Read more about the article The solution to Gavin’s immunology crisis was completely unexpected
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

The solution to Gavin’s immunology crisis was completely unexpected

We've been so stressed out since learning about the GAMMAGARD shortage. GAMMAGARD is the medication used to treat Common Variable Immunodeficiency, of which Gavin has. Basically, GAMMAGARD is donor antibodies from thousands of people and is used to replace Gavin's broken immune system. There is a nationwide shortage of GAMMAGARD and that presents huge problems for Gavin. Without treatment, Gavin doesn't have a functioning immune system and for those wondering, that's not a good thing. We had our emergency appointment with his immunologist this morning and everything went smoothly. Without going into great detail because I'm just not in the mood to do so, I'll sum things up. The manufacturer of GAMMAGARD says its on back order. From what we've heard, it sounds as though this is a manufactured shortage…

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June 18, 2018
Read more about the article The plan for today
My thoughts

The plan for today

The plan for today is to work on the house for a little while before going to the park and enjoying the weather. Maybe we'll go for hike in the woods. We haven't done that is a while. The only problem with that Is that Emmett only wears crocs and those aren't conducive for hiking. We'll have to stop every 30 seconds for Emmett to fix them. I heard a rumor that the boys might be spending the night with their Grandparents but I'm not sure if that's actually happening or not. The only other two things on the agenda today is to get the water jugs filled and watch the Cavs destroy the Raptors in game 3..☺  

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May 5, 2018
Read more about the article There is no cure for what my oldest son has but we keep pushing forward
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

There is no cure for what my oldest son has but we keep pushing forward

Eariler today there was a knock at the door. It was Akron Children's Hospital delivering Gavin's IVIG infusion supplies. I guess I didn't realize it was already that time of month again. Gavin has been getting these delivers for more years that I care to remember and as much as I hate the fact that they're necessary, they are. These supplies allow for his twice a weeky IVIG infusions. Without these infusions, Gavin wouldn't have a functional immune system. It's a heartbreaking reality that people like Gavin and families like ours have to live with. There's no cure for Common Variable Immunodeficiency and while the treatment is available, it's also incredibly expensive. Over time, it's likely that Gavin's condition will continue to worsen and he will need higher and higher…

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April 20, 2018
Read more about the article It’s getting harder to cope
Gavin / My thoughts

It’s getting harder to cope

I'm having a harder time coping with Gavin lately. God forgive me but he's driving me fucking crazy and I simply don't have the patience he deserves to receive from me. It's important to understand that Gavin's isn't necessarily doing anything wrong. He's just being Gavin. The emotions I'm experiencing in regards to coping is probably two fold. It's part frustration because Gavin's functioning at maybe fifty percent of what he was, say two years ago. The other part is pure, unadulterated heartache because he's only functioning at maybe fifty percent of where he was two years ago. The frustration and heartache are very real. They are very, very impactful emotions, that are at odds with each other. I find myself frustrated by his behaviors and exhausted by how difficult…

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March 26, 2018
Read more about the article There are times as his father, I have to turn away and cry
Gavin / My thoughts

There are times as his father, I have to turn away and cry

Lizze and I had a fairly decent night to ourselves. The E's were at their Grandparents but Gavin was home. It's not really a night off, even with Gavin being the only one home. Gavin is becoming more and more difficult to manage. That wears heavily on us both physically and emotionally. It's physically exhausting because it's physically exhausting. It's emotionally exhausting because it's painful beyond my ability to articulate, seeing Gavin decline to the extent he has. Heartbreaking is probably a better word choice. Gavin is such a sweet kid but he's 18 years old and we have to seemingly micromanage his every move. We have to make sure he doesn't hurt himself doing something he shouldn't. We have to make sure that all the things that he doesn't…

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March 25, 2018
Read more about the article It was a disastrous morning for Gavin
Gavin / IVIG Infusion / My thoughts

It was a disastrous morning for Gavin

It's been a really rough morning. I've been fighting off a stomach bug for most of the week and it's not been pleasant. I've actually not been eating much, so might be a great time to weigh myself.. Lol Anyway, Gavin did not have a good morning. His IVIG Infusion pushed him over the edge, down the street and around the corner. He was completely freaking out and there was very little consoling him. He setup his own infusion again and did a great job. He picked new locations to stick the needles but unfortunately, both infusion sites leaked and required re-sticking, which he's not a fan of, like at all. It sucks having to do this once but twice is double the amount of pain and anxiety for him.…

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March 9, 2018
Read more about the article Gavin’s IVIG infusion is NOT going well
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / Vivint Gives Back

Gavin’s IVIG infusion is NOT going well

Gavin's IVIG infusion is not going well this morning. For some reason, we can't get any flow and I'm having to force the solution through the tubing manually. It works but it's very difficult and quite painful for a Gavin. I don't know what's wrong for sure, but it could be scar tissue. All I can do is continue to force it through or re-stick the needles in his belly. Gavin wants to avoid being re-stuck and I don't blame him. Hopefully, this will finish up sometime this afternoon and he will be okay. I'm just going to keep an eye on him through the Ping camera from Vivint Home. I've found so many uses for this system but the best have involved using the cameras to monitor my kids…

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February 26, 2018
Read more about the article Gavin’s not having a good day
Gavin / My thoughts

Gavin’s not having a good day

Gavin's having a rough morning. For starters, his routine is thrown off because he's not getting his bloodwork done today. The new day for that is Wednesday's. His IVIG infusion is leaking from the left needle and that always freaks him out. It's pretty easy to fix but it's not without additional pain. It's good that he's working through it but it's not very graceful.. Lastly, and this one is driving me crazy. He has been nonstop complaining about a hang nail on his right index finger. All of the crazy things he's endured or is currently enduring, and the kid is freaking out over a hang nail. He's always been this way and they tell me it's sensory related. Back when he suffering from very serious behavioral problems, he…

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February 12, 2018