Read more about the article Trying to get the morning off on the right foot
My thoughts

Trying to get the morning off on the right foot

I went to bed early for me. At some point, Emmett woke up with a nightmare and was terrified. If not for him climbing into bed with us, I probably would have had a decent night's sleep. I'm going to walk this morning and hopefully get the day off on the right foot. Everyone should be going to school, although Elliott's claiming to not be feeling well. The longer he's awake, the better he seems to be doing. As much as I want to want to go walking, I don't. I'm really pushing myself this morning but it's worth it..

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September 13, 2017
Read more about the article How Gavin’s appointment went and why I’m so overwhelmed
Autonomic Disorder / Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

How Gavin’s appointment went and why I’m so overwhelmed

We were gone for most of the day and it was an exhausting day at that. I want to start by thanking my Mom for helping out with the boys yesterday. We truly appreciate it. There was a lot of construction on the way to Cleveland but the drive was only about one hour and twenty minutes. The trip home was a bit longer but not too much. There were some idiot drivers out there and one major accident but the trip was relatively smooth. ☺ We were headed to Cleveland in order to meet with Gavin's neurologist, in regards to his autonomic dysfunction. [foogallery id="65530"] There was a great deal discussed and autonomically speaking, he's very happy with Gavin's stability. It's been about three years since his last major…

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September 13, 2017
Read more about the article It’s the only thing that makes sense at this point
Gavin / My thoughts / Wishes Can Happen

It’s the only thing that makes sense at this point

I wanted to drop a quick line and let you know that I've spoken with the people from Wishes Can Happen about the timing of our trip. We're going to wait until the end of the week to make a decision but as far as Lizze and I are concerned, our decision is made. Lizze and I are going to reschedule the trip when the end of the week arrives, at least as long as we have any control of things. I realize there was a bit of doubt that Hurricane Irma would interfere with our trip but I suspected it would from the get go. I wasn't being negative but rather trying to be as realistic as possible, because this trip will only happen once-in-a-lifetime, and we want to…

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September 12, 2017
Read more about the article It’s all that’s going to get me through the day
My thoughts

It’s all that’s going to get me through the day

The boys are at school and got there with minimal effort. We over slept a bit and no one wanted to get up but we made it. I only got about two hours of sleep, so I'm absolutely exhausted. I chose to skip walking this morning and instead go back to sleep because I need to be able to drive to Cleveland this afternoon. I know how important walking is for me but I've got to prioritize today and sleep takes priority. It's all that's going to get me through the day.

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September 12, 2017
Read more about the article We have am extremely important appointment today for Gavin
Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

We have am extremely important appointment today for Gavin

It's going to be super busy today. After taking the boys to school in the morning, I have to take Lizze to her first of two doctors appointments. While she's there, I'm going to meet my Mom at the park and try and squeeze in about four miles. After lunch, Lizze has her second appointment of the day. The moment she walks out of her appointment, we are heading straight to the Cleveland Clinic for a late afternoon appointment with Gavin's neurologist. This is really important for a few reasons but the biggest is to assess where he is neurologically, compared to where he was previously. We also have to discuss his vision issues because if his eyes are checking out, it's likely to be neurological in nature. At least…

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September 12, 2017
Read more about the article Pictures from Elliott’s occupational therapy session
Elliott / Gallery / My thoughts / Occupational Therapy

Pictures from Elliott’s occupational therapy session

I wanted to take a minute and share a few pictures from Elliott's occupational therapy session today. This was his first time back since being sick and missing the last session. He didn't go with a great deal of excitement because he wasn't in a good mood. By the time he finished up his session, he was in a much better mood. He was even happier after I got him a donut, but don't tell anyone else. 😉 [foogallery id="65509"]

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September 12, 2017
Read more about the article Gavin’s worsening vision issues
Gavin / My thoughts / Vision Problems

Gavin’s worsening vision issues

Gavin took a bath this afternoon. That's nothing unusual, in and of itself. What is notable however, is what happened after his bath and I'm not sure how worried I should be. While he was getting himself dressed, he looked in the mirror, which is high enough that it only reflects his head, neck and chest. He explained that while looking at his reflection in the mirror, he saw white geometric shapes, separated by black lines. He was unable to answer any questions because he didn't know how to answer them. I asked him to draw a picture of what he's talking about, because without us understanding what he's experiencing, it's much harder to help him. His drawing however, doesn't help is as much as I was hoping it would.…

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September 11, 2017
Read more about the article My brain and body shut down
My thoughts

My brain and body shut down

I failed on my quest to avoid a nap this morning. I tried but but brain just shutdown and my body along with it. I timed my nap to coincide with Gavin's morning nap while he received his IVIG infusion. That gave me a two hour window to get some rest. While I wish I was in a better place when I woke up this morning, I feel much more alive after my nap. Gavin and Lizze are up and moving as well. I'm leaving to get the boys from school shortly and then I need to take Elliott to occupational therapy. Afterwards, Lizze and I are probably going to take the boys to the garden center and let them explore for a little while. I want to make the…

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September 11, 2017