It's funny how I spend money on cool toys and Isaac would rather play with soup ladles and whisks. And tubes too, ooooo tubes!! Like a typical boy, he likes to pound things and see how much noise it can make. Needless to say he's very entertained while I cook dinner. I Love that he enjoys the simple things in life!
Isaac is doing fantastic, on room air most of the day and very alert during his therapy sessions. His lab work has been really good too in the Potassium department. Yesterday I got a phone call from the Pulmonologist that we can discontinue 2 medications that he's chronically been taking for 4 years! I felt like I was walking on air when I hung up the phone. Finally a move forward! Now before I get all excited and think this means he will never take these meds again, we will need some prayer and positive thoughts. 4 years ago he blew up like a balloon and had chronic edema in all extremities. The cause of the edema was unknown as they did a bunch of tests and couldn't find a true explanation. Since then this has improved, but his Ped never wanted to "rock the boat" by weaning him off of it. Because he's been on a long term dose of diuretics, he was also put on a Potassium supplement. Without it his levels would've been critically low. So as of yesterday he no longer has to take the diuretic or Potassium. There is still a chance that he could swell up, but I'm hoping that doesn't happen.
Thanks for the prayers and for keeping up with our blog!