Bad news

I've been continuing to follow up in regards to Gavin's NeuroPsych testing scheduled for tomorrow. After a few attempts to connect with our case manager, I haven't heard anything back. As a result, I called the Cleveland Clinic directly, checked on the status and I'm glad I did. Insurance has denied Gavin's claim three times this week already, the last being yesterday. Unbeknownst to me, the appointment had been canceled. I'm glad I did my due diligence because otherwise I would have hauled Lizze and Gavin to the Cleveland Clinic at a Godawful hour, only to find that we no longer had an appointment. The only reason I would have assumed anything in the morning is because I was told by the Cleveland Clinic eariler in the week that the…

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Never take this shit for granted

We've made tentative plans to have the boys spend the night with my parents because we may have to leave for the Cleveland Clinic around 6 AM. I've reached out to our case manager for an update and I'm waiting to hear back. Something that's really important to me is that we always stay on the same page as our parents, when it comes to watching the kids. When they are kind enough to watch the kids for us, we make it a priority to keep them up to speed on any changes to our plans, even if they're only potential. I think it's just a courtesy that they deserve because they are helping us out in a big way and I don't like springing any changes on them if…

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Taking on insurance and fighting for my son

We're still waiting to hear about Gavin's testing for tomorrow. We're stuck in insurance limbo. As soon as I found out there was a problem, I knew there was only a few things I could do. The first thing was contact Gavin's insurance case manager. If your child doesn't have a case manager, ask for one. The case manager is a single point of contact for everything related to insurance. Rather than call and talk to a random, script ready customer service rep, you have a direct line to someone who's sole purpose is to help insure your child gets what they need. I spoke with Gavin's manager in the middle of the week and explained what was going on. She immediately got involved and took over the battle. She's…

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Can you even ask for a better start to the day? I think not.

We had a pretty decent morning. The kids were in good moods and we even got out the door before 8 AM. That's a good thing.. ☺ I thought we would further the awesomeness of the morning and swing through Dunkin Donuts. The drive thru was packed but the store was empty, so we went inside. Emmett was amazed by all the donut they had and didn't hide said amazement very well. lol Elliott looks sad in the picture but he wasn't. I think I just took the picture at an odd moment. He was super happy to get donuts and so was I. As simple as that is, being able to do things like this on occasion, feels really good. We've come a long way and while we're not…

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Sending my thoughts and prayers

I wanted to take a few minutes and to say a few things about the terrorist attack that our fellow countrymen in New York endured yesterday. Our thoughts and prayers go out to all those impacted by this act of cowardice, especially those who lost their lives and their families. What happened was an example of how cruel and evil human beings can be to one another. At the same time, it's an amazing testament to how brave and strong the people of New York are. The first responders did an amazing job of neutralizing the threat and securing the area to ensure everyone's safety, with no thought of their own. We all owe them a debt of gratitude, so thank you from the bottom of my heart. To all…

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Insurance won’t pay for Gavin’s testing

We have another issue that I haven't spoke about yet but as the day is drawing closer, I should bring you up to speed. When Gavin saw his pediatric neurologist st the Cleveland Clinic last month, it was decided that he needed three additional appointments. The first appointment was with the Cole Eye Institute because the doctor suspects that the lens in each eye has become detached. It apparently requires a special exam and wouldn't otherwise be detected. This would explain the visual problems he's been experiencing. The second appointment was an EEG. Gavin hasn't had a witnessed seizure in a long time but he is epileptic. The doctor wants to make sure everything is okay. The third and arguably most important appointment is supposed to take place in two…

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This is probably why I was able to sleep

For only getting about three hours of sleep last night, I'm feeling pretty good. I think that at least knowing what Gavin's lab results were, gave me enough peace to fall asleep. Sometimes knowing what you're dealing with can help you find the strength you didn't think you had left. Hope your day gets off to a good start. ☺

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As a result, we worry all the time

I was able to get a hold of Gavin's psychiatrist's office this afternoon and got the lab results from his blood draw on Monday morning. I actually only got his Absolute Neutrophil count but that's a good chunk of information. His Absolute Neutrophil count has climbed up a couple points from 2.0 to 2.4. This is positive but we don't know why the numbers are climbing back up. Something is wrong and not knowing what it is, makes this even more difficult. We don't know what makes it better or what makes it worse. We don't know what precautions to take or when we should worry. As a result, we worry all the time.

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