Read more about the article His EEG is done and Gavin is in good spirits
Adult Epilepsy Center / Cleveland Clinic / Epilepsy / Gallery / Gavin / My thoughts

His EEG is done and Gavin is in good spirits

Gavin's appointment with the Adult Epilepsy Central at the Cleveland Clinic went as well as could be expected. His EEG went fine physically but we won't have any results back until later this week. They did seem to take note of abnormalities but there was nothing I could pick up on for sure. If this has been an EKG, I'd be all over it but I can't read EEG's. Gavin was really cooperative and made lots of awkward attempts to engage the techs in conversation. 😁 I think they really enjoyed working with him because Gavin was so polite and courteous the entire time. EEG's are not comfortable, especially for someone on the Autism Spectrum, dealing with several Sensory Processing Disorder. I was told to call back if I haven't…

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January 2, 2018
Read more about the article He’s the bravest kid I’ve ever met
Gavin / My thoughts

He’s the bravest kid I’ve ever met

It's super cold this morning and that adds some extra suckage to our early start to the day. On the plus side, I slept pretty well and feel perfectly capable of battling traffic on our way to Cleveland. ☺ At the moment, I'm sitting in the parking lot waiting for Gavin to emerge from having his blood drawn. This poor kid is going to feel like a guinea pig today because of all the testing he having done today. The blood work this morning should be the only needles he has to experience today and there's comfort in that. I can't explain how much admiration I have for Gavin. He never, ever complains about having to go through any of these things. He's easily the bravest kid I've ever met.

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January 2, 2018
Read more about the article Is Gavin losing his vision or is something else wrong?
Cleveland Clinic / Gavin / My thoughts / Optometry / Pediatric Neurology

Is Gavin losing his vision or is something else wrong?

We have a super long day ahead of us. It begins with early morning bloodwork and getting the kids ready to spend the day at my parents house. While the boys are at my parents house, the rest of us will spending the day at the Cleveland Clinic. Gavin has a long day of testing at the afore mentioned Cleveland Clinic. The purpose of this testing is to rule out and or discover the cause of Gavin's vision problems. For awhile now, Gavin's been experiencing periods of time where his vision goes completely black, like someone turned out the lights. We have been unable to determine the cause of these episodes and our goal for today is to at least rule a few things out. There are two areas of…

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January 2, 2018
Read more about the article A major milestone and why it’s so important
Common Variable Immunodeficiency / Gavin / Immunology / Medication Management / My thoughts

A major milestone and why it’s so important

We began the new year with yet another IVIG Infusion for Gavin. He needs these twice a week because his immune system is severely compromised. These infusions literally keep him from succumbing to things that most people's bodies will fighting off without them even knowing. This is a very serious, life threatening condition and there is no cure. In all the years we have been doing these infusions for Gavin, this is the first time that we're going into a new year with Gavin performing this procedure completely independently. This is such a major milestone for a kid who's terrified of needles because this process requires him to stick two needles directly into his belly. He's come such a long way and I'm so proud of him for learning to…

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January 1, 2018
Read more about the article Gavin now needs weekly blood work
Clozapine / Gavin / My thoughts

Gavin now needs weekly blood work

As we begin the new year, our Monday plans are already being adjusted because of the holiday. Gavin was supposed to get his labs drawn today but I'm not sure if they'll be open because of the holiday. If they aren't, we'll simply have to move things to Tuesday morning. It must happen Monday or Tuesday because he's out of Clozapine for Wednesday. As long as his labs are good by Wednesday, we'll have the script by the end of the day. This makes Gavin a bit nervous but it will all work out.

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January 1, 2018
Read more about the article I like to focus on what he CAN do and less on the things he can’t
Gavin / Inspirational Posts / My thoughts

I like to focus on what he CAN do and less on the things he can’t

For all Gavin's struggles, and they are many, he still does some pretty amazing things. While he'll never be independent, that doesn't mean he's not gaining some independence. ☺ Every single morning, Gavin begins his day with a bowl of oatmeal. He makes it all by himself and when he doesn't have chocolate chips to mix in, he simply cuts up an apple instead. He used a special tool we have that let's him safely cut up and remove the core of an apple. He doesn't use a knife, especially unsupervised. My whole point here is that it's important that I focus on things like this because it's so easy to get wrapped up in the things he can't do. The reality is, there are a great many things he…

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December 31, 2017
Read more about the article Family therapy just took a heartbreaking and unexpected turn
Family Therapy / Gavin / My thoughts

Family therapy just took a heartbreaking and unexpected turn

Family therapy has become a routine thing for my family. It's important that we stay ahead of anything that's going on and ensure that the kids are getting what they need. Parenting three kids with Autism and various other special needs, makes it damn near impossible to meet all their needs. Therapy helps us to make sure that we're at least meeting the most important ones. Anyway, last night was pretty routine, right up until the end of the session. I honestly don't even remember what triggered this but basically, out of nowhere, Gavin had a total breakdown. He starts sobbing and we finally get out of him what's causing him distress. Apparently, Gavin is having thoughts of punching people in the face. He isn't wanting to act on it,…

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December 29, 2017
Read more about the article We had a really close call
Clozapine / Gavin / Medication Management / My thoughts

We had a really close call

Yesterday afternoon, we realized that there was a problem with Gavin's Clozapine prescription. The problem was that we never received it. Last month, for whatever reason, the pharmacy didn't include the Clozapine in his predosed packets. Instead, they sent it out separately. Not a big deal.. Unfortunately, there was a change made to his prescription that we were never made aware of and that created a problem. For some reason, Gavin's prescription was reverted back to a seven day only. He'd been on a thirty day script for at least a year now. Not knowing this in advance created a problem because we needed to have his labs done every single Monday. This left us without a refill and working with the pharmacy to figure out what happened. I'm waiting…

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December 28, 2017