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Abe Update!

10/25/2016

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Abram has been having a pretty great fall, so far. I can't believe that Halloween is right around the corner! Last weekend, we actually got to go on two different outings with Abram, which is basically unheard of! Saturday night, we went to the Palek Studio and Gallery's Annual Halloween Art Show. We didn't get to stay long because lights and people overwhelm Abe and he turns into something not unlike the Tasmanian Devil. If not removed from the situation - there would have been destruction, guaranteed!

Luckily, we can read him and his impulses so much better now and we know that when it's time to go - it's time to GO! I was shocked when he approached "the bride" in the photo above and shot right up in the seat next to her to wave and giggle at her. He was having so much fun saying Hello to all the people and flirting with all the ladies. This kid's got a mean game of peek-a-boo, people. 

Sunday, we went to this great pumpkin patch called the Wills Family Orchard and Pumpkin Farm. It was fantastic and literally my idea of what an adventure to a pumpkin patch SHOULD be. It's a great little place secluded in the hills surrounded by beautiful fall colors. There were people there - but not TOO MANY and upon entering they give you some shears and a wagon to go pick out and cut your own pumpkin off the vine.

It was a bright and sunny day so Abram was a little crabby at first. We were actually able to get him to wear his sunglasses for a little bit but after a bumpy wagon ride down the hill, I did manage to get a photo of him smiling! (Nevermind that it involved his Papa holding up a phone with a firetruck siren blaring.) Regardless, he had fun and it makes for some great pictures.

We ended up getting five pumpkins and went home after that but their farm had so much more to offer including a hay rack ride, corn maze, corn pool as well as goats and chickens to pet.  We figured we'd better leave while there were still smiles but we plan to make their place an annual family outing. It was just what I always thought it should be like to go to a pumpkin patch. My experiences with "pumpkin patches" prior to this involved grocery store parking lots. Hah!

Abram is also still doing his Intensive Neuro-motor therapy (aka MNRI) and he continues to improve in his fine and gross motor skills as well as making new sounds. That therapy ends about mid-November and then he will be in BOTH pre-school and therapy. So, we'll be spending a lot of time in the car traveling but for Abram - that's pretty much business as usual. So, he'll be in school Monday and Friday for just an hour and then Tuesday-Thursday he'll be in therapies including Speech, Feeding, Physical Therapy and Occupational Therapy.

We are adding Physical Therapy back into the mix because he still struggles with stairs, rough terrain and jumping. We luckily ruled out a visual depth perception issue at a specialty eye doctor last week so now we know that his issues with stairs have more to do with his brain telling his body what to do. We knew that he'd need more PT once he was school-aged anyhow - so this doesn't come as a big shock at all. Just something to add to our schedule.   

The point is, things are going well for Abram health-wise. We have a follow-up with Neurology in less than two weeks to have another EEG and find out how Abram's brain is doing on the inside. This time, it's just a short 2 hour EEG and our Neurologist is on-board with doing cannabis oil ONLY as he will be 18 months seizure free by then.  Talk about life-changing! ​

Things are going in the right direction. I couldn't be more thankful. 
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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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