Monday, April 27, 2015

Our Ups and Downs

Up and down.  Our minutes fly by like nanoseconds, weeks feel more like days.  Life speeds up more than anyone can tell you when you have a child; make that a plural word c  h  i  l  d  r  e  n   and the world looks back at you in warp speed. 
Our time with you has seemed to go extra fast.  Those moments with a newborn that make time stand still were few and far between, partly because you are our second blessing and partly because your belly wouldn't leave you in peace.  Either way I have felt a bit sad this past month, realizing I have been your momma for half of a year and it feels more akin to one blurry week. 
We have gotten to know the real you.  The one who lights up our world even more than before.  Your gentle and loving nature are humbling, and although your just 7 months old you have the ability to make us feel so loved.  You're genuinely excited to see us, thankful to be picked up or held and pleased as punch when we sing one of your favorite songs.  I want to soak up every sweet moment we are given with you. 

I have become admittedly paranoid.  Since we continue to play the "what's bothering your belly?" game, I second guess and question everything I put in and on our bodies.  The past few months have been a big learning process while we fumble our way through this thing called FPIES

What we've learned:  

Even the doctor's who diagnosed you don't know a whole lot about this crazy food intolerance.   Through conversations with other parents we have learned our allergist is wonderful, yet not really knowledgeable on FPIES.  Not awesome when she is the only recommended FPIES doctor in our state.    Our pediatrician told us "you should write a book when this is over", which kinda makes ya  feel like the lone ranger.  We traveled back to Cincinnati Children's to see another GI specialist two weeks ago.  We hoped for answers but left with another science experiment involving you.  At their suggestion we are starting food trials through breast milk.  I eat one new food for two weeks straight and watch your reaction.  We are to "push through" even if we see a change in behavior or blood in your stool only stopping if we get a vomit to shock type of reaction. 
S C A R Y sounding, no?  That little doctor's visit had me scared for only a second when I remembered "Have I not commanded you?  Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."  So back to bananas we went!  I can't even tell you how delightful and dreadful it was to eat the first one.  I may have missed these more than any other food.  They are a quick and filling snack, they are my substitute for eggs in many recipes, and the base for almost every smoothie!  I had experimented with a variety of ways to create a yummy peanut butter smoothie without banana and had settled on broccoli, so needless to say my palette was happy to have them back. 
 
Chiropractor's are for babies too.  While leary to try it out, taking you to a chiropractor has improved your overall happiness.  Focusing on the area of your spine that controls the digestive system the Dr. continues to correct your body, while helping you cope with any belly issues that arise.  The result has been awesome!  *(Warning poop discription ahead, read on at your own risk)  While your diapers have maintained a mucus/liquid consistency, with an acidic and pungent odor often with traces of blood, know one would know it because you're a seriously happy girl.  You light up a room with your darling smile and laid back disposition.  We delight in seeing this side of you and watching your little personality start to come out.  This age is so much fun and you are getting quite excited to explore the world around you.  

 There are varying levels of FPIES and you are a chronic reactor.  Meaning your GI tract is constantly showing us signs of a reaction to something, but what we are unsure.  Because you aren't vomiting until you go into a state of shock (THANK THE LORD) and are in the minority of the minority you sort of fly under the radar.  Falling under the "other 25% children will have more chronic symptoms, which resolve within 1 week after avoiding the food. (www.fpies.org)"  Meanwhile we feel like crazy people, constantly wondering what is making you have these chronic GI issues that can manifest into terrible explosive diapers and belly pains.  We live off knowing each day will be different, we run off little sleep and are fueled by smiles. 

Support is huge.  I have found a helpful group where parents from all over the world come together as they deal with their children's FPIES issues.  It has been so useful to hear their experiences and have their opinions on Mallie Lynn shared.  When we are told something by our doctors, or experience something at home and are in question I take it to the forum.  They have been my greatest source of information as we move forward and have given some great and invaluable information.  

Our goal is baseline.  In order for you to begin trying foods yourself we must first get you to baseline, which means a healed intestines and normal diapers / sleep reaction.  I have been on a limited diet for quite sometime and have continued to take more things out as I try to figure out what lingering food is bothering you.  Recently it was brought to my attention by my support group that environmental factors might be playing a role.  I had no idea that soy was in so many products touching our lives.  From shampoo, lotions, soap, and dish detergent soy could be found in it all.  So now I'm researching everything we put on our bodies (as if I didn't already before) and scrutinizing the ingredients, calling companies for clarification and looking up names I can't pronounce for further knowledge on what they mean.  I am hopeful that this is the game changer we need to help heal your belly for good. 

You are calm.  Though your first months of life were spent with quite a lot of crying and screaming, it is something we rarely see from you unless your really provoked to do so.  (aka you're hurting badly, super tired, or hungry)  You are a pretty chill little girl, who can entertain herself, loves to watch the world, and are eager to flash that gummy smile.  A beautiful, lovable, sweet as pie baby girl who is growing to fast for this mommy to handle.  We are so thankful for you, thankful for your health, your happiness, your growing mind and body, and that fuzzy hair atop that sweet head!


The first ever National FPIES Awareness day is coming up May 4th.  To help spread awareness their is a fun little challenge going on I encourage you to participate in.  Find out more information Here.    

2 comments:

  1. I am intrigued by her story...and I don't mean that in a "snide" way...I mean it in a totally sympathetic I-cannot-imagine-what-you-are-going-through way. I have never heard of FPIES. What little I know about digestion/allergy issues is that right after Ruby turned sixteen months old (she is now seventeen months old, so this is all very fresh) all of a sudden she started having the worst diarrhea ever. Water-y, mucous-y diarrhea that leaked through her diapers...even two diapers (I was desperate to do something to keep it from going everywhere) and went everywhere. We had to get a second carseat because the pads of one were always in the wash, and I had to get out to get my two older girls to school daily. She was pooping up to 15 times a day, even in her sleep...I would hear it, get up and change her (complete with her bed linens), lay her back down, and immediately she'd do it again sometimes never waking, bless her). We went through two stool sample checks...both revealing nothing. At one point I would have taken salmonella as a welcomed diagnosis all because we could have gotten medicine! They took her off of milk and put her on soy, no change. I called the doctor's office daily...most days I was squalling like a baby myself. Finally at day 23 I was DONE. I took matters into my own hands and turned to Dr. Google (I hesitate to do this because there is so much conflicting advice out there). I had no idea soy was in the top six (as well as milk) allergies of babies and toddlers. I went to the grocery store that night, stood in front of the dairy section, and literally prayed on the spot that the Lord would tell me what to buy, what to give her. I bought Lactaid milk that night, and the diarrhea stopped. STOPPED. Her poop IMMEDIATELY sent back to normal and we haven't had a drop of water-y, mucous-y diarrhea since. I feel almost guilty that our"fix" was so easy, and you're still going through what you are going through with your sweet girl. But I tell you that in hopes that there will be fix for her...and I will say that those 23 days of diarrhea seemed like an eternity. They were dark, almost crippling days...I felt so terrible for her I would just cry. She would poop, and just put her little head in her hands. It was so pitiful. I would clean up poop forever for her, but I knew SHE wasn't happy and comfortable, and that's what hurts. I will pray for you and for Mallie Lynn and for answers and for comfort.

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  2. You are such an amazing mama and you r all blessed to have each other. Blood in her stool? How scary!!!! Keep on keeping on. You're doing an awesome job which is evident in her smile ♡♡♡

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