The best news we’ve had in a month

I received a call from Akron Children's Home Health, the pharmacy we get Gavin's IVIG infusion medication and supplies from. Everything is set and Gavin should have his new medication on Thursday morning. There was a slight delay because apparently, there were special contracts that needed to be signed in order for them to even carry the new medication. We also have a bit of trial and error ahead of us as well. They are sending out the tubing they believe is correct for Gavin's IVIG infusion. The medication is supposed to be infused over a certain period of time. The pharmacist wants to get things down to about sixty minutes per infusion. If the tubing works as expected, they will send out more. If it doesn't, we will try…

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Gavin’s surgery is now uncertain

Gavin's supposed to have an endoscopy and a colonoscopy done at Akron Children's Hospital next week. They consider this surgery and refer to it as such, so I'm doing the same. I received a phone call this morning from his Gastroenterologist. This is the doctor who ordered the non-urgent but medically necessary procedures. As a result of Gavin's recent issues surrounding his IVIG infusions, he now will need medically cleared in order to proceed. They need his immunologist to sign off on the procedures and unfortunately, she won't be back in the office until Monday and we may need to make an appointment for him to get checked out. That may be cutting things a bit close. Assuming that Gavin's IVIG infusion medication shows up this week, he should be…

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This 1 single decision, turned our entire day around for the better

On multiple levels, it's been an absolutely exhausting day. I found myself dealing with a great deal of frustration all morning. I spent hours on the phone trying to get Gavin's IVIG infusion medication situation resolved and it seems like it's been resolved. See: We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason By the time I got through all that stuff, I was heading down a path of anger and I really didn't want to go there. Getting everything resolved was a very good thing but it's been an exhausting, scary and frustrating process. It just all came to a head this morning and I became angry because Gavin had to go through all of this.…

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We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason

I've just spent the last three hours on the phone, bouncing between Gavin's doctor, the specialty pharmacy and insurance. I swear to God, if I had hair, it would be all over the floor right now. After three fricking frustrating and grueling weeks, we've finally gotten to the bottom of why Gavin's infusion medications are still not available. I'm going to skip the nightmarish phone calls and the fact that Gavin's doctor and her entire office is gone for the whole week, without an on call person, according to the answering service. Instead, I'm going to simply explain what caused this giant cluster fuck and it is/was a giant cluster fuck. I just got off the phone after speaking to a very determined person with Gavin's insurance provider.. We couldn't…

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My #1 hope for this week

In a continued effort to remain positive in an otherwise less than positive situation, I thought I would approach this post a little differently. Rather than focus on what hasn't happened, I'm going to focus on what I hope to see happen. Maybe this is semantics but I feel like it's a more positive take and I'm going to roll with it. There are a couple of things I hope will happen this week. Generally speaking, I'd like to find inexpensive ways to keep my family active, and exploring what Mother Nature has to offer. I'm really pushing for a healthier lifestyle and trying to do that with our current set of limitations, can prove to be tricky but not impossible. My number one hope for this we is that…

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Hiking at @StarkParks Sippo Lake with our #Autistic kids

I'm way behind on this particular post because it's been a long week. That being said, I wanted to share pictures from our hike at Stark Parks Sippo Lake. We planned this day trip the night before and it was only about a twenty-minute drive from our house. This particular hike was a bit less aggressive than our previous hike at Quail Hollow a few days prior. The path took us on about a 1.8 mile journey through lightly wooded and marshy areas. While we prefer the more off the beaten path kinda trails, this was still absolutely beautiful. The boys struggled with this one more than they did at Quail Hollow and that hike was over a mile longer. I think the problem was the crushed limestone path. The…

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2 very important, but slightly delayed updates

I meant to share this eariler but frankly, it still isn't finalized and nothing has actually changed yet. That said, I finally heard back from Gavin's immunologist about the issues with his GAMMAGARD. They hadn't reached out because they were still trying to get everything approved. The got everything approved but insurance screwed up and approved the wrong pharmacy. You can't get these things at just any pharmacy. The pharmacy has to agree to certain terms and there's a lot of red tape. Approving the wrong pharmacy doesn't do us any good because everything is at our pharmacy. I don't know if that makes sense. Basically, insurance made a mistake and the doctor has not be able to reach them to get it fixed. Calls aren't being returned, at least…

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My youngest just hit double digits

Our day was fairly nonstop and I didn't get a chance to post this eariler. Better late than never. Emmett turned 10 years old today and he had a great birthday. We try to plan far enough in advance that we can pull things off. Anyway, Emmett is obsessed with Nerf Guns and he got what he calls the ultimate Nerf Gun today. Apparently, we did good. We had a busy but mostly low key day. We decided to celebrate his birthday in the early afternoon. It was pretty simple but it made him happy and that always feels good. We had ice cream cake before he opened his birthday presents. There were a few appointments this afternoon but we were done about dinner time. I cooked a couple pizzas…

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