Common Variable Immunodeficiency Archives - Page 158 of 260

Gavin forgot something and it’s worrisome

Gavin had his Friday IVIG infusion this morning. Thankfully, the process went on without any hiccups and he actually did a much better job of putting things together. There has been some concern because he hasn't been able to properly set things up and perform his own infusions lately. Doing a better job today has been a very positive thing and hopefully, that bodes well for the future. We'll have to keep working on this going forward and with any luck, we can continue to build upon today's success. Unfortunately, that's where the good news ends and the worrisome news begins. If you're a seasoned reader, you know that we went through a month of hell recently because Gavin's infusions medication (GAMMAGARD) went into a nationwide shortage and it became impossible…

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August 3, 2018

My thoughts

I’m a little worried about this morning

I slept pretty well last night and that's a good thing because I've got my morning cut out for me. Vivint will be here is a little while and there may be a problem with adding the camera. I'm not sure if it's going to end up happening. We may have to sacrifice some indoor cameras in order to add another outdoor camera. It's apparently a technical limitation. This is a worrisome development but we can figure it out when they arrive. I'm not sure what we have going on today after this. Everyone is sorta in a mood already and I don't want to push anyone's limits because that's going to make things worse.

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August 3, 2018

Autism In Real Life / My thoughts

This is what it looks like when #Autism explodes all over your house

I wanted to take a minute and revisit some basic Autism in real-life moments. This particular one is from this evening and is a perfect example of how Emmett likes to see his world. In the picture below, you can see what my fridge looks like, after Emmett organizes things. Emmett, like many kids with Autism, appreciates thingd like order. He likes straight lines and everything in its place. The only place he tolerates disorder is his bedroom. It's weird and I can't explain it but it's one of his quirks. The bottom line is this, it makes sense to him, it doesn't have to make sense to me. Leave a comment and share the post in you can relate or even see this kind of amazing display in your…

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August 3, 2018

My thoughts

I have 2 important goals for today

We've had a fairly typical morning. Lizze had a doctor's appointment and we're trying to get ready for Vivint to arrive tomorrow. The boys are doing pretty well and Gavin is being Gavin. We have two main goals aside from survival today. Survival is always our bottomline but we work hard to build up from there. ☺ I'm working on the outside of the house because I need to figure out where the best, most inconspicuous place is for a new camera is. If we'd had this done when it was originally scheduled, we'd have caught this asshole who shot off 6 rounds on the side of our house the other day. We had to reschedule our last install because something had come up. Truthfully, the outside of our house…

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August 2, 2018

Autism Parenting Insight / My thoughts

The 1 thing we usually do after our kids get a #vaccine

I was hoping to recover from the events of this morning but doctors appointments can be tough for Autism families. I tried my best to keep everyone moving forward but it didn't always work out. On the way home from the boys pediatrician appointments, Elliott wanted to stop and get something to eat. That's always been an unofficial tradition after someone gets a shot. It's not written anywhere and there's no rule that says we have to but it's proven to be a great way to redirect after a stressful experience like getting a shot. Anyway, it was tough but I had to say no because things are really tight right now and I need to put all I can into grocery shopping. That being said, rather than get fast…

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August 2, 2018

Elliott / Emmett John / My thoughts

The lowdown on today’s doctors appointments

Both Elliott and Emmett had appointments this morning with their pediatrician. This was a regular well-check and an ADHD follow-up as well. Elliott was really anxious because he knew he needed a vaccine. Turns out he needed two vaccines, meningitis and HPV. The HPV was the final in a series of three and the meningitis is required by the school now. Anyway, Emmett's appointment went well and it was quickly over. Elliott's was more complicated because we're dealing with several things that need considerably more attention and follow-up. We bumped up Elliott's antidepressant a little but because he's really struggling and that was his psychologists suggestion but we've exceeded the limits of his pediatricians comfort level in regards to managing his mental health medication. Thankfully, I was able to call…

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August 1, 2018

Autism Parenting Confessions / Gavin / My thoughts

Until the day I die

I'm lucky I have no hair because if I did, I'd have ripped it out this morning. Gavin's already struggling and that struggle is pushing me closer and closer to the edge. I'm trying so hard to do right by everyone in my family but I think that task might just be bigger than me. Last night, Gavin came to us about midnight, complaining of his chin being ichy. He's was clearly distressed but not wanting to tell us what was wrong. After a painfully awkward, completely unnecessary back and forth, he admitted that his beard is what's causing the itchiness. For some reason, he was embarrassed to say that his beard was a problem. I told him to shave and slap some lotion on his chin. That should help…

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August 1, 2018

My thoughts

I’m drowning

Today was one of those days where I simply didn't cope well with anything. Between the shooting yesterday, the raccoons (and yes I said raccoons, as in more than one) in our attic, everything going on with Lizze, all that's going on with Elliott, Gavin's constant decline and Emmett's daily struggles, I'm drowning. I'm having one of those days that I think every special needs parent has. One of those days where the weight of everything on my shoulders becomes too much to carry gracefully. There's a great deal of worry about the future of my family. I'm really struggling to make ends meet and I've recently had a longterm partnership expire because the program was terminated. That has hit pretty hard and I've not been able to make up…

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August 1, 2018