Common Variable Immunodeficiency Archives - Page 160 of 260

It looks like he’s going to be diagnosed with #Bipolar disorder

Lizze and I have begun accepting the reality of something we wish we wouldn't have to. That reality is the likelihood that Elliott will be diagnosed with Bipolar disorder. Elliott had some testing done eariler in the week at his physiologist appointment and it came back with a high likelihood of Bipolar disorder. That in combination with patterns of behavior over a very long period of time, and it looks like we may have to begin accepting the reality that Elliott has Bipolar Disorder. When I say accept the reality, I'm simply mean that in the sense that we don't want this for him. The fact that he likely has Bipolar disorder doesn't change him in our eyes at all. It does explain many of the behavioral challenges we face,…

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July 27, 2018

Gavin / My thoughts / Schizophrenia

The big reason I’m really frustrated with Gavin right now

I'm going to make this quick because I need to go to bed. The big reason I'm really frustrated with Gavin right now is very simple but also extremely complicated, all at the same time. Ever since Gavin began going on missions as a result of his Schizophrenic hallucinations, there have only been a couple rules that really matter. The first rule is that his missions only take place on the other side of the portal. The portal is what he refers to his bedroom door as. This keeps them mostly contained to his bedroom and limits the chances of them spilling out everywhere else. This has been mostly successful at both keeping him physically safe and shielding the boys from his missions. The second rule was that he never…

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July 27, 2018

My thoughts

I can’t let this drag me down too far

Another day, another challenge. I'm having sort of a rough start to the day. Nothing bad has happened but I woke up feeling overwhelmed by anything in my life. It's a terrible way to start the day because I know things are going to begin piling up and I'm already buried. Anything that gets thrown on the pile is only going to make things worse. There are days where the weight of everything feels so much heavier than it does on others. On any given day, I have to make decisions about how to spend my limited pool of resources. Sometimes everything just seems to click into place but other times it's like trying to cram a square peg into a round hole. Maybe I'm tired. Maybe I'm worn out.…

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July 26, 2018

Autism Parenting Insight / Inspirational Posts / My thoughts

Do I have less patience now?

Gavin had therapy tonight and one of the things that I mentioned to the therapist is that I just don't have patience for Gavin anymore. We discussed that briefly before something occurred to me. Perhaps this is a philosophical question but it's something I think Special Needs parents should keep in mind as their kids get older and perhaps more challenging. First of all, let's be crystal clear. I'm as far from perfect as any one person can be. I'm human and I have very human limits. That being said, the people who know me in real life, have been saying forever that I have the patience of a Saint, especially when it comes to Gavin. In all fairness to myself, I did have a seemingly endless supply of patience.…

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July 26, 2018

Family Fun / My thoughts

Hopefully we can pull this off today

I don't know what we're doing today for sure but Lizze wants to go walking. That's a very good sign for her because she's normally in so much pain that walking isn't in the cards. The boys have requested that we go all the way out to Quail Hallow but I don't know if Lizze will be up for that. If she's game, I'm happy to make the drive. ☺ Anything we do will be after Gavin's therapy session this afternoon. It's important to me that we do these kinds of things and if we can make it happen today, I look forward to spending the time with my family.

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July 25, 2018

Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery

We received confusing results from Gavin’s surgery and I have 4 questions that need answered

We received some confusing information regarding the results of Gavin's endoscopy and colonoscopy that took place last Friday. I received a phone call explaining that for the most part, his results were good. He does have what the nurse called mild gastritis but there wasn't an explanation for it. We knew all of this already because the doctor who performed the procedures explained everything at the time. What we are waiting for was the results of the biopsies and a plan for moving forward. The nurse on the phone was very nice and explained that we could keep him on the Nexium, which was confusing because he hasn't been in Nexium in at least eight years. I explained that and the nurse needed to check with the doctor in order…

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July 25, 2018

Autism Parenting Insight

I’m struggling to find my voice

I've been writing for almost a decade now. There have been highs and lows along the way but I do my best to share our journey, despite the daily challenges. One of the problems with doing this for as long as I have is there are times where I simply burnout and sorta lose my voice. I don't mean lose my voice in the traditional sense though. When I lose my voice, I mean that I feel as though I've lost my direction in regards to writing. Sometimes I'm just too exhausted to make heads or tails of my thoughts, let alone put those thoughts into words. One of the things that I struggle with sometimes is keeping up with my writing and conveying my thoughts or feelings in ways…

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July 24, 2018

Akron Children's Hospital / Elliott / My thoughts

We’re beginning a new journey with one of our kids

I haven't spoken about this in awhile but we are very likely beginning a new journey. Frankly, it's something that I have been desperately trying to avoid for a number of reasons, one of them being I simply didn't want to face it. That journey is exploring the possibility of Elliott being bipolar. He's on the shortlist for this to begin with, and the generic history is definitely there on both sides of the family as well. I've spoken about these concerns in the past but we were taking a wait and see approach. Unfortunately, its become more of a concern as more and more behaviors bubble to the surface. The problem is finding a qualified psychiatrist in the area or even outside the area. It's nearly impossible because there…

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July 24, 2018