Read more about the article We received some amazing news last night
My thoughts

We received some amazing news last night

I was able to sleep in this morning and that was amazing. We have some errands to run before the boys get home this afternoon. I have to pick something up for the podcast and Lizze needs some art supplies so she can work on altered art books with Elliott. These are very therapeutic and we're trying to help Elliott find a means of expressing himself in a more constructive way. We also need to hit the grocery store because we need food. It's going to be a very, very, very challenging week ahead because Lizze's headache infusions were approved and she starts Monday. ☺ I'll talk more about that next time because that's a complicated, logistical nightmare but we have to make it work. I just got back from…

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February 9, 2019
Read more about the article I’m frustrated, heartbroken and unable to sleep
Autism Parenting Struggles / Elliott / Gavin / My thoughts

I’m frustrated, heartbroken and unable to sleep

Life has been getting in the way of writing lately and that's frustrating. This is a major outlet for me and when it's impeded, I tend to struggle a bit more. My intention with this post is to play catch-up. I think the last time I wrote anything significant was in regards to our chaotic trip to the immunologist eariler in the week, so we'll pick things up after that. The following day, I had a doctor's appointment of my own. It was just a check-up with my primary but the results of the check-up were relatively significant, at least for me. The appointment went really well. My blood pressure was perfect and my weight is continuing to drop off. My big concern was the results of my recent lab…

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February 8, 2019
Read more about the article I’m focusing on #selfcare and seeing my doctor this morning
Fit4Autism / My thoughts / Self-Care

I’m focusing on #selfcare and seeing my doctor this morning

As part of my focus on selfcare, I'm seeing my doctor this morning. For a long time, I avoided the doctor because I wasn't making myself a priority. I reached a point that by the time I realized I needed to go back, I was too afraid of what I might learn. When I did eventually return, I learned I had some work to do and that I needed to start making myself a priority or my health would continue to suffer. My health wasn't too bad but my numbers were out of whack and my weight was out of control. I needed to make some serious changes and the sooner the better. Long story short, I did just that. Since November of 2017, I've lost 40 lbs, my cholesterol…

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February 7, 2019
Read more about the article We’re praying this finally helps Emmett with his pain
Emmett John / My thoughts / PFAPA

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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February 6, 2019
Read more about the article There was blood everywhere and it looked like a crime scene
Autism Parenting Struggles / Emmett John / My thoughts

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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February 6, 2019
Read more about the article It’s going to be a very long day
My thoughts

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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February 6, 2019
Read more about the article If that’s not how you roll then do it for your kids
Autism Parenting Insight / My thoughts / Self-Care

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
Read more about the article I’m embracing this moment for as long as I can
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