Read more about the article All that matters is that they get to go
Lizze / Mommy and Daddy Time / My thoughts / Parenting Break

All that matters is that they get to go

The boys are gone, and on their way to the Akron Zoo with their Grandparents. That's a bit of mixed emotion for us, because we wanted to take the boys, but all that matters is that they get to go. We'll just take them to the Cleveland Zoo in a few weeks.  As far as how Lizze and I are going to make use of the time, that's changed a bit.  I was able to get some sleep after a sleepless night with the boys. As a result, I feel much better. Unfortunately, the same can't be said for Lizze.  After eating lunch this afternoon, she's now sick to her stomach. This time is particularly bad and she's down for the count. It's a Gastroparesis thing, and will eventually pass…

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June 25, 2017
Read more about the article This can really take it out of an #Autism parent
Mommy and Daddy Time / My thoughts / Parenting Break

This can really take it out of an #Autism parent

Lizze and I will be getting a break this fine Sunday. The boys will be spending the day, and subsequent night with their Grandparents.  It feels like we haven't had a night off in forever, but it's only been about two weeks. It's amazing how two weeks of raising three kids with Autism can take it out of a parent.  I'm not sure what we're going to do with our time. Perhaps we'll catch up on some sleep. Maybe we'll go for a walk, or catch a dollar movie. The whole point is to have some time away from the boys and devoted to ourselves.  We're so grateful for the time, regardless of how we end up using it. ☺ 

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June 25, 2017
Read more about the article Why I withheld my son’s IVIG infusion this week  
Gavin / IVIG Infusion

Why I withheld my son’s IVIG infusion this week  

I'm pretty sure I told you that Gavin's IVIG supplies were delivered on Wednesday. What I didn't explain was that we held off on giving it to him until Friday.  The reason behind that seemingly counterintuitive move was simple. By the time we could have given him his infusion on Wednesday, it would have been really late in the day. With his next scheduled infusion being essentially twenty four hours away, it was too close together.  If we had gone ahead with a Wednesday infusion, we would have had to push off the Friday infusion, thus fucking up the entire schedule as we worked to get things back on track.  By holding off and waiting until Friday, we were able to preserve the schedule and keep things from getting worse…

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February 26, 2017
Read more about the article Cool pictures from the last few days
Gallery

Cool pictures from the last few days

I wanted to take a few minutes tonight and share some pictures from the last couple of days. I'm a little behind on the updates but you can at least see some in the moment shots.  I'll follow up tomorrow with a couple of updates.. ☺ 

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February 25, 2017
Read more about the article We have no kids today
My thoughts

We have no kids today

The kids were gone last night and won't be back until dinner-ish today. Lizze and I stuck close to home last night because our plans today will take us out of town for a little bit. It's not going to be anything major, but we're going to lunch and to do some shopping.  We went to bed relatively early last night and I was up pretty damn early this morning because my Dad was coming over to help me fix the ass backwards plumbing in our shower.  It took a bit of improvising but we now have a working shower again and for that, we're grateful.  I'm feeling pretty energized today and not at all needing to take a nap. I know I probably should take advantage of the time…

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February 25, 2017
Read more about the article Major Update on Gavin’s missing medications
Common Variable Immunodeficiency / Gavin / General Update / Immunology / IVIG Infusion

Major Update on Gavin’s missing medications

Throughout the day, I had about half a dozen different conversations in regards to Gavin not receiving his IVIG medications and supplies. I spoke with his doctor, his insurance case manager and the head pharmacist at the pharmacy we want to switch to for his supplies.  Let's get this out of the way first.  Gavin's doctor's office was finally able to get things straightened out with our current supplier. The supplier appears to be who dropped the ball on this one.  Setting aside blame and focusing on what matters most at this very moment. I can share that Gavin's medications have been reordered. They should be arriving on Wednesday.  How am I going to prevent this from happening again?  The simple solution to fix this is going to be complicated…

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February 21, 2017
Read more about the article My son is missing his critical medications for the month
Gavin / My thoughts

My son is missing his critical medications for the month

A large part of my stress load today is the result of Gavin's IVIG supplies never showing up.  I was contacted on Friday by the supplier who said that Gavin's shipment is delayed because they have been unable to get refills from the doctor. They were going to fix this yesterday but that never happened.  I spoke with Gavin's doctor today and they have never been contacted for a refill or it would have been done immediately. I believe them because we've never had a single issue with them in five or six years.  The doctor's office also stated that Gavin current script covers him through May of this year and he doesn't even need a refill yet.  They are currently working to resolve this and have checked in with…

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February 21, 2017