1/16/13

Another Cardio Visit...

We had another fun filled day of Seattle Children's today!  A 12:30 echo that only took 15 minutes and then a 2:00 cardio appointment.  After the echo we bolted for the door and made our way down the road to a Burger King drive thru for a little in the car picnic :)  Carla and I haven't been out of the house in the last I don't know how long, other than to go to the hospital, so this was a nice treat.  And, a good way to kill an hour and fifteen minutes.  We made it back to the hospital a tiny bit after 2:00 and finally saw our cardiologist around 3:25.  The verdict is this: Carla's echo looked great :) Her BNP was down from 365 to 316 :) we are going down on her Cellcept (one of the rejection meds) because her level was on the higher side :) and we don't have to see cardiology or do a blood draw until Wednesday the 30th!!!  Woo hoo! We do start physical therapy and occupational therapy next Wednesday (and for the next 6 weeks) but I think those appointments will be fun for Carla. Unfortunately, next Wednesday the appointments are at 8:00 a.m. and 3:00 p.m.  But, luckily, we live super close to the hospital, so having the appointments split won't be a big deal.  Carla will be doing her tutoring probably Monday or Tuesdays and Fridays and we are starting her in piano lessons on Friday!  Yes, we will be keeping busy, but I think it will be good for us.  We will continue to be super careful (have her wear a mask to all appointments, tutoring and piano as well as sanitizing) but we feel it will be really good for Carla to both have some physical activity as well as mental activity!  She is down to 4 mgs of Predisone as of today and in 4 weeks, she will be off the steroids!!!  Yay!!!

With every passing day Carla gets stronger and stronger.  We are feeling super blessed and just so thankful for this new chance at life that Carla has been given. Life with her fancy new four chambered heart is good :)  She is so pink and very aware of how much better she feels with her new heart - and she is extremely happy to not be puking up casts anymore.  The clubbing on her fingers and toes is starting to disappear and it is remarkable how many small changes her body is making.  The way her veins don't stand out as much, and her coloration is just so different.   I look at her with awe and wonder at times... and, knowing that the physical changes are going on inside as well makes me so extremely happy.

Love, Jen

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