I have GOOD news and BAD news

I'm going to start with the good news first because I feel pretty good about the good news. ☺ We celebrated Gavin's birthday today and I think he really enjoyed it. I picked the boys up from school and took them to pick out some things for Gavin that could be from them. We then picked up his cake and ordered Chinese food. It went pretty smooth and I'm grateful for that. Gavin decided on the 1st Transformers movie and we all watched it with dinner. He's really happy with everything and that feels good. He spent all morning playing Kingdom Hearts III and he says it was worth the wait. ☺ Unfortunately, this couldn't just be a good day. There's always a counter weight that seems to keep things…

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It’s official, schools closed for 2 days and Gavin’s medication still hasn’t arrived

It's official.. There is no school for the next two days due to insanely cold tempratures. Friday is a bit iffy at this point but we'll know more as the week progresses. The boys are excited but also disappointed because they really enjoy school. With that out of the way, it's also official that we don't yet have a working solution for Gavin's IVIG medication shortage. They (Gavin's immunologist and Akron Children's) are still trying to work out the details of a replacement medication. This takes a bit of time because they have to navigate insurance and that's tricky on a good day. They also want to be very selective with the new medication because we don't want to have to change again. They want to find a medication without…

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How is this even f*cking possible?

While I was driving the kids to school this morning, I received a phone call from Akron Children's Hospital. It was the delivery coordinator for Gavin's IVIG infusion supplies. I could tell by the frustration in his voice that I was going to need a few minutes. I spoke with him before walking the boys into the school and working on the Emmett stuff from the previous post. Turns out Gavin's supplies aren't here because there's another nationwide shortage of his life saving medication. It's literally impossible to get and the only option is to switch him to a new medication for a third time. This is never a good thing because we have no idea if the medication will work for him or if he will have a bad…

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Gavin’s #IVIG infusion supplies never showed up and that worries me

Without going into the backstory again, Gavin is on IVIG twice a week because of his severely compromised immune system. You can read that backstory here. We received a notice from his insurance that they were no longer working with his current, longtime supplier and would be switching to a new company. This is potentially very problematic because this needs to run like a well oiled machine or there can be delays in his deliveries and that could potentially be life threatening. Lizze and I haven't even had a chance to call about this and we're already having a major problem. Gavin supplies were due to arrive last Friday and they never did. They also never arrived today and that means he's missed his infusion. He's missed quite a few…

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We got some insanely good news

I wanted to drop you a quick line to share a bit of insanely good news. Let's be honest, it's been a little while since I've had some really good news to share. Well, you can reset that counter because I have some good news to share. ☺ Yesterday morning or early afternoon, I got a call from Akron Children's Home Health. They were able to secure a month's worth of Gavin's IVIG Infusion medication. It's a bit different this month though. Rather than using two vials for his infusion, he'll need to use three. It's the same medication but in a different concentration. It's not a huge deal and an easy trade-off. Not only did they secure the medication, they even got it delivered the same day. Gavin was…

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This is a perfect example of why being a #specialneeds parent can be so exhausting, frustrating and overwhelming

We're not off to a good start today. I basically woke up to Elliott and Emmett fighting and it went downhill from there. I could have weathered the fighting but then Gavin entered my morning with news that very much pushed me over the edge. Gavin casually approaches me and tells me that he's only got enough tubing for one last IVIG Infusion. I told him that's not possible because as you can see in the image below, there are supplies for 8 complete IVIG Infusions for the month of October. Maybe you can't see that from the image but I confirmed upon delivery, that he was not shorted anything. Gavin should have enough supplies to do 4 more IVIG Infusions this month and he's basically saying that he's missing…

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