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Poor Abe.

9/5/2013

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Just forty-eight hours after our last trip to the Urgent Care Clinic we found ourselves back there again today. Thankfully, today it wasn't (what could have been) a seizure. Today we were lucky enough for his ailments to actually be able to be treated with antibiotics.

He's been fussy a lot lately as I talked about in my last post but today it just seemed relentless. He refused to eat his lunch and then only wanted to cuddle (which I soaked in every second of) and he napped on me for a a good two hours. When he woke up again he had gotten worse and was hot to the touch. I took his temp with our (what will now be in the trash) "electronic" thermometer and it read 97.1 but he was flushed, his cheeks and stork bites were bright red and his skin just looked weird.

I got him to the Urgent Clinic where I had called and asked his Dad to meet me at and he was screaming so loudly we got into a private room almost immediately and his temperature was 103. We met a different Doctor this time than usual (at the same Pediatric Clinic we go to) and he seemed like a really nice (and concerned) kind of doctor, which I made sure to tell him that I appreciated his bedside manner. Anyhow, it turns out that Abram had some sort of virus but he thought that it was odd that he had a high fever with an ear infection so he is now on a round of antibiotics and I am trying to keep him comfortable with infant meds.

Poor Guy! I feel so bad for him. He is so miserable and there is nothing that I can do to help him other than give him cuddles and make him food he can tolerate. I just keep hoping he'll have a good few days but it seems like it is typically mostly bad/painful days with good days spread far and few between. No kiddo deserves to feel like this all the time. I can't help but to wonder "why my kid?!". He's had such a rough start and when I think about his birth and how hard he's had it since day one and I just get sad.

I just want him to feel good and be happy and feel comfortable. I just want him to know what it feels like to *not* feel sick or in pain in some way for more than 1/2 a day. It's terrible watching your child dealing with everything he has had to deal with. It is just not fair. 

In other news, we are still waiting to hear when our EEG will be but our Neurologist said to let him know when and where because he wants to get the report right away. So there's that. 

I think I am just feeling worn thin. I'm tired and had better get to bed. I have a feeling it's gonna be a looong night!

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    About Me

    Erin is a green-haired, tattoo-covered mama powered by sarcasm, iced coffee, and the occasional emotional spiral.

    She’s raising an incredible son with a rare genetic condition, advocating with sharp knowledge and a softer heart — because both matter.

    She's trying not to lose her mind in a house that includes her husband, her son, her mother, a team of no less than five workers, and approximately 3,000 daily interruptions.

    She’s got a sixth sense for fake people, a deep love for horror movies, and a soft spot for anyone who’s ever felt like too much and not enough at the same time.

    Erin doesn’t pretend life is perfect. She shows up messy, honest, and real—whether she’s in advocacy mode, snack-fetching mode, or “why is everything a mess” mode.

    ​She’s built of grit, wit, compassion, and just enough rage to get things done.​


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  • Home
    • About Abe >
      • Abram’s Viral Photo: The Wizard of Awws (Baby Ming) | Abram Mayhem
  • Blog
  • In the News
  • UBE2A Deficiency Syndrome
    • UBE2A Publication List
    • Abram's UBE2A Symptoms and Diagnoses >
      • Abram’s Pineal Cyst Journey: Insights, Updates, and Long-Term Care >
        • MRI Imaging of Pineal Cysts in UBE2A Deficiency
    • Why Genetic Testing
  • Helpful Links
  • Abram's Art

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