Asa came down with Gracie's fun fever and sore throat! He was a real bear on Sunday and I took his temp under his arm. It was normal and being difficult isn't unheard of for him so we brushed it off as a bad day. on Monday he felt warm again but the underarm temp was normal agsin. By lunch I took a rectal and sure enough it was 100°. I'm not sure why I didn't realize before but he never has an accurate temp unless its rectal. Once the motrin was onboard and we were cuddling on the couch he was resting. I also put together that he had a sore throat. He kept asking for food and would put it in his mouth but wouldn't swallow, just pool it. He was also drooling, even though he had a pac. I know at nearly 4 he needs to lose the paci but without it he tends to sit with his mouth wide open and is drooly. Plus it keeps him quiet and me sane!
Today was better but he woke up early with his once a week poop that of course was a stinky mess! That started his day off with a bath and while he loves a bath first thing in the morning is not his scheduled bath time! We know how much he hates going off schedule or routine. Let me just tell you that he was no barrel of monkeys this morning. Nothing I did was right and I was trying it all! Thankfully he didn't have a fever all day so that means school tomorrow!
It also seems like this little bug has increased his motility. Odd, right?!?! He has been asking for food all day. He didn't eat much but he drank a million gallons of soy milk, water, ice, juice and tea. He's had the wet diapers to prove it too. Dirty ones too!!! We shouldn't have to use the Miralax tomorrow! The drinking and desire to eat is pretty great....the pooping, not so much!
I want to ask a favor of y'all. This has been a tough year for mito kids. Several families had to say goodbye to their little ones way too early. But then there are the rays of hope that shine through. One of our mito heros started the drug trial, EPI-743 in California today. I'm praying this drug will help his little body, that it gets a big green light from the FDA and that it helps all our mito kiddos. There's another ray of hope too. A 14 year old girl, Delaney, started a FB page to raise awareness for mito. Her brither, Grant, has mito and she is trying to get as many as people as possible to visit and "like" her page. It'd be great if you could spare a minute to check it out and click "like"! Thanks so much!