It's been the longest, most stressful day I've had in a long time. There are two main reasons for my current level of distress and both are related to Gavin but not his fault.
I received a call today from Gavin's doctor. When I saw who it was, my stomach knotted up and my heart sank. They never call unless it's bad news. I was right. Apparently, Gavin's numbers are crashing again. I'm currently waiting for him to come out from having his labs drawn for the second time in three days. I didn't get all the numbers but they informed me that his Absolute Neutrophil count (ANC) dropped from 2.9 to 1.8 in less than a week. This is not a good thing and I wish I knew what was responsible for this but no one knows for sure what it is. The most likely culprit is the Clozapine but it's also possible it's part of his CVID (Common Variable Immunodeficiency) as well.…
Gavin's bloodwork is done for the week and I'll follow up with the pharmacy this afternoon. I need to remind them to have his medication delivered by Wednesday evening. There's plenty of time for them to get the results and gain approval in order to release another seven days worth of pills. Next up for the day is Gavin's IVIG infusion. We actually just received a resupply of his infusion meds on Friday and so we are good to go for the next thirty days. They've been doing a lot better with Gavin's infusion supplies lately and that's awesome. As a parent, it's stressful enough just knowing your child has all these life threatening health conditions. Worrying about if/when their medications will arrive and arrive correctly is just that much…
I survived the day. That's something to celebrate because there were times I didn't think I would. ☺ Emmett seems to be doing better but Elliott went to bed not feeling well. There's all kinds of shit going around the school, so that may be what's going on. At this point in time, no one's puking and that makes me happy. I hate puking and I hate when the kids puke. Puking doesn't gross me out or anything like that. It's easy to aspirate when puking and that's not a good thing. I learned all these things when I was a medic and some are etched into my brain. I'm not sure what the morning holds but if they aren't feeling good, I'm not going to push them. There's too…
I had a rough time sleeping last night. Majority of the problem was related to the air being so dry, it made me really stuffy and that always makes it hard for me to sleep. It's like a fricking desert. Around 2 AM I ended up downstairs on the couch. Its easier to breathe down there for some reason. I need to put the humidifier on the second floor because that should make a difference. I didn't end up fall asleep with Ruby curled up next to me. Thankfully, the boys are at Lizze's parents house, so I was able to sleep in. Gavin didn't need anything this morning and I wasn't disturbed. All we have to do today is take Lizze to the dentist, get stuff for the boys…
We've established that #Autism Parents aren't getting the breaks they need. The next question is why. Why don't you get the breaks you need?
Gavin will turn eighteen in a few days. To be honest, that's a pretty big deal for a number of reasons. The most obvious is that he's physically made it to eighteen and I say that because of his fragile health. He's had some close calls over the years and there were times we weren't sure we would ever see this day. Instinctively, we want to make a huge deal out of this day. We want Gavin to have the best birthday of his life thus far. There are so many things that Gavin will never be able to celebrate. Things like high school graduation, getting his driver's license, going to college and truly living on his own. As much as we want to through a huge party for him…
So I've found a new subject for my amateur photography hobby. Right now I'm loving taking pictures of Ruby. For one thing, she's adorable and the other is she's super cooperative. ☺ The ferrets are impossible to photograph clearly because they never stay still. I need a way better camera to capture them. Perhaps someday... ☺ Anyway, I took this one of Ruby while she was napping on my lap this afternoon.