Monday, April 15, 2013

Tummy Troubles

Lucy has been healthy all winter, and that is such a blessing!  More recently, though, we've noticed a hard spot in her stomach, below her bellybutton.  Motility is an issue for kids with SMA, since they are very rarely upright, so we assumed it was a blockage and started working vigorously to move it.

Last Thursday, we took Lucy in to the hospital, since it seemed as though it was slowly growing, and our efforts weren't making much of a difference.  Lucy was comfortable, but it was bothering me.  We really, really loathe going to the hospital, especially during the cold and flu season, which is lingering - much like the nasty, cold weather.  We talked to her ped, took an x-ray, and went home.

Lucy's pediatrician is a wonderful woman, with zero of the egotistical attitude that some doctors have.  She called Dr. Schroth with Lucy's x-ray results, which showed no blockage.  Dr. Schroth recommended extra water and Miralax.

So far, no results.  Praying that this will clear up between now and her appointment in the beginning of May, otherwise they will have to prescribe something stronger.  SMA isn't just about muscles and respiratory issues - there are lots of issues that stem from those problems, and then some additional ones having to do with the nervous system and heart.  SMA is constantly having to stay on top of how your child is feeling, looking, sounding - even if they can't tell you how they feel, you have to know.  And sometimes you have to know what is going on before they even start to feel it.  SMA is all about staying ahead of the game.  Hoping we got out in front of this issue before it becomes a real problem!

On a positive note, it seems as though Lucy's new Cough Assist - a portable, 9lb, battery operated version of the 30lb, plug in version we have - has been approved!  The vague insurance speak is hard to pin down to a certain response, but we're cautiously optimistic that we will be seeing one soon!

Also, we spent today thinking about the Boston Marathon - a group of friends from the Gwendolyn Strong Foundation, including the namesake's father, Bill, ran the marathon today.  My heart dropped when I saw that the marathon had been bombed - then I saw that Bill had updated, saying that he crossed the finish line a minute before the explosion.  Our hearts and prayers are with those who were not so fortunate.