In 2 weeks Bailynn will get her 3rd set of scoliosis hardware. 3rd. Seems completely insane! That whole “3rd Times the Charm” stuff, better be so!
What has happened since I last updated.
Well, we have drove back and forth to Indy like mad people. Bailynn has underwent CT scans that required hours of iv fluid infusions prior and post to protect her kidneys from the contrast. She has had vial after vial after vial of her blood taken. We have received good and bad reports, but most of all, we have made it to 2 weeks.
Her nutrition levels keep coming back crazy. The overwhelming consensus is that her body simply consumes all the nutrition we give her to just survive. She is eating 3000 calories or more a day now. We have increased vitamin intake and calories. She is eating herself silly – and still weighs 50lbs!!! The issue is she is feeding tumors throughout her body too. Her body is in a constant state of repair and inflammation dealing with her disorder. She is fighting. Food is just one tool she has and it is a good thing she loves it!
Her CT scan to look at her aorta damage came back good, but we still roll to see her cardiologist Wednesday. This is the last trip (THANK GOD!) till we go up for surgery. Our trip, a little over a week ago, was rough. I decided to take the girls up the night before, since we had to be at Riley at 7am. Bai grinds her teeth – did you know that?! IT IS SUPER FUN!!! NOT AT ALL! Especially when you are praying for sleep in the bed next to her. She also thinks it is great fun to grab your face, blow raspberries and over all have a fun all-night kinda party. Heck, she gets to sit and sleep in her chair all day, why not!? AHHHHH!!! The girls and I, bleary eyed, sat in the infusion lab, as Bai happily dozed, for 11 hours. Then we left Indy just as some crazy storms decide to lay down their fury. I have never pulled off the highway for a storm before. This time, I sat in an Arby’s parking lot, exhausted, praying for home, wishing the storm would leave, and scoffing at Bailynn’s ability to even sleep through this!! We made it home – and slept for a week – haha I WISH! We survived though.
Wednesday she has an ECHO and an EKG to verify her heart is in ship shape. It always has been, this is just a routine just-in-case visit.
She also got the final approval, from all the tests, to move forward with surgery. I don’t have a time. I don’t have information. I just know April 24th. Then she does her hospital stent and is home in-time to turn 17!!!
I will update when I have more info. Thanks for staying up-to-date! 3rd time here we come!!