Tears, tears and lots of adjustments

When I wrote last weeks update about the xray food video eval, I knew we would have a hard road ahead of us, but never once did I realize it would hold as many tears as it has for both Mayla and myself. Sitting here emotionally, mentally and physically tired, I've come to grips and complete understanding WHY God doesn't allow us to know the future.....It wouldn't be healthy for anyone. Most days now i'm glad I DON"T know what the day has in store for us, I just know that each morning, I need to wake up prepared, ready, strong and willing to face the day..and the one thing I really need more than anything....TRUST!!!

When I wrote last weeks blog, I knew we were in for a big change in our daily life, but it's been bigger than I anticipated. The first day Mayla didn't drink anything. We were driving down the road and I took a sip of my water, not even thinking, she started verbalizing her favorite word in the back seat, 'EEASE EEASE' and at that time I realized I made a huge mistake;drinking in front of her.  I told her that it was mommy's water, and it was unhealthy for her to drink that water. She burst into tears and as I drove home I sobbed, realizing this was going to be a lot tougher than I had imagined. My heart broke too as I tried to give her 'thickened' milk before bed that night, I left putting her to bed in tears, not a sip down her and completely heart broken. The next morning started the same way, this time she joined me in the cry fest. I tried to give her 'thickened' milk in a sippy with the nipple cut, she screamed, I tried to put it in a cup, she screamed, I tried to put it in a cool cup, she screamed.....that morning we both sat on the couch, snuggled under a blanket with tears rolling down our cheeks, for the first time in a LONG LONG time, I felt unable to meet my daughters needs, a simple one at that and felt I was failing her! 

That day I pulled out old school cups, even ones I used when I was little, different sippy's, new cups she hadn't used yet and went to town 'formulating' some new concoctions for her. I visited health food stores, the local grocery store, and Walgreens to see what options were out there. After what seemed like hours of driving around, scooping, stirring, and blending I threw cup after cup after cup of 'goop' away; nothing was doing it for Mayla and I could sense the frustration. 

However, by the third and fourth days we were starting to get a little bit of 'goop' down her. She is a water and milk only child, so coming at her with flavored items  has been a change in itself. We have been using bananas, apples, and strawberries in hopes that it's flavors she is use to, but in a drink form it's still too foreign. We have been forced to switch to only open cups as it's too thick to get through much else....that has resulted in many many spills and splatters, but she sure does look cute holding that 'big girl' cup. Watching her wait for it to hit her mouth has also been adorable, it takes a while for that thick goop to slide down the side of a cup into her mouth! One day it thickened right up and she was holding the cup upside down looking at it with a perplexed look, that was funny!

The dots have been connecting lately and continue to more and more each day and we put more of the puzzle together. Mayla is going on over 5 weeks now of a HORRIBLE night cough, it's leaving a very tired Mayla and a worn out mommy. Hearing her cough her lungs out each night and at times even throwing up has been exhausting. Today we will be heading back to the doctor to see if a chest xray is necessary and if the aspiration has affected her lungs. We will also be working on getting a referral to the ENT (ear nose and throat specialist) to see if a possible scope could happen to check Mayla's insides to make sure there is no damage that would need further evaluation!

We realize this is harder on Will and I than Mayla, she has her moments but soon won't know the difference. It will also get easier with time, i'm still trying to figure out what to do with all these items below, and how to mix them all properly to get something Mayla will drink.

 Each day has been tough, but i'm once again humbled by others I meet and talk to along this journey and I realize how blessed we are by this situation and thankful it's not something worse. I met a mother the other day that has to thicken EVERY single thing the child gets to eat AND drink...just hearing that I thought to myself, 'WOW, I've got it easy'.

"Standing on this mountaintop

Looking just how far we’ve come

Knowing that for every step

You were with us

Kneeling on this battle ground

Seeing just how much You’ve done

Knowing every victory

Was Your power in us

Scars and struggles on the way

But with joy our hearts can say

Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful"

This song has become my favorite...throughout the day I find myself saying over and over, 'NEVER ONCE, NEVER ONCE'! He was with us when Mayla was conceived, He was with us when she was born, and He has not left our side since, nor will He! "Don't let your hearts be troubled. Trust in God, and trust also in me." John 14:1

Strawberry goop...it wasn't a big hit with her (nor me, i've been trying these things i'm giving her)

Working on her milk commercial look..I see now how they do it!

She is such a joy to be around, and barely holds still....EVER!

I"m blessed beyond words to have supporting friends (secret sneaky ones even) that leave notes like this for me as a gentle reminder that is some times needed!