We had our final visit with Dr. Berger last week. Unfortunately the pressures in Seth's heart have not come down one bit! It was a little disappointing to hear. Fortunately Seth still shows no symptoms of Pulmonary Hypertension and his heart function looks good. Ok, back up, I say Seth shows no symptoms but that is because we haven't seen anything different. Seth does not play as hard and doesn't have the strength as a "normal" four year old, but the level that Seth does play at, we never see him tire or get short of breath. Maybe it is the Pulmonary Hypertension that causes him not to have as much strength and energy or maybe it's low muscle tone. Or maybe a combo of both! Anyways, we discussed our next options which are an inhaled medication or IV medications. We didn't go much into the IV meds as the doctor really wants to start him on the inhaled one. Unfortunately since we are moving so soon, the doctor wants us to wait until we get to Texas and discuss options with our new cardiologist. We did increase the sildenafil dose up to 4 mLs three times a day. Part of me is like, if these meds aren't working, then why are we still taking them? I know, patience. I am sure we just have to find the right mix. It would be nice to get off the Bosentan so we don't have to do monthly blood draws anymore.
Wednesday, April 10, 2013
Tuesday, April 9, 2013
Here is Kate and Emily ready for performance! They have their hair all poofed and makeup ready! All they need is their costume! The girls did so well in their performances. I went to all three public performances, it was that good! Well, I may be biased.
You probably need to click on the photo to read the girls' bios. Emily's is hilarious!