IVIG Infusion Archives - Page 157 of 181

That would have been a problem

I'm not sure what we were thinking but it turns out that school begins on the 21st and not the 27th. I found that out this morning when I called to double check with the school. Apparently, orientation is on Monday and Tuesday is the first day back. We were totally planning on the 27th and turns out that would have been a problem. 😁 The boys are excited and for the most part, even have the same teachers as last year. That's a relief because switching teachers is always a very stressful thing for my kids. I think that's actually pretty common for kids with Autism. Anyway, we're going to have to figure some things out because we now have less time to prepare. While I will miss the…

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August 13, 2018

Gavin / IVIG Infusion / My thoughts

Unfortunately, I had to teach Gavin a lesson this morning

Unfortunately, Gavin's having to learn a lesson this morning. Every Monday and Friday morning, Gavin needs his IVIG infusion. This is something he'll have to do for the rest of his life. It's not something that gets better and it's only likely to get worse over time. We have a rule that Gavin must do his IVIG infusion first thing in the morning. He's supposed to eat breakfast, take his meds and on Mondays and Fridays, get his infusion going. This morning he ate breakfast, took his meds and went upstairs to play his tablet. When I realized the time, I called him down and questioned him about this. As soon as I pointed out that he had not started his infusion, he immediately reacted by punching himself in the…

4 Comments

August 13, 2018

Inspirational Posts / My thoughts

I was not a good husband or father today

I've always been different. I never really got into trouble as a kid or teenager. I never drank in high school and to this day, I've never done any form of recreational drugs or even smoked a cigarette. Peer pressure was just something I didn't pay much attention to. Growing up, all I ever wanted to be was a husband and a father. When everyone else was thinking about being a doctor or politician, I was thinking about having a family of my own. Obviously, I needed a career as well but that was more of a means to an end. I had an amazing pair of role models in my parents and while I know they aren't perfect, they always set a good example. My Mom and Dad always…

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August 13, 2018

Gavin / IVIG Infusion / My thoughts

Gavin’s doing better in this area

I know Gavin struggles in most areas of his life. That's just the reality of the situation and I won't sugar coat or spin that. It's frustrating as his parent because I find myself having to micromanage is life and I don't want to be doing that. Having said that, I have a spot of good news. Gavin is doing better with his IVIG infusions. When his infusions started up again, after the medication shortage issues, he couldn't do his infusions on his own anymore. Maybe too much time had passed and he forgot how to do them properly? Truthfully, I don't know. I'm relieved to share that the last few infusions that have been done, he's done entirely on his own again. He's doing a very good job and…

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August 12, 2018

My thoughts / Word Fun

Describe your #Autism Parenting experience in 3 words

I haven't done one of these in a long time. This is both fun and educational, all at the same time. People tend to either forget or miss altogether the fact that every Autism family is different because every person with Autism is different. By taking a second and describing your experience being an Autism parent in 3 words, you will help others realize the differences and maybe even learn something yourself. Please leave your 3 words in the comments below. You can also reply to the original tweet or the post on Facebook. All the comments sync up so whatever is most convenient for you. ☺

4 Comments

August 12, 2018

My thoughts

Things just got a lot harder for us and I’m not sure what we’re going to do

Something has changed recently and it's already having a significant impact on things with my family. I haven't talked about this yet because I've been preoccupied with other things but it's already creating some challenging situations for us. When I partner with a company or organization, I almost always announce it, especially if I'm endorsing something. Likewise, when a partnership ends, depending on why it ended, I usually announce it because it keeps everyone on the same page. Guardian Locate comes to mind. I worked with that project for many years and it was a decent chunk of my income. When I chose to leave, I explained that I didn't agree with the direction it was going in. It was important to me that I announce the separation because I…

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August 11, 2018

Announcements / My thoughts

Congratulations Wishes Can Happen and @mix941canton

I wanted to take a second let you guys know how the Wish-A-Thon went. Thanks to everyone who made this possible. Thank you to everyone who worked so hard to make this year's Wish-A-Thon such a success. The final numbers are in and Wishes Can Happen raised $213,759, which I believe is a record. I also believe that they exceeded their goal of being able to raise enough money to grant 40 wishes. This is so unbelievably awesome. I'm grateful to have played a very small role and I'm blown away by the generosity of everyone. This will make such a difference in the lives of so many families. Thank you again. ☺

0 Comments

August 11, 2018

My thoughts

The truth is sometimes I don’t want to remember

My experience with Wishes Can Happen this morning was quite profound. I'm completely emotionally drained and physically exhausted. At the same time, it was for a very worthwhile and and well worth the fallout. I'm not sure if people understand how difficult it can be to talk about one of the most horrible thing any parent can imagine, a child with a life-threatening or terminal illness. There are times that I'm able to live in a bubble and pretend that we are a normal family. I hate the word normal but in this case, I mean a family who's child isn't facing a life or death illness, with no hope for a cure. This bubble I sometimes retreat to is born out of necessity. It's purpose is to help me…

5 Comments

August 11, 2018