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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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A “Dig-a-lay-lay” Birthday
Just a quick reflection of this past celebratory weekend…… If you’ve read my previous posts, you know that Derek and I are somewhat decent at deciphering Greyson’s vocal stims. For example, “Uh-DUHHHHHH” means he’s really mad and you should leave him alone and “dig-dig” is typically something funny (it’s turned into more of a “tig-tig”…
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Patched
In December 2017, Greyson had bilateral ear tubes put in for frequent ear infections. The tubes appeared to have been working for a few months, but by late 2019, we noticed that he was having frequent infections again. Turns out, Greyson’s tubes never fell out, like they were supposed to, falling into his inner ear…
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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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Lost Time
So much has happened since my last post, I don’t even know where to begin! For starters, I lost my job on March 2. I am not going to go into details about the breakup between me and my former employer, but at the time I was a wreck. After the initial shock and sadness,…
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Playing House
When I was younger, I loved playing house. I would go outside and play in our log cabin playhouse (it was huge and made out of real wood by our neighbor) for hours. The playhouse was the place to be on our block, the entire backyard made into a kid’s playground dream. We were extremely…
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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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Chances
The past two weeks have been really tough. Greyson has barely slept, which means nobody in the Martin house is resting well, causing lots of grumpy kids. A new nightly ritual is that while we are eating dinner, G will impulsively throw his entire plate of food on the floor and scream bloody murder. He…
