This was definitely one of
those weeks. Monday was decent. Tuesday was the day of KayTar's hypoglycemic incident and the killer GPS debacle. Wednesday KayTar had a very wonky day, in retrospect I think it was repercussions from the hypoglycemia and altered feeding schedule on Tuesday. Thursday morning I woke up with a fever and body aches, hauled my butt to class (
which is an hour away) anyway, only to discover my first class was canceled and the professor hadn't let us know beforehand. AGH. Friday was mostly fine, until the afternoon when I received a letter from the kids' insurance company saying that they were no longer eligible. I nearly lost my shit when I opened that letter. KayTar is almsot 100% dependent on her enteral feedings. Enteral feedings require tubing, bags, syringes, and PEDIASURE...4 per day on average. All of that is very, very expensive out of pocket and KayTar's insurance basically keeps her alive at this point. Without enteral feedings, she would not get enough nutrition to survive. So I called the company in a PANIC, and the customer service representative said, "Whoops! That letter is incorrect. Your children are still covered and you will be receiving a corrected letter in a few days." I could have tongue-kissed that lady, I think. WHEW!
Yesterday afternoon, prior to the insurance panic, I was at the kids' school and I had some VEEEERY interesting conversations with the nurse and librarian. Turns out that KayTar's episode of hypoglycemia on Tuesday and her legitimate visits to the nurse on Wednesday opened up a whole new world to her. She discovered that the nurse's office is sometimes a pretty happening place...sometimes there are other kids hanging out there...some kids get cool stuff like ice packs and warm buddy bears and band-aids! Even when those awesome things aren't happening, the nurse, who she is buds with, is ALWAYS there to chat with. So on Thursday, she started inventing reasons to leave her classes to visit the nurse. By Friday, the reasons she was leaving class were NOT the reasons she was giving once she was at the nurse! On top of that, she is making pit-stops in the library to chit-chat with the librarian and the kids who are having library time. Basically, she's using the fact that everyone is cautious about her medical issues to get out of class for social hour. OH MY. She isn't in trouble, and everyone involved is kind of getting a kick out of it because it is just soooo
KayTar, but we're brainstorming about how to curtail it. It is tricky because she DOES have legitimate medical issues and we do want her teachers to be cautious of her symptoms...but we don't want her getting a free pass whenever she feels like taking a walk around the building! We've got some ideas (
giving her one "emergency" nurse pass per day to cut down on frequency, but if she uses it then she won't have time for library/AR testing time in the afternoon to make unnecessary trips less appealing, written passes with specific instructions on where she is/is not supposed to go while out of the class to help her focus, ect.) that we plan to try out next week, so I'll updating about it again later.
BubTar had his first baseball game this morning and THEY WON! He is enjoying it so much more than basketball and hey, they actually WON, that never happened in basketball. As soon as the game was over, we rushed home, changed KayTar into her dance gear, hooked her up for a tube feed in the car, and raced to class...barely making it. During dance class, I met another mom who has an undiagnosed kiddo. It was so NICE. A large percentage of the class is made up of Down Syndrome kiddos and all of those parents chat with each other, but it is a bit of an insular community...so it was nice to have someone to swap the frustrations of being one of the undiagnosed ones with. Having a perpetually undiagnosed kid comes with its own set of unique struggles, one of which is the fact that it is pretty tricky to find any sort of support system that can really empathize with you about it!
PS: I'm making some layout changes around here, so it may look kind of like a construction site for a bit. Hopefully it will be back to some sort of normal in the next week or so. Also, I love the new post editor in Blogger, if you haven't switched yet, I recommend it.
