Monday, May 4, 2015

Happy National FPIES Awareness Day


 
 











  



We are happy for awareness, as we celebrate the first ever FPIES National Awareness Day.  It's near and dear to our hearts as our precious Mallie Lynn has taught us, no two diagnosis are alike.  It's a journey.  It's taught us to trust God, trust your instincts, ask questions of your physicians, and don't just settle for an answer that isn't helpful.  
Our FPIES has looked different from week to week after being diagnosed at two months old.  Mallie Lynn is now 7 months.  Happy as a lark, but dealing with belly issues we long to fix.  She is unable to start solids so far and we continue to trial foods through breastmilk and search for a way to get her to baseline.  
Most mommas throw dirty diapers out as quickly as they can wrap them, while an FPIES momma inspects them with the vigor Langley.  My iPhone has a special folder dedicated to pictures of...... p o o p.  Sleep is a luxury with all babies reserved for top shelf occasions, but for our situation nights are the worst.  All that eating done during the day tends to show up in gas and belly pains in the midnight hours.  
We are so thankful for our darling girl's happy demeanor, her ability to always smile.  Her go with the flow, I'll do what you need me to attitude is much appreciated.  We are thankful for her big brother and how much they dare each other.  He makes her smile the biggest of grins and is always concerned about her happiness.  We are also grateful for family and friends, who love and support us.  Who took on that great Pie to the Face challenge and to those who have donated!  We are far better off than many and we hope you'll help us spread the word that this thing is #rarebutreal and the more doctors and people know the better.  

Friday, May 1, 2015

7 Months of Knowing Heaven on Earth - Mallie Lynn

Hey mom, I'm awful happy to see you!

 Mmmmmmm  These toes are more than just cute!  They're delicious and double as a teething toy.

 Check these stems, I've been working on growing taller, I hope you don't mind. 
 Hey where did those toes go again???
Ahhhh their they are!
Let's throw those limbs in the aaaayaaaa and wave em' like we just don't caayyyaaa!
 Have you seen this smile lately?  It's kinda awesome right!?
 Let's play a game called hide and seek.
 You'll never find me here!
Here I am!!


 At 7 months we are noticing everything and grabbing at whatever looks interesting!  Chalkboard was down in 3 seconds. 

Hey ya'll I can hardly believe I've been around for seven months!   Time sure does fly when you're having fun. 
Smiling is what I like to do best.

 Well, that and laughing.  Laughing is pretty fun too!
 Check out this new trick!  Practicing that pageant wave. 
Weight: 15lb and 2oz
Height: 251/2 in long

Feeding: When your hungry.  It has been more frequent the past month typically 2-3 hrs.  

Sleep: Eh...... Well we've enjoyed holding you a lot at night.  Between trialing banana back into momma's milk and teething this house has seen a lot of coffee.


Awake:You choose happy any day of the week.  No matter what you feel like you WANT to be happy, smile, and jump for joy.  I simply adore that about you.  I think you will be one of those special people that everyone wants to be around.  It's contagious, and the fun and happiness you put out there spills over onto all of us. 
Loves: ABC song, Row Your Boat, This Little Piggy, going for walks in the stroller, eating your toes, crinkling parchment paper & magazines, playing music in the exersaucer, rattles, chewing on wooden toys. 

Dislikes: being tired, having gas,  dropping a toy out of reach.


Temperament: My darling girl you are as sweet as they come.  You get sooo excited to see your favorite people and spend most days looking for an excuse to flash your big grin.  Teething and belly issues have made you fussier than usual lately but you find a reason to smile anyway. 

Clothing Size: 6 months 

New Milestones: sitting up!!!   Still a weeble wobble that will fall down but learning how to catch herself with one hand and push off.  Moving from sitting up to laying on her belly to try and reach a toy, sometimes not so gracefully but she's rarely bothered by it.  Teething!! In one day we had two bottom teeth popping through!  Waving, to yourself and admiring your sweet hands.

Sweet girl we are so happy to know you more and more.  Your sweet demeanor and ability to smile even in your most tired or uncomfortable days are inspiring.  You're going to move mountains.

Muah!  
Mommy  

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.    

Monday, April 13, 2015

A Masters "Par 3" Party! -Henry Turns 3

We asked Henry months before his big day what kind of party he would like this year; the little man who carries his clubs out to the yard almost daily answered us everytime with "a golfer party"!
So that's what we did.

 It started with a little baking, as we dove into one of his favorite birthday traditions;  helping make his cake and clean the bowl with a few licks. 

and more fun followed.
 We had hoped for good weather but a nice cold front complete with flurries sent our home course inside.  We quickly scrambled to create some indoor golfing fun and it turned out to be just as great.   Barry helped cut out some putting greens and Henry's Pops personalized a sweet putting box complete with all of his favorite golfers.  We had a mini pro shop set up for our guests to grab a bag and decorate a visor. 


 In true golfing fashion we served doughnut holes from his Sand trap, "Par"faits, orange "Wedges", watermelon "Slices", "Club" sandwiches, and sweet "Tee" and a side of lemonade for those "Arnold Palmer" fans. 

 Then came the Green Jacket ceremony.  My mom created a miniature version of the special Masters jacket for Henry's big day.  He sure felt special and has insisted on wearing it to the grocery, running errands, playing golf outside and church. 




He enjoyed making his golfing visor at his party and the outfit looked complete.  Completely cute that is.  Ohhhhh that Henry smile!  *Gush!


Baking his cake and cookies proved to be a slight bit challenging not being able to taste the icing or batter (Thanks FPIES), but luckily I had some eager helpers who walked me through the final end products.  These might have been my favorite treats to decorate to date!


We felt so blessed to have a house full of our closest friends and family, people loving and celebrating Henry.  He talked about the fun for days!  Thank you to everyone who came and for helping us gather books to donate to children in need.  This was a super sweet lesson to try and teach Henry to think of others and I hope to be able to do something like that every year.
















 Bravo to this sweet baby turning 3!  It makes me sentimental not sad to think of how he's grown.  I've enjoyed every minute of knowing him and each day brings a new memory or special moment I bury deep in my box of blessed treasures.  We love you Henry!

 
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