childhood disintegrative disorder Archives - Page 166 of 276

How a tiny brown bat helped me teach my kids a valuable life lesson

We had a pretty good day in our little corner of the world. The boys went to a cookout with Lizze's parents, Lizze rested because of a really bad migraine and I hung out with Gavin. This whole thing with Gavin sucks but we're making the best of it. In an effort to make Gavin's situation suck a little less, I put together a pizza and movie night for the family. We watched Ready Player One and had Marcos Pizza. The movie was probably among the best I've ever seen. The kids loved it and can't wait to watch it again. We had a nice quiet evening at home and made the best the situation in which we find ourselves. You always need to try and make the best of…

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July 9, 2018

Gavin / My thoughts / Schizophrenia / YouTube Video

Talking with a #Schizophrenic Part 2

In Part 2 of Talking with a Schizophrenic, Gavin details his latest mission to save the timeline from his evil self. It's very important to understand that this is not an issue of an overactive imagination. If you missed Part 1, you can find that here. In Gavin's mind, these things are actually happening and they are very real. He does his best to recount his actions but struggles with memory recall. He's very proud of these missions, wants to share them and truly believes he's saved the Universe. We don't feed the delusions but we don't challenge them either. Our job is to listen when he wants to talk because as long as he's comfortable telling us these things, we have a much better understanding of where he is…

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July 8, 2018

Autism Parenting Insight / Inspirational Posts / My thoughts

The #1 thing all #Autism Parents worry about and it’s not what you think

Over the last decade, I've put a great deal of focus on the fact that all people touch by Autism are unique and not cookie cutter copies of each other. I also stressed the same applies to Autism families as well because no two are exactly the same. Both of these statements are true and sadly, too many people still don't grasp this concept. Stereotypes and assumptions still abound when it comes to anything Autism related. This post isn't about reiterating the same old facts all over again. Instead, this post is about the number the one worry that all Autism parents share. Aside from loving our kids with Autism unconditionally and without limits, this is one thing that in my experience is absolutely universal. One might assume that we…

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July 8, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

My wife and I have made a very difficult decision

I haven't heard anything about Gavin's IVIG infusion meds yet and he will be missing his sixth infusion in a row on Monday. As a result, Lizze and I are having to make some difficult decisions. It's completely reasonable to assume that with every missed infusion, the risks to Gavin's health increase. We don't know anything for certain or to what degree the risks increases but I think it's perfectly reasonable to take precautions at this point. With that being said, Lizze and I have decided not to expose Gavin to large groups of people. Things like crowed movie theaters, family gatherings and even the grocery store are needless risks. Again, we know for sure is that he has a severely compromised immune system. We know for sure that he…

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July 8, 2018

Gallery / Guy Time / My thoughts

Guy Time at Quail Hollow with my #Autistic kids

Lizze was still in a bad place yesterday. She was in so much pain, she could barely move. Unfortunately, that put a dent in our plans to take the boys hiking at Quail Hollow. We ended up having Lizze go back to bed to get some rest, while I took the boys on my own. Lizze needed the time off and the boys really wanted to go back to Quail Hollow. I figured that we could probably use some guy time anyway. We hit the trails that we missed the first time around and hiked for a little under 2.5 miles. Everyone did great and we had alot of fun. It was probably the first day in a week where the heat index wasn't over 100°F. The weather was warm…

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July 7, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

The doctor called and I learned something very interesting

Gavin's awesome immunogist just called and wanted to know what was going on. I explained what I was told by the pharmacy and she was frustrated by it as well. Neither of us are sure what's going on and why there's such a delay. She's going to get to the bottom of this, one way or another. I also learned something very interesting. When I asked her about running Gavin's labs to see where he was at, she explained that when we do that, he has to be off of his infusions for three months. I wasn't able to really ask why three months? What that tells me is that if we can go three months in order to test his levels or see how he does on a break,…

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July 6, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Even if we’re overreacting, I can live with that

Until we're given other instructions, we will not be taking Gavin anywhere there are crowds of people. I've left messages once again today in regards to Gavin's IVIG infusion medication and I'm waiting to hear back. At this point in time, and in the absence of definitive information one way or the other, we're going to assume that Gavin is at risk. That's simply the safest approach we can take at this time. Currently, Gavin's feeling okay and on the off chance we're overreacting, I can live with that. What I can't live with is not taking this seriously and having something happen.

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July 6, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / Inspirational Posts / My thoughts

The #1 reason I’m so angry tonight

I'm trying to do many things right now and one of them is fight off my anger. I think one of the reasons I do as well as I do under all this constant stress is that I don't get angry. I really don't get angry, and if I do, I don't hold onto the anger. Being angry is like drinking poison and expecting it to effect someone else. It's destructive and has little place in my life. Having said that, I'm fucking angry right now. We've been dealing with this GAMMAGARD shortage for over three weeks and Gavin's last IVIG infusion was on June 18th. Today marks the fifth IVIG infusion in a row that he's missed because we can't get his fucking medication. Gavin has Common Variable Immunodeficiency…

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July 6, 2018