Common Variable Immunodeficiency Archives - Page 127 of 260

Sometimes #Autism can be incredibly frustrating

It's been a very frustrating day. We had to totally adjust our plans because Elliott was home sick but we try very hard to roll with the punches. Autism and/or Special Needs parents have to be able to adapt because they living in a ery fluid environment. I was able to get Gavin to his appointment at Akron Children's Hospital but that ended up being frustrating as well. His gasteo is really nice and she's incredibly patient. ☺ I've spoken about this many times over the years but it bears repeating once again. Gavin is not a reliable source of information about anything, especially when it comes to his health. He struggles with memory issues and even basic comprehension. None of this is his fault but he very much muddies…

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November 15, 2018

Autism Parenting Insight / My thoughts

This morning is a perfect example of why #Autism and #SpecialNeeds parents need to be flexible

Today's already not going as planned. I was supposed to get the boys to school, go walking and then take Gavin to Akron Children's Hospital. Unfortunately, things fell apart rather quickly this morning. Elliott woke up not feeling well. He's got a runny nose, sore throat and now a fever. It appears as though he's spiking a fever because he went from 99°F to almost 101°F in a span of a few maybe 15 minutes. This is most likely nothing but because of the Whooping Cough thing at school, they're tracking the kids with fevers I guess. That makes sense actually. Emmett was the one directly exposed and treated with antibiotics. He remains a-symptomatic and so does everyone else in the class, from what I understand. Anyway, as I said,…

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November 14, 2018

Akron Children's Hospital / Gastroenterology / Gavin

Here’s why Gavin is returning to @AkronChildrens hospital today

We have our second out of town appointment today. This time it's for Gavin and it's with gastroenterology at Akron Children's Hospital. This is really just a follow-up because there's some lingering questions surrounding the results of his endoscopy and colonoscopy. I don't think it's anything serious but we need to discuss it. There are also some medication related changes we need to figure out as well. Gavin will also need his blood work done today. This trip to Akron will bring us really close to the time I need to pick up the kids after school. I think we'll be fine but we won't be able to afford any significant hangups. I would love it if we can walk out of this appointment with good news. Truthfully, it doesn't…

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November 14, 2018

Akron Children's Hospital / Elliott / My thoughts / Psychiatry

He can go from zero to rage in no time flat

Elliott's appointment went pretty well. It was with the Behavioral Health Center at Akron Children's Hospital and it was also the first time we had really been to the new building. It's pretty amazing.. ☺ This trip was basically a followup and med check. Nothing new really happened and nothing has changed as far as medication is concerned. Elliott had a few tense moments because he became very frustrated. That's sorta what Elliott does. He goes from zero to rage in not time flat and his frustration threshold is very low. It was good that it happened because they were a there to witness some of the challenges he's dealing with first hand. Anyway, I took Elliott to get lunch and was kinda excited about that because he and I…

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November 14, 2018

Akron Children's Hospital / Elliott / My thoughts / Psychiatry

Long night and busy day

This begins our week of out of town appointments. Here's the plan for today.

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November 13, 2018

Akron Children's Hospital / Elliott / Emmett John / Gastroenterology / Gavin / Lizze / My thoughts / Pediatrics / Psychiatry

This is an unbelievably busy week

It's going to be a seriously busy week and it's going to involve a great deal of driving. Elliott has an appointment at Akron Children's Hospital in the morning. This is for a medication check with the behavioral health center. The drive will likely be longer than the actual appointment but it is what it is. On Wednesday, I'll be returning to Akron Children's Hospital again, this time with Gavin. He's got a follow up with gastroenterology. We've been waiting for this and I need to make this happen. On Thursday, Lizze has an appointment in the morning and on Friday, I'm back at Akron Children's Hospital once more for the boys. This is just a regular thing with their pediatrician. It's not a big deal but we still have…

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November 13, 2018

My thoughts

A major update

I know I keep saying this and I apologize but this is going to be a super quick update. This is in regards to the meeting I had today. You can read the previous posts (beginning here) to see the background on that. Without going into detail, this meeting went so much better than I expected and I'm so unbelievably grateful for that. I felt that I was taken seriously and can't express what that means to me. I never felt judged or like I was an inconvenience to this person I met with either. I walked in feeling like my legs could barely keep me upright. I left feeling like an enormous weight had been lifted of my shoulders. Shortly after getting home, my whole body just began shutting…

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November 12, 2018

My thoughts

I’m so scared

I'm getting ready to leave for the most difficult meeting of my life. I feel sick to my stomach, I haven't eaten anything and I only slept for about a half hour last night. You can read what this is all about in the below link. "I'm no longer a child" It's hard to imagine how one person can have such an impact on my life that even 30 years later, the sight of them instantly brings back feelings of being powerless, terrified and ashamed. https://www.theautismdad.com/2018/11/12/im-no-longer-a-child/ I had to take something to keep me from vomiting. This is not going to be easy but it's the right thing to do and the only thing I can live with.

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November 12, 2018