IVIG Archives - Page 2 of 95

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…

0 Comments

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,…

0 Comments

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.

1 Comment

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…

5 Comments

July 6, 2018

Autism Parenting Insight / My thoughts

2 main reasons why @Philips hue bulbs and motion sensors have saved my sanity (@tweethue)

I've not written about this before but one of the things that drives me crazy, is the kids leaving lights on when they leave the room. More than that, it drives me crazy that they keep their lights on during the day in the first place. This has been an ongoing problem because the boys don't feel comfortable in a room without the lights on. They leave said lights on when they leave because that way the lights are on when they return. This is an Autism related thing for them. More specifically, it's probably mostly sensory in nature but I have heard of many other parents struggling with the same thing. As the person struggling to pay the electric bill, this drives me crazy because it's a waste of…

1 Comment

July 5, 2018

General Update / My thoughts

3 interesting updates

This is just a quick, general update because I'm stretched kinda thin at the moment. We'll begin with the the forth of July. Rarely does a year go by where we aren't having to call the police because some idiot is lighting off illegal fireworks next to our house. This year was no exception. Although, we didn't have need to call the police until almost midnight this time. Look, we celebrate the forth of July and I love our country too. What I cannot accept is when people don't care how their actions impact their neighbors. Random people were setting off fireworks on our street throughout the day. As long as what they are doing doesn't hit our house, we usually don't care. The boys struggle with the noise but…

0 Comments

July 5, 2018

Gavin / My thoughts / Schizophrenia / YouTube Video

Talking with a #Schizophrenic Part 1

In this video, I listen to my son with both Autism and Schizophrenia, tell me about a mission he must go on to save the universe. This is typically the nature of his Schizophrenic hallucinations. This is NOT his imagination. This is how Schizophrenia impacts his life. The purpose of this video is to educate, provide insight and destigmatize mental illness. It's important that I be supportive without playing into his hallucinations. It's a very fine balance. We never challenge his hallucinations because that could prove to be potentially dangerous to us and harmful to him. When you're done, Part 2 can be found here. Be sure to SUBSCRIBE for the latest updates and educational videos release on my YouTube Channel. https://youtu.be/OV6k-s0I71Y

2 Comments

July 5, 2018

My thoughts

It’s been a pretty good day

We've had a pretty good day thus far. Lizze and the E's did great in their two mile race this morning. They walked with my Mom and sister in law. They were actually among the first walkers to finish, with a time of roughly 45 minutes. The only issue we ran into was the extreme heat. By 9 AM the heat index was already in the mid 90's and I think it took a great deal out of Emmett because had a series of smaller meltdowns in the hour that followed. We had a nice brunch afterwards and celebrated Emmett's birthday with my family. I'm in a good mood but I don't feel very well. Hopefully, I can snap out of it after a pop an Advil. As for the…

0 Comments

July 4, 2018