The thickness of Mayla's liquids Journey continues.....

In the middle of a dead sleep at 4:32 am this morning, my eyes shot open and my heart rate increased drastically to what seemed like the pace of a sprint.... I heard a rattle on our front door, as if someone had grabbed the handle, shook the door and was trying to get in. I laid there, frozen waiting to hear more...I did, this time sounding like it was in Mayla's room....That was enough for me to stir Will to tell him 'I heard something'......he sleeply asked If I wanted him to go check...I paused, didn't breathe, listened and waited till I heard another unusual sound that had us both up and out of bed in no time. We slowly opened the door to our room and crept out, first looking into Mayla's room...I pulled back the curtain and saw the reason for my sudden awakening....the strong wind. I was thankful but at the same time, still on SUPER alert, heart pounding and awake. I laid in bed, in fear of what I may look like if I actually got OUT of bed and really 'started' my day, so I stayed and prayed. God knew I would need that extra prayer time and submitting of my day to him before I let my feet hit the ground, and I'm glad I had it.

Due to a change in one doctor appointment, and a wrong date written on the calendar for another, Mayla ended up with back to back Dr. appointments today...and if you are familiar with her story at all, you know she has an anxiety attack pretty much every time she sees anyone in scrubs or any type of medical personal...so yes, today needed prayers!

We first had Mayla's two year well child appointment, and due to some 'smart' parenting and the nurse leaving the room, I was able to help the appointment off to a good start, instead of waiting for the nurse to come back in and weight Mayla, I turned on the scale and weighed her myself...that helped but there were still tears over the head measurements and her height....yes that's how stressed out she gets. It does bring me great pleasure to announce that she has improved DRASTICALLY with the doctor though and even allowed him to look in her ears, and for the first time ever, willingly stuck out her tongue for him to look down her throat..she's normally screaming so much by that time that he can just look right down and in:) She totally deserved her sticker that she got when we left the office. 

Then over some hills, threw one construction zone and another,  around some curves and we got to Mary free bed, even with time to spare which meant more play time and a happy Mayla.

She LOVED carrying her 'special' doctor food in her new backpack

Even there early enough for Mayla to make a new friend.

Such cool toys....

We were greeted by smiling Jennifer, an intern and the nurse Jane assigned to Mayla. Jennifer was actually the same therapist we had seen before for Mayla's feeding therapy, it was good to be with a familiar face. We went into a back room and after answering a round of questions Mayla was starving and ready to eat, which was exactly what we wanted. 

We went upstairs to the radiology lab where two other ladies were waiting for us. We laid out the vast array of foods/liquids I had brought and started adding this marshmallow puff looking stuff to them all...aka barium....(AKA YUCK) to get everything at the consistency it needed to be. Mayla was as happy as ever sitting in the high chair anxiously awaiting her 'meal'....and then the xray unit moved in closer and so did the others....that started the downward spiral that didn't end till Mayla was out of that high chair, in my arms, nuggi in mouth. She just sat and whimpered, looking around, not wanting the yogurt drink we had just placed in front of her...the video we started playing wasn't so entertaining for her either and when she finally did start drinking, she was looking to the left and right, not such a good direction for the x-ray machine needing to see her swallowing. She could only handle a few swallows of the yogurt as she wanted NOTHING to do with that taste and was rather upset we did that to her 'usually' favorite food. We moved onto her honey thick liquid which she did very well with and showed no signs of aspirating, followed by scrambled eggs, and healthy bars....by this time she was only getting more upset though that everything was coated in a thick white substance...what really distressed her was when we gave her a peanut butter and jelly sandwich coated in white fluff...she took one bit and was MAD... She was so hungry and so thirsty and seemed so confused why we kept doing that too her food and drink. We managed to get a 'nectar' thick liquid in her before we completely lost her, and happily realized she could handle that thickness without aspirating, what we could not test was 'thin' liquid to see if she could have that. We tried mixing things many different ways, in many different cups/bottles and nothing was doing the trick, each time you would put something new on Mayla's tray she would lose it, scream, and put her head down, it seemed at one point in time as if she was actually having a nervous break down and didn't know how to handle it. I knew we needed this test, it's the only way to see, and I pushed as much as I could, but every part of me was wanting to whip her out of the high chair and cradle her in my arms. I cupeled her face at one point in time with the palms of my hands and with tears streaming down her cheeks and over my fingers I kept telling her it was okay; she looked up at me with her dark dark brown eyes and without saying a word, I could tell she was begging me to take her out. The only way we could get any thin liquid in her after many tears, was with me squeezing liquid out of a sport bottle and into her mouth while she screamed. Most of it came back out, but a few sips did go down, which she could handle, so it is a start.  

it was breaking my heart by the second...working so hard on doing something that she needed, but yet at the same time not feeling like I was able to meet her need by giving her something she was so repulsed by....today was one of those days you DRED being a parent....I tried the barium drink we were trying to get her to swallow and it made me want to cry, it was basically like a ground up piece of chalk with a bit of water, it was NASTY! 

After we left that room and had Mayla calmed down, we were able to get her to drink just normal water from a cup..she did okay at first, but then the coughing started...

Mayla's first time in her life having a 'cup of 'real' water'

it was enough for the nurse to recommend only going down one level to the nectar thick for a month, with small tries of 'thick' normal liquid like milk and watch for signs of aspiration and then have a follow up appointment.Why she still coughs and struggles with 'normal' liquid??? That's a good question and one we have too. The results are being sent to her cardiologist, dr, and ear nose and throat specialist to see what the next step should be. It's all a little confusing and something we will hopefully have answers for over the coming months. So for now it's still 'special' water for Mayla, the good news is one packet will last two times as long now though which will be nice not buying the special thickener as often. 

.....I held it together, long enough to get in our car......I was rejoicing over the new news, but yet overwhelmed. This doctor's appointment was just another 'traumatic' experience for Mayla, another one to add to the list. At the rate we are going I think i'm going to start crying each time I see someone in scrubs too! This all comes the same week we started more 'intense' speech therapy and went from once every 3-4 weeks to once a week now and with a different program. This is all part of Mayla's story and I think one of the hardest things for me is wanting her to understand, but as smart as she is, I know this is all out of her comprehension. 

Mayla challenges me in ways i've never been challenged, and teaches me to look beyond my own means. Today nothing was working to 'distract' her..it was another case of she's not my child, but God's and I have to surrender. Today was another lesson of 'Keri's not in control of the things Keri thinks she is' and these lessons are good, but hard. They take me to the cross, they take me to my knees and humble me.

Today during my devo's, I came across Philippians 4:6 (NLT). "Don't worry about anything;instead, pray about everything. Tell God what you need, and thank him for all he has done." There is a lot we have to worry about, but this verse tells us not too...there's a lot that we can't do, but there is a big thing we CAN do: Pray. There is a lot we need and there is a lot to be thankful for and God DOES care!