Autism Archives - Page 56 of 714

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

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

My thoughts

Helping my #autistic son manage his own routine and schedule

One of the things I really need to invest more time into is helping Gavin manage his routine. He does pretty good with major things like brushing his teeth or taking his meds. That's a awesome because those are both very important things. The stuff he really struggles with is everything in between. He so easily loses track or time or gets lost in what he's doing. He's been telling me lately that his imagination takes over. Gavin needs frequent reminders in order to stay on task and not drift too far off course. I mentioned before that I'm using visual prompts and check lists to help him remember but I'm always looking for better ways to help him navigate life. Sure, it's fun laminating things but there's no point…

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August 29, 2020

My thoughts

It’s been an okay day

The boys have been having a quiet morning. The stress level in the house is down a bit and we're getting a breather. Lizze is filling out all the paperwork for the boys and then I'll get everything submitted. As soon as the school gets the paperwork, the boys will get their schedules and their Chromebooks. Lizze and her mom will pick everything up and drop it off as soon as it's ready. She wants to help and I'm grateful. Elliott snuggling Ruby Until we know more about Gavin's situation, we are locking down even tighter. Speaking of Gavin, I've not been able to get ahold of his immunologist all week. I've left messages and have not heard back. I hope everything is okay because they are in one of…

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August 28, 2020

COVID19 / Distance Learning / My thoughts / Planning / Remote Learning / School

We made a major decision about this school year

Let me start by saying, I hate everything about this school year. I hate how our kids and teachers have been put in impossible situations because our leadership won't take COVID seriously and do what needs be done in order to get us through this. That being said, we've made a major decision in regards to school for the boys. While I can go into more detail at a later time, Lizze and I agreed to pull the kids from their current school and put them back into their old school. After 2 weeks of technical issues, the kids literally crying and me on the brink of a fucking stroke, I decided this wasn't going to work. The reality is that the entirety of this responsibility falls on me. It's…

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August 28, 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