Want to hear about my crazy, ever-changing day? Sure you do! Here goes.
Started out like any other Wednesday. I got up and got me ready, got Colby up at 7:00 for school. Nurse got here at 8:00 to help finish getting him ready. Yes, it takes 2 hours to get Colby up and ready to go somewhere. Moving right along, bing bang boom, time to get Colby up in his power chair. It wouldn't come on. Just flat out wasn't working. This is the same thing that happened to it a couple weeks ago. So I had to send Colby to school in his manual wheelchair, and that's not cool. It's way too small for him, plus the mount for his eye gaze is on the power chair, not the manual. Too dang bad, it was either that or he didn't go to school.
Called Kevin the wheelchair dude on my way to work. He said he would stop by and look at the chair. Yay! I'm just praying his current power chair can hold out for another 6 to 8 months while we wait for the other one to get here. We HAVE to get his new chair ordered. They said they were meeting tomorrow to go over some of the specifics of the new chair. Let's just get it ordered people. Work with Mama here.
Got to work, my day was breezing along. Colby's nurse calls. Says Colby isn't having a "horrible" day but isn't having a "great" day either. Also said she couldn't get the backup battery to turn on, meaning she wouldn't be able to use the cough assist on the bus if Colby choked. Nope, can't have that. I had a couple things to finish at work, then I said I would pick them up. Got in a hurry, big mistake, and yep, you guessed it. Jacked up the overwrap machine again. AGAIN…OMG what is wrong with me?! Tried to change the bags out, it didn't work, they wouldn't feed through, I cussed a lot, the bags broke, I cussed some more, then just left it.
Got Colby home. We fed him, changed him. Got his equipment unpacked and charging for school tomorrow. Put Emla cream on his port. Nurse from Walgreen's Infusion came at 3:30 to draw labs. Colby has appointments October 16 thru 18 for pamidronate infusions. They wanted lab work first. The infusions are to help his low bone density (very common with non-weightbearing kiddos). School nurse leaves. Infusion nurse stays to get labs. Wheelchair dude fixed the power chair for now. Did I mention we need to get his new power chair ordered, like yesterday?! Nursing agency calls and says Colby's nurse for tonight just got done with dr appointment. She has a low fever, they started her on antibiotics, and what did I want her to do? WTH?! I want her to STAY AWAY FROM US, that's what. I would never let anyone come over here if I knew they were sick, especially with a fever. Geez, can't believe she even asked that. So we had no nurse tonight, and that was fine with me. No big deal. I let Colby play around on his eye gaze. He did great for 45 minutes, then said Spongebob 4 times, so I took that as my cue he was done lol.
Along with the excellent direction of Colby's speech therapist, I programmed Colby's Halloween costume choices on his eye gaze tonight. I told him he needed to be something scary, as he has always been something cutesy. So far his choices are Frankenstein, vampire, werewolf, zombie. Excited to see which one he picks. Also ordered a new backup battery. It was only a matter of time until this one started acting up, we've had it a long time. It was $319 plus shipping. Cha ching, fantastic.
Colby and I are going camping this weekend with mom and Kenny. Supposed to leave tomorrow between 4:00/4:30. Don't have the first thing packed. Haven't been to the grocery. Don't have our laundry done, 1 load in the dryer, 1 in the washer, 1 waiting. I'll be a very busy mama when Colby is at school tomorrow.
Gotta get this kid in bed. Gotta do laundry. Gotta get these contacts out of my dry eyeballs. Later, taters.
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