Read more about the article Here’s how we figured out the legal problems after Gavin turned 18
Akron Children's Hospital / Autism Parenting Insight / Gavin / My thoughts

Here’s how we figured out the legal problems after Gavin turned 18

I was finally able to connect with the person in the legal department at Akron Children's Hospital today, that I needed to speak with. We had a somewhat lengthy conversation about Gavin and how we should proceed with the legal quandary of him turning 18 years old, being legally incompetent and us being unable to complete guardianship at the moment. The current plan is to use a medical power of attorney and when it comes to signing any paperwork, Gavin will sign but so will we. I guess that covers our bases. Everyone understands what's going on and shockingly (I say with total sarcasm), it's a first for everyone. We have to get the papers signed and notorized in the morning. I will deliver them, along with a sworn affidavit…

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July 11, 2018
Read more about the article Gavin’s surgery is now uncertain
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery

Gavin’s surgery is now uncertain

Gavin's supposed to have an endoscopy and a colonoscopy done at Akron Children's Hospital next week. They consider this surgery and refer to it as such, so I'm doing the same. I received a phone call this morning from his Gastroenterologist. This is the doctor who ordered the non-urgent but medically necessary procedures. As a result of Gavin's recent issues surrounding his IVIG infusions, he now will need medically cleared in order to proceed. They need his immunologist to sign off on the procedures and unfortunately, she won't be back in the office until Monday and we may need to make an appointment for him to get checked out. That may be cutting things a bit close. Assuming that Gavin's IVIG infusion medication shows up this week, he should be…

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July 10, 2018
Read more about the article My #1 take away from today
Akron Children's Hospital / Gavin / My thoughts

My #1 take away from today

I'm going to sum things up for today pretty quickly because I'm really tired and hope to actually sleep tonight. My number one take away from today is pretty straightforward but also very positive. I spoke with legal at Akron Children's Hospital and seem to think that gaining medical power of attorney will work. They need to double check a few things and they will get back to me. This is enormously positive news and while we don't know anything for sure, it sounds like it will all work out. ☺

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June 14, 2018
Read more about the article Things have gotten so much more complicated
Akron Children's Hospital / Cardiology / Gavin / My thoughts

Things have gotten so much more complicated

Before I go into anything, I want to begin by saying that Gavin's echocardiagram looks good. Everything appears to be normal and that's really, really good news. Gavin did really well with the testing and was very cooperative. He even tried to carry on conversations with the staff. It was sorta awkward and unrelated to anything that was happening but I love that he tries. ☺ The cardiologist and his staff were amazing. They took all the time they needed to be thorough and make sure we covered everything. You have to understand something about Gavin. He has an insanely long and incredibly complicated medical history. It's very difficult for anyone to sorta jump in this late in the game and hit the ground running. The title indicates that things…

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June 7, 2018
Read more about the article Returning to Cardiology at @AkronChildrens Hospital today
Akron Children's Hospital / Cardiology / Gavin / My thoughts

Returning to Cardiology at @AkronChildrens Hospital today

Gavin and I will be heading off to Akron Children's Hospital once again today. We were able to get an immediate appointment in cardiology and that's crazy fast. This is a very important follow-up in regards to Gavin possibly having Marfan Syndrome. We've been down this road before but the doctors at Akron were very concerned about how Gavin physically presented and wanted him to have an echocardiogram before we proceed with his scopes. I'm not sure he will get his echo today but we're seeing the cardiologist in order to figure out how to proceed. Gavin's not nervous because he doesn't understand what's going on but he knows there won't be any needles. The echo is noninvasive and he's had a few of them done already. We just need…

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June 6, 2018
Read more about the article The Life-Threatening Reason Gavin’s Surgery was canceled (video)
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery / YouTube Video

The Life-Threatening Reason Gavin’s Surgery was canceled (video)

As you likely already know, Gavin was scheduled for surgery at Akron Children's Hospital yesterday. Everything went as planned but we ran into a problem. I summed everything up in the video below because it was easier to talk about it than try to explain in writing. I'll quickly explain what happened before leaving you to the video for the details. Gavin's surgery was canceled at the very last minute and I mean that literally. He was just about to go into surgery when two issues came up. One was workable but one of them led to everything being canceled. The first issue was legal but more of an ethical concern than a legal one. While this did come up and I share this in the spirit of honesty, it's…

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June 6, 2018
Read more about the article We’ve arrived at @AkronChildrens Hospital for Gavin’s procedures
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery

We’ve arrived at @AkronChildrens Hospital for Gavin’s procedures

Gavin's a bit nervous but doing well. He's very focused on the IV heading his way and is trying to talk himself through it. He brought a stuffed animal with him to help him be brave, his words not mine. We're waiting for the doctor and anesthesiologist to come talk to us before they take him back. Gavin of course, has some questions a out the IV he's getting but aside from that, everything has already been answered that can be answered. We'll likely be here for a few more hours at the very least. As far as I know, Gavin won't be able to really eat anything substantial until later in this evening. Maybe I've misunderstood but either way, Gavin's done remarkably well with not eating. We're super proud…

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June 5, 2018
Read more about the article Please keep Gavin in your thoughts and prayers this morning
Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery / Thoughts and Prayers

Please keep Gavin in your thoughts and prayers this morning

Gavin has now gone more than 24 hours without eating. For someone who loves their life around eat meal of the day, that wasn't easy and it's still going to be almost half a day before he's able to eat. We will arrive at Akron Children's Hospital in about 2 hours, and his scopes are planned for noon. It's going to be a long morning and afternoon. As of right now, Gavin's in good spirits and we have hope that he will be just fine. We know he'll be physically okay but emotionally, he's going to likely struggle, at least in the short term. For now though, he's relaxing and playing his tablet. Please keep Gavin in your thoughts and prayers this morning. I know that I will definitely appreciate…

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June 5, 2018