Read more about the article I can’t stress how important this is
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
Read more about the article Gavin keeps losing weight
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
Read more about the article Okay, that’s a little over the top
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
Read more about the article Gavin’s labs came back and it’s mostly good news
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
Read more about the article Some of Gavin’s labs are coming in and they’re still very concerning
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
Read more about the article Quick Update On Gavin’s Condition
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
Read more about the article I’m really worried about his test results
Gavin / My thoughts

I’m really worried about his test results

We have a rather eventful week a head of us. The direction it takes will largely depend on the results of Gavin's labwork Monday. Background: If you recall, Gavin's labs from this past week were so concerning that we're retesting to make sure they're correct. So much is so drastically wrong that we need to rule out lab error. Gavin's not exeriencing any obvious problems and he's not complaining about anything. With how bad these labs were, he should be in pretty rough shape. Until we know for sure though, we aren't taking any chances and have locked down even tighter. End Background This will go one of two ways. Gavin's labs will either come back normal and we move forward or they will come back problematic and require immediate…

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August 30, 2020
Read more about the article I heard back from Gavin’s immunologist
COVID19 / Gavin / My thoughts

I heard back from Gavin’s immunologist

I heard from Gavin's doctor this afternoon and I'm not surprised by the approach we're taking. Basically, Gavin's labs are messed up enough that we need to verify their accuracy. The plan is to redo his labs on Monday. The results will trickle in either that day or the following. If everything is fine, then we can breathe. If these come back the same, I'm not sure what we're going to do. If the results are confirmed, it would appear that there is something potentially very serious going on with Gavin. Until we figure out what is happening, I'm assuming the worst. Normally, I would not do that, or at least try not to do that. In this particular case, assuming the results are correct will require me to take…

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August 29, 2020