IVIG Archives - Page 35 of 95

Do you know why #Autism Parents worry so much?

It's not easy to explain how anxious I am tonight. I'm anxious because I haven't yet received Gavin's lab results from yesterday. This doesn't necessarily mean anything good or bad, they just haven't gotten them back yet. As a special needs parent, it seems like there's always something to worry about. Special needs kids can be so complex and their respective conditions can make life extremely complicated. There's always something to worry about because there's literally so many things that can go wrong at any given time. I'll be the first to admit that I'm guilty of waiting for the other shoe to drop but it's not because I'm negative. It's because there's always another shoe to worry about. I've spoken with countless special needs parents over the years and…

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October 31, 2017

My thoughts

Things were going so well

Lizze is still sick and currently sleeping for a little bit. I made dinner but only Gavin and I ended up eating. Elliott's even doing relatively well with working on his makeup homework in 20 minute increments. If a little bit, we're going to set the Ferrets free and I'm going to trim their nails. Letting the Ferrets loose is always a fun thing for everyone and we always look forward to it. Afterwards, Gavin will need his IVIG infusion started and that will hopefully be the end of my evening. Lizze will take over and put the kids to bed while I catchup on some work. I was going to say that things were looking positive tonight but before I could finish that sentence, Emmett and Elliott erupted into…

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October 30, 2017

Elliott / Emmett John / Meltdowns / My thoughts

The black and white, very literal world of #Autism

It seems that the boys had a decent day at school today, although Elliott said it was terrible because of all his makeup work. The moment Emmett got into the car though, he just screamed and screamed. He screamed the entire way home, because communication is a challenge. Yesterday I told Emmett that I would try to swing by my parents house and pick up their candy, because they were unable to go trick or treating. As it turns out, I took Gavin to get his bloodwork done and I realized that we were very low on gas. I don't get paid until Wednesday, assuming everything comes in on time. The bottom line is that I didn't get their candy bags and he had been counting the minutes until school…

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October 30, 2017

Elliott / Emmett John / My thoughts

It seems they made it through the school day

Elliott made it through the entire school day and that's definitely a step in the right direction. That doesn't mean that he had a good day though. All it means is that he wasn't sent home because of a fever. Emmett has lasted as well and the reason I even mention that is because he wore pants to school for the first time this year. That's definitely a few steps forward. Like with Elliott, I don't know if Emmett had a good day. I can very easily see Emmett crashing when he gets home because his pants have been driving him crazy all day. It's very common for kids on the Autism Spectrum to have awesome days at school but completely fall apart when they get home. They spend all…

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October 30, 2017

Clozapine Crisis / Gavin / My thoughts

I’m so worried about Gavin’s labs today

I managed to get everything done this morning that needed done. Gavin's labs have been drawn and now all we can do is wait for the results to come in. To say that I'm on edge is an understament because I'm freaking out at this point. I don't know whether things have improved or gotten worse but I'll likely find out in the next few hours. If things have gotten worse for Gavin, we will likely pull the plug on the Clozapine and hopefully see a positive change in his labs.

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October 30, 2017

My thoughts

Rough morning but we did okay

The boys have both made it to school this morning. Elliott was questionable but we opted to send him because he's already missed so much and he was feeling fine. Both Emmett and Elliott had a rough morning, but like I said, they made it to school and that's what matters. Now I have to focus my attention to Gavin and getting his bloodwork done this morning.

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October 30, 2017

Elliott / My thoughts

Elliott’s still running a fever and I don’t know what to do

I don't know what we're going to do this morning as far as school and Elliott are concerned. Within the last ten hours of so, he was running a fever of 101.2°F. The school policy is that anyone with a temperature of 99.5°F or above, must be kept or sent home. I'm going to have to call the school in the morning and talk to them about this. We don't know for sure what's going on with Elliott aside from not having Strep or Pneumonia. My next call is going to be to our immunologist because she manages Emmett's fever disorder and it's looking like Elliott might be looking at the same thing. This is so fucking stressful and I wish this were a less murky situation because knowing what…

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October 30, 2017

My thoughts / Unboxing / YouTube Video

Opening the new #Sony WF 1000X noise canceling true wireless headphones

I'm always looking for ways to help raise Autism Awareness in creative ways. I used to raise awareness by building Android ROM's for Samsung's flagship phones and did that for a couple years. I had entire communities of nerds (myself included) on one of the most popular phone sites in the world, sharing what they learned about Autism with their families and friends. It was truly amazing. I ran out of time for developing and so that is no longer something I'm pursuing. I've begun a new venture to leverage one of the most popular types of videos on YouTube, unboxing videos, to raise awareness for worthwhile causes. I'm calling it OpeningStuff and I've already partnered with some amazing companies. I've already been sponsored by Bose, Jabra, Sphero, Tile, Nokia…

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October 30, 2017