Friday, June 26, 2015

9 Months of Knowing Heaven on Earth - MLEC

Feeding: every 3 hrs with sometimes stretches of 4 hrs at night.  This has been a big area for us this month.  We trialed PurAmino elemental formula for a few days with the result ending in us going back to breast feeding on the elimination diet.  We found "our baseline" *(Mucus filled diapers) and decided to trial foods.  Began with apple and PASSED!!!  We officially have a solid!  We are feeling pretty big time over here, and praising God for a move in the right direction.  

Sleep:  The first half of this month was filled with belly issues that had our sleep all up in arms.  We have ended with a calm to the storm.  Sleeping like a....well, baby.  You feed wake to eat every 3-4 hrs unless we can bribe you into a little longer 4.25hrs with a paci.  We have naps :)  usually one in the morning and one in the afternoon.  One may be 20 minutes and one and hour but we take them. 

Awake:Happy, happy, and happy.  You are a little peach.  You seek out fun in anyway you can, yet you can entertain yourself with the shake of a toy.   You love to watch your brother do anything and you like clapping and dancing with your mommy and daddy. 
Loves: clapping, rocking on all fours, CRAWLING!!!!!

Dislikes: being tired, going to sleep without the woombie, being hungry (even just a little bit)

Temperament: Happy, silly, eager to laugh, sweet, calm, and easily entertained, strong willed, and pleasing. 

Clothing Size: 9 months 

New Milestones: Eating solids - apple, Crawling!!!  Not a master roller I wasn't sure how this would end up.  You began on all fours and started crawl scooting where you drag your leg underneath.  Your firs real motivator was your friend Aubrey where you scoot crawled to reach her over and over again at Bible study, next motivator, play pepperoni from your brothers toy kitchen.  It got you to move across the play room and from their the rest is history. 

I have had a hard time as this milestone of 9 months approached us.  It seems like the last big marker before you are  a big girl.  In a blink of an eye, or 3 months I will be celebrating your 1st birthday.  It makes me want to bawl my eyes out to think of.  Our time together has flown at an extremely fast pace.  You are loved far more now than you were the day I met you and you will be loved more today than the last.  You are showing what kind of person you are and it is bursting our hearts wide open with pride.  I will cherish each moment I get to know hang our with you, to know you, to love you, to guide you in this world.  You are such a gift my darling girl. 


Monday, June 22, 2015

Our Slice of FPIES

We have had quite a few questions lately from darling friends and family members wanting to know how Mallie Lynn is doing regarding FPIES.  Here is a brief synopsis. 
We are so blessed to have this little munchkin in our life.  She is a sweet soul, bursting with excitement, and always on the search for a good dose of happy.  She takes quite well to having an older brother and finds his squeezey hugs, gentle tackles, and pats on the head to be a delight.
Our slice of FPIES has taken us on a mental and emotional roller coaster over the past few weeks.  We were fooled into thinking we may have found our sweet spot after going on vacation and having a great week.  However less than 48 hrs after being home we were back to night screams, explosive diapers and blood in her stools.  I searched for answers as I looked back at my food journal and thought about what I had eaten on vacation.  I felt that grain may be the culprit since I immediately came back and had farro for breakfast.  Or was it the wheat tortilla I ate?  No she's had good days after I ate that, Was it quinoa?  Maybe, but we've had good days on that too.  Maybe the coconut milk?  Aahhhhhhhhhhhh    Maybe she just likes salty air? Everything seemed like a suspect.
So here we sit, 8 months and still reacting to foods through breast milk and not yet a safe solid food. 
Sick of second guessing everything and already on a fairly limited diet. (No : dairy, soy, rice, oats, eggs, sweet potato, green beans, peas,  chicken, squash, and barley)  I decided to make a change.  This has felt a lot like a science experiment at times and with any good experiment you need a controlled variable.  Enter the elimination diet.  After spending a few hours looking up foods with the highest FPIES pass rate along with nutritional values and what I had eaten over vacation, I came up with a list consisting of : grass fed lamb, brussel sprouts, spinach, white potato, cauliflower, asparagus, pineapple, cucumber, grapefruit, apple, banana, strawberries, nuts, olive oil.
This began our new journey on a total elimination diet.  It gave us good nights, and bad nights, but overall inconsistent diapers with some being mucus, jelly, and acidic while some showed signs of normal.  We had one diaper that looked, smelled, and felt like GOOD and Healthy baby poo!!!  We were so excited and hopeful I literally cried over this diaper!  "This is it!" I thought, "we have hit baseline!"  Then came a few bad nights, and bad diapers in a row (screaming and held for hours) So I took my issues to my discussion board.  Up and down went the rollercoaster ride.  I was told to try and take out nuts.  Many people had seen success in finding baseline by eliminating nuts even though that is more typically an IgE allergy trigger.  So bye bye, almond milk, walnuts, and peanut butter......hello feeling a little more hungry and piling cauliflower a mile high on my plate. I also discovered one more name for soy that had been hiding in my shampoo, face wash, and hand soaps so I searched high and low to find a new all natural replacement that was soy free.  (this is how I spend my free time)  If you see me spending 30 minutes flipping over bottles in the face wash isle please know that it's not because I'm picky about moisturizers.  We stayed the course for another week before having two nights in a row of night screams, gas, explosive diapers and I decided I had had enough.  I had hit an emotional and mental wall I couldn't climb over.  Tired...........................and tired of second guessing every little thing I eat, touch, or smell I threw in the towel and decided we had to try an elemental formula.
The fear of what might happen plus the nutritional value of the extremely elemental formulas had kept me on the road of exclusively breast feeding.  Most FPIES kids don't react through breast milk, and those that due are often not able to handle formula.  What we were doing hadn't been working either so what was the difference? 
We began by mixing the formula and breastmilk in bottles.  She didn't exactly devour it (this stuff is pretty smelly and nasty) but when she was hungry she would eat it.  Day 2 rolled around and she took it like a champ, eating up to 6 oz of formula and acting fine.  Then the night hit and all of a sudden she decided she was on strike.  For the next 38 hours she wanted NOTHING to do with a bottle.  I had decided not to nurse her for fear of confusing her and thought the tried and true "a baby won't starve itself would ring true".  But in 38 hrs the only thing we could get down her was 4oz.  I tried, her daddy tried, her Gran tried but the moment the bottle got near her mouth she screamed till she was choking.  So we learned we have a strong willed gal on our hands.  She had two good bowel movements on the formula and I wanted to push forward but when 13 hrs went by without a wet diaper and the previous "wets" had been more like damp I caved for fear of dehydration.  At 3am, after lots of screaming, I nursed her and back to total elimination diet we went.  I was happy to know that her body seemed to take the formula well other than being constipated.  So at the very least we know we have that. 
Feeling a bit defeated I again searched for answers online and through support groups.  Our conclusion is this.  Baseline looks different for everyone and whether it looks pretty or not we have one and it involves chronic GI issues.  So we will keep moving forward on this diet and start the introduction of solids.  We will begin with foods currently in my diet or those that are high on the FPIES pass rate list.  If she gains a food, then so do I, if she loses a food then I do as well.  We will look for any reactor signs and pray that none of them give us a trip to the hospital.  (a fear I try not to let creep into my mind)
We are in the middle of trialing apple, have no reactions other than skin  but she is not necessarily interested in eating it either.  She has become constipated but we are increasing liquids in hopes that this will subside.  Our next food to trial will be pear.  Fingers crossed and hands folded in prayer that over the next few weeks we will gain some safe foods, better sleep, and better diapers.  I also plan to sneak in the formula slowly in hopes of making a transition at some point.
We are awaiting a long anticipated appointment to see an EOE specialist at Cincinnati Children's in mid July.  Finding a doctor who understands FPIES, let alone chronic FPIES is a bit like searching for a unicorn, but supposedly Dr. Mukkada is just that.
We are thankful each day that this smart, sweet baby girl is ours.  Her bright smile, sweet hands, and rapidly growing personality are a reminder of our blessings each day.

Monday, June 15, 2015

Our Growing Boy.

 A few weeks ago I posted this picture with a sentimental heart.  The photo on the left from Henry's first day of 2's "Mom's Day Out" at Second Presbyterian, the one on the right was his last day.  In the past month I feel like I have watched him grow from a toddler to a little boy.  Looking at this picture I would say that feeling is quite accurate.  

Hard to believe he has changed that much in just 9 months, and it is not just one of physical growth either.  In that time we have placed a lot of change in your life and in a way played a big part in asking you to grow up.  You adjusted to moving into our new home, sleeping in a big boy bed, bringing home a baby sister, and potty training.  We've worked together to keep our fits at a minimum and how to reserve your messiest behavior for mommy's eyes only (because I can handle you not liking me for a minute while you learn how to be a gentleman.)  Some days were filled with the sweetest moments while others may have had us both in a funk.  You are my buddy, my little ball of energy, a great entertainer, problem solver, athlete, helper, imaginer extraordinar, and I love each day of knowing you more.
The things you question, or say, or do, never cease to amaze us.  Like when I tell you that it's sunny so you need a hat and your response is a quick, "Well, I don't know about that..."
Or the way you stick out your hand to explain something you're so sure about, while tilting that head and looking out to the grown up.
You're teachers adored you, and I'd like to think they did so in a way that they genuinely felt touched by your sweet soul.  They all spoke of just how "special Henry is" and I couldn't agree more.  I'm so proud of you for making friends at "Pirate School" as you always referred to it, and for being just sad enough to let mommy know you still want me around.

Oh and let's not forget that you're the best big brother your "Malla Malla" could ask for. 
We are so happy to call you our son, each day a little more than the day before.  I know you'll grow each time we open and close a school year, but so will that place in my heart for you my darling boy.

P.S. I know you're getting big but at least we still have moments like this......  ahhh that nap was good.