There is no cure for what my oldest son has but we keep pushing forward

Eariler today there was a knock at the door. It was Akron Children's Hospital delivering Gavin's IVIG infusion supplies. I guess I didn't realize it was already that time of month again. Gavin has been getting these delivers for more years that I care to remember and as much as I hate the fact that they're necessary, they are. These supplies allow for his twice a weeky IVIG infusions. Without these infusions, Gavin wouldn't have a functional immune system. It's a heartbreaking reality that people like Gavin and families like ours have to live with. There's no cure for Common Variable Immunodeficiency and while the treatment is available, it's also incredibly expensive. Over time, it's likely that Gavin's condition will continue to worsen and he will need higher and higher…

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I have an exciting announcement

So this is pretty exciting. Emmett will be in a martial arts tournament tomorrow morning up in Akron. Every year at the end of the school year, the school invites the kids to participate in a martial arts tournament. In previous years, the tournament was held in Columbus, Ohio and that was a bit too far away for our guys. This year it's in Akron and only about a thirty minute drive. Emmett was all over this when it was announced but Elliott wants nothing to do with it and that's totally okay. Over the past few weeks, Emmett's been working very hard to prepare for this event, including practicing with weapons. He's really excited about that part because he gets to demonstrate how they are used. ☺ Martial Arts…

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The boys don’t have school today but I’ll be there anyway

There's no school in the morning. Some nonsense about end of the grading period or something. Lol Anyway, while the boys won't have school, I'm supposed to meet with the principal about the raffle to raise money for an end of the school year surprise for the kids. They've worked so hard this year and they deserve anything we can pull off. I've been collecting items for the raffle from some very generous companies and I have big box full stuff to help raise money. There are times where this platform I've been blessed to have can be very frustrating. There are other times however, when I'm able to leverage my platform to do some pretty awesome things for deserving people. I'm so grateful to all the companies that are…

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It’s funny how things work out

Tomorrow marks one week since Maggie passed away. I'm not sure if the significance of the day will strike the kids or not but I'm certainly not going to raise their attention to it. We've been preparing for awhile now that Maggie wouldn't be around forever but we had no idea how soon she would be taken. When I stumbled across Ruby a few months ago, I had no idea how important that moment would be. We would have survived Maggie's passing and eventually moved on, because that's the way life is. I will say that having Ruby a part of our lives has made the adjustment a little easier, especially for the boys. She may only be the size of my shoe but she packs a whole lot of…

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If I had known 6 years ago

I've not been feeling well today and I'm getting really tired of it. Everyday it's wash, rinse and repeat. If I had known six years ago that Paxil would be so devastating to come off of, I would have never gone on it.

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Why my day was so stressful

It's been a stressful day for about a million reasons. About half of those reasons were Autism related and the rest were the result of a few other things. I'm still not feeling a hundred percent but I'm probably upwards of sixty or seventy percent lately and that's progress. I'm really grateful for that. We're also coming up on the one week anniversary of Maggie's passing and that's still a pretty fresh wound. It was a rough day. Everything was going okay until the mail came. Inside was a letter stating that we had lost our insurance coverage. More specifically, Lizze and I had lost our insurance coverage. The boys were not impacted and that was blessing. We're on Buckeye insurance, which is a managed care provider for Medicaid in…

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It’s the little things

I've been working to keep everyone in the house as active as possible but the fricking weather isn't wanting to make that job any easier. I think it was five days ago, it was 80°F and now it's snowing again. Lizze doesn't do well in the cold weather but I'm getting the kids out for a little bit at a time, almost every day. Yesterday, we left a bit early for Dr. Patties so the boys could walk around the Garden Center and catch Pokémon. It's way colder than it had been a few days prior, and it was snowing quite heavily. The boys lasted about fifteen minutes before we headed back to the car. While it's not perfect, it was fifteen minutes of activity that they wouldn't have otherwise…

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At least the pain doesn’t last long

Gavin's having a pretty decent day thus far. After taking the kids to school, I took him to get his weekly bloodwork done. Once again, he did great in that regard and now we wait for the results. Unfortunately, while he was walking out of the lab, both his hips popped and he was in a lot of pain. Gavin's joints are known to quite frequently pop out of place. That's not much we can do about that because it's a genetic thing. He did physical therapy for a long time and perhaps we need to revisit that again. He's doing fine now and the pain only lasts a short while. It sucks that it's present at all but at least it doesn't last long.

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