Remember all that depressing news?

There was a time when this blog was filled with updates on some not-so-upbeat news about Emma's medical condition.  I've just realized that the topics of my blog posts have become increasingly less about Emma's health issues and more about her being a normal child.  Rejoice!

That still doesn't mean that Emma is without her problems.  I certainly do not dwell on them, but people frequently ask us how she's doing.  Most people want to know how she's DOING, not just how-is-she?-she's-fine-thanks.  So here's my best attempt at a recap of Emma's health:

Emma goes to Shriner's on Wednesday for a bladder pressure and capacity test, which she has failed every time recently because she's two.  It's hard to get a reading on her bladder's natural capacity and natural pressure because the squirmy worm wiggles and puts pressure on her bladder, causing it to empty....blah blah blah.  Nothing they're worried about, but this test won't really be meaningful until she understands what it means to lie still and actually do it.  She will also have a renal ultrasound to ensure that urine is not refluxing from her bladder back into her kidneys.  This test usually turns out just fine.

Emma is about 26.5 pounds, and I think around 32.5 inches long.  She is very short for her age, due to two things: neither Russell nor I are large in stature, and kids with SB are shorter anyway because they don't really bear weight on their legs.  Weight-bearing exercise is what causes bones to grow long and strong.

Our biggest battle is the choking.  Any of you who have been around her for a length of time know what I'm talking about.  You know that awful feeling when you swallow a drink and it goes down the wrong pipe?  You just took a big deep breath even thinking about it, didn't you?  Well that happens to Emma several times a day with her saliva.  Sometimes they are worse than others, and her nose and mouth turn blue because she can't catch her breath.  Her body's natural reactions are fighting each other: her diaphragm is working hard to cough and expel the liquid from her airway, but her lungs are trying to inhale through the airway.  Sometimes it's so bad that she briefly loses consciousness, her eyes roll back in her head, her whole face turns blue, and her body goes limp...and it scares the bejeebies out of everyone around her.  I'm just waiting to get a phone call from her preschool telling me that she had one of these episodes and that they don't feel comfortable keeping her anymore.  There's nothing you can do to help Emma in any of these choking scenarios...she has to just come out of it on her own.

Emma's voice is always a little hoarse because all that choking and coughing has stressed her vocal chords.  She doesn't sound like a man trapped in a 2-year-old's body or anything, but her voice isn't as high-pitched as other 2-year-olds'.

She still wears her bipap mask at night and during naps.  We all hate it, Emma included.

Emma is working hard at therapy, and she has a walking gait down pat.  However, her balance still isn't good enough to be in an independent walker.  She's still walking in a walker that helps her balance her upper body.  She's in her 3rd pair of AFO's, and she has a set of twister straps that help rotate her hips out when she walks because one of them in particular has the tendency to rotate in.

She has a full set of teeth and hates having them brushed.  I would, too, if I had to use that nasty toothpaste that apparently all toothpaste companies think children love because it's the only flavor anyone makes.

Emma eats really well, and if she's in a bad mood and doesn't want to eat what we're trying to give her, she will make herself gag.  Her gag reflex is very sensitive anyway, and now she has figured out how to activate it herself.  Lovely.  We have to tell her to slow down all the time, and we have to really watch how much water she gulps down from a sippy cup.  Even though she can drink water without choking on it, she tends to get carried away and tries to take down half the cup at once.  The ONLY thing she drinks is water and can't stand milk or juice (Doctors and dentists love this about her - so much better for her teeth and sugar intake!) 

We are pretty sure that Emma has no feeling from her knees down.  Right up above her knees we think she has some feeling, but past that it's definitely nothing.

The thing I forget about her having is a shunt.  This is a really big deal to other SB moms, but in light of everything else we deal with, I don't even think about it.

So there's your medical update.  It's a lot of random information to throw together.  Imagine being her preschool teachers and having all this thrown at you.  Yikes.  Thank goodness she's well-behaved!