Read more about the article The single biggest reason I’m worried about our emergency psych appointment today
Gavin / My thoughts

The single biggest reason I’m worried about our emergency psych appointment today

Lizze and I reached out to Gavin's psychiatrist's office because we're growing increasingly worried about his worsening level of lethargy. I mentioned eariler that they were our first stop because if this is medication related, it's probably the Clozapine. Since they manage the Clozapine, it makes sense to begin there. My email was returned within minutes and we got an appointment right away. I'm not sure if that's just convenient or both convenient and scary. It's impossible to get into Gavin's doctor and we literally received an appointment for the same day, scheduled for about an hour after I sent the email. I don't think there's anything medically significant to worry about there is still one reason to be very concerned. We could end up having to either cut back…

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June 19, 2018
Read more about the article The #1 reason I’m grateful for days like today
My thoughts

The #1 reason I’m grateful for days like today

This morning, Gavin had the last IVIG infusion that we have supplies for. Now is when I start to get anxious and stress out because it's become another episode of hurry up and wait. I hate that. His doctor is still working out the details and getting insurance approval. As soon as they know, we'll know. I'm a bit worried about Gavin because aside from his infusion, he's spent most of the day sleeping. He woke up a little bit ago, came downstairs and announced he needed to go back to bed. Lizze and I made him stay up and move around a little bit. We're concerned that he's sleeping way too much. As long as he's okay, we want him to move around a bit see if he can…

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June 19, 2018
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 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 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 The doctor called with heartbreaking news
Common Variable Immunodeficiency / Gavin / My thoughts / Thoughts and Prayers

The doctor called with heartbreaking news

I received a call today from Gavin's doctor. When I saw who it was, my stomach knotted up and my heart sank. They never call unless it's bad news. I was right. Apparently, Gavin's numbers are crashing again. I'm currently waiting for him to come out from having his labs drawn for the second time in three days. I didn't get all the numbers but they informed me that his Absolute Neutrophil count (ANC) dropped from 2.9 to 1.8 in less than a week. This is not a good thing and I wish I knew what was responsible for this but no one knows for sure what it is. The most likely culprit is the Clozapine but it's also possible it's part of his CVID (Common Variable Immunodeficiency) as well.…

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February 8, 2018