Fragile Health – The Autism Dad

Round 3 of blood work for Gavin

It's been a long day but a pretty good one. I didn't write yesterday cause I was not really in a place where I felt like writing. I spent the time connecting with other parents instead and that was really cool. Yesterday, I had to take Gavin for another round of blood work, this time focusing on his liver. I hate doing this because it puts us in contact with other people but it was a necessary evil. Gavin's levels have been off and we have to keep following up until we figure it out. I needed to get this done ASAP because the car goes into the bodyshop this weekend and I'll be car-less for a few weeks. Gavin has an appointment with gastro coming up and we need…

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October 3, 2020

Gavin / My thoughts / Probably Genetic

It’s incredibly frustrating when the answers you get aren’t the answers you want

I met with Gavin's genetic counselor this afternoon, to go over the results of his exome sequencing. This has been a long time in the making I want to give a huge shout out to Probably Genetic for all their help. Essentially, what I learned is that we really didn't learn a whole lot. I say that because we didn't find answers to the many questions we've had for a very long time. That happens and it's for one of two reasons. The first reason being that there's nothing wrong and the second being that science simply hasn't identified everything yet. There are limits to our scientific knowledge but as that knowledge expands, answers may appear as the data is reinterpreted. When I say we didn't learn anything, that's not…

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September 26, 2020

Gavin / My thoughts / Probably Genetic

I can’t stress how important this is

I have a meeting tomorrow that's 15 years in the making. This week, I received an email from Probably Genetic, informing me that Gavin's genetic testing results have come in. The report I received explains that there was a one mutation identified but I don't have the expertise to fully or even partly understand what it means. It does appear to have something to do with electrical activity and his heart. Genetic counseling will provide a great deal of insights and explanation of everything. I have a video conference in the afternoon where I'll get whatever information is I can, digest it, talk to Lizze and figure out what to do. This is the first time in 15 years that we have found something on a genetic level and hopefully,…

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September 24, 2020

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

Gavin keeps losing weight

I've not talked about this in a while but as it's become a problem once again, it's time. Gavin is losing weight after maintaining for a most of the year. He's not losing crazy amounts of weight but he's lost all he's gained. We have an upcoming GI appointment and we're going to discuss the issues with his current labs (Bilirubin) and what, if anything we need to do. This will be done remotely since the labs were already done and it will be safer for Gavin. For his entire life, gaining weight has always been a problem. For much of this year, he was maintaining at 140 lbs and today he's down to 130 lbs. This wasn't overnight but it's where we are today. We've been tracking this forever…

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September 19, 2020

Gavin / My thoughts

Please keep Gavin in your thoughts and prayers

I'm going to make this quick because my brain is completely fried and the rest of me is equally as exhausted. Gavin's labs came back today and some of the results appear to be very concerning. The reason I say appear to be concerning is because I'm not a doctor and I have only a basic understanding of how to read this. There are several areas that are concerning to me. Gavin's IgG level is 358 and the normal range is 578 to 1228. His IgM level is 20 and the normal range is 23 to 166. Gavin's IgA level is 24 and the normal range is 59 to 337. On the surface this looks bad, especially considering he had his IVIG infusion less than 24 hours before his labs…

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August 27, 2020

Gavin / My thoughts

Gavin went to bed not feeling well and I’m worried

Gavin had a really stressful day yesterday. He did great with having to get more bloodwork done but it took a lot out of him. As the day went on, it was clear that he was at the end of his rope. The boys were being annoying, as little brothers will be, but Gavin didn't have as much patience as he usually does. After dinner, he ended up with really bad reflux and it took quite a bit of work to help him feel better. He went to bed tonight still not feeling 100%. I don't know if the reflux was stress related or if it was something he ate. Maybe it's a little bit of both or something else all together. I'm worried about him and there's nothing I…

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February 9, 2018

Inspirational Posts / My thoughts / PFAPA

Special Needs Parenting – What it feels like to watch your kids suffer

I've been working for almost a decade to help people better understand what Special Needs Parents go through. Whether it's Autism, ADHD or even fragile health, there's a story to be told and insight to be gained by reading it. Every family's experience can and will be different. Even families dealing with the same diagnostic challenges can and will experience different problems, even though their kids share the same diagnosis. I wanted to attempt to explain what it feels like having to powerlessly watch my kids suffer. The most recent experience I've had, I'm stilling actively living through, and it's in regards to Emmett. Emmett has been living with a very rare fever disorder known as PFAPA. The disorder means that Emmett runs idiopathic fevers. Idiopathic means that the fevers…

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January 29, 2018

Gavin / My thoughts

Please keep Gavin in your thoughts

Gavin and I went to the grocery store this morning. All was going well until Gavin's leg stopped working correctly. Those were his words, not mine. The problem was/is that his legs were giving out on him. I can remember this happening before on many occasions, but it never lasted this long. There were times he was having to hold himself up by leaning on the cart. We've been home now for about an hour, and he seems to be doing better. He wanted to know if his legs were having seizures. I don't know what's going on with him because, in the past, no one's been able to figure this out. I'm hoping today's problems were just a fluke, and after some rest, he'll be doing better. It would…

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January 27, 2018