Urine sample collected, measured between two cups, one of which goes into the freezer: CHECK. Were off to a good start!
Thursday was a busy day for the Bishop ladies. There was a lot of anticipation for all the things we needed to accomplish.. I knew the day had the potential to stress me out so I laid the pressure on heavy for the girls too "Mady, Belle - we have a LOOOOOOOOT to do today, and it's just us three. So mommy is probably going to be a nut running around. I need you to bare with me, be on your best behavior, get along and help mommy out. Got it?" It's VERY rare that I give them a forewarning like that... so when they heard the words, they immediately stood to attention and asked what they could help with. Because let's be honest, if the mommy is having a bad day, evvvverybody is having a bad day ;)
We needed to be at the hospital by 11am for the test. But before we check into Outpatient Registration, we needed to go by LabCorp. Immediately after the hospital, we had Kindergarten Orientation for Annabelle and then 2nd Grade Orientation for Mady. So I knew... by 10a, my ducks had to be in a row (add salt to a wound - im on a diet and can't have coffee!! OMG!)
The girls and I organized and distributed the mounds of school supplies into their own bags. I wrote names on their things and we lined our bags by the door. The girls didn't argue when I picked out their outfits and to my surprise, we were all ready to roll out the door on time! (I miracle I tell ya, a MIRACLE)
The car ride is when everything changed. We had been having a smooth, organized, cheerful day until Annabelle reiterated, "Mommy, we're going to the hospital NOW?" .... "Yes baby, we're going now and as soon as it's over we will go straight to your new school to meet your teacher!"
Her tune changed. The tears began and anxiety flooded the car. Mady's eyes were the size of quarters in a panic.
I was actually looking forward to this visit, for both girls. I wanted to ease some of Mady's worries by showing her that Annabelle is *always* subjected to painful procedures when we go to the hospital and allow her to have a glimpse into what's going on with Annabelle when she does go. I also wanted Annabelle to experience the same, the opportunity to have a doctors visit with no pokes or boo-boos and a moment to have her sissy by her side and hold her hand. These girls are everything to one another and their bond is something I could have never taught on my own. They look out for each other and while our family circumstances isn't ideal, they together, have grown to absolutely own this journey with one another.
The car ride was tough. Mady tried repeatedly to remind Annabelle that she wasn't going to be be hurt today but Annabelle had made up her.. she simply didn't want to go.
We arrived in time to make the run to LabCorp before checking in. Our receptionist was wonderful and was able to distract Annabelle and make her laugh a bit. As they took us to Cardiology and we walked the long white, sterile halls, Belle began to cry. I hate moments like these. We are committed to being there and doing the test, I can't negotiate any of it with Belle and while all I want to do is ease her anxiety, I know the only way to do that is to let her win and we leave.. but that isn't an option. It's never an option. The only stupid frickin option is to put myself in front of her and remain clear that we must do the test and watch in her broken eyes as mommy has once again broken her heart and let her down.
Mady offered to say a prayer for her.
I don't know if my heart crumbled or burst, but I know all I wanted to do was break down as I heard Mady's sweet words. "Dear God, please let my sister know that she is going to be ok and you are going to take good care of her. Don't let her be scared and don't let the doctors hurt her......"
Belle watched as her sister just spoke to God with whatever was coming to her mind. They both said Amen and we were called back to get started. The Echocardiogram was easy, of course, but the anticipation was still heavy for Annabelle. I think just the aspect alone of having to be in a hospital and not running around like a kid is starting to weigh her down and remind her that she's very sick. I kept whispering to her that she was doing a good job, but she didn't want to look at me. She paid attention to the monitor in perfect, motionless, silence... or she watched the wall. The test itself took about 40 minutes.
After the Echo was finished, it was time for the EKG. Mady wanted to lay with her sister and they told each other stories until the nurse came in to perform the test. Once it was finished, the girls pulled each of the stickies off together.
The afternoon carried on just as quickly as our morning began. We met daddy for a super fast lunch after we left the hospital and flew home to gather our things before going to the school. Annabelle did awesome during her orientation and she loved her classroom. She even knew some friends in her class! We adore our teacher and I think it will be a wonderful fit for her. I dropped all her medical supplies off with the clinic where OUR nurse will administer all her feeds and care. We do have a few more contracts to sign with our nursing agency and give to the school but those things are just about wrapped up.
We should have the results back from the cardiology tests hopefully by next week. As soon as our pediatrician here in VA reads them, they will be sent back to Cincinnati Children's Neuromuscular team where they will read the results. As long as everything clears, our orders for the muscle biopsy will then be written and we can began scheduling the OR. We need three surgeons in the OR for her next surgery, so organizing this chaos hasn't been easy.. but were almost there! Fingers crossed for a happy healthy heart so we can be cleared to move forward.
Thinking of you guys! Lots of love!
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