Sensory Archives - Page 119 of 471

Gavin went to bed afraid and that’s not okay

I hope everyone is staying warm. We're having a heck of a time keeping our house warm. It's terribly inefficient and because it's so freaking cold out (-30°F), the furnace is running constantly and the house is barely 64°F. Extra blankets for us tonight. ☺ Anyway, we've had a pretty good day. There were some rough patches but we made it though. I still don't have any answers on the Gavin front because they're still trying to work everything out. I mentioned previously that this is a nightmare because IVIG meds are a specialty medication and insurance has certain requirements. It's just a frustrating, convoluted mess, and at this point, it looks like Gavin will miss his Friday infusion as well. If you're keeping track, that will be two infusions…

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January 31, 2019

My thoughts

All things considered we’re doing okay this morning

It's been a low-key day so far. Emmett's not in the best mood because he's not feeling well. He's going to be a handful today but the poor kid is miserable and we're going to have to exercise patience and compassion. Elliott's in a good mood and has been spending time with his sketchbook. I love when he's being creative. I love when any of my kids are being creative, especially Elliott because he needs the constructive outlet. Gavin's sorta in his own world right now. That's not anything unusual but he's struggling to perform basic daily functions and it's heartbreaking to watch him go through this. He's very preoccupied with his missing infusions and maybe that's sapping his resources, but either way, it sucks. As for Lizze, she's up…

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January 30, 2019

Gavin / IVIG Infusion / My thoughts

It’s official, schools closed for 2 days and Gavin’s medication still hasn’t arrived

It's official.. There is no school for the next two days due to insanely cold tempratures. Friday is a bit iffy at this point but we'll know more as the week progresses. The boys are excited but also disappointed because they really enjoy school. With that out of the way, it's also official that we don't yet have a working solution for Gavin's IVIG medication shortage. They (Gavin's immunologist and Akron Children's) are still trying to work out the details of a replacement medication. This takes a bit of time because they have to navigate insurance and that's tricky on a good day. They also want to be very selective with the new medication because we don't want to have to change again. They want to find a medication without…

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January 30, 2019

Autism Parenting Struggles / Emmett John / My thoughts

Emmett’s test results came back and their very frustrating

About mid-afternoon, right before I picked Elliott up from school, Emmett's doctor called. I had left a message because we were notified that Emmett's results came back but the page that was supposed to contain the results was blank. Apparently, it was a glitch in the MyChart app. Either way, I needed them to read the results to me. Emmett was recently tested for milk and egg allergies. He used to be allergic both but he outgrew them a while ago. We wanted to make sure they hadn't begun giving him problems again because if they were, it could explain his stomach issues. At the same time, he was also retested for celiac as well. He was negative at an early age but since it runs in my family, we…

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January 29, 2019

Autism Parenting Struggles / Emmett John / My thoughts

Poor Emmett didn’t make it through the day

After waiting in the school parking lot for an hour, I went in to check on Emmett. He was in martial arts at the time and we went down to check on him. He was practicing with weapons for the upcoming tournament, which he's incredibly excited about. I could see from a distance that he was struggling and when he came over, he was almost in tears. It broke my heart to see him like this. He was trying so hard to make it through the day but he asked if he could come home. Everyone agreed that he should go home and after picking up his things, some school work, and saying our goodbyes, we were on our way. I'm glad I stayed because it sorta expedited the process…

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January 29, 2019

Gavin / IVIG Infusion / My thoughts

How is this even f*cking possible?

While I was driving the kids to school this morning, I received a phone call from Akron Children's Hospital. It was the delivery coordinator for Gavin's IVIG infusion supplies. I could tell by the frustration in his voice that I was going to need a few minutes. I spoke with him before walking the boys into the school and working on the Emmett stuff from the previous post. Turns out Gavin's supplies aren't here because there's another nationwide shortage of his life saving medication. It's literally impossible to get and the only option is to switch him to a new medication for a third time. This is never a good thing because we have no idea if the medication will work for him or if he will have a bad…

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January 29, 2019

Autism Parenting Struggles / Emmett John / My thoughts

It’s killing me to see Emmett like this

Lizze and I have been bombarded with challenges this morning. Right now, I'm going to focus on the Emmett related ones. Emmett woke up not feeling well again, and struggling to get off to school. We're trying to find a balance between getting him to school and keeping him home because he's in too much pain or discomfort. It's not easy but thankfully, Emmett desperately wants to be in school, so if he ever doesn't want to go, we know something is wrong. Lizze tackled lunches and I worked with Emmett to come up with a plan that got him to school but that he was comfortable with. He ended up being willing to try for a little while. We got to school and I spoke with the office, his…

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January 29, 2019

Gavin / IVIG Infusion / My thoughts

Gavin’s #IVIG infusion supplies never showed up and that worries me

Without going into the backstory again, Gavin is on IVIG twice a week because of his severely compromised immune system. You can read that backstory here. We received a notice from his insurance that they were no longer working with his current, longtime supplier and would be switching to a new company. This is potentially very problematic because this needs to run like a well oiled machine or there can be delays in his deliveries and that could potentially be life threatening. Lizze and I haven't even had a chance to call about this and we're already having a major problem. Gavin supplies were due to arrive last Friday and they never did. They also never arrived today and that means he's missed his infusion. He's missed quite a few…

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January 29, 2019