Friday, December 19, 2008


So finally, after almost exactly a year later we have answers as to Kaidence's Cardiomyopathy. Kaidence became ill July 2007 and we have not had any definite to what happened or caused it. I have asked the cardiologist many times in hopes of finding out what pathology found from her old heart after she was transplanted with her new one. It was sent out and we had hoped to find some answers. Cardiology would then in turn call her genetics doctor and was told that they have not heard any results. So Kaidence's WONDERFUL pediatrician decided to make a phone call to pathology. Apparently the results have been available since December of last year. They had the results 3 days after her transplant.


Kaidence's old heart showed NO evidence of a "Glycogen Storage Disease" and NO obvious eveidence that her Cardiomyopathy is genetically linked.

I am so excited about the results and feel so blessed once again to finally have answers. For the last year and a half I have stressed and worried about my boys. Would they get the Cardiomyopathy? Is it genetic? Should we have more kids? I just had echo's done because we still had no answers. I decided I would rather be out the money for the boys echos and have the peace of mind that I needed. How grateful I am that we were once again blessed. I finally feel that this offers some closer for us.

If you remember back to the days after the "Berlin Heart" you will remember that they thought Kaidence had a "Glycogen Storage Disease" because they found Glycogen in a piece of her heart. They told me that they could not waste a heart on Kaidence because if she did have this disease, she would wastes away and eventually die. It would be more ethical to give the heart to a child that would have a chance at a healthy, normal life. They then took her off the transplant list once again (I was devastated). They cut her thigh and took a piece of muscle from her leg and ran tests on it. The tests took days and I could not sleep. What was I going to do? How was I going to pull the plug on my healthy baby? The only thing keeping her alive at this point was a machine that was plugged into the wall. The test from her thigh came back showing that she did have glycogen in her muscle but not severely enough to keep her from getting a new heart. That was one of the best days ever. I remember my mom took me to "Hires" and I had a Coke, Big H and Onion rings. I hadn't eaten in days and finally felt like a weight had been lifted from me. I once again had hope. We now think that the Glycogen had presented itself in her heart and other muscles in her body because she was so sick. Her body was shutting down and unable to metabolize what it needed to, so it was just building up.

To see these results now and to think that Kaidence was taken off the list, possibly forever for a disease that she never had, makes my stomach sick. Once again, I have no doubt that the Lord does have his hands in everything.

Sorry, I know that how Kaidence got sick has made many very nervous and paranoid for their own families and I can't blame them. But you have to remeber that her illness was a rare thing. Life still has to go on. All we can do is be respectful to others when our own kids are sick and keep them away and hope that others will do the same.

So Kaidence did get the Cardiomyopathy from whatever stomach bug our family had. I cannot sit and play the "what if game" as to why she got sick. I cannot place the blame on anyone or anything. It won't make things better and I have no doubt in my mind that this is part of Kaidence's earthly mission. Too many lives have been touched for the good, including our own.

Monday, December 15, 2008


I am proud to announce that........Kaidence has gained weight. On December 4th she weighed in at 20lbs 8oz. On Friday December 12th she weighed in at 23lbs 14oz. That's over 3 pounds in 9 days. Yeah!!!!!!!!! I started supplementing her feeds with Duocal. It is a healthy way to increase calories without using all of the cream cheeses and other stuff that I really don't want in Kaidence's arteries. The whole reason for our Cardiology visit on Friday was to get echo's for the boys. Because we don't have any reason for Kaidence's Cardiomyopathy other than the stomach virus we got, the doctors wanted to be sure that all looked well with the boys hearts. Let me tell you, I was so afraid that something was going to be wrong with one of the boys. I feel so blessed to say that all looks well with their hearts and we will recheck them both in 5 years. What a great Christmas gift to me.

Also before I forget the "Standard Examiner" came out today for a interview and will be doing a follow up article in the paper tomorrow morning if any are interested.

We also attended our ward Christmas party with our WHOLE family. The boys did the nativity and "C" was the only 'wiseman' that was laying on his stomach half the time. "M" was very reverent and made me proud. We also had a special visitor. Let me just say that Kaidence was NOT a fan of Santa (see picture above). I have never seen my girl so upset. I have also never heard her cry so loud (ok, still not very loud compared to most kids but loud for her). Seriously though, she handles getting IV'S placed better than she handled just seeing Santa. She didn't even make it to his lap, she just started screaming the moment I started walking toward him. It was after all her first "Santa" experience. The boys loved seeing Santa. They must think Santa is pretty amazing because their lists keep changing everyday.

Also, to whomever it was that left the Baby Jesus and the beautiful cradle on our door step we thank you. What a precious gift. The kids love looking at it and all had to take turns holding the baby Jesus before going to bed. The music on the CD that you sent with it was so fitting. Thank You for thinking of us. We have it carefully placed in our home as a reminder for the Season. It has brought a beautiful spirit into our home. Thank You. What an amazing and perfect gift. We will treasure it always.