This has been one hell of a week. So much sadness with friends my heart just aches. A former student died in an accident. Completely preventable. And a precious little preemie couldn't hang on any longer. Sweet Baby Jane was 6 months old. Her story was so much like my Maryn's. I am in pain for her family. May God grant them all peace.
With those events weighing on my mind, our trials these past few weeks seem much more mangageable.
Maryn's had an, um, interesting month. We needed to put her feeding tube in, and then we realized her weight gain was downright awful. So we are now strictly on tube feeds. She was expending too much energy fighting her feeds and increasing her risk of aspiration. I hate that damn tube, but it's better than the alternative. She has had decent weight gain since then, so at least it's working.
Most of her docs are moderately please right now. Neurosurg says ventricles are improving, very slowly, but I'll take it. Another visit in April. Optho figures she's far-sighted. But poor girl was destined to need glasses anyway. Look at David and me, and the rest of our families for that matter. Gastro switched us to Alimentum. Dude, that stuff is RANK! I don't remember it being that bad when Jaime was on it. He's willing to go with the NG tube for a while, so we aren't talking G-Button surgery seriously at this time. Little jaunt to the ER led us to finding out she has e. Coli AGAIN. Damn bug. That shit, along with pneumonia, scares the bejeezus outta me. The bactrim seems to be helping, so I *think* we might avoid a long hospital stay. She's at home right now. Pulmo says that all things considered, she's doing fine. Her O2 needs are up, but that's to be expected with this nasty little bug.
Jaime is working his way through the dictionary. He is talking up a storm. Of course, I have no idea what half of it is, but it's still so cute. He like to talk to his Raggedy Andy doll. Andy has to sit on his lap and bounce while Jaime talks to him. Just like we do with Jaime. Freakin' adorable! His baths are still a source of entertainment for all involved. The phrase of the moment is "clean butt." And he's so proud of that . Hilarious!
Oh, and I know I didn't tell you yet, but the kid is THREE now! WTF? How did that happen?
Off to finish up the day, which is surely going to include hugging both of my kids a little tighter tonight.