Colby report: He's doing great. He's able to sit up longer and is not needing as many cough treatments and not as much bi-pap time. He's able to sit up in his power chair with his back brace on. Friday he sat up for an hour in the morning, then another hour later in the afternoon for home hospital schooling. Think I'll keep him on home hospital until the last week of October, then stick his butt back in school. His home hospital teacher brought his report card Friday for me to sign. Days attended, 2. Days absent, 25. That made me so sad. I hate that Colby has had to miss so much school, but what can you do? It is what it is I suppose. Tomorrow we're going to start working on his Halloween costume. I'm going to cut out pics of costumes and let him choose what he wants to be. His choices will be Frankenstein, a vampire, a crazy doctor or a cowboy. Can't wait to see which one he picks.
We'll be taking Colby up to Cincy for followup appts in November. On the 9th we go up for a couple of appointments, spend the night in the hospital and he'll have a sleep study, then have appts the next day on the 10th. This will knock out the pulmonary and cardiology followups. Then we'll go up the week after Thanksgiving for the neuro clinic. I'm trying to decide what to do about a dentist for Colby. He usually sees a pediatric dentist here in Louisville that specializes in special needs children. But after everything he went through with his recent hospital stay (mouth too small for intubations, etc.) I'm thinking maybe he needs more specialized dental care. Maybe he even needs to be sedated for his cleanings. The last few times I've taken him to the dentist it has been a nightmare so I guess it's something I need to look into. Sure, just add it to the "to do" list!
Amy report: I've been better. Even though we've been home for 8 days, I'm still not rested. Neither is my mom. I asked her yesterday how she felt, if she was rested up, and she said no not really. I said yeah, me neither. Guess it just takes a while. I keep thinking about Colby's hospital stay, and I don't really know why. It's over, it's in the past. He's going to be okay. It was a long stay, but certainly wasn't as life threatening as the one he had in 2009. Seems like it's been harder to get back in the groove this time. Must be the organizing, purging, etc I've decided to do. I really didn't have a choice. Hard to unpack 3 big bags of hospital supplies when all of Colby's drawers and closet shelves were full of crap already.
Yesterday we went to a memorial service for a family member (Colby stayed home with sitters.) During the service I kept thinking about the saying, "Don't judge a book by its cover." Before his cancer battle, he was what you would call a "big burly dude." He was over 6 feet tall, stocky, broad shoulder, and had this long, wild, wavy hair. At first glance he looked like he could chew you up and spit you out. But his personality did not reflect that rough exterior. His brother, at the memorial, said he lived life "at full tilt." I admire people who do that. Someone else spoke of his honesty. Another told of his "love thy neighbor" attitude. Under all that roughness was a friendly, giving, trustworthy, hardworking man who did right by those he loved. Like they said, even in death he helped others, as he decided to donate his body to cancer research, which I think is a most noble thing to do. He was a wonderful addition to our family and he'll be missed greatly.
I don't know what the crap is going on around here. We came home last weekend to a non-working TV in the living room. You know, the nice flat screen that "Santa" typed extra lines to get. "Santa" totally splurged that Christmas so Colby could have a nice TV, since that's something he enjoys so much. "Santa" is totally freakin' pissed that after not even 3 years (will be 3 in December) the TV is shot. Dad took it to HH Gregg for me, but they said there was nothing they could do. WTH? So now I have a little TV setting on top of boxes in the living room (very classy) and it's not working either. Sonofabitch. Called Insight. After being put on hold tonight from 11:49 to 12:04, the tech informs me I need a mini box. Whatever. So Insight is sending out a mini box in the morning. Then we noticed my dryer isn't drying. Seriously? So Dad, bless his heart, packed it up tonight and is going to take that somewhere to get it fixed. And oh yeah, my cordless house phone doesn't hold a charge for more than 2 minutes. That's probably an easy fix, hopefully just the battery is low. Let's take bets on what breaks next, the microwave, hot water heater or the kitchen sink will leak again. What's your bet?
Well I guess I've babbled on long enough. Better get some sleep so tomorrow I can tackle ordering supplies for Colby, a dr appt for me and hopefully cleaning out Colby's other dresser. Need the drawer space! Nite all, time for me to try and put my brain in pause mode for a bit and get some sleep. Have a good week.
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