Mama Bear

Sorry I haven't posted in a while, especially since my last post wasn't exactly uplifting.  Life just gets busy, and that's all there is to it.

What have we been busy doing?  Well, all the normal Emma stuff that takes up so much time.  She is sleeping much better with the BiPAP mask this week than last week, with the exception of Sunday night.  Last Sunday night was the worst night she's ever had with the mask.  THE WORST.  Since then, it has been much better.  We've been putting it on her around 10 or 11 at night, and she sleeps with it on until about 6 or 7 in the morning with little fuss in the meantime.  (Side note: sleeping in our bed, mind you.  She'll go back to the crib eventually, but the mask is what's important right now.)  And she's suddenly a tummy sleeper again.  After spending the first 3 months on her stomach, I guess she needed a break from the trauma that used to be tummy time.  The silver lining to Emma being in the NICU for all that time was that we got to sleep all night at home...but the BiPAP mask seems to be payback.

We took Emma to Shriner's this morning for a bladder capacity and pressure test, as well as a kidney and bladder ultrasound at Greenville Memorial.  We won't know the results until we go back to Shriner's next week to meet with all the doctors.

There have been a couple battles taking up the rest of my time.  One is a battle with Medicaid.  Boring.  The more time-consuming battle has really gotten me all riled up.  There's a therapy out there called Vital Stim that adults have been receiving for years.  Electrodes are placed along the jawline and throat, and patients are given food to swallow.  The machine to which the electrodes are connected help retrain throat muscles to swallow.  This is a very common therapy with stroke victims, brain injury victims, and the elderly.  At a pediatric level, the therapy has allowed kids to come off of feeding tubes and has prevented the need for a feeding tube.

It basically requires 3 things: a certified speech therapist, a piece of equipment, and some electrodes.  Our speech therapist is certified - check.  The piece of equipment is at the hospital - check.  Now for the electrodes.  The electrodes only cost $250 for the WHOLE YEAR OF THERAPY, twice a week - no check.

Emma needs this therapy because we've reached a point where she needs to start eating food other than her bottle.  She's going to have to start eating real food, and this scares all of us to death.  She can choke on something easily, not to mention the fact that she has a really sensitive gag reflex and doesn't do new textures well.

Clearly, this is the therapy that Emma needs, and we've been asking for it since January/February.  But we've come to a screeching halt.  The hospital won't include the electrodes in their budget, and Emma's speech therapist has been told not to solicit donations for the electrodes.  Oh, and parents aren't allowed to purchase the electrodes themselves.  UUGGGHHH!  So Mama Bear has stepped in to get this therapy approved for all kids, not just Emma.  As I watch my daughter each and every day struggle to breathe and swallow, my frustration with the hospital politics and bureaucracy grows and grows.  I've been told that doctors are the ones with all the power, so I'm trying to go that route, along with a few other tricks I might have up my sleeve.  Apparently, $6,500 is enough to get the program up and running for a ton of kids.  If this was just about Emma, I'd throw in the towel and send her to Anderson for the therapy.  But there is an absurd number of kids in Greenville who desperately NEED this therapy, and they may not have parents who know how to be advocates.  So I'll keep you posted on our progress.  If I have to raise the money myself, I will, but hopefully we can get this going sooner than that.

I'm not quite sure yet what individual is my end target, that ONE PERSON who needs to meet Emma, watch her choke, and then flash her beautiful grin with those big blue eyes and long eyelashes.  But if any of you out there know anyone at the hospital who can be influential, ESPECIALLY A DOCTOR, please write a letter!  Make a phone call!  This is therapy that ALL kids can receive, whether they are inpatient or outpatient, NICU (well, once they're older), PICU - ALL KIDS!  If you want a little more information, send me a private message under "Leave Emma A Message!" on the left.

I know I haven't posted pictures in a while, and I DO have some to post...soon, I promise.