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.

GRATITUDE IN MY HEART!

I have felt once again very overwhelmed by how blessed we have been. We went up to cardiology today and all still looks well. We even get to move appointments to every other week now. Every time I go to the hospital I round the corner, see the big parking garage where my car would sit for a week at a time sometimes. I see the flag blowing and then I see Kaidence's PICU room window. I get so emotional every time and I can't tell you how many times I have made that drive. I remember once when Kaidence was in the hospital (just before the Berlin Heart) my mom took me away and tried to find me some hand stitching or something to do to keep me busy while time passed. I remember how torn I felt as I drove along the freeway and I looked east and could see the hospital sitting up on the hill and knowing that I could see my baby girls room but yet she was so far away from me.

We visited some of our PICU doctors and nurses today. I only expected to see a few nurses but before I knew it we had many others that had gathered around as well to see our little Kaidence. We miss them so much and I hope that they truly understand all that they did for our family and how grateful we are to them. It feels like home everytime we stop by to see them and never feels weird.

We have been so lucky to have so many wonderful friends and family that have supported us in so many ways. Although I could not get "Thank You's" to everyone it did not mean that your kindness did not touch our hearts. I was just so overwhelmed by Kaidence and all of the kindness that we had been shown. And no matter how hard I tried I just could not keep up and the Thank You's. So Thank You to all of you. Our family, friends, ward family, doctors, nurses, our pediatrician's office and all of you that we have never met. We are forever indebted to your kindness. Thank You to all of you that made sure our family had a wonderful Christmas to remember, it was that and so much more. Often as someone would drop something by I would close the door and just sit and sob. Thank You for all of the sacrifice that you made for our family. I have cried so much these last 10 months as people would send cards, prayers said, money would appear on our doorstep or in the mail. Christmas gifts appeared on our porch (ok, I am even crying as I write this). Rides were given to my children, meals brought in, laundry done, our house was roofed, walks were shoveled, kids babysat (sometimes overnight). Kaidence's Pediatrician and staff would come to the home to give shots and do check ups once we brought her home so that we did not have to take her out. We honestly could not have done it without all of you. Most importantly, Thank You for all of the prayers. We love you all and feel so overwhelmed and blessed to have learned the lessons that we have and to have had so many people loving and supporting our family. Please know that we are SO VERY Thankful for all you have done for us. WE LOVE YOU!!!

HAPPY MOTHERS DAY!

HAPPY MOTHERS DAY!!! Today was the best Mother's Day ever. For the first time in 10 months we all went to church together, even Kaidence. It felt wonderful to all be at church together. I have dreamed about this day for a long time and thought about every Sunday as I attended Sacrament Meeting up at the hospital, although at times it felt like that day may never come. It is all about the simple things. Kaidence seemed very excited and she was very interested in the big hanging lights in the chapel. The boy also sang for Mothers Day and they were so good and cute. No picking their noses or anything of the sort. It was wonderful to bring Kaidence to see all of the wonderful people that had fasted and prayed for her SO MANY times. We are forever grateful for their faith and love. I know they will never understand what they have done for us. They were a major part of the many miracles that have played out in Kaidence's life. My cardiologist asked how we did it and I told her it was all of the fasting and prayers. We are so grateful to have the gospel in our lives. We are grateful for all of the prayers that were given in Kaidence's behalf, no matter what religion or background. We thank you all.

We have once again had a busy, but good week. The last week was a little crazy with misc. school stuff. I went to school and celebrated McCaden's Half Birthday since his is in the summer. We made him a poster and a little portfolio. Camden decided to tattoo himself with brown marker as well as the basement wall. So NO we do not beat our children. It is just that the "washable" marker isn't all that washable and it makes his arm look worse now. We went dress hunting for the American Heart Association Black Tie Gala Dinner. Worked in the yard, got Kaidence's immunizations current and went to cardiology of course. Her appointment went well and her white count is still doing great. Kaidence has really blossomed the past 2 weeks. She has grown so much and seems so happy. She loves to play with her brothers. She also got her first haircut (Thanks Tina). It looks adorable. Kaidence's hair is VERY thick in the back and so Tina did a little razor cutting to thin it out a little so we could flip it out and style it. She also seems to be taking her milk a little better (somedays). Also, she signed "milk" the other day. Can you believe it? It worked and I have to give a Big Hug Thank You to Rachel Coleman and Family. They are the ones that do the "Signing Time" DVD's and television show. They saw that we were in need of some DVD's to teach Kaidence and so they had the first series delivered to our home. Thank You so much for your kindness. My Kaidence loves to watch them with her brother Camden. Camden has really picked up on his signs and this helps reinforce signs with Kaidence. He picks the "Signing Time" movies over anything else right now. Thank You for thinking of our family. We have been surrounded by so many kind and gracious people. We are grateful for every baby step in the right direction and for everyday that we can feel "normal," whatever that means.
I hope you all have a wonderful week and thank you again for all you have done to help bring us through our trials.

WE ARE FREE AT LAST!!!!!

So today was Cardiology and actually it was a good appointment. Kaidence is doing well. Her white count is up again, this time on her own and so we increased her cellcept dose. They also took her off the Nystatin (yeah!)

AND..............they told us that we could start taking Kaidence out. We did not expect to hear this for at least another 1 1/2 months. They feel that Kaidence is doing well. We are so excited and terrified as well. We still have to be smart about it and stay away from a lot of little kids and anybody that is sick. So if your are sick please let us know so that we can stay away until you are better. That would help us out alot and help us feel more comfortable as we do start taking Kaidence out and about. We can't sit and pass Kaidence around which will be hard because a lot of people will want to hold her, but I guess they'll just have to love her from a distance. I hope they will be understanding. To celebrate our exciting news we went out to eat as a family. The last time we went out to eat as a family (not counting the hospitals "Rainbow Cafe") was July in McCall. It was so much fun. My parents, Shalyse and her family all went to Chili's. Mike's parents were in Provo visiting his grandma that is having some health problems or else I am sure they would have come with. It was scary taking her out into the world knowing that she is immunosuppressed but it felt so nice to do something normal. I bought a portable fold up high chair to keep in the car so we don't have to use the public restraunt high chairs and let's just say that I Lysoled the heck out of the table at Chili's tonight. We are so grateful that we are at this point. We know that we always have the chance of rejection and starting house arrest all over again, but right now we are embracing the moment. We have been on house/hospital arrest since last July. We will SLOWLY introduce her back into the world of germs and hopefully she won't get sick. It scares me because there are some immunizations that Kaidence can't get because it is a live virus, like the chicken pox vaccine and some others. We will hope and pray that Kaidence can live a normal, happy life and be able to do it without getting sick all of the time. Colds to you and I may not mean anything and so we would still go places and continue on with life but if kaidence caught that same cold, it may cause many problems for her. Kaidence loved her outing and she also LOVED her lemon(notice pictures to the right). She sat and chewed on two lemons all night. I took one of them away and Kaidence defiantly did not approve. Earlier today she also ate a little baby food (way to go!). We are so grateful for this day.

I have been thinking the last week about how so many of you have blessed our lives through your kindness. Thank You for your love and prayers. You helped us make our last year easier and many of you made our Christmas the most memorable ever.

Sorry this post is so unorganized and jumps around but I have a terrible headache and can't think but was too excited. I had to share our big news.

BUSY WEEK!!!

Sorry that I have not update lately, it was a busy week. KSL came to our home to film Kaidence's story for the American Heart Association and for Primary Childrens Medical Miracle Network telethon. Needless to say I had some house work to do. I am also trying to organize all of our files for Kaidence and everything else in the house. McCaden went on is field trip to the farm at Thanksgiving Point and he rode on a school bus for the first time. I was sad that I wasn't able to experience that with him for the first time. So I made him a special lunch and sent my love that way. I am hopefully going with him in the 20th to the Zoo. Camden went with his Nanna and Pappa to ride the Trax Train. Any of you that know Camden knows that he LOVES ANYTHING train related. I packed him some goodies and sent him on his way. He said the train had two conductors and he also got to use the new train potty. ALSO, we found Kaidence's blessing pictures. I was so afraid that we had erased them somehow.

Happy Birthday Little Ian. We miss you!!!!