With all the recent talk surrounding Gavin's immunological issues, I thought I would put something together that would help to educate those among us who may not know what CVID is or what it means to be diagnosed with it. Here's a quick 5-minute rundown or what Common Variable Immunodeficiency is and who it impacts Gavin. https://youtu.be/VvuuWe-8QR4
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…
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.
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.…
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…
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"]
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…
I'm so used to being an Autism parent that very little surprises me anymore. There are times however, that one of my kids does something that is so obviously Autism related in nature, that I can't help but stop and smile. ☺ Yesterday, I made a quick trip to the grocery store and Emmett helped put the groceries away when I got home. Putting the groceries away turned into reorganizing the refrigerator in a way that made sense to him. I couldn't help but smile and I snapped a picture and thought I would share.. ☺