Hey all! Wondering where I've been? How is Jordan doing? How did the Heart Walk go? Well I'll tell you :-D
I had to step away for awhile from the CHD Community for awhile. After Jordan came home with her PICC line, we went into survivor mode. Living in 6 hour increments can really take a toll on a person. I have a new appreciation to those of you who have or had to deal with feeding schedules, med schedules, and just overall giving that higher level of care that sometimes our kids need. I felt for awhile that we had a newborn again! Because of my day schedule between preschool and daycare, we couldn't move our 2AM med without causing issues with the others. Luckily, Jeremy and I had switched every other night so that at least one of us was functioning! I would still wake up but I didn't have to get up!
Jordan's meds ended the 1st week of March and the line came out after the culture came back negitive for infection a week later. SHE WAS SO HAPPY! We had let her go back to preschool but asked that she would stay inside for recess. To be able to go out and play with her friends...it was priceless to see her smile that 1st day!
Once I knew Jordan was FINALLY on the mend, I ended up closing down. Part of it was shear exhaustion from not sleeping a full night in months, but a large part of it was from emotional exhaustion. Looking back now, I can see that I was almost numb when Jordan went BACK to the hospital and had to stay because of her infection. To find out that they were treating her for one of the WORST staph infections you can get (MRSA), (THANK GOD those test came back negitive), then finding out we were going to have IV meds for the next 6 weeks was emotionally consuming for me. My worst fears were coming true. Jordan had gotten an infection and it was in her blood stream and possibly in her bones! But you know what? Like everything else that is laid before her, Jordan kicked it and made it look easy. Once I realized that, I started to make my way back to me being me again! It's taking some time but I'm getting there!!
I looked at what I was grateful for-Heathly, happy kids, a wonderful hubby, and awesome support around me. Jeremy has been my rock throughout this whole process. Even though he was afraid too, he was always encouraging! He would go home at night and be with our boys so that I could stay with Jordan. While I wanted to be home with them, I couldn't leave her for very long. What would I have done without him, I don't know!! He really doesn't get enough credit :-D
Now we are ALL a happy, HEALTHY family. It has made us each stronger and more grateful for each day. Riley and Drew now understand more of Jordan's heart issues and have seen her at her most fragile state. They are now her fiercest protectors. Riley wanted to do Jump Rope For Heart at school this year! He went around to neighbors to ask for donations which went to the American Heart Association. He also got a good number of kids in his class to jump in honor of Jordan. What a sweetheart!
Last weekend was the Johnson County Start! Heart Walk. We were honored to have Jordan be the Heart Child this year! At first I was a bit reluctant, but after talking to a few people I realized that it would be good to get out and make people realize there is a range of different heart defects. She has full function of her ticker. She's not on medication. Even though we have had weight issues, she hasn't had them bad enough to get a feeding tube of any sorts. I hope by doing this, new parents realize that having your child diagnosed with a CHD does not instantly mean a heart transplant or worse.
Raising money this year...I am in awe! Because of friends, family, and even people I don't know, we were able to raise $1,074.25 for the American Heart Association. A little over half of that will go to the Legacy of Life Endowment fund! Even though the principle will not get touched, the interest earned on it goes DIRECTLY to fund CHD research!! The more research that is done for our kiddos, the more of a chance they will be able to live LONG and HEALTHY lives! I pray that 5% increase of adults who live with CHDs will continue to increase!! I was happy to raise money for the general fund also. We family members who have either died from a heart attack or are dealing with heart issues now as adults. The money raised for education and research will continue to help them also!!
Thank you to everyone who donated in one way or another. From those who donated online, sent me a check or even bought a Heart! Thank you to Collins Community Credit Union, Rage Grafix and Anderson Chiropractic for selling the Hearts for us. My goal next year will be to add to these businesses and to be able to raise even more! It's amazing how much can be raised when you just give $1 or 2. Thank you also to those who may have already donated to AHA this year!!
While this year's walk was again done in the rain, I thought about the kids who have had surgeries in the past year, those who have earned their Angel Wings, and those who have just begun their battles. It could have rained, hailed, snowed and sleeted and it still doesn't compare to what these kids walk through daily. I was happy to be wet and walking. It was SO worth it!!
Jorgie Porgie's Posse-
Front Row-Drew, Julie Kinsinger, Travis Walthart, Me, Riley, Kristy Ward, Kypton Ward, Lauren Melloy and Jenny Melloy
Back Row-Teresa Wenman, Ashley Walthart, Larry Snyder, Jordan, Jeremy, Lyndia Snyder, Becca Booth, Bev Mason, Kelly Kane, Laura Mason, Stephanine Wilson and Avery Wilson
And to the Posse! Jorgie Porgie's Posse raised (unoffically) $2,154!! We had 21 people (adults and kids) walk!
Peds Cardio / Heart Friends Team
(This is only a fraction of who was here thanks to the rain!)
I'm still in awe...