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Evaluation Day
Evaluation day in Baltimore for a diagnosis of Sturge-Weber Syndrome…..or was it? Follow us on our mini-trip down I-83 to Baltimore, MD where we receive some interesting news about Greyson’s condition.
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Recharged
COVID-19 really messed up our ABA (Applied Behavior Analysis) services Greyson had been receiving for the past 2 1/2 years. Effective mid-March, the company we were using was told that they would be stopping all in-home services, including services provided by BCBA (Board Certified Behavior Analyst) and RBT (Registered Behavior Technician) providers. Greyson’s primary insurance…
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Helmet
In the spring of 2018, Greyson was written a prescription for a fitted medical-grade helmet, to keep his head safe from the headbanging he does. In 2018, his headbanging was minimal- typically only when he was mad or upset about something and it didn’t last very long. Fast forward to December 2019 and his minimal…
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I Get High With a Little Help From My……Parents?
A fair warning before anyone reads this post: Whether you agree or disagree with medical marijuana, don’t believe in it, swear by it or are not educated in it, I do not care. This post is therefore not a lecture, recommendation or meant to sway one’s opinion in either way. This is strictly our family’s…
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Reflections of a Year: 2019
Skimming through my posts from 2019, I realized it was a lot more eventful than I thought. No wonder I’m exhausted every single day! Exactly one year ago, I was reminiscing about 2018, which was an awful year. Awful may actually be too nice. We lost several family members in 2018, and we continued to…
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King Size
Greyson has gone from 3 seizure meds, down to 2 in the past month. This transition has caused him to act out, become extremely impulsive, aggressive and nocturnal, though he doesn’t really sleep during the day either. Derek and I can deal with the lack of sleep, but the aggression is the worst of it.…
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Travel Plans
Now that we have been back from South Carolina for a few days, I finally have a moment to post about our trip, and the days leading up to it. My family typically schedules our vacations far in advance, which worked out well in this instance, since I needed time to do some research about…
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“2018: The Terrible, Horrible, No Good, Very Bad Year”
One of my favorite childhood books growing up, was Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. The book (which was later adapted into a movie in 2014) revolved around a little ginger kid named Alexander that was having a pretty crappy day. I would force my mother into reading…
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The Journey Begins
December 21, 2015 I know what you’re thinking…..This is overly dramatic. You may be right, but when you have a child with a disability, drama is the normal day-to-day scene. What was I thinking?….”Oh shit.” Here I am with a 7 month-old child, who has just started sleeping 6 hours a night and I am…
