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Rush Hour
Never again will I EVER make an appointment in Baltimore after 3 PM. Also, never again will I EVER bring Roslynn along with us. As if Greyson’s crying for an hour wasn’t hard enough, Roslynn decided to give us a full-blown concert of nursery rhyme songs on the way home. Everything from “Mary had a…
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Goodbye summer, hello fall.
November will mark one full year since we began our diagnosis journey. Though we are getting closer and have some pieces to the puzzle complete, there’s still a long way to go. Greyson has adjusted well to his doubled dose of meds, but we are still seeing seizure activity and even some mini-stroke episodes every…
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Side Effects
We started Greyson on his anticonvulsant, Trileptal on Friday evening. Saturday morning, we gave him the second dose 12 hours after, as directed. Derek and I did not notice any changes Friday, but Saturday morning we experienced a strange side effect from the medicine. Greyson seemed to have lost the feeling/control in his legs, stumbling…
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A tic or not a tic….that is the question.
About a month ago, Greyson began doing a strange flopping behavior where his upper body goes completely limp and he does a little twitchy jerking motion. In the above video right around 9 seconds, you can see G approach the cube bookcase and go limp, then jerk around. If you missed the movement in the…
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Dear World,
I see you staring at me. I feel your judgmental eyes looking at me in the grocery store, the park and at the doctor’s office. I know you see the tears in my eyes as I am running after my child, who is throwing himself around on the floor and screaming. I understand why you…
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You win none, you lose many.
Whether or not you have a child, spouse, significant other, etc., I think anyone can relate to this post. We all know the saying, “You win some, you lose some”, but my twist on this is, “You win none and you lose many.” Naturally I’m talking about friends. We all (hopefully) have them, and any…
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I saw the sign
I used to loathe Ace of Base. My sister Amanda used to play the CD on repeat and it drove me crazy. I was always more of a Spice Girls kind of kid. I would set up my parent’s front porch as the stage and forced everyone to sit in chairs on the front lawn,…
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Mr. Derek Martin
Many people that know me, know that I am a firm believer in the saying, whatever happens, happens. In October 2011, I was hired to be a soprano in the choir at Bethany Presbyterian Church in Lancaster City. Unbeknownst to me, the church was a short walk from my parents house, and shared a parking…
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May showers bring……May tantrums?
May brought us a Physical Therapy evaluation at Schreiber Pediatric Rehab Center in Lancaster, the start of our in-home ABA Services and a consultation for bilateral tubes in Greyson’s ears. The evaluation for PT did not go well. Greyson refused to cooperate with any of the tasks that the evaluator presented him with. After about…
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Good Morning, Baltimore.
The morning of April 27th 2018 began at 3:45 am for Derek and I. I had a difficult night tossing and turning, anxious about what the doctors could possibly say or recommend at our appointments that day. The wonderful thing about the Hunter Nelson Sturge-Weber Syndrome clinic at Kennedy Krieger, was that the program coordinator…
