We’re praying this finally helps Emmett with his pain

Today's trip to the immunologist was very trying for me personally. It felt absolutely chaotic and frustrating because everyone was experiencing some degree of anxiety. That made them difficult to manage as well as very, very loud. I always find it odd how my kids can be very sensitive to sound and yet outrageously loud at the same time. Aside from the appointment and the drive being overwhelming for me, the results of the appointment were relatively positive. Just so we're clear, everyone behaved really well and cooperated as best they could. This was a big ask for them and truthfully, it went really well. It was just a lot for me. The staff loves seeing everyone and it's like their major event for the day. I was just overwhelmed…

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There was blood everywhere and it looked like a crime scene

This morning has been a fucking nightmare. All I needed to do was get everyone to the doctors. We were all going to the same place. I was mentally prepared for the challenges associated with that because most of them are predictable.. Unfortunately, things didn't go as planned. We're trying to get everyone ready to leave and Emmett gets so stressed out over his clothes that he has a massive meltdown. This was totally a sensory thing and outside of his control. That massive meltdown led to a massive nose bleed that took me forever to get under control. There was blood everywhere and it looked like a crime scene. Both sides of his nose bled and that's a first for us. Emmett has been struggling with nose bleeds for…

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It’s going to be a very long day

All things considered, we had a pretty good day. Emmett was feeling better eariler but was miserable at bedtime. I'm hoping he sleeps through the night because we have a busy day ahead of us. It's going to be a very long day. I have to get Lizze and the boys to Cleveland for their follow-up appointments with immunology and allergy. We'll be gone for most of the day but home just in time to get to Wednesday night therapy. I'm really tired and feeling a bit stressed out but my favorite people need to be at the doctors in the morning. I'll be glad when 6 PM rolls around because I'll be about to sorta shutdown for the day. I'm counting the minutes. :-)

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If that’s not how you roll then do it for your kids

There's zero part of me that wants to do anything positive for myself today. I'm feeling depressed and exhausted but if I give up control to those feelings, it becomes a very slippery slope and I'll be more inclined to do it again. Selfcare is absolutely vital, especially when it's the last thing in the world you want to do. It's not easy putting yourself first at times but it's really important that you find a way to do it. It's for that reason, as well as a few others, I'm pushing myself to go walking. Whenever I'm in a place where I just don't care about myself, I think about my kids and what they would do if I wasn't here to care for them. That's really good motivation…

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I’m embracing this moment for as long as I can

Emmett is feeling better this morning and that's awesome. He can't return to school today though because he has to be clear of a fever for 24 hours and he hasn't been yet. If he remains fever free at lunchtime, he'll be good. ☺ Tomorrow we will be at his specialist in Cleveland for a follow-up. This is important because his fever cycles are becoming more frequent and that's causing him a great deal of pain. We also need to discuss the possibility that he's got something called cyclic neutropenia rather than PFAPA. Frankly, aside from accuracy, I don't know if it even matters. I don't believe there's a treatment for cynic neutropenia and we know there isn't one for PFAPA. The only reason it would matter is if treatment…

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Gavin said something very disturbing yesterday and this is how we’re handling it

Yesterday Gavin told me something and it's really concerning for a number of reasons. I'm just going to get into what he told me and then discuss the reasons for concern and what we can do about it. Out of nowhere, Gavin approached me yesterday and wanted to tell me something. I had assumed it was about a game or something and was not paying a great deal of attention. The next words out of his mouth were "I keep having thoughts of stabbing you guys". That got my immediate and undivided attention. I remained calm and asked him to explain a bit more about these thoughts. He gave me the following example: when I'm washing the dishes and cleaning a knife, I think about what would happen if one…

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I had to really prepare Emmett for his doctor appointment today

Emmett did really well at his impromptu doctor appointment this morning. He needed to be seen because he's running a fever and presenting with what looks like strep throat. Poor Emmett won't talk because it hurts too much and Advil doesn't seem to help. Anyway, on the way to the appointment I prepped a nervous Emmett for what would most likely be a throat swab. He hates those and I don't blame him, No one likes those but in Emmett's case, it's a sensory challenge. I figured that would likely be the worst case scenario and I was right. He kept backing away from the nurse but ended up doing awesome. We immediately distracted him and got him giggling. Fun fact, Autism parents become masters in the art of redirection…

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Emmett is absolutely miserable and will see the doctor this morning

Just got back from taking Elliott to school and Gavin for his blood work. Emmett has an appointment at 10:30 AM to make sure he's not dealing with strep (which is a frequent friend of his). It's a good thing we scheduled the appointment because his fever is climbing and he's over 101°F now. He's not talking because his throat hurts so bad and with the fever, it feels like maybe it's strep throat. That would explain everything but is easily treated and he should be feeling better soon. Again, assuming it's strep throat. It's so hard to know what's going on because running a fever doesn't necessarily mean anything when it comes to Emmett. He runs fevers all the time and he's not sick. When he has symptoms that…

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