Read more about the article General update and a new problem
Elliott / Gavin

General update and a new problem

We had a pretty good day blah blah blah... Check out the video of me talking to the boys about their day. I'm not trying to rush this but I want to get to something else before I'm too tired to finish this post.  https://youtu.be/wYW3c2QIBrk Moving on, we're having a new issue as of late and tonight makes the fourth night in a row. This issue is in regards to Elliott's new found inability to fall asleep at night.  This has been a very recent turn of events. He's had issues falling asleep on and off but this seems different. He's not able to fall asleep until well after midnight.  I'm not sure what's going on or what's changed but somethings definitely going on.  Lizze and I are sleeping in…

6 Comments
March 1, 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 The weird things my son with #Autism says
Gavin / My thoughts

The weird things my son with #Autism says

The things I talk about in this post are not meant to be disrespectful for Gavin. If you're an Autism parent, you'll probably have at least some experience with your kid saying something weird in front of someone in public. They don't mean anything by it. It's just those pesky, awkward social and conversational skills.  We've all been there and it's okay to talk about these moments because if we don't have a sense of humor, we'll go crazy at a much faster pace.  It's a sign of a good day when I've made it this far without collapsing from exhaustion. 😁  The boys got off to school without too much headache and we really do appreciate the effort they put in to make that happen. Not having to deal…

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February 24, 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…

2 Comments
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…

4 Comments
February 21, 2017
Read more about the article Why I sent my #specialneeds son to his room
Gavin

Why I sent my #specialneeds son to his room

It's been one of those days were Gavin being Gavin has really been challenging for me. It's not his fault and I'm not angry with him at all but I am frustrated, exhausted and overwhelmed.  The issue for me is that he's not functioning at a very high level today and he's creating more work for me as a result. I'm having to constantly chase after him, keep him from hurting himself in accident and the repetition.. OMG the repetition..  Some of you will understand that statement, some of you will be empathetic and others will think I'm putting Gavin down. The reality is that I'm voicing my frustrations over a situation I'm currently existing in. Speaking about my feelings, has absolutely no impact on whether or not I love…

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February 19, 2017
Read more about the article Very Important Update About Gavin
Gavin / General Update

Very Important Update About Gavin

It's been a trying day but I've learned one thing that I believe I can say with absolute confidence, Gavin off of Lithium is NOT a good thing.  I'm sure Lizze will put her two cents in at some point but having discussed this last night, I know she agrees. I suppose I should clarify that Gavin hasn't stopped taking Lithium completely but his dose has been cut in half and it's very clearly no longer effective. The purpose of doing this was to try and clear up some of his confusion. It's possible that being on the Lithium for ten years, in combination with the Clozapine, created a high level of confusion. Anyway, his dose was cut in half for thirty days in order to see if this was…

8 Comments
February 18, 2017