One of the most rediculous things I’ve seen is Shiya ‘chasing’ Ayrie down the hall way. Shiya starts crawling in a general direction.. and not very quickly… he’s still commando style, dragging his stomach across the floor. As Shiya crawls, Ayrie runs a few feet in front of him and screams with delight at being ‘chased’. ‘Racing’ doesn’t look that much different and I honestly can’t even tell the difference unless Ayrie tells me which is happening. It’s pretty hillarious.
Ayrie, just had his 5th surgery this week, all over a span of less than seven months. I have read endlessly (60+ hours at this point) about RRP and treatment alternatives and decided on the artemisnin/artesunate combination. I talked to lots of people, including our surgeon, our pediatrician, the International RRP organization, my father (a nurse), my friend (an epidemiologist), my sister-in-law (just attended a naturopath confernece) and anyone else who would listen! I created a dosing schedule (3 times a day, 7mg/kg of the artemisinin and 3mg/kg of the…read more
am i dreaming? am i in graduate school again? no… but it feels like it. and thank goodness, thank the universe, for the great research training that i recieved in graduate school. i am poring over articles about cidofovir and artemisinin and artensunate…. looking at the methodology, learning about potential toxocity, trying to understant the benefits… all so i can make an informed choice about ayrie’s treatment. at this point i have logged about 45 hours of readin over the last 2 weeks.
it started when we pulled up to my parents house and johan and orion were waiting in the driveway. i opened the car door and ayrie ran out of the car, straight to his cousins, and they ran off to play as though they have been playing together every day for their whole lives… it ended when ayrie, shiya and i boarded the plane and ayrie fell apart, sobbing, because grammy wasn’t getting on the airplane with us. it was truly wonderful to be with family.
today shiya was crying…. ( a lot of sentences start like that because he’s starting to crawl and stand up, meaning that he’s constantly falling down). ….and ayrie was so nurturing! one time ayrie sat down next to him and rubbed his back saying, ‘it’s okay, shiya. it’s okay.” another time ayrie brought him toys, rattling each one in front of shiya to make them more enticing. and another time ayrie ran over and gave him a hige hug.
I have never weighed more in my life… and i can’t sleep or type without a lot of ibuprofin because it hurts so much. what do these have in common? stress! I learned just how sensative my body is to stress when I was pregnant to shiya. I had gestational diabetes, which they found through a glucose test. they had me drink sygar syrup and then took my blood sugar readings at certain times.  What we found was that by the second reading, my body had actually controlled the…read more
Drawing airplanes Enjoying the outdoors Amongst the flowers brothers
Shiya is turning into a tiny little person! Last week he learned how to crawl, how to wave hello and got his first two teeth. He loves Ayrie above all others, and shrieks in delight when ayrie comes into his field of vision. He’s just starting to move beyond standing, and is beginning to pull himself up on anything and everything. This was pretty funny in the bath tub last night because he didn’t have traction with his hands or feet and kept falling back into the water, to great…read more
Ayrie is such a beautiful, resilient little boy. But as some of you know, he has not been able to talk since the beginning of July. Even when he’s yelling, it comes out only as a whisper. Ayrie has recurrent laryngeal papillomatosis (RRP), a very rare disease. It was first described 300 years ago and is the most common benign tumor of the larynx, afflicting approximately 4.3 per 100,000 infants and children in the United States. There is no treatment for RRP, just surgical removal. Ayrie has had four surgeries…read more
