IVIG Infusion Archives - Page 166 of 181

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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July 10, 2018

Day Trips / Family Time / My thoughts

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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July 10, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

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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July 9, 2018

My thoughts

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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July 9, 2018

Emmett John / My Projects / My thoughts

Taking a project with my #Autistic son today

The insanely hot weather has defeated us again today. We were going to go hiking but it's simply too hot and we'd be inviting trouble. Instead, Emmett and I are going to take on a little plumbing project that needs to be done. Yesterday, Gavin accidentally clogged our broken garbage disposal. It hasn't worked in a very long time but we only ever have running water to that side of the sink, at least that's all it supposed to have. I never removed it because it just wasn't a priority and we were hoping to actually replace it. Gavin dumped food down there yesterday and it's now clogged. It takes hours for water to drain now and there's no point in trying to tear it apart in order to unclog…

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July 1, 2018

Day Trips / Family Fun / Gallery / My thoughts

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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July 1, 2018

Autism Parenting Insight / My thoughts

Dear #Autism Parents, I know how it feels

The stress level in the house is pretty high today. I'm not sure exactly what this high level of stress stems from because it's probably not one single thing. We're worried about Gavin's immunological issues, countless growup issues that we shield the kids from, and all the other things that go along with being a special needs family. While we're getting out of the house on day trips, Lizze and I haven't had a night to ourselves in a long time. Any parent can go crazy without time to themselves. As special needs parents, we almost never get time to ourselves and the extreme toll it takes on our physical/emotional well being is very real. Lizze and I are burning out. In our lives, there is simply too much to…

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June 28, 2018

Gavin / My thoughts / Updates

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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June 27, 2018