It’s so hard not to worry

As the day has gone on, Gavin's sounding worse and worse. That doesn't mean there's anything to worry about but I worry nonetheless. He's most likely dealing with the same cold that Elliott and Emmett keep giving back and for to each other. Logically, I don't think that there is anything to lose sleep over but at the same time, we can't afford to be complacent either. Monday he sees his immunologist anyway and if she's concerned, we'll deal with it. He's probably going to need bloodwork done so we held off on Gavin's labs for this past week and figured we could double dip when she gives us a new order. There isn't a great deal that we can do to help Gavin but if we can limit his…

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There’s only 1 thing that could make things worse and it just happened

I have been sharing how stressed out and worried I am over Gavin's current immunological crisis. I consider it a crisis because there is a nationwide shortage of GAMMAGARD. This medication literally replaces his broken immune system and keeps him from getting sick or worse. Until we resolve the issue and solidify a working plan for moving forward, I consider this a potential life threat and therefore a crisis. The only thing that could make this particular situation worse is if Gavin were currently sick. Unfortunately, that has come to pass because Gavin is currently sick with whatever Emmett and Elliott have been fighting off. We're probably looking at a simple cold but when your child has a severely compromised immune system, only one dose of GAMMAGARD left and no…

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My #1 take away from today

I'm going to sum things up for today pretty quickly because I'm really tired and hope to actually sleep tonight. My number one take away from today is pretty straightforward but also very positive. I spoke with legal at Akron Children's Hospital and seem to think that gaining medical power of attorney will work. They need to double check a few things and they will get back to me. This is enormously positive news and while we don't know anything for sure, it sounds like it will all work out. ☺

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This 1 idea may solve our current guardianship difficulties

Gavin had therapy tonight and while some of the time was spent on Elliott, the rest of the time was spent on Gavin. There are a million things to worry about in regards to Gavin and it's impossible to take them all on at the same time. We have to triage everything and focus on what's most important in the moment. As of yesterday, the priority was getting guardianship over Gavin in order to continue taking care of him, as he's legally an adult. We were hit with the reality that we are going to need an attorney that we can't afford and I was feeling a great deal of stress as a result. That was a newly minted problem and we hadn't even begun to process it and we…

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1 phone call has sent me into a complete panic

I wrote about frustrations and explanations for why guardianship hasn't been completed for Gavin. I was explaining how things keep coming up that force us to reprioritize everything. See: I'm going to need an attorney. Not twenty-four hours go by and we're slammed once again, with yet another potentially life threatening issue. I received two very early morning phone calls today. One of from the pharmacy responsible for managing Gavin's IVIG infusion supplies and the other was from his immunologist. Turns out that there is an ongoing, nationwide shortage of GAMMAGARD, the life-saving medication that consists of donated antibodies from thousands of people, used to provide Gavin with a temporary, functional immune system. Gavin has something called Common Variable Immunodeficiency, see What the Hell is Common Variable Immunodeficiency. In laymens…

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I’m going to need an attorney

I spent the afternoon, going through the paperwork that needs to be finished up in order to file for guardianship of Gavin. I'm not sure Lizze and I can both be guardian's, as the paper only references one person or applicant. Maybe I'm wrong. I'll be very honest with you. While we haven't blown guardianship off by any means, it hasn't always been the number one priority either. When you're a special needs parent, there are always things that come up and we're forced to reprioritize. It's not that guardianship isn't important because it's extremely important but between other health related issues, both physical and emotional that pop up, there's only so much we can do. We've been in a slight holding pattern because we have to get paperwork back…

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1 more reason my heart is breaking tonight

I've talked many times about Gavin and his many challenges. I've confessed to being frustrated and overwhelmed by his behaviors on many occasions as well. It's no secret that everything he goes through is absolutely heartbreaking to me. I think it would be for anyone with a soul. One of the reasons that it's so heartbreaking for me is because while it's true that Gavin is blissfully ignorant of his challenge on most days, there are days he becomes aware of them. Yesterday was one of those days where my frustration got the better of me and it just happened to coincide with Gavin being aware of something he was struggling with. I don't remember everything that happened because frankly, there was just too much to remember but it basically…

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Gavin’s IVIG infusion is NOT going well today

Gavin's been undergoing his IVIG infusion for over five hours now and it's still not done. This is not a good thing because he's getting extremely anxious and understandably so. This usually comes down to needle placement and because there's only so many locations in his belly to place both needles and because there have been roughly 5,826 total needle sticks into his belly thus far, scar tissue is a problem. I suspect scar tissue is the leading cause of today's complications. As a result, what should take roughly an hour is dragging out into almost six hours. There's nothing we can do but let it run its course. The IVIG Infusions are absolutely crucial to Gavin's survival. We can't just write it off because it's taking too long. Hopefully,…

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