Read more about the article Gavin went to bed not feeling well and I’m worried
Gavin / My thoughts

Gavin went to bed not feeling well and I’m worried

Gavin had a really stressful day yesterday. He did great with having to get more bloodwork done but it took a lot out of him. As the day went on, it was clear that he was at the end of his rope. The boys were being annoying, as little brothers will be, but Gavin didn't have as much patience as he usually does. After dinner, he ended up with really bad reflux and it took quite a bit of work to help him feel better. He went to bed tonight still not feeling 100%. I don't know if the reflux was stress related or if it was something he ate. Maybe it's a little bit of both or something else all together. I'm worried about him and there's nothing I…

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February 9, 2018
Read more about the article The doctor called with heartbreaking news
Common Variable Immunodeficiency / Gavin / My thoughts / Thoughts and Prayers

The doctor called with heartbreaking news

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.…

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February 8, 2018
Read more about the article It’s all about Gavin this morning
Gavin / My thoughts

It’s all about Gavin this morning

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…

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January 29, 2018
Read more about the article I’m not sure what we’re dealing with but we survived the day
Elliott / Emmett's Art / My thoughts

I’m not sure what we’re dealing with but we survived the day

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…

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January 17, 2018
Read more about the article Dry air makes it so hard for me to sleep
My thoughts

Dry air makes it so hard for me to sleep

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…

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January 15, 2018
Read more about the article Doing right by Gavin for his 18th birthday isn’t as easy as it sounds
Autism Parenting Insight / Gavin / My thoughts

Doing right by Gavin for his 18th birthday isn’t as easy as it sounds

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…

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January 14, 2018