We finally had a Cardiology appointment today. Because Madison's biopsy counted as 'seeing the doctor', we have not been to an actual clinic visit for 6 weeks. Ahhh! It has felt SO weird! But.. we went today and now my life seems back to normal. :) Madison's appointment went well.
Good News: This afternoon I received a phone call from our Transplant Coordinator informing me that...For the first time EVER, Madison's Prograf level was perfect! Timeout: Remember how Madison switched from the generic form of Prograf (Tacrolimus) to the real stuff? That did help and the switch was needed. But her levels are always a little low. Therefore, with each blood draw, we have had to continually increase her Prograf. BUT NOT TODAY!! This also means that Madison does not need any blood draws until our next appointment in 3 weeks. Madison has had her blood taken every week since November 30. That is a lot of pokes for my little girl! And now she gets to go 3 weeks without any pokes! HOO-RAH!
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An Honorable Night:
A couple months ago, I received a phone call from the American Heart Association. They were wondering if I would be willing to speak at the American Heart Association Heart Ball. The event was scheduled for Saturday, May 15. As I said yes, the butterflies of being nervous began to arrive, along with heightened anticipation, combined with adrenalin. Needless to say, I was very nervous.
The sole purpose of the event was to raise money for the American Heart Association. And with my permission, they incorporated Madison in every part of the evening in hopes that her heart story would entice people to donate. They showed a video and then I spoke for about 10 minutes. I simply told Madison's heart story and then introduced her (over the podium) to 350 people.
Little did I know that it would be such an honorable night. After I spoke, all 350 people wanted to see her. Because they knew she was a transplant baby, they were polite in keeping their distance and not touching her too much. As people walked past us, I could hear them say, "there's the miracle baby." I loved that evening. And it was fun.
One of the attendees to the event was Elder Russell M. Nelson. He was honored that night for his development of the Heart / Lung Machine ( or Bypass Machine). A patient is put on the Heart / Lung Machine when undergoing extensive surgery (i.e. open heart surgery, transplants). We were able to speak with him for a few minutes. Speaking with him was the highlight of the night for me. Spiritually and intellectually, he completely understood everything that Madison has been through. It was such a privilege to speak with him.
Below are some pictures from the event. We were so involved with everyone that evening that we forgot to take pictures. And I was nervous.. a camera was the last thing on my mind. :) I'll post more pictures as I snag them from relatives who were also at the event.
Enjoy.
