Read more about the article Even if we had the power, would it give us the right?
Autism Parenting Struggles / Gavin / My thoughts

Even if we had the power, would it give us the right?

We have a conundrum and aren't sure what the right thing to do is. In less than 24 hours, we return to Akron Children's Hospital for pre-testing and consultation in regards to Gavin's endoscopy and colonoscopy, which is a bit more complicated because of Gavin's health issues. At this point in time, Gavin either doesn't know or doesn't remember that he's having these done in June 5th. When we arrive at Akron Children's Hospital tomorrow for the meeting, we're going to be going over in great detail, all that's going to transpire. Our concern is that Gavin is going to freak out. For an average person, these things can be scary but for an 18 year old with the mind of a 6 year old, it could end up being…

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May 30, 2018
Read more about the article The plan for today
My thoughts

The plan for today

The plan for today is to work on the house for a little while before going to the park and enjoying the weather. Maybe we'll go for hike in the woods. We haven't done that is a while. The only problem with that Is that Emmett only wears crocs and those aren't conducive for hiking. We'll have to stop every 30 seconds for Emmett to fix them. I heard a rumor that the boys might be spending the night with their Grandparents but I'm not sure if that's actually happening or not. The only other two things on the agenda today is to get the water jugs filled and watch the Cavs destroy the Raptors in game 3..☺  

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May 5, 2018
Read more about the article There is no cure for what my oldest son has but we keep pushing forward
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

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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April 20, 2018
Read more about the article Gavin’s NOT having a good day and it’s taking a toll on all of us
Gavin / My thoughts

Gavin’s NOT having a good day and it’s taking a toll on all of us

Holy shit! Gavin is not having a good day by any stretch of the imagination. He's been on overload all morning long. It's crystal clear that he's extremely stressed out right now and actually in distress. Maybe it's from a long day with his grandparents and not because they've done anything wrong. Gavin had a great time but it still takes a toll. It would be the same thing if he'd been at my parents. This is just the nature of who Gavin is. He's been getting ahead of himself all morning because he's acting before he really thinks about what he's doing. I suppose you could also call this being a bit impulsive. This morning's festivities began when he went to do the dishes. I've always had him throw…

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March 3, 2018
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 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 back on track
My thoughts

I’m back on track

It's been a quiet morning so far. The boys are resting, Lizze is doing research, Gavin's getting ready for his Friday IVIG infusion and I'm working on a bunch of things. One of my main priorities today is making sure I meet my activity goals. I'm currently using the Fitbit Ionic and it's actually quite motivating. I've used the Nokia Steel HR and the Samsung Gear S3 but so far, the Fitbit is topping them both. I'm back on track and losing weight once again. Yay!!! There's nothing on the agenda for today and I'm okay with that. It's been a busy week and I'm on day five of my further reduced Paxil dose. It's actually going better than expected and there's a reason for that but I'll share more…

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January 19, 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