Tag Archives: IVIG

There is no cure for what my oldest son has but we keep pushing forward

Eariler today there was a knock at the door. It was Akron Children’s Hospital delivering Gavin’s IVIG infusion supplies. I guess I didn’t realize it was already that time of month again. Gavin has been getting these delivers for more years that I care to remember and as much as… Read more »

He’s 18 years old on the outside but not on the inside

Gavin’s having a rough time today. He’s eighteen years old now but can’t be treated or managed like a typical, freshly minted adult. Unfortunately, Gavin’s cognitive ability is significantly lower than his chronological age. Until we have his new NeuroPsych testing done this summer, we won’t know exactly how much… Read more »

Do you ever feel like life has just kicked your ass?

It’s been a long weekend and it’s still not over yet cause there’s no school today. There’s not been anything catastrophic that’s happened in the last few days but I feel like I had my ass kicked up one side of the road and down the other. Truthfully, Lizze and… Read more »

There’s way too much shit to worry about as a special needs parent

I’ve been playing a very frustrating game of phone tag with the pharmacy this afternoon. I need to make sure they either look out for a fax from the lab or call and have it faxed over because Gavin needs his refill tomorrow. I cannot stress enough that Clozapine is… Read more »

Gavin went to bed not feeling well and I’m worried

Gavin had a really stressful day yesterday. He did great with having to get more bloodwork done but it took a lot out of him. As the day went on, it was clear that he was at the end of his rope. The boys were being annoying, as little brothers… Read more »

Does your child with #Autism have a comorbid diagnoses as well?

Does your child with #Autism have a comorbid diagnoses? Common comorbid diagnoses are things like #ADHD, Anxiety and Sensory Processing Disorder.

I’m back on track

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It’s been a quiet morning so far. The boys are resting, Lizze is doing research, Gavin’s getting ready for his Friday IVIG infusion and I’m working on a bunch of things. One of my main priorities today is making sure I meet my activity goals. I’m currently using the Fitbit… Read more »

Dry air makes it so hard for me to sleep

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I had a rough time sleeping last night. Majority of the problem was related to the air being so dry, it made me really stuffy and that always makes it hard for me to sleep. It’s like a fricking desert. Around 2 AM I ended up downstairs on the couch…. Read more »

As an #Autism parent, why don’t you get a break?

We’ve established that #Autism Parents aren’t getting the breaks they need. The next question is why. Why don’t you get the breaks you need?

Doing right by Gavin for his 18th birthday isn’t as easy as it sounds

Gavin will turn eighteen in a few days. To be honest, that’s a pretty big deal for a number of reasons. The most obvious is that he’s physically made it to eighteen and I say that because of his fragile health. He’s had some close calls over the years and… Read more »

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