I would like to say thank you to everyone who has been praying us through everything with Selah!!! I would also like to say PLEASE do not think that I am ignoring your wonderful suggestions! I know that everyone is well meaning...but...Selah's little body is just different, it views protein as an illness (along with multiple other things) and starts to "fight" when they are introduced to her. It fights so hard that her white blood count goes up, to about 22 (should be around 10), she begins to have pure water bowel movements full of mucus. The mucus shows that her intestines are irritated or inflamed and that she is not absorbing the nutrients from whatever just went through her. She can even go so far as throwing up to the point of dehydration at the introduction of a "trigger" food or substance.
Though this all may be new news to my friends and family we have been going through this from the time that Selah was born, just without a name to go with it! It is as if I am part way down the road looking back now with some understanding. She even lost weight last summer when foods were introduced! We have had to get up at least twice a night every night to feed her extra bottles because everything would just run out of her causing her to loose weight and hydration. I have spent more hours then I can count with a syringe following her around the house squirting 5mls at a time into her little mouth trying to avoid a hospital stay. We have sat on the phone with Dr after Dr for hours on end! This is not new to us! We "lost" our "proactive" approach to her hydration the beginning of March and that started this snowball effect coming to the possible diagnosis of FPIES.
We have tried the probiotics, prebiotics, slippery elm, pure organic fruits, veggies, meats, and grains, one dear friend even BROUGHT be ALL the ingredients to make my own pedialyte!!!! The problem with all this is that they all have caused "FPIES reactions". She cannot tolerate (at this time) ANYTHING natural :(. Such as her reaction to the orange pedialyte the other day...I should have put in the post that she drank maybe half an ounce in the am! not even very much at all!!!!!! Her reaction started around lunch time, classic of FPIES to start hours later, and continues still today in her stool.
I am in NO WAY an expert on this subject and it does not make ANY sense to me how a child can be "allergic" to pretty much all food. It still is shocking that if she gets ONE piece of rice just IN her mouth I KNOW that she will have water for poop later in the day!!!!
BUT PEOPLE! I rest in the knowledge that God can use ALL THINGS for good! I believe that we have sin in this world and that God may NOT heal her. I know that this may be tough for some to understand but God uses people such as Selah to touch SO MANY lives for his kingdom!!! I only want her to be healed if that is Gods plan for her life!! YES the easy way would be for healing BUT would she appreciate life enough? Would we appreciate her enough? Would I have been able to share about my WONDERFULLY LOVING JESUS with SO MANY if not for her FPIES? I have met so many lovely people on this journey that I can not even say that I would change it if I could. I know that may sound cruel...SO many people have been SO giving of their time, abilities, and resources!!!!! I can NEVER thank them properly!!!
I have more fear, sadness, and worry for the "perfect" families who have very few reasons to talk to Jesus every minute of every day...I feel deeply for people whose biggest struggles are some of my greatest joys! Look not at your children as little inconveniences but as mini miracles that they are in this world with out the struggles that we all could face!