Gavin’s brain is getting worse

Gavin has been having serious mental and physical health problems for almost his entire life. As far as Elliott and Emmett are concerned, they've never known any different. To them, Gavin has always been like this and they never knew him before he began to change. Something that we have probably not done enough of, is sitting the two youngest down and explaining to them what Gavin is going through. There are times that they tease Gavin because they don't realize that Gavin has zero control over his inability to do or not do certain things. As an example, Gavin can't tell the difference between two of our ferrets. Tiny and Lemme do look very much alike but their faces are different. The rest of us can see the difference…

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Gavin did something truly awesome today

I wanted to share something really cool that Gavin did today. Actually, it's a couple of cool things. I don't want to short change him. ☺ This afternoon, Akron Children's Hospital delivered Gavin's IVIG infusion supplies. I physically received them and signed the paperwork. When I brought them into the house, I handed Gavin the inventory list and told him to make sure we received everything we were supposed to get. It was a slower process for Gavin in because he doesn't process things very quickly anymore. That being said, he went through everything, matched it up to the list and identified supplies we were missing. I knew we were missing a few supplies because they were out of stock and scheduled for delivery next week sometime. I didn't tell…

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#Autism Parenting: Let this be a lesson in what not to do

I wanted to take a minute and talk about a mistake I made in regards to my kids with Autism, specifically Emmett. I've been working on this unboxing project and have had an unbelievable response from really big companies. A huge box arrived today from the awesome people behind Hexbugs.. Here's where I made my mistake. I was so excited to hear that they wanted to take part in this project by sponsoring a video, that I couldn't wait to tell Emmett. Emmett is a Hexbug fanatic and has been since he first discovered them years ago. I knew they would be arriving today, but I didn't know what was going to be in the box. I wasn't thinking when I told Emmett about this because I told him about…

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It all worked out well

For the first time in a long while, we were able to sleep in today. In fact, Lizze is still sleeping. She's been sick for awhile now and because of the weather, she's been in a tremendous amount of pain. She's deserves to have a day like this. We have nothing to do and it's not hurting anything. ☺ Gavin been playing a new game in his tablet and keeping updated about his progress every few minutes. Yes, it's super annoying but he's so excited and proud of himself . I'll just continue to suck it up, it's for a good cause. Right now, I'm just waiting for the boys to get dismissed. We have to swing by my parents house and pick up their clothes from last night. After…

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Why the NeuroPsych testing is so important

I know is there isn't anything that I can do but I'm really upset that Gavin's testing was canceled. The last time he had NeuroPsych testing was on 7/01/2014. I know that because I pulled his report. I thought it was longer than that but I guess not. There are a few reasons that this test is so important. The first is that it gives us a complete picture of where he is, how he thinks, what his capabilities are, where his weaknesses are and what we can do to help. One of the big take aways from last time was learning how Gavin's memory worked. He struggles with memory big time but at the time of his precious testing, they discovered that his brain is retaining the information but…

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We had a big surprise tonight

It's a school night and we are down two kids. Even though Gavin's appointment was canceled, my parents took the two boys overnight and will them to school anyways. This was really amazing because we haven't had a break from the boys in a long time. Gavin stayed with us and we decided to take advantage of this. We took Gavin to dinner and then to see the new Thor movie. He was funny because the movie didn't start until 8:30 PM and he was so worried about missing his bedtime. lol The movie was amazing and Gavin was so tired after. Gavin is very focused on his schedule and routine, disrupt it at your own peril. It's good to sometimes disrupt his schedule or routine every once in awhile…

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Bad news

I've been continuing to follow up in regards to Gavin's NeuroPsych testing scheduled for tomorrow. After a few attempts to connect with our case manager, I haven't heard anything back. As a result, I called the Cleveland Clinic directly, checked on the status and I'm glad I did. Insurance has denied Gavin's claim three times this week already, the last being yesterday. Unbeknownst to me, the appointment had been canceled. I'm glad I did my due diligence because otherwise I would have hauled Lizze and Gavin to the Cleveland Clinic at a Godawful hour, only to find that we no longer had an appointment. The only reason I would have assumed anything in the morning is because I was told by the Cleveland Clinic eariler in the week that the…

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Never take this shit for granted

We've made tentative plans to have the boys spend the night with my parents because we may have to leave for the Cleveland Clinic around 6 AM. I've reached out to our case manager for an update and I'm waiting to hear back. Something that's really important to me is that we always stay on the same page as our parents, when it comes to watching the kids. When they are kind enough to watch the kids for us, we make it a priority to keep them up to speed on any changes to our plans, even if they're only potential. I think it's just a courtesy that they deserve because they are helping us out in a big way and I don't like springing any changes on them if…

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