Audiences. Love. Aliens.
$20 terratalking bucks to the first person who can name that movie.
Sometimes when life is going a hundred miles an hour in 64000 different directions, you just gotta sit down and blog. Try to compose your thoughts into some semblance of a crazy chaotic orchestra to at least give a rhythm and a beat to the madness rushing around you.
Life isn’t crazy in a bad way – just….busy. I guess this is nothing new. It’s just that without therapy this week to keep my natural cadence, i am realizing how precariously balanced all the other spinning plates are! And again – none of this is eye-opening in a bad way. If anything, it is making me WANT to grab the reins again and say whoa, hold up here. NOBODY PUTS BABY IN A CORNER!!!! Oh wait, wrong movie…NOBODY runs my life except me. and the aliens who call me mommy. So I feel a sort of “fresh start” coming on. It’s the ending of school and the beginning of summer and I have 12 long weeks stretching ahead of me in which to better organize the details, many and varied though they be, of my/our life. So that is what our first half-week of summer vacation will be. Going over new chore charts, going over the super-new “I’m Bored!!! Great then go do one of these fun jobs” chart, and in general trying to find a way to better organize the mundane tasks that fill up my days.
I also need to catch up blog about the new baby kitties that have taken up residence somewhere in our house (they are so small they are hard to find most of the time, but at least it keeps the girls occupied trying to search for them), try to catch Kendall doing some of her new signs on video, and then all the rest of the mindless drivel that usually pours forth from my brain to my fingers to this screen.
For those who come here mostly for Kendall updates – she is still holding her own. I think her body is working a little harder lately to try to adjust to the warm weather/humidity. We have had to keep the air-con on pretty much non-stop for the past couple weeks because she just starts getting too warm after only a few minutes outside when its above 80 and any kind of muggy. No doctors have ever really walked us through this, but it was last year on this weekend (Memorial Day) that she overheated really bad, started profusely vomiting, ended up with pneumonia, and eventually landed in the hospital on June 9th, during which hospitalization she had her surgeries and we realized – ummm, yeah. she’s definitely not growing out of this like we had hoped. We know she has some degree of “autonomic dysfunction”, which is a nice term docs give you when they want to sound educated about what is going on with your baby, but know that they really don’t have a CLUE about how to help it. It is your body’s amazing innate ability to monitor how fast you need to breathe, how fast your heart should pump, whether you need more insulin or more sugar released into your bloodstream, whether you need to put on a jacket or take off a sweatshirt. And while most people’s autonomic systems are something they never have to give a second thought to, because they run like new hotness, Kendall’s is kind of more in the “old & busted” category. It’s like a hoop-dee car that does its job of getting you from Point A to Point B – most of the time. But don’t expect the ride to be nice/comfortable/without its share of close calls and near misses.
All of that to say – her body is in a bit of “freak-out” mode with this weather change. It’s not anything bad or even call the doctor worthy yet. Just little things that I have to keep my eye on so we hopefully catch it before it does get to critical status. I have been trying to use her O2 at nite sparingly because it tripled our electric bill, and now that we have to run the AC also, well, let’s just say that watching Ben’s eyeballs pop out of his head when he opens the electric bill every month is semi-entertaining. But now I am seeing her trend downward with her baseline sats (meaning that she isn’t able to get above 97% on her own again, and her number is usually in the lower – mid 90’s), her temp is trending upward (which isn’t suprising given the heat, she doesn’t regulate her temp well, and once it’s up it’s going to stay up and go up, which she does not do well with), her sugars are doing crazy things, she is dumping fluid again, and i am spending way too many hours awake at nite trying to do battle between her pump pushing food into intestines that are trying to push it back out. She has also been averaging 19-20 hours of sleep a day again. All of this is exactly what she was doing back in January when she had been fighting illness for too long. Except that now, i know she has been healthy. So I can only attribute this stuff to her autonomic system trying to figure out what level to set itself at. Imagine having a radio that the volume was either off, or eardrum-splitting loud. Those are like the two settings of Kendall’s system, so it is constantly trying to bounce her around between those two, never just finding a nice happy medium. The key is to try to MAKE her environment be the happy medium. Hence the sleeping/long naps, air-conditioned house, and soon, probably the O2 again. I thought we might be able to make it through our upcoming trip to Rhode Island without it, but I am thinking I may need to start coming up with Plan B to get 5 days worth of oxygen tanks packed into our car and still leave room for luggage for 6 people….
BUT – she has surprised us before and taken a spontaneous turn for the much better, so maybe this will be one of those times!
Overall – she’s still looking great. All of these things are only the kind of things that you’d notice if you spent nearly every waking minute of your life noticing random body fluids like I do. Also – random fun fact of the day – blueberries look SHOCKINGLY like blood when they have mixed with a bit of bile and tried to be digested for a few hours. After a fun few minutes of having my heart stop when i saw said half-digest blueberry return from K4’s tummy 8 hours later, I realized it was indeed just a blueberry from earlier in the day, and i did not need to continue to panic at what horrible thing could be wreaking that much havoc on her system! Consider yourselves edumacated now. congratulations.
So – that’s all the news that’s fit to print around these parts for today. Even though I am going to backdate this one to yesterday. So I can challenge myself to post once a day in June. Someone appoint yourselves official blog post nag-ger and email me if you don’t see a post up by 9 pm every nite! Kthanksbai.
Peace out peeps.