This is an unbelievably busy week

It's going to be a seriously busy week and it's going to involve a great deal of driving. Elliott has an appointment at Akron Children's Hospital in the morning. This is for a medication check with the behavioral health center. The drive will likely be longer than the actual appointment but it is what it is. On Wednesday, I'll be returning to Akron Children's Hospital again, this time with Gavin. He's got a follow up with gastroenterology. We've been waiting for this and I need to make this happen. On Thursday, Lizze has an appointment in the morning and on Friday, I'm back at Akron Children's Hospital once more for the boys. This is just a regular thing with their pediatrician. It's not a big deal but we still have…

0 Comments

Aside from learning he’s having chest pain, here’s how Gavin’s appointment with #Cardiology went

First of all, I appreciate your patience with this update. I'm exhausted and just didn't have the energy to write earlier. I'm going to try and keep this brief because I want to be in bed before midnight. Gavin had appointments at the Cleveland Clinic today. His first appointment was for an EKG and the second was with his new cardiologist, immediately after. While we didn't hear the results of the EKG, from what I saw, it looked normal. I was trained to read EKG's as a medic. It's been awhile since I've read a 12 lead but nothing stuck out to me and I'm sure if something was wrong, we would have been told. His actual appointment with his new cardiologist went really well. She's really nice and was…

0 Comments

We’ve arrived at our 3rd and final doctors appointment for the day

Gavin and I just got home in time to make it to his 3rd and final appointment of the day. We're meeting with his therapist to talk about some of the things Gavin's struggling with and brainstorming some ideas in regards to helping him work through them. The main thing we're focusing on is his negative, internal dialog and his inability to cope with imperfections. We'll have to see what happens and go from there. I'll be updating you about Gavin's appointment with Cardiology at the Cleveland Clinic in a little while. I need to catch my breath first. ☺

0 Comments

We’re waiting to see the doctor and Gavin’s getting hangry

Gavin's EKG went well and literally lasted only a couple of minutes. We made it to his second appointment of the afternoon and just spent a good bit of time, meeting with the nurse, going over a detailed family history. She was great and I really appreciate that. ☺ Now we're waiting for the doctor and I must say that it feels like it's about 1,000 °F in this room. I hate being up here by myself but it is what it is. Hopefully it won't be too long of a wait because Gavin is getting hangry..

1 Comment

We’ve just arrived at the @clevelandclinic for Gavin’s #EKG

Gavin and I arrived at the Cleveland Clinic, right in time. Our first stop is his EKG and then we see his new cardiologist immediately afterwards. Lizze wasn't feel well this morning and therefore stayed home. At the moment, we're crammed into a tiny waiting room. I don't care about the size of the room but some one in here is a very heavy smoker and they smell like an ashtray. I don't do well with this particular smell. It's making me sick. 🤮 It's a good thing Lizze isn't here because this smell would kill her. Anyway, now we just wait to be called back.

3 Comments

We got some insanely good news

I wanted to drop you a quick line to share a bit of insanely good news. Let's be honest, it's been a little while since I've had some really good news to share. Well, you can reset that counter because I have some good news to share. ☺ Yesterday morning or early afternoon, I got a call from Akron Children's Home Health. They were able to secure a month's worth of Gavin's IVIG Infusion medication. It's a bit different this month though. Rather than using two vials for his infusion, he'll need to use three. It's the same medication but in a different concentration. It's not a huge deal and an easy trade-off. Not only did they secure the medication, they even got it delivered the same day. Gavin was…

1 Comment

I try so hard not to get angry but his behaviors can make that more difficult

I'm not having the best day. My anxiety is through the roof and I'm internally freaking out. I don't really have a specific reason why but it's making me more easily frustrated and/or overwhelmed. Unfortunately, that weakness is making some things harder for me to cope with right now, especially in regards to Gavin's behaviors. He's asking the same question, over and over. This is just one example of this. Since I told him on Friday that his infusion meds were on backorder, he keeps asking me where they are. Every time I tell him that they are on backorder, he's says oh, okay. Ten minutes later, he's asks me the same question again. It's insanely frustrating but I honestly don't think he remember ever asking the question before. I…

3 Comments

Gavin begins Cardiology journey at the @clevelandclinic this week

The Cleveland Clinic called on Friday, before Lizze and I left for the funeral. They were calling to make Gavin's Cardiology appointment. The last time Gavin was at his Neurologist, we discussed Gavin having Ehlers-Danlos. His doctor wants him to be seen in Cardiology at the Cleveland Clinic because of the risk that he may have the vascular form of Ed. Ehulers-Danlos can complicate many aspects of his health. We decided to pull everything up to Cleveland from Akron because Gavin is aging out and will eventually have to move anyway. On Wednesday, Gavin will have an EKG or Electrocardiogram, to sorta measure how his heart is doing. We'll immediately see the doctor afterwards. I'm not expecting anything new to be discovered here because he's seen Cardiology several times at…

0 Comments