In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
It's Monday. One week ago today we saw the first real symptoms of his cold. You know, the runny nose, sad eyes. Although I felt like he might be a little "off" on Sunday. But I've felt that way before and it was nothing. So I've told him that his 7-10 days of virus are almost over. It's time to get better, and fast.
He is doing a bit better. He played all night with his nurse last night, so he's sleeping pretty soundly today. He did lose his IV access early this morning, so we're now on IV # 5. Usually he keeps them a whole lot longer but for some reason, this one clotted off after less than 24 hours. And five pokes before one was finally a good one. Not fun at all.
If his fevers continue, they'll get ENT involved to try to see if he's still struggling with an ear infection in spite of the antibiotics he was given for them. But for right now, we're just holding tight and hoping for some small improvement.
Yesterday, a sweet 8 year old girl, Emily, was buried. She had a mitochondrial disorder, but also the biggest, sweetest smile. I loved the pictures her mom would share. Emily loved Hello, Kitty and the color pink. Her mom asked for her friends to wear pink in honor of Emily. Because he's in PICU, Aaron doesn't wear any clothes. But we found some pink coban and made wrist wraps for him. Fly high, sweet princess. You are missed.