BEADS OF COURAGE

The Beads of Courage program is something special. In fact, it's a gift. After Jaelyn was life flighted to Phoenix Children's Hospital, we were checked into and set up with a billion and one things to know, to do, and to have. As things slowed down a bit and we were able to process everything, I noticed a booklet and a bag with a few beads inside. It was the Beads of Courage program. The hospital quietly set us up with this wonderful program to help us remember Jaelyn's experience. This booklet had already been marked up and dated with which beads Jaelyn had already earned. With these beads we're able to tell a story of what she's had to endure and how she fought through her heart condition with the odds against her. They'll be a teaching tool for us to show Jaelyn as she grows older and starts to understand it all. And I'm sure eventually, she'll take these to school one day for "Show and Tell" and explain them to her friends and classmates. It's a beautiful idea, these beads. They'll be a physical reminder to her as she goes throughout other struggles and trials that she'll be okay, because once before she's conquered this.

3 Month Photos & Update

JAELYN AT 3 MONTHS

How darling is she? I cannot get enough of her!!! We had her 3 month photos done by Armi Gorrell and she did a wonderful job. Here's a few of my favorites:

 

UPDATE:

 Last week Jaelyn had her cardiology appointment where we did a chest x-ray and found some fluid in her lungs. She also had blood labs drawn and showed high potassium levels. So she was admitted to Utah Valley Hospital for that and a need for inserting a feeding tube. We were sent home a day later and sent up to Primary Children's Medical Center a couple days after that. She needed to be monitored since we had put her on Lasix for the fluid in her lungs, and Enalipril for her heart. We found in an echocardiogram that the left side of her heart (the good side) wasn't functioning as well as they would like it to. Apparently that's a typical thing to happen in situations like hers, since that side tries to compensate for the other side. We were able to get discharged on Mother's Day which was a wonderful gift! So then at this week's cardiology appointment we decided that we'll place a heart cath within the next few weeks to find out more about the heart and to see how ready she is for surgery. As of now, Dr. Hoffman is thinking her next surgery will probably happen mid to late July. Hopefully we'll get answers soon. The unknown is killing me.