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Wednesday, January 26, 2011

An Update

I haven't written a post like this in awhile, but for recording keeping sake, here's Charlotte Amalie's latest medical run-down:

Weight: a whopping 7.8 kilos (17.5 pounds)

Length: 63.5 cm (25 inches)

Eyes: Her left pupil still dilates differently than her right (scaring nurses who meet her for the first time, and neurologists) but we now know that the eye is related to the paralyzed vocal cord. We have our next follow up in April, and hopefully she'll still have a clean bill of health.

Vocal Cords: Left is still paralyzed, but she's making great improvement with how well she is compensating with the right vocal cord. We've started actual speech therapy (not just feeding therapy with the speech therapist) and we're slowly introducing sign language. She will be re-scoped in March

Lungs: Charlotte fluctuates from needing 1/8 to 1/4 O2, depending on her heart rate and her oxygen sats. She needs 1/4 a night about half the time, but can almost always be weaned down to an eighth by morning. She's still taking her diuretics to keep her lungs dry, and also has a few inhalers that keep her open and breathing. At her last pulmonary appointment they said she is currently better than she ever has been. Awesome! We're thinking that after RSV season, we might just be able to kick this oxygen. So maybe around May? We sure hope so!

GI: Charlotte's now on 20 hour continuous feeds. She's doing so so so SO much better on the continuous feeding than she was on bolus feeding. We have an appointment in two weeks to meet with the Complex Care Center at CHOP and we'll decide then if we want to start condensing her feeds again or if we're just going to roll with the continuous feeds. We believe that if she can just make it another 9 months or so, she'll be developmentally much more capable of handling the reflux and such. So we'll decide if we just keep plugging along for another 9 months or if we try to handle the reflux now. Handling the reflux now means another "event" is possible and she's more uncomfortable, but it's much more physiologically "normal" for her to have bolus feeds than it is for the continuous feeds. The continuous feeds help her reflux, but they stunt her gut and stomach development. So yeah, flip a coin. Any suggestions?

Developmental: Charlotte is capable of rolling over, but I wouldn't say she's rolling over. She's done it a few times, but it's not a daily occasion.  She's also capable of sitting for 20 seconds or so. These are our goals to master by HER FIRST BIRTHDAY (holy dang, it's a month away!).  Cognitively she's doing well, tracking and interacting and playing a lot more than she used to. It's amazing how quickly skills develop. We're also hoping that by her first birthday she'll be passing toys from one hand to another and that she'll be able to reach out and grab something more efficiently. Currently she reaches for things, but she has a bit of a hard time actually grasping things in an efficient manner. We're working on it :)

Medicines: Daily: Aldactone 2xday: Prilosec, Diuril, Flovent, KCL 4xday: Erythromycin PRN: Albuterol, mylecon, tylenol

Notice how I didn't label anything Oral or Feeding? Yeah, that's because she's not doing it. She'll put her hands in her mouth, and she's much less sensitive in regards to her gag reflex, but still nothing by mouth. Another goal for her first birthday, I suppose.

And that's our girl. Medically speaking, of course.


  1. Thank-you for the update! It's good to hear how she's doing medically. Love you all! I'm so happy she's doing so well!

  2. oh!I think shopping is in order for a fancy new birthday dress!