Gavin had a major diagnosis change today

Gavin and I met with Dr. Reynolds this morning. Lizze wasn't feeling well and was resting up so she would be better when the kids got home from school. Sometimes we have to divide and conquer.  Today's appointment was basically supposed to be a followup, because we had discontinued the Lithium last month. Dr. Reynolds wanted to make sure everything was okay.  We met for quite awhile, and the discussion turned to something I hadn't planned on.  I asked the question, at what point do we revisit his Schizoaffective diagnosis and look at straight up Schizophrenia?  The reason I asked this question is because we haven't reevaluated him in a long time and his symptoms have changed as he's gotten older. Long story short, Gavin's official diagnosis has changed to…

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The painful truth about my son’s condition

I've been working on this update for a little while but haven't been able to keep my thoughts together. If you take one thing away from this entry, let it be that I'm very worried about Gavin. Lizze and I both are very worried about Gavin.  Let me begin with the fact that Gavin's heartbroken. His beloved Master Sword broke yesterday and it's like his entire world has crumbled around him. [videopress yBQWDnIr] Every single morning, Gavin trains with his visibly challenged, group of super best friends. This is one of the many teams he commands. These teams help to defend the Universe from evil villains like Eggman or Shredder. Just so we're on the same page, these are all Schizophrenic hallucinations and are only real to him. Anyway, every…

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Major Update: We saw the psychiatrist today

Many things have happened today but in this entry, I want to focus on what is arguably the most pivotal.  I spoke previously about Gavin having his Lithium dose cut in half, with the potential of being totally removed in the near future. The near future has arrived and we met with Dr. Reynolds this afternoon about this very subject.  The focus of today's appointment was to discuss how things were going on the current (reduced) dosage and then decide where to go for here.  Lizze and I both agree that Gavin is or at least appears to be manic. Is this the result of the decreased dose of Lithium? My personal opinion is that it's probably not.  The reason I say that is because Gavin's been on 900 mg/day…

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MASSIVE UPDATE: Heartbreak and a few other things

As we close out another stressful day in world of special needs parenting, I thought I would touch base on how the day went.  We know that Emmett didn't make it to school. Rather, he made it to school but not out of the car. It was one of those sensory days where he was so hypersensitive, there was no working through it.  That's not to say we didn't try and try extensively because we did.  Every once in awhile, we hit days like this where Emmett just cannot tolerate anything on his feet. It doesn't matter what we try, nothing works. This is the exception to the rule though.  Typically, it's a struggle and requires a shit load of patience but we can work through it with him.  We…

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MAJOR UPDATE: Here’s what’s going on with my wife

There's a part of me that's still getting used to my wife and I being back together, in regards to my writing anyway. I don't often include her in my writing because I got so used to avoiding any mentions while we were separated for almost two years. This is a problem, and I mean to address that moving forward. Lizze plays a vital role in our daily life, and there are things that should be talked about. For the more personal stuff, I will refer you to her blog, www.themamaspace.com. She shares personal insights about herself and her struggle. I'll be touching on some of the basics, though. I want to get things started by playing a little bit of catch up. You may already know that Lizze struggles…

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A massive update on our trip to the immunologist yesterday

After running around all morning and then hanging out with Gavin for a little bit, I figured I'd get everyone caught up on what happened at the boy's appointments yesterday.   The boys were scheduled to see their immunologist/allergist yesterday. She's way up north, quite close to Lake Erie actually.  We followed her when she moved from Akron Children's Hospital because of how complex Gavin is and she was his primary for a couple of his disorders.  Anyway, Gavin was there to have a followup on his immunodeficiency, asthma and allergies. Elliott was there for his asthma and allergies. Emmett was there for his allergies and fever disorder.  I'll start with Gavin because he's the most complex.  Gavin did really well on his tribal volume asthma testing. This means his asthma…

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A massive and important update on the current state of Gavin’s mental health care

Disclaimer: I'm venting/ranting about the current debacle that is Gavin's mental healthcare. I'm really frustrated, angry and overwhelmed by all of this because there's so much at stake. When you read this, keep in mind that I'm experiencing all these emotions and this is my way of sharing our story but also processing all this as well.  I heard back from the nurse at Gavin's psychiatrist's office this afternoon and we had respectful but totally unproductive conversation.   This was one of those conversations where I'm not sure if I'm more frustrated now than I was before but I think I am.  Yeah, I'm pretty sure I'm more frustrated now.  After listening to what happened, this is what the nurse told me: I wish I could tell you that things…

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