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! 

Another thing to add to Mayla's Medical File....

Mayla is a champ, and she may not like ANY medical personal now, but I have a feeling with the direction she's heading in, she won't have a choice but for them to become her best friends!

We spent part of the morning at the wonderful Devos Children's hospital here in Grand Rapids. On our way there I communicated with Mayla in the car what our morning would look like, to the best of my knowledge of course. When I finished explaining that we would park, go into the hospital, register, then eat a snack and drink a funny flavored liquid with barium on it, all while an x-ray machine watched her...her response was perfect, 'k'. Basically like, 'I got this mommy'....which brought a HUGE smile to my face becuase I knew she was as clueless as me walking in what the morning would really look like:)

Mayla has been in a rather interesting 'mood' lately when it comes to 'eating'; usually displaying her biggest and loudest 'NO's' and thrashing her head from one side to the other while kicking...based on the fact that this test today was centered around eating, i'm sure you can understand why I had a knot in my stomach going in. Mayla on the other hand thought the hospital was one cool, big play ground, and all the people who waved at her were worthy of a smile, from a distance of course. I REALLY would like to know what is going on in this child's mind each time we are seated in a waiting room though with only magazines and kleenex to play with (it was the 2nd day in a row as yesterday we had her well child appointment).

They finally called us back, it really wasn't that long of a wait, but for some reason when you have a curious toddler with you, waiting times seem triple what they really are! I had been praying up to this point, but with sweaty palms and armpits my praying escalated as we walked through the long hall with swinging door after swinging door.

The lady asked me to get out the food I had brought and the sippy cups and she would start preparing the barium solution needed to see the food/liquid go down. Mayla saw me take out half our fridge and half our pantry from the bag (yes I wanted to be over-prepared) and was ready to get the food eating/drinking xray process started, her enthusiasm to eat was the first answer to my prayers! I had NO idea what to expect that raspberry flavored milky looking substance was going to taste like, but I did know this was about the 1000 time in Mayla's 18 months that I wish I could have taken Mayla's place and had it done to me, instead of her.  

We started with the yogurt mixture and to my absolute amazement she ate it up...next tricky part, having Mayla sit back and not look from side to side so the xray could track the food as it went down...I busted out some good peek a boo with a wash cloth, airplane noises with the moving food, and even busted out a few dusty dance moves:)

We then moved on to rice chex, eggs, bread, then the one that did it...the liquid. Mayla only took a sip, but it was enough for the nurse to see right away, signs of Aspiration. The liquid went 'down the wrong pipe' per-say. She proceeded to thicken the liquid 3 times, trying each step to see how Mayla responded, it was at the 'honey stage thickness' that Mayla did not aspirate the liquid. WOW......It was one of the moments you are relieved to see the reason and have an answer for the difficulties, but in the same breathe not Mayla, and what does this mean now.

What it means is that Mayla can not have anything 'normal' to drink for the next 6 months. We have to add a thickener to everything. What we are hoping to accomplish in this time is first and foremost to prevent aspiration, also hoping that over time Mayla will mature in her drinking. Something that worried the nurse was how Mayla did not cough as she was aspirating, signs that show Mayla has 'normalized' this behavior to an extent which could be very damaging later on to her lungs. What is this from? They are not really sure, could be the way she started with tubes and needing assistance in the early days or just becuase, that's Mayla! What's the point of the 'thicker' stuff? It adheres together better and helps Mayla control where it goes easier.

My heart broke for Mayla today. I started reminiscing back to when she was a few weeks old, how hard breast feeding and bottle feeding were for her. Then transitioning to water and sippy cups, looking back on how often she would cough, choke or gag. My heart breaks that I didn't push more months ago, putting all these things together. I wonder how many irritations to her throat and attacks on her lungs could have been prevented, had I been more aware of this.

I'm thankful for what we know now though, and i'm thankful for technology. Mayla has been suffering at night with wheezing/coughing attacks that I pray end soon, everything is making sense now as these are associated from the aspiration. The question marks have been answered, I just wish it was months and months ago.

Our pastor had a saying a few months ago..inconvenient and uncomfortable, that's when we grow. This is inconvenient and the thought of 6 months is uncomfortable. But like every challenge we have been through, I eagerly take it on and look forward to seeing the results.

Who knew that when I woke up this morning and read today's devo, I would be coming back to it to find the strength I need. 'Walk by faith, not by sight. As you take steps of faith, depending on Me, I will show you how much I can do for you. If you live your life too safely, you will never know the thrill of seeing Me work through you. When I gave you My Spirit, I empowered you to live beyond your natural ability and strength. That's why it's so wrong to measure your energy level against the challenges ahead of you. The issue is not your strenght, but mine, which is limitless. By walking close to Me, you can accomplish My purposes in My strength." ~Jesus Calling

All strapped in and ready to go.

The 'moving wall' is one of Mayla's favorites at the Hospital, her first time playing volleyball today. 

Some how I felt better about sharing my strawberry shake after I was told to give her 'thicker liquids'. HA!

Have I mentioned 'we' love the Children's hospital.