Common Variable Immunodeficiency Archives - Page 109 of 260

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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February 5, 2019

Emmett John / My thoughts / PFAPA

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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February 5, 2019

Autism Parenting Insight / Gavin / My thoughts

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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February 5, 2019

Akron Children's Hospital / Emmett John / My thoughts / Pediatrics

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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February 4, 2019

Emmett John / My thoughts

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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February 4, 2019

Emmett John / My thoughts

I’m worried

Emmett isn't feeling well this morning. His throat has been bothering him for the last day or so. He woke up in tears about 4 AM because it hurt so bad. He's not talking and may be actually running a fever. I say maybe because he's pushing 101°F but he also has a fever disorder and he runs fevers for no reason. Unfortunately, he won't be in school today as a result. If he feels better, then I'll get him there later. Emmett loves school and hates staying home. If he ever wants to stay home, something is definitely wrong. The school is working with us and Emmett is staying current with his work. His grades are impacted and we have a general doctor's note sorta covering the health issues…

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February 4, 2019

My thoughts

It’s been a challenging day for me because I’m human and not a superhero

Today was a very rough Autism and Special Needs parent day for me. sometimes life is cruel and all we can do is find ways to physically survive. Here's what I did today.

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February 3, 2019

My thoughts

Getting myself back on track

January was kind of a wash for me in regards to walking. When my grandpa passed in early January, that sorta took the wind out if my sails and I just stopped walking everyday. I was also experiencing high levels of anxiety and that only made things worse. I was averaging about 80 miles a month and I just bombed in January. I've cut myself some slack and I'm not beating myself up over it. Beating myself up over it serves no purpose. What I am going to do is correct this going forward. That being said, I made myself go walking this afternoon and it went pretty well. It was cold but not too bad. I'm glad I went and was able to grab about 3.1 miles.. It felt…

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February 3, 2019