IVIG Infusion Archives - Page 152 of 181

We’re seeing a significant increase in #Meltdowns

There's so much going on in my life and it's becoming more and more difficult to write about it because it's exhausting. I keep thinking about doing more vlogger type things but I don't know. Anyway, Elliott's going through a very, very, very difficult time. The teenage years aren't easy for any kid to deal with but factoring in things like Autism, ADHD or Anxiety and life becomes truly difficult. Elliott is absolutely the sweetest kid in the world and he always has been but he's also struggling more and more. We spoke with Dr. Pattie about this again on Tuesday and from where I sit, I'm not even sure Elliott knows why he's so miserable. He'll rattle off things that are upsetting him but it just doesn't seem to…

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August 31, 2018

Autism Parenting Confessions / Gavin / My thoughts

Every single day, I lose more of my son and it hurts beyond words

There's so much to catch you all up on and frankly, some of it is too difficult to talk about. I've tried writing this several times now and very quickly find myself entirely too overwhelmed to actually finish anything. Rather than giving up, I've decided to write what I can, stop when it's become too much and publish it, regardless of how it sounds. As a result, this may sound a bit choppy or jumbled but that's because it's not easy to even think about this stuff, let alone write about it. Deep breath...... Gavin stepped onto the scale today and has lost more weight. He barely weighed 119 lbs, fully dressed and already having eaten breakfast. That's at least a one pound loss since yesterday and it's worrisome. Lizze…

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August 31, 2018

Feeling Blessed / Fit4Autism / My thoughts / Weigh-in Wednesday

3 reasons I’m feeling incredibly blessed today

It's no secret that my life is hard. It just is. It's no secret that I struggle at times. I just do. It's no secret that if it weren't for bad luck sometimes, we wouldnt have any luck at all. It's how I feel. Having said that, there are times where I feel extremely lucky or even blessed and today is one of those times. There are currently three reasons why I'm feeling so blessed right now..and here they are. Work Money's really tight since some recent changes to my income occurred. When I mean tight, I mean I can have less than $10 to my name at times. I'm not proud of that but it is what it is and I know I'm doing the best I can. I…

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August 30, 2018

My thoughts

. @GaiaWearables is looking to prevent #Meltdowns and they need your vote

Hi everyone! We need YOUR help getting selected to host a panel on how technology can empower the autism community at the South By Southwest Conference 2019. Our team, GAIA Wearables, intends to create wearable technology that can prevent meltdowns amongst children with autism. At the moment, the only wearables intended for the ASD community are reactionary, prevention is the next step. The hope of this panel is to not only explain and expand upon the effectiveness of preventative technology, but identify how such technology could launch the entire community into a future of unprecedented, personalized treatments. This panel is really important for us to continue leading provoking conversations within the autism tech world. In order to be selected host a panel and participate in this conference, we need be…

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August 28, 2018

Inspirational Posts / Mental Illness / My thoughts

Getting help for #mentalillness is NOT weakness

I've been very open about my struggles with mental illness and I'll continue to be that way. There's absolutely no shame is struggling with mental illness. Getting help for mental illness is also not a sign of weakness. It's 2018 for God's sake, you'd think this would be more easily understood but sadly it's not. Unfortunately, there's still a great deal of judgmental and ignorant people out there. They are critical of what they don't understand and nothing you or I could say will change that. I think we've made progress in mainstreaming the discussion of mental illness but we have a ways to go. If you're struggling with a mental illness, please don't be afraid to get help. Admitting you need help is NOT a weakness. The only weakness…

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August 28, 2018

Fit4Autism / My thoughts / Self-Care

I remain totally committed

It's a really hot say here in the Hall of Fame City. There was loose talk yesterday of canceling school because there's no a/c and the school essentially transforms into a giant kiln. Apparently, they opted not to cancel class and we sent the kids with extra water. I wasn't able to go walking until about 10:30 AM because Lizze has a standing appointment every Tuesday morning. It was definitely hot when I got to the park but not as bad as I had thought it would be. The humidity was only 50% and so it was more of a dry heat. I did just fine and finished up in time for lunch. ☺ I'm really finding myself committed to walking each day and I feel better since I've been…

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August 28, 2018

Akron Children's Hospital / Cleveland Clinic / Gavin / My thoughts

Gavin’s health isn’t doing so well

I've had a very busy afternoon of scheduling doctors appointments for Gavin. I bounced back and forth between Akron Children's Hospital and The Cleveland Clinic for what seemed like an eternity. After all the calls, I only ended up with one appointment so far. On September 4th, Gavin will return to his neurology specialist at The Cleveland Clinic. Normally Gavin goes there for his autonomic disorder and epilepsy but this time around is different. Gavin has been telling us that his legs aren't working right. We haven't been able to get more reliable information out of him but it sounds like his legs are giving out. We haven't seen him fall but it seems like he's having issues with his legs supporting his weight. That's a problem. We don't know…

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August 27, 2018

Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

It’s been a rough morning for Gavin but he totally surprised me

It's been a rough morning for Gavin. I didn't see too much of him until after I got home from taking the boys to school and getting my morning walk done on the way home. When I arrived home, Lizze was watching him get his IVIG infusion ready. I could see from the moment I walked in that he was not in a good place. Sure he was pleasant and polite as always but I could see he was struggling to stay on the road. He got his infusion going and returned to his bedroom sanctuary to wait the process out. Before long, he was back downstairs because one of the infusion sites was leaking a tiny bit. Gavin has historically not done well with problems arising during one of…

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August 27, 2018