Yes, kids, it’s been a while since our last update. I blame hospital visits for that one. I’m pretty sure I completely skipped updating when Namine got her distractors out. Yes, she no longer has distractors, and her plastic surgeon, Dr. Denny, proclaimed her jaw stronger than he expected. (He expected to have to leave one or both in place, at least for another month. Yay for us!)
To fast forward a bit, Namine is doing well. The doctors seem ready to decanulate her (for the uninitiated, that means the trach can come out!) but as we have more surgeries soon, we opted to wait. Namine is scheduled to have her cleft palate repaired in June, and God only knows when ortho will fix her feet. They better hurry up, though, because Namine is moving more than ever and seems to want to stand up. So, we think we may say okay to decanulation in the summer of ’11. That will also depend on when her cardiologists want to do the Fontan heart surgery. So, as it is with so much, we’ll see. But in the meantime, Namine has learned to scoot on her butt to get around (one of my aunts bought her a plastic mat for the living room, since it’s much easier to scoot on than carpet), but we’re also trying to get her to crawl. Some days yield more cooperation than others. Physical and speech therapy continue, and Namine is improving and learning new things every day. One of those things is to wag her finger at us when we scold her for misbehaving. (Thanks, Dad. Like she’s not full of attitude as it is.) In other words, she’s acting more and more like a normal 2 year old, which she nearly is. (Talk about unbelievable!) But she’s learning good things, too; she’s learning more and more signs every day (which means I am, too), and she loves to talk and sing. No change there.
Jessica’s mom has a pacemaker/defibrillator than started acting up and shocking her repeatedly a few weeks ago. So they admitted her to the hospital, and she actually just came home today. So, please keep her in your prayers.
Because we can never have too many people in the hospital, I took Jessica herself to the ER last week, only to find that she had appendicitis. That’s the second organ in just a few short months; she recently had her gall bladder out, too. Her surgeon wanted to know if it was the last organ she’s be removing, and I think she was only half kidding. So Jessica’s at home again on the mend, but still in pain. I remember my hernia repair and the pain that came with, and she has more than double what I had to go through. Plus, she still has the umbilical hernia from the C-section repair that the doctors can’t do anything about, because there’s just too much damage to the area. Gotta just wait it out for a while, according to them. Easy for you to say.