Gavin Archives - Page 4 of 113

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

Okay, that’s a little over the top

The boys and I have been keeping things pretty low key today. One of the reasons for that is that Gavin's behaviors are way over the top. By over the top, I mean exaggerated. He's finding everything hilarious and is very loud and excitable. This is actually common with autistic kids but it's not super common for Gavin in particular. To be clear, he's not misbehaving in any way. He's just being a bit annoying to everyone around him. LOL That being said, it's still cool to see him in such a good mood. Gavin doesn't really have a sense of humor that most people will get and doesn't like making jokes. Today however, he's making all kinds of jokes and is goofing around. Despite it being a bit much,…

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September 13, 2020

Gavin / My thoughts

Gavin’s labs came back and it’s mostly good news

Let me start out by stating that I'm absolutely overwhelmed. The last few weeks have been incredibly challenging for me. The last 2 weeks in particular, have been much worse because I've been so worried about Gavin's health. I have an update for you but not really an explanation because I don't know that we really have one at this time. After an enormous amount of frustration, glitches with MyChart, and long phone conversations with the always amazing people at Akron Children's Hospital, I was finally able to get the results from his recent labs. Gavin spent his hurry up and wait time working in his 5D art stuff. ☺ The headache it took to make that happen is due in part to unusual circumstances, HIPPA and technical problems. That…

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September 3, 2020

Gavin / My thoughts

Some of Gavin’s labs are coming in and they’re still very concerning

It's been an emotionally exhausting day. I spent most of today trying to keep myself focused on the things I have control over. Unfortunately, there's a great deal that I have no control over and that sucks. I was very consumed with waiting on Gavin's lab results to come back from yesterday's repeat lab work. You can read the back story here. About 10 am this morning, part of the results came back and unfortunately, they haven't improved. I'm still waiting for the results containing his immunoglobulin levels because that's the big one. It stands to reason that we're likely looking at those results very concerning results being verified. As it stands, we are looking at another day before we get those results back and I can't explain just how…

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September 2, 2020

Gavin / My thoughts

Quick Update On Gavin’s Condition

It's been a long stressful day but when is it not, right? I wanted to drop a quick update on Gavin's situation because I have some news. After a many phone calls and several attempted workarounds, Gavin's new lab orders were faxed to Akron Children's Hospital. By the time we got there, it was pushing 1pm. Gavin did great, as usual and we're currently waiting in the results. It's frustrating because I hate waiting, especially considering the stakes but hopefully, by the time you read this, we'll have some answers. Not much else to say at this point because today has been consumed with getting this addressed. I told you it would be quick.

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August 31, 2020