childhood disintegrative disorder Archives - Page 235 of 276

Awesome News

We received confirmation that everything will be up and running, if not now, in short order. Legoland is the main thing Gavin wished for and I was worried that might prove to be a problem. The only place I don't know about for sure is Kennedy Space Center. It would be awesome to go there but if it's not a huge deal. It's probably just the nerd in me that was really excited to see that place. 😁 We are officially a go for the end of the month and I know I'm excited. ☺ This trip is going to be so much fun for all of us. The only issue we still have to work out is how to keep Lemme, our genius ferret from being able to escape…

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September 13, 2017

Major Update / My thoughts

Major Update

As I've said before, the decision as to whether or not we should push our trip back was between us and the wish organization. I also mentioned that we were going to wait until the end of this week to make a final decision on anything. I spoke with the organization this morning and the place we're staying is back up and running. We know that Disney is up and running already. What we didn't know is whether or not the other places are going to be in service. That is being looked into this morning, and assuming everything checks out, we will be good to go for the end of this month. Lizze and I are good with this. We had our concerns, we discussed them with the people…

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September 13, 2017

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

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

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

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

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

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