Fragile Health

Tag: Fragile Health

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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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