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.
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| Puddle fun with Papi |
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| Playing in the rain with Mommy |
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| 4th of July fun with GREAT friends on lake Michigan |
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| Cousin KiKi and Mayla, boating buddies |
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| Dr office fun with 'new toys' |
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| Celebration shake for a healthy heart update |
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| Picnic park lunch date with mommy Love the Ellis Crew |
