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 We have some difficult decisions about Gavin’s heath to make today
Common Variable Immunodeficiency / Gavin / Immunology / My thoughts

We have some difficult decisions about Gavin’s heath to make today

It was a rough night and a challenging morning. It's a big day and it's made worse by my lack of sleep. That being said, we've made it to our appointment with Gavin's immunologist. We actually made it about 20 minutes early as well. Traffic was much kinder to us than I had anticipated. Now we have some very, very difficult decisions to make about the future of Gavin's health.

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June 18, 2018
Read more about the article Do you ever feel like it’s all falling apart?
My thoughts

Do you ever feel like it’s all falling apart?

Generally speaking, I'm a happy, healthy and optimistic person. I tend to see the good in everyone and always try to see the positive side of things. Sometimes though, there's no amount of positive thinking that can make life more bearable. Sometimes life just sucks and the only thing left to do is white knuckle it. For the last few days, it would be fair to say that I've been white knuckling it. As a result, my head can take me to some darker places while I'm trying to work through everything. One of the things about my life and the lives of others in similar circumstance is that nothing ever really slows down. There really aren't any significant, meaningful breaks and it's essentially go go go until you crash.…

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June 17, 2018
Read more about the article This Father’s Day, we’re standing at the crossroads of history
My thoughts

This Father’s Day, we’re standing at the crossroads of history

I want to take a minute and say Happy Father's Day to my Dad, Father in law, 2 of my brothers and to all the Dad's out there. You guys are all awesome. ☺ I also wanted to thank my family for making me feel special today. I love you all. For the last decade-ish, I've been blessed with a platform that reaches quite a few people, from all parts of the world. I've been fortunate enough to make connections with families from places I didn't even know existed until then. While my platform isn't nearly as big as many others, I feel compelled to use my platform to benefit those within the Autism and Special Needs Communities. There are times however, when something is taking place in our world…

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June 17, 2018
Read more about the article We had a nice little family outing
Family Fun / Gallery / My thoughts

We had a nice little family outing

In an effort to make the best of the time we had yesterday, I packed everyone up, including Ruby and we hit a local nature trail. We only took the trail for about 1.5 miles but it was fun. Afterwards I took everyone for some ice cream before heading home and having a quiet evening. [foogallery id="81113"]

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June 17, 2018
Read more about the article It’s so hard not to worry
Common Variable Immunodeficiency / Gavin / Immunology / My thoughts

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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June 16, 2018