Archive for September, 2015

The Beat Goes On

So…it’s been about 4 months since Eliana’s transplant.  You might be wondering “how’s it going?”

I’ve tried a few analogies, but let’s use this one today.  It’s like the feeling you get when there’s been a week of steady rain, but suddenly the rain stops, the clouds part, the sun comes out…and a half-hour later you’re covered with mosquitos on a day that’s 95 degrees with 100% humidity.  And you’re not sure whether there will end up being a flood or not.

One the one hand, things are very good.  The kidney is still working awesomely, and lots of other stuff is coming along nicely.  But now we have to work our way through the ever-lengthening “we’ll worry about that after transplant” to-do list.  Here’s a taste.

  • Eating (Feeding Therapist):  As part of this therapy she’s also receiving VitalStim therapy to help train her neck muscles. (I call it electro-shock therapy but I’m not supposed to.)
  • Speech (Speech Therapist; Feeding Therapist):  She’s still a little indistinct, but has virtually caught up to her age with words, phrases and understanding.  A side effect of VitalStim therapy is that kids often get much more vocal afterwards, so it’s helpful to have both.
  • Walking (Physical Therapist; Occupational Therapist):  Ain’t there yet, and frankly, it’s starting to get a little annoying to have to haul her everywhere.  Especially since it’s hard to ignore her clearly enunciated demands for “UP” and “OUTSIDE” over and over again.  Dang speech therapy.  Turns out there’s a good reason for the difficulty, though. Which leads to…
  • Spine/Leg Length (Orthopedist; Orthotist; Physical Therapist): She’s had quite the curve in her spine for a long time, and we finally have an appointment with the orthopedist to take a look.  Then one day the physical therapist took a close look at Eliana’s legs and it turns out her right leg is a couple of centimeters shorter than her left one.  Funny that – probably explains why she stands on her right toes instead of keeping her foot flat.  Looks like she’ll have several sets of braces and lifts for the time being until we see how things shake out.
    • (Amusing story here.  One of her nephrologists is fanatical about getting an “accurate” length at each visit.  He always remeasures after the nurse is done, always gets a different number, and always enters his as correct.  Wonder how many times the nurse measured one leg and he measured the other?)
  • Infectious disease control (Parents):  You think we were tough on visitors before transplant? Wait ’til you see us with an immune-suppressed baby during cold and flu season. Even freakier when you consider things like this recent article about infections in transplant patients.

So…better?  Absolutely.  But different.  Hard to complain when you see scenes like these, though.

IMG_20150927_084351 IMG_20150919_104449


September 27, 2015 at 6:25 PM 1 comment

This is the One Percent

I’ve just been informed that this is our one-hundredth blog post.


Amy says I have to acknowledge the milestone, but I couldn’t figure out a way to casually work it into another topic, so here it is. Now we all have to get back to work – even Eliana.


September 27, 2015 at 1:31 PM 3 comments

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