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@hashtagteamaria
Reboot, Take Two
It has been exactly one year since a reboot was done with Aria’s medication, Haleigh’s Hope, and with that, just less than one year since seizure control was achieved. Over the past 10 or so months, she has only had a seizure (no more clusters!), if she eats something she’s not supposed to. In January 2016, I started her on a very strict clean eating diet, and discovered a handful of specific…
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Seeing Your Child with a Disability
Seeing Your Child with a Disability
Today was the first day I looked at Aria, and saw a child with a disability, and it broke my heart. Let me explain: Since she was diagnosed with intractable epilepsy and focal cortical dysplasia with polymicrogyria, I’ve always known that she was going to have a learning disability, in the least. It was just a matter of fact, and I accepted that a while ago. I’ve always done my best to work with…
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A Crisp Autumn Morning, and Lots of Words! We went for a nice walk this morning, and Aria labeled just about everything! Stroller, wheel, sign, what color the sign was (from 50 feet away!), grass, bird, squirrel, leaf, stick, car, house.
Seizure Control, Colds, and Preschool
Seizure Control, Colds, and Preschool
It’s been quite some time since an update on Aria’s treatment; boy do we have news! On September 26th, Aria was admitted to the hospital for a routine V-EEG, just for 48 hours, to see what her brain activity was looking like just over one year post-op, pharma free, and just using CBD. Prior to this visit, I had been recording an average of three seizures per night, all less than 30 seconds with…
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The Beast in Your Sleep
The Beast in Your Sleep
I watch you fall asleep; So resistant, Then you give in. So peaceful, As your eyes droop shut. This peace is only temporary, The beast lurks in the shadows. Slithering through the crevices, Living in your head. Waiting, waiting, waiting, And then… Your body’s stiff, You groan in pain. Eyes fluttering, As you try to get away. Then it’s gone. You’re back asleep. ~•~ My toes, Hurt. My heels, Hurt.…
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One year post-op
Aria wearing her Haleigh’s Hope shirt to spread the love down at CHoP! It’s been just a little over a year since Aria’s last brain surgery, on September 3, 2015. They removed the rest of her right temporal lobe, additional sections of the right occipital and parietal lobes, and the right hippocampus in an attempt to reduce or eliminate her seizures. Her seizures were reduced, though they still…
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Sorry for the silence...
Sorry for the silence…
Hello everyone, I just wanted to apologize for the silence on our blog as of late. We have been dealing with a lot since Lincoln was placed in our home, and I promise a big update post in the next week! Just to keep you on your toes: Aria is being admitted to the hospital on Monday evening for a 48 hour V-EEG, just to see what the activity looks like a year+ after the last surgery, and since…
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Relatable: Special Sounds
I saw this piece this morning, and just had to do an excerpt on it. I think a lot of special needs Moms, Dads, and Caregivers can relate.
Quite a profound passage by Danielle Boyce, read it in full on her blog, My Special Needs Lifestyle
Those special sounds that we can relate to for Aria:
“He’ll (she’ll) grow out of it.” Really? Because not even the experts can guarantee that, and you’re obviously qualified...
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When Naptime Means Stress, Not Relaxation.
When Naptime Means Stress, Not Relaxation.
I’m jealous. I’m jealous of other parent’s nap time with their kids. A time when they can rush to get some housework done, work on a hobby, or even the luxury of taking a nap with the kids. The ability to not have to be in the same room as they sleep because you know they’re okay, and nothing bad can happen to them while they sleep. I’m jealous of you. I didn’t realize I was until today. Aria…
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I'm Prepared to be Disappointed, but That's Okay.
I’m Prepared to be Disappointed, but That’s Okay.
First thing this morning, Aria climbed over me and rolled right out of bed, taking off towards the kitchen. Startled awake, barely coherent, I grab the eye glass case off the night stand that holds her rescue dose of CBD, and chase after her. The only thought going through my head “she’s going to have a seizure in the kitchen.” She didn’t; she was bright eyed and bushy tailed, leaning against the…
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Settle Down, Anxiety, One Step at a Time.
My anxiety is running rampant right now, I’m trying not to lose my mind over this. Aria had a seizure cluster this morning, just five, (ha, just five, as if any number of seizures is okay), each roughly five minutes apart, and an average of 30 seconds each. I gave her a rescue dose during the third one, and then when she had the fifth I gave her another rescue dose and it stopped. She’s been…
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Good Things Coming
This past Monday was week six back on Haleigh’s Hope after a reboot, and week three on an increased dose. A little background on her cannabis treatment: Aria had started Haleigh’s Hope on 12/12/15, she was having about five seizures daily at that time, a slight reduction compared to when she was on all four pharmas two weeks prior. About 10 days after starting HH, she began to have more seizures,…
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Good Things Coming
This past Monday was week six back on Haleigh's Hope after a reboot, and week three on an increased dose. A little background on her cannabis treatment:
This past Monday was week six back on Haleigh’s Hope after a reboot, and week three on an increased dose. A little background on her cannabis treatment: Aria had started Haleigh’s Hope on 12/12/15, she was having about five seizures daily at that time, a slight reduction compared to when she was on all four pharmas two weeks prior. About 10 days after starting HH, she began to have more seizures,…
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We know about the plant, we know about the patent, tell the DEA: "Talk to the 6630507 hand."
We know about the plant, we know about the patent, tell the DEA: “Talk to the 6630507 hand.”
The U.S. government filed for a patent on the medicinal properties of marijuana as far back as 1999. Marijuana is currently listed as a Schedule 1 substance, the strictest category of the Controlled Substances Act, deeming it as dangerous, addictive, and no medical value. The amount of information in this particular patent number alone, disqualifies marijuana from the Controlled Substances Act.…
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**Please direct all questions/comments to the original post on wordpress, this tumblr. blog is not monitored**
This is the home page's excerpt
**THIS TUMBLR BLOG IS CLOSED**
I won’t be deleting it, but I will no longer be posting, checking messages, or checking notifications. I have been posting on multiple media outlets and can’t keep up with the messages/questions in a timely manner, so I am moving everything to one place that I can easily keep track of.
Please direct yourselves and any questions/comments to our new website:
www.TeamAriablog.wordpress.com
Scroll down and click “Follow” to be notified by email when there’s a new post! The site is currently under construction, so bare with us!
The contact form IS open!
And we’re accepting your submissions!! We want to continue to raise epilepsy awareness, so we are accepting your submissions of life with epilepsy.
THANK YOU!!
Want to share you story with epilepsy? Visit our site and submit your story to be featured on our blog! I won't be posting on here anymore about Aria, if you've been following her story, or want to start following, visit the web address pictured above or copy and paste this link: www.teamariablog.wordpress.com Everything Aria & epilepsy will be on the new blog, and questions/comments should be directed to our contact page! #TeamAria #epilepsywarrior #epilepsyawareness #submissions #wordpress #haleighshope #cbdforepilepsy #cbdforchildren #mmj #pammj
Are you still fundraising for a seizure assistance dog for Aria? Have not seen any updates on this.
We are still fundraising! Please visit our facebook page for information: facebook.com/teamariaEW
Please refer to the most recent post on our tumblr blog “Just a quick post”
I will not be posting on this blog anymore, everything will be through our new website!