THE FASNACHT FAMILY ALONE ALREADY!!!!!!!!!!!! We love Jesus, Hate sin, and truly believe that all of this crap that we walk with daily is the best possible plan for our family!!! Some day when we arrive in Heaven that is were we will know healing!!!!
Please know I do ask daily for my children to be healed and daily I am told NO... absolutely NO. I have even done the awful thing of saying "why can I not have ONE child with out such a tough walk in life..." to which God QUICKLY reminds me of my precious Aurora!!!! Every time I talk to Jesus about taking away some of the burden He provides a friend to pray for me, a random meal, so small piece of comfort. He does not heal my children...at this point in their lives they need these struggles, they need this pain or they may not be the Jesus loving children I see in them! They talk to Jesus ALL DAY LONG!!!!! about EVERYTHING!!!! They understand hard things, hurt, disappointment, grace, mercy, and forgiveness!!!
I was reminded today by a dear friend of my about all the things that God has said YES to :)...such as, and yes I ACTUALLY asked for all these things...Lunch meat, brought by a friend about 20 mins after I asked...Candles, received a text that day from a friend cleaning out her closet...baby wash (saving $$ to get TRUTH), brought by a friend the very next morning!...formula, free from Drs...a garden, received a fb message almost INSTANTLY from a friend wanting to split a garden with me this summer!!!! So in all honestly Jesus says YES to hundreds of tiny needs I have along then never ending journey!!!!!
beauty from ashes...even covered in ashes from head to toe as long as we can believe in the promise of the beauty there is reason to take the next step!