So, the last story I wrote about Sis was 3 years ago, so I will try to do a quick catch up here. She is currently only on 2 pills.. Baclofen, for her autonomic storms, and Klonopin, for her seizures. She also gets Albuterol and Flovent daily through her air chamber puffer. I give her Miralax as well, for her chronic constipation. She has always been hypertensive, needed 2 high doses of blood pressure meds daily to keep it under control. But last year, we did a trial run, and she is mysteriously able to go without any hypertension meds at all now. She still runs a wee bit higher than the typical child, but it's a safe number for Kira.
Kira has seizures all day, every day, and I have accepted that nothing will change that. We have tried next to every anti-convulsant out there, and I put her on the Ketogenic diet in hopes to gain seizure control. While the diet was actually the best treatment thus far, she still seized hourly. She kept falling out of ketosis, even when I was being strict. Then when she developed RTA ( Renal Tubular Acidosis) I just changed back to pills for treatment. The Dr. assured me there was no connection between the RTA and the diet, but I had had enough. On a great day, Kira will have say, 2 or 3 seizures an hour. On a typical day, Kira has about 5-10 an hour. When she is sick, she literally seizes back to back. Her last hospitalization, we could not get that girl to stop. We drugged her up so much, that a herd of cows would have been down for the count. Her little stubborn brain was in it to win it though, for some reason.
Something that HAS improved is her response to pain. In the past, it didn't matter where you stuck her with a needle, she would lay there as if she were as snug as a bug in a rug. Now, she lets you know, " THAT HURTS!" She will posture, and even grunt if it's really painful. Last year, while it broke my heart, it also made me laugh ( after I calmed down and pulled myself back together)... We could NOT get vein access on her. They tried and tried. Then they attempted to do a picc line in her arm, but it would not thread, so we ultimately ended up putting in her port. She has needed that baby all of her life, she has the worst veins I have ever seen. This port is a God send! Going back...so while they were poking her for literally 3 hours to try to get vein access, she was putting up a fight, she ended up at the foot of her bed! She was kicking her legs and fighting so much that my girl scooted herself all the way to the foot of the bed, I LOVE that. I hated it while it was happening of course. I actually had a couple breakdowns, but when it was over, I was like, "Go Kira, go!"
She is still *asleep*. Anyone who sees her thinks she is just a sleeping little girl, and they tell their children, "Shhh.. she's sleeping.". I no longer give each of these strangers my life story, I just smile and continue on my way. I used to feel compelled to explain to every single person who saw Kira her life story. It was ridiculous. lol If I was at the grocery store, and Kira was say, in my front carrier as a baby , and the cashier simply said, " Aw, what a cute baby." There I went with, " She does not wake up..I have 3 healthy boys.. nobody can figure out whats wrong with her.. she was born like this.. she seizes all day... yadda, yadda, yadda," Poor Strangers, what an awkward position I must have put them in. She just simply wanted my money and for me to walk away! Thank goodness, I don't do that any longer.. you're all welcome! ;)
Okay, it's "Late Start Wednesday" and I need to get the boys ready for school.