We did it, we DID IT, WE DID IT!!!!!!!!

I stand in awe, and Praise God for the news we received today....we officially can throw all goop and thickening agents IN THE TRASH!!!!!!!!! WHOOT WHOOT!!!! (Well we will actually donate what's not opened:)

If you remember when we came home just 3.5 weeks ago, we were told to try nectar thick with all liquids, and it was bad; Mayla was aspirating on everything we gave her to drink for a couple days and I was feeling very discouraged and afraid we would end up back on honey thick and in the hospital for a scope test. But her warrior attitude prevailed and through some work together we have made it. Mayla no longer has to have any sort of thickened liquids....I feel free for the first time in months!!!! They gave Mayla a 'graduation'-alumni tee for Mary Free Bed and we put it on her and I just squeezed her tight..she giggled as if she understood and was as proud of her accomplishment as I was. Our little two year old is getting some where, and we are elated!

Within a couple weeks with the new speech therapy she has also started trying to mimic a LOT more which is another answer to prayer! She tries to sound out words and sounds and it's music to our ears! She surprises me every single day by repeating part of a word and a few days ago even placed two words together for the first time.

Once a week she has speech therapy and once a week she has a sensory group, both have been a gift to us (time consuming but a gift). I am overwhelmed by what I have learned in her sensory group and throughly enjoy the time we have there! The two ladies who run the class are very knowledgeable and great people to be around!

I sit here with a smile on my face, and as I laid Mayla down for a nap joy overcame me. We have been sharing apple cider, orange juice, my water and for the first time in MONTHS she is drinking milk by the glassful. We encounter a few more spills as it flows a LOT faster, but I gladly welcome the clean ups!!

Happy in the waiting room!

PROUD to be wearing her Alumni shirt!! WHOOT WHOOT!

She's ready to run from this place!! So happy!!!!!!

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!

She brings me tears, but I love her to the moon and back..

We live in a world of comparison, and being wrapped up in it starts at a young age and bombardes us every day. Mayla's disposition and struggles have really tempted us to compare her to other children and at times I will be honest, I've gone that road and it's not helped, but destroyed. Comparison is a thief and it robs us of joy. Our word for her life since she was born was TRUST, I could add 1000 other words on as she gets older, but today it's CONTENTMENT! And at yesterday's heart check up, both those words were REALLY hard to dig out of my back pocket......

Mayla did awesome walking into the hospital, playing in the waiting room, and even the first steps into the examining room, I was thinking our little one on one talk in the car on the way was a game changer..HA NOPE! After she did an AMAZING stall tactic ON the way to the examining room (she signed that she had to go potty, something she NEVER communicates), the clinging and whining started. I warned the nurse right away that Mayla was 'unique' and disliked (more like hates) EVERYTHING about the doctor's office; she noticed right away as Mayla wouldn't even stand on the scale to be weighed, and screamed when we laid her on the table to measure her, that screaming was just the beginning. Next on the agenda was the ECG, normally stands for electrocardiogram, yesterday I think they changed the meaning to 'Easy Crazy Girl'. Let's just say, two nurses later, two attempts later, sweating child, a crying mom and a hysterical toddler, they were not able to do the ECG. The screaming was so bad, at one point in time I thought (I can't believe i'm admitting this), next time i'm going to ask that they sedate her before hand. And instantly the battle of comparison starts in my head....and tries to bring me down further than I already felt.

One of the hardest things about Mayla's heart condition is not being able to see it, ha that sounds funny, but it's so true and i've come to love these appointments that just give the peace knowing that it beats and sounds like it should through these tests, that's why we do these recall appointments and have these check ups. It was something else yesterday that I had to surrender to the Lord, and it wasn't easy.

The wonderful Dr walked in chuckling, looked at me and said, 'I have four kids, it's ok and won't be this way forever!' I told him I think Mayla remembers being born and EVERY SINGLE prick that has happened to her since, and he said that she most likely remembers a lot more than we think, if not the actual occurrence, the sounds, the smells and the feel associated with hospitals and doctors. He was able to get his stethoscope on her heart for about .3 milliseconds (in-between her SHOVING his hand away), long enough to say that he heard NO heart murmur which he has been amazed with since we first saw him. He said it's very common to hear one with this procedure based on how the heart sits now, it stretches the tubes which in turn causes the murmur. He mentioned she had an amazing heart fix operation, proof again we were living RIGHT where we needed to be for our little Miracle Mayla to get the best care possible, we are still ever so grateful for the care we received while at the Zurich Children's hospital!

Mayla is enjoying summer time and loves spending as much time as possible outdoors. She is a wound up ball of energy....if she could spend half the amount of energy on talking as she does moving, she might say more than 10 words. We are still seeing a speech therapist and this fall we will be starting 'more intense' speech therapy as she is not developing at the rate we had expected. We know it will come and I pray soon as the frustrations she puts out are so hard to handle some times. A strong willed child is tough, one that can't communicate is even tougher.

September will be six months since we started her on her thickened liquid diet, aka GOOP! She's doing amazing with it and we've started to get the system down, it's just exhausting to make sure we always have something with us for her to drink; we have forgotten a few times and it's broke my heart to tell her that there is nothing for her to drink. We will have another x-ray video eval done in September and we are praying she will have 'corrected' her swallowing by then.

We moved into a new house a little over a month ago and we are LOVING IT!!!!!!!!!! The house was a foreclosure and needed a LOT of work, but my amazing husband took on the tasks and has turned it into a beautiful home. We are still sifting through boxes, missing random items, have long to do lists and bare walls but we have enjoyed the process of redoing it together and know that in time we will have things hung and boxes unpacked and a never ending 'to do house list' that just keeps growing:)

May you fight the war against comparison, may you learn and grow from people who are different, may you stay strong as you fight each day to be joy filled even in the difficult circumstances that life throws your way and may you have peace.

Puddle fun with Papi

Playing in the rain with Mommy

4th of July fun with GREAT friends on lake Michigan

Cousin KiKi and Mayla, boating buddies

Dr office fun with 'new toys'

Celebration shake for a healthy heart update

Picnic park lunch date with mommy

Love the Ellis Crew

Don't know what to title this......

When I started this blog days ago it was titled,  'I wish I could say it's getting better...but it's not!' However as you can see, I changed that title and there is a reason for that........

When Mayla was born we joked that we needed to rewrite a NEW baby book, as anything and most everything we were reading in the 'traditional' baby books, was not our little Mayla, she is now a toddler and I'm saying the same thing:)

Over 9 weeks ago Mayla decided I had plenty of restful nights, since she was such a good sleeper, and thought it would be 'good' to change things up a bit with a persistent night time cough that woke me, startled me, and sent me sprinting into her room to see if she was ok. I blew it off for weeks though, thinking it was the same bug that every other child had....there were random fevers in there as well which really threw us for a loop, so after about the 4th call and visit to the doctor we decided to try a couple medications. When we found out she was aspirating they decided to do a chest x-ray on her, thinking she most likely had pneumonia, the doctor was actually certain. So off to the children's hospital we went with a prescription in hand for pneumonia...an hour later we found out we didn't have to fill the prescription as her lungs were clear, we were shocked! Some nights the cough led to throwing up in bed, full baths and new sheets, which I always blew off as 'must be the flu....again'.

We started the ball rolling for the ENT, a process that took longer than it should have due to some miscommunications within the doctors office. All I knew was she was all over the board and nothing seemed to be helping. My heart broke for her. After a week straight of medicating her, trying to bring relief, she started throwing up. She would throw up during the day now though, 1-3 times, and it had no pattern to it besides normally associated with coughing; some times it came during meals, after meals or probably while thinking about meals. She always wanted to eat though and acted fine. We were worn out and perplexed. I was on the phone every other day it felt like with the doctor's office, trying to get some answers. We switched up her thickened drinks, thinking it was what I was giving her, which heightened my stress to the moon as we had a system that was working. The change left her not wanting ANYTHING of hers to drink, on top of throwing up and a lack of wet diapers; bad combination for any parent to see. I was drinking my Zija with her one morning and she wanted it, normally I would fight that battle and tell her she couldn't have it becuase she needed thicker Zija, but I was desperate, I was fighting a battle and was weak, and gave her some, I then had to fight the guilt battle, and it was draining. The liquid was good for her fight against dehydration, but bad for her lungs if she aspirated it!

Mayla had gone one full day without her normal 'goop', and had not thrown up all day, we thought we finally had an answer and were pumped, until 10pm that night when she threw up in bed, all the questions plus more came flooding back. I was annoyed, worn out and sick of bringing a bucket and towel with me whereever we went, and heart broken. I knew that the second the doctors office opened I WOULD be calling.

During this time, in between all the crazy ailments, speech therapy continued, and talking to a few other therapists, they recommended we see a food therapist, between the food struggles we were still having and the new life of having to thicken liquids; that was still hit or miss most days! So after more phone calls, more paper work and more scheduling we were walking into Mary Free Bed Rehabilitation Hospital, this just so happened to be the day after she had thrown up, and yes i DID call the doctor and after food therapy we were heading to the pediatrics office. It was a crazy day, but timed perfectly. The first day of food therapy they also have a nurse talking with you, she was just as confused as I was about Mayla's recent history. However I had been doing LOTS of internet research and came to the conclusion that Mayla could have GERD, a reflux problem, which the nurse also confirmed could very well be. It was perfect timing that I would be heading to the doctor right from that appointment and be able to talk to the doctor about this idea. Food therapy was an hour long and very informative and helpful, I was excited for the journey, however nervous and overwhelmed as to what this 12 week, two time a week program would look like in our life.

On to the doctor and he confirmed that Mayla could have GERD and suggested a possible sinus infection. We walked out with a medication to 'treat the GERD acid symptoms' but not help it go away and an antibiotic. It was 'pure joy' to find out that Mayla didn't like either medicine and for her to show me by way of throwing it right back up, as if I hadn't seen enough of it lately we now had a medication that induced it. So we mixed it with applesauce, she caught on, we mixed it with pudding, she caught on, so we gave it to her plain again, she puked, so we mixed it with a strong syrup and she only made puking motions, we then mixed with pudding again and it worked...I now rate how good my day was based on if Mayla made it through the day without throwing up, I long for more than 3 in a row!

We went to our 2nd food therapy session on Monday, and to our pure excitement, SHE GRADUATED:) The lady was very impressed with how Mayla was using her mouth, moving food around, and the fact that she was drinking some thickened liquids! I did not object to her early dismissal of us and celebrated when I was able to delete 11 weeks of appointments from my calendar, based on certain other family events that have turned up, this was as MASSIVE blessing to make some room in my calendar!

The following day we were headed to the Ear Nose and throat Specialist. He thought Mayla sounded good, looked good and she was so cooperative in her extremely loud screaming that he was able to get a good look straight down her throat. I was hoping to walk out of there with a scope appointment set up, but he said based on how things were going now, he wanted to wait, which I understood and was in support of as I did not like the thought of putting Mayla under so we could have a good look down inside, okay well I was a LITTLE ok with it as I was desperate to have 'answers', but the thought of us avoiding the appointment was wonderful.

And she had been doing better (until last night when the coughing started again). She still has some interesting things going on, and we are not sure where to turn to next. We are still curious if she is aspirating when drinking, why she sounds congested after every meal or every drink, or why she coughs so much. I want to take her place, he little 19 month body has been through TOO much, the only great thing out of all this is all the cool office toys she has been able to play with lately, but that's it! At the hospital when a nurse was coming to check my dad, Mayla lost it....she thinks anyone in scrubs is coming for her, poor thing!

Mayla is getting some where with her speech, but it's slow. Next week we start a two day a week speech therapy group, that will last for 5 weeks and i'm interested to see how it will go. She can now say 4 words, Eat and No of course being her favorite. But as she gets smarter and smarter each day it seems she also gets more and more frustrated that she can't communicate what she wants, so i've also been trying to work on the sign language more too and she has added a few more to her list of those as well.

At one point in time during this long journey I was reading Jesus Calling and it said, "The best way to handle unwanted situations is to thank Me for them. This act of faith frees you from resentment and frees me to work my ways into the situation so that good emerges from it." Most every day lately has involved an 'unwanted' situation and it's been a real challenge, but I have been thankful. Thankful i'm Maya's mommy and can walk this road with her and am fortunate enough to work from home, thankful for the random snuggles that come when she's just screamed her face off for a doctor and finds comfort in my arms, i'm thankful for little things, like speaking English and being able to communicate with doctors and nurses, and a doctor available 24-7 via the phone. We have a hard situation right now, but it's also one that allows us to function from day to day. I keep thinking about the two words, inconvenient and uncomfortable, and this is, but it's at those times God can use you the most if you are willing. Our word since Mayla was born.....TRUST, and it stands out more and more every day, it's not about trusting in what I can do for Mayla or what Will can do or even the doctors, but what God can do for her. He created her, he loves her and he is her loving father who will not abandon her nor us!

Waiting room fun, climbing on chairs

Watch out for Mayla the school bus driver at speech therapy play group

one big waiting room all to ourselves

entertainment while Mayla waits for her food at food therapy. 

loving life with the 'cool cup' and a WHOLE cracker, this is a huge step for Mayla being trusted with this

such cool toys

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. 

The beginning days to speech therapy.

BALL, BALL, BALL, MAMAMAMA, P-P-P-PLEASE.......That's my language these days.....along with sticking my tongue out at Mayla (no judging, it's encouraged by the therapist), making fish faces, and kissing her hundreds and hundreds of times with puckered lips...trying to teach her that's MUCH better than the open mouth kisses she insists on giving everyone:) And of course to start working on those lip muscles.

Mayla is amazing, and I fall more in love with her each day...even if she RUNS from me when i'm trying to sit down and go over word books with her, or if she pouts when I make her TRY to say something other than 'eeeeeese'...her word for EVERYTHING! It's cute, and of course EVERY parent would be grateful if the ONLY word exited from their child's mouth is 'Please'...but it has become her 'clutch' go to word and working to reverse that is hard!

A speech therapist from Early On came last week Thursday and Mayla took to Lindsey RIGHT away...it was most likely because she brought some cool toys with her that intrigued Mayla, and don't forget the bubbles she had, anyone that shows up with bubbles will become Mayla's BFF instantly! What was the MOST exciting thing that came out of that session for me....seeing that someone else, a certified therapist, has a hard time working with my daughter as I do. What was relieving, how she would just laugh it off, and allow Mayla to continue on. Lindsey worked with Mayla on different mouth movements; Mayla was NOT a fan and struggled to look at Lindsey as she was only focused on the object Lindsey had...Mayla persistently tried her 'eeeese' word to get what she wanted and when that didn't happen, she would run along! We were laughing...especially upon Mayla's return saying 'EEESE' with a bit more gusto in her voice thinking that would do the trick!

It was fun having Lindsey here, at our home, she coaches me as I interact with Mayla, she gives me activities and assignments to work on with Mayla and she encourages; something one needs if they are in a position of feeling inadequate at times. This is a growing process, and one i'm glad our family is in, but it does not come without challenges. The first and biggest challenge I encounter is Satan trying to beat me up and rob me of my joy. Little thoughts get planted in my head throughout the days that tell me I have failed, and I have let Mayla down. Satan tries to use the world to 'show' me that i'm not a good mother....of course, I KNOW these are all lies, but they come knocking at times....my choice is to NOT open the door to them, but to fight them. The world tries to get me to compare, and what I have just learned from Pastor Jeff Manion is that comparison means focusing on what we lack, or in this case, comparing others to Mayla and what she lacks. The only thing that comes out of it, a joy stealer. Instead of comparing, I try and am determined to focus on what God has given us, and that he knows everything, that means he knows even more than me and he can see things I can't.

Lindsey will be coming once a month for now, they start slow and want to see for now how Mayla progresses with another assessment in June. Once a week we go to a speech play group too, it's more like a free Gymboree session, with playing, singing, dancing and even includes a play parachute. Mayla is being referred next month for a swallow eval at the Children's hospital, we are wondering if all the tubes down her throat early on could have caused some damage, so we are starting there as Lindsey also showed her concern for Mayla's choking/gagging while drinking/eating. She tried to do a hearing test on Mayla, but surprisingly (ha note sarcasm) Mayla didn't cooperate:) She will try once more before sending us to a center for that. It's a lot, and it's challenging and fun at the same time. It's rewarding too....every new sound that comes from Mayla has me JUMPING up and down, my heart racing, my lips smiling and me celebrating what I feel is a milestone and thanking God.

I wish I could record the look on Mayla's face when I utter over and over, mamamamama, dadadadada, she looks at me, grins sheepishly and says with her eyes, 'mom, you sound so funny'! God is paving a way for Mayla and knitting a future for her I can't even begin to imagine.

Gotta love having Cousins that encourage Mayla's sounds along side us. 

Play group with Cousin Kiley, an indoor swing:)

And Mayla's favorite, the ball pit! Thinking about building one in the house:)