May 2010 Cardiac Clinic

These pictures are from AnnaSophia's latest Cardiac Clinic visit to Denver Children's Hospital's Heart Institute. Our day usually starts at 5am as we make our trek to Denver. We arrive at 7:15 am and start out in the lab having her cyclosporine levels checked. She amazes me, because she never cries. It's just part of her life. We then journey up to the third floor, where she get checked in. After her temperature, blood pressure, height and weight are taken, we get comfortable in an echo room. We have gotten smart after our countless echocardiograms and bring a princess movie for her to watch. She was so good and let the sonographer get really good pictures this time. After she is "de-slimed", she has her EKG. She actually doesn't mind and seems to be fascinated with all of the wires attached to her. By the time she saw her transplant coordinator, she was exhausted and not wanting to cooperate a whole lot.

The good news is that everything with her heart looks great. As long as she continues to do well, we go to clinic every 4 months and have her levels checked every two months. I can't tell you how blessed we are to have such great care for her so close by. They are truly our "angels" watching out for our AnnaSophia.

Please Pray

I write this with an urgent need for prayer. One of our transplant friends, Garrett, is at Denver Children's Hospital in the CICU. Garrett is 10 years old, and he received his second heart transplant two years ago, shortly after AnnaSophia had her first open heart surgery. He is an amazing and brave little boy. He has been in Denver for about a month and a half being treated for rejection. We thought he was doing much better, but the results of his biopsy on Friday showed that the rejection is worse than ever. Our hearts our breaking for him and his family. We know all too well how scary it can be to have challenges like this with your precious child. You can follow Garrett's story at www.garrettsjourney.blogspot.com. Please pray for him and his family during this scary time.

American Heart Association's June 12th Heart Walk

This year AnnaSophia is featured on the American Heart Association's website for the June 12th Heart Walk. What an honor to see our little heart warrior featured as an inspiration to help raise money to find a cure for Acquired and Congenital Heart Disease! If you feel inspired, please help support our team either financially or by walking with us. Let's raise awareness and find a cure!

Reassurance

Sometimes reassurance is worth more than any treasure in the world. Parenthood is challenging enough, but when you have a child with a Congenital Heart Defect, it can be especially challenging. Part of the challenge is trying to live as normal a life as possible, while also being vigilant in monitoring your child and protecting him or her from illness. Because AnnaSophia has a heart transplant and is immune suppressed to keep her from rejecting her heart, I work really hard to keep her well. She is two years old and knows how to use the hand sanitizer while we are out. Ok, I'm going to reveal just how "crazy" I am: I have even been known to wipe her shoes down with Lysol Wipes just so she could play with them in the house. If you really pay attention to where you walk, you just might do that too!

I have been watching AnnaSophia's trends with eating for the last two months, and I was concerned. She doesn't each much. Is it her just being a toddler, or is it her heart? She has chronic loose stools--not a fun issue for either of us. She is really irritable, having temper tantrums daily. I know, I know...she's two. She is two in all her glory, but subtle signs like this can also mean trouble for her too.

Yesterday, we went to Denver Children's Hospital to check her cyclosporine levels, CBC, and CMV. She had a full work up in Cardiac Clinic: an echo, EKG, and exam by her transplant coordinator. The great news is that her heart is great! I cannot even express what a huge sigh of relief that was for me! I'm also not imagining things, though. She came into clinic with a low fever and she was very irritable. She also had not eaten much. After her exam, Jilayne told me that her problem was teething. Not just normal teething, but EXTREME TEETHING. Her immunosuppressant, Cyclosporine, has caused a thickening and toughening of her gums. It makes it very difficult for her to cut teeth. What might normally take a month for a tooth to break through, might take three months in her case. My poor little one! You would think that after all that she has been through, teething would be a piece of cake, but not so.

Honestly, I'm amazed by her every day. She is one tough cookie! So we continue to plug along, and I'm thankful for every moment with her. She is constantly an inspiration to me, and I feel blessed that God has chosen me to be her parent.

NationalMLH.wmv

This is a video created by Mended Little Hearts, a national organization that supports families whose children have been diagnosed with Congenital Heart Disease. There are chapters in cities all across the United States, and we have a local MLH group here in Colorado Springs. Check us out at www.thebeatgoesonmlh.blogspot.com. Spread awareness and help save lives!