Common Variable Immunodeficiency Archives - Page 108 of 260

An uncomfortable night’s sleep on our dilapidated couch

After an insanely uncomfortable night's sleep on our dilapidated couch, I woke to Emmett feeling much better. He had a really difficult night and ended up puking. Emmett finally fell asleep on the recliner and I passed out shortly after he did. He's feeling much better but I'm having him take it easy just in case. I'm really hoping last nights stomach issues were simply something he ate. This poor kid can't catch a break but he's feeling better and that's something.

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February 10, 2019

Emmett John / My thoughts

We just can’t catch a freaking break

We were able to get all our running around done today without too many problems. Gavin had some problems but nothing we couldn't handle. He had an off day and just seemed like he was lost. I don't know what's going on with him but hopefully, he'll be in a better place in the morning. Unfortunately, the day went downhill after we picked up the boys and brought them home. Emmett wasn't feeling well and we tried to get him to rest. He was absolutely miserable at bedtime and had a rough time falling asleep. While he did eventually drift off, he woke up shortly after and was definitely feeling worse. He came downstairs in tears and we made him comfortable on the couch. After about an hour, he ended up puking…

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February 10, 2019

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

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

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

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

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

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