BUSY IS GOOD...RIGHT?

What a busy week!!! McCaden graduated from Kindergarten and is home for the summer. I am actually glad about this because school added more complication with hospital appointments and everything else. And really, a half of a day for Kindergarten, that is crazy. Especially throwing in early out on Friday. I wish they changed it to full day. McCaden has grown so much this year and he did VERY well, even with all of the distraction we had this whole school year. I am so proud of him. It has been fun having Camden home to hang out with. He is a wonderful big brother for his little sis and plays with her a lot. She sure loves him. We had Cardiology this Thursday. We were at the hospital from 8:45am - 7:30pm, it was a very long day. We had a wonderful time meeting Christians family and he looks really good considering how sick he is. He has a very kind family and it was great to talk with someone that could relate to me. We also met some other wonderful families and another little kiddo waiting for a heart transplant. He came into the hospital after we left in January and has been listed for a heart for 3 months. Just a reminder to us about how important organ donation is. It was wonderful seeing kaidence's VAD team and Dr. Kouretus her heart surgeon. We had a very rewarding day. It was nice to know that we can now use our trials and experiences to help bring hope, knowledge and peace to others.
Kaidence's appointment went well. We have changed her Cyclosporin to 2x/day instead of the 3x. That is VERY exciting to me because I am usually the one giving it and she HATES it. Also her echo looked great. Her EF (remember the number that used to be 3% with her old heart?) Well it was 72%. AWESOME!!! Also, the regurgitation issue after the Cath Lab seems to be looking a little better. They are now calling it mild instead of medium. We are very happy about that. Kaidence seems so happy and normal to me. We also had to return the next day to have another Cyclosporin level drawn. Apparently the results came back at 650 (toxic) so we assumed it was an error. So we drew the labs later that night again but as I was leaving the hospital I was chased down and told that they put the blood in the wrong container so they would have to redraw it again.. I guess "the 3rd times the charm". Well, I had already given her her meds so we had to travel back up to the hospital in the morning. After that test (results came back fine) we went and did the "Studio 5" Show on KSL. I also picked up the documentary on Kaidence so if you would like to borrow it let me know I have a couple of copies. Sunday will be the telethon. We hope to help the hospital raise money for those that can't afford medical care. These families are from all walks of life and I know that we received some of that money when they covered Kaidence's prescription cost the day we brought her home from the hospital the first month. They took care of it for us since it was unexpectedly so expensive. It also helps in situations where insurance won't cover something like the berlin heart or whatever it may be. Now thankfully, our insurance did cover it (THANK YOU DMBA) but we were told they the hospital would never let Kaidence die because insurance did not cover it or we could not pay. We hope that this years telethon will be a huge success for all the many kids and families that will depend on it this next year.

YEAHHHHHH CHRISTIAN!!!

Casie just called and reported that Christian DID IT!!!! We have another "Berlin Heart" recipient and he has a new chance at life. We are so excited for their family. What an amazing thing....what a miracle. Please continue prayers, they still have a long road ahead. We are grateful that they have been allowed a new start. I have been so nervous today, is that what it was like for all of you waiting when Kaidence received her Berlin?
I will be going up to PCMC tomorrow for Kaidence's appointment and we are so excited to meet his family. On Friday we will be going to KSL to do the "Studio 5" show from 11:00Am-12:00PM. We will be talking about the Primary Childrens Miracle Network that we will also be apart of on Sunday at 10:30ish on KSL. Hopefully people will be touched by Kaidence's stories and others and help fund treatment for those families that have had their lives devastated by illness an cannot afford it. The hospital is an amazing gift to our community. I never realized it until it became a part of our lives.

Christian is getting a "Berlin Heart"!!!

Today I received a phone call from Primary Children's asking if I would be willing to speak with a family who's son was in a situation like kaidence was in. I of course was more than happy to be of whatever help I could be. I rembered wishing that I could have had someone to talk with when Kaidence was going through her trials. The mom, Casie told me the story of her cute little Christian. I am asking you to please keep Christian and his family in your prayers. Tomorrow morning at 7 am he will be undergoing surgery to receive the "Berlin Heart." He will be the second child at PCMC to receive this device. We were so blessed to have received it with Kaidence and I am praying that tomorrow will be a new begining for Christian and his family. I am so happy that this program is up and running at PCMC and that others can now benefit from it as well. Thank You to all of the staff at the hospital for making it happen not only for Kaidence but for Christian as well. I think the Doctors learned a lot from doing Kaidence's and that it will go that much smoother for Christian. I am excited to meet his family this week. Thank You Casie for calling me, it helps me as well. Christian has a web page and his link is on the side of this page. Christian you and our family will be in our thoughts and prayers. Tomorrow is your day for a miracle!

I AM A SLACKER!!!

OK, so I have been a terrible slacker lately. I think that I will wait and post when I can put some pictures on the blog. I will be much better, I promise. Anyhow, we have been busy. We went to the American Heart Association dinner with our family and a couple of our nurses. WE had a great time and loved the video that they did on Kaidence. KSL did an awesome job and we will be getting copies soon, so let me know if you want one. Hopefully some money was raised. All the money will be going to Pediatric Cardiology Research. We hope that these heart kiddos can have a fair chance at a normal life. I went on a field trip with McCaden to the Hoggle Zoo and came home with an awful migraine, but we still had fun and it was nice doing a normal parent thing for once. Mikes parents took us to "A Day Out With Thomas" on Memorial day and we had a fun time, even with all of the rain. It takes much more than that these days to "rain on our parade". Kaidence is growing like a weed it seems (even though she has lost a pound). I took her off her Prevacid and it made her pretty sick. She vomited for about a week. Easy fix, I just put her back on and waited about 3 days for it to get into her system. She had a fever last week (the day of the field trip, of course). I took her to her pediatrician's office and I just kept saying, "Oh I hope she has an ear infection." Yes, I am sure the other mom's thought that I was nuts, but a fever with no obvious cause for us is scarier. And anyhow... an ear infection is a pretty easy fix, don't ya think? Well, we got lucky and it was an ear infection, I was so happy. What a normal kid thing to have wrong with her. She has also been diagnosed with Asthma, just like her brothers. We are trying to work on her medications for that and get her on a dose that will actually let her sleep. She is so wired on all the inhalers. She is still not walking or crawling and her eating is off and on, but that is ok. Also last Thursday was the first Thursday since July that I did not have to go up to Primary's. It was wonderful. We skipped a week of appointments and hopefully we can continue on the every other week path. Kaidence can say "MaMa" and "Dadda." I know that Kaidence would be into everything if she could just get around on her own.