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!!!!

A LITTLE UNDER THE WEATHER!

Kaidence has been very tired lately and I didn't think she looked very good skin color wise, so on Monday I called the cardiology transplant team. We were a little worried because she suddenly became tired, wouldn't eat, started coughing .... They told me to take her into the pediatrician. I did and whenever she would start coughing she would turn blue and her O2 sats would drop. For those of you that have the O2 at home. When you are done don't get rid of everything. Keep around some tubing or something to (as they say in the PICU) "ward off the evil spirits." Two days before Kaidence needed the O2 again I gave all of her left over supplies to a neighbor. So don't jinx yourselves. We had home health bring back out our big oxygen concentrator and sats monitor. I am glad that we had the oxygen because her alarm was set to go off at 83 and her sats were 57 (NOT good). I woke her up and they bumped up but then we put O2 on her for the rest of the night. We have and echo scheduled for tomorrow and some interviews and filming up at the hospital for the little documentary thing that the American Heart Association is doing on Kaidence next month. Other than that things are about the same. We are slowly working on Kaidence's feeds but seem to have taken a few steps back ever since her last hospital stay 2 weeks ago. Today I awoke to her coughing and then in turn puking. It seems that her nose is runny again and that her cough is back (she did not have it yesterday) but hopefully her energy level will start increasing. Hope everyone is enjoying the crazy weather of spring and that we can all get our houses cleaned today while the weather is blah so that we can go our and play when the weather is AHHHHHHHH! Have a great day and thank you for all of your prayers. They have brought peace into my heart.

MOVING ON!

Well, I have been feeling better about things over the past few days and Mike is coming home today from his business trip so that is great. So thank you for your prayers, but please keep them coming. Kaidence has been doing great. She is trying to move around more and I think that she is getting frustrated with not being able to get around as she would like. We are working on that and therapy is coming today. She has started getting "stranger danger" and does not like people to wear hats around her at all. This all started in the PICU from all of her surgeries and the scrub downs they would do of Kaidence's VAD cannula sites. Sometimes she was still awake for it and they always wore the blue surgical hats for it. Kaidence does not want anyone to feed her. She thinks she will do it herself. Therefore, I don't think she eats much at all, but Kirby our doggy sure eats well thanks to Kaidence. She is still tube feed a lot but that is slowly getting better. Yesterday was cardiology and to tell you the truth I did NOT want to go. Sometimes you just don't want to be reminded of everything when you are trying to move on and be normal. Anyhow, I did get a little down after her appointment, but feel better today. Her echo looked the same, not better and not any worse. Her ANC is at the moment in "normal" range and so they are slowly starting her back on one of her immunosuppresives. We will watch closely to see if it causes her ANC to fall again. The doctors are meeting today to try to figure out what happened with the biopsy and how. So many people live with this regurgitation problem but Kaidence's happens to be worse and has a high possibility of continue getting worse as the years go on and more heart cath's take place. Intervention will all depend on Kaidence's body response to what is happening. She may handle it just fine or she may have issues that lead to surgery or needing a new heart sooner than we wanted. I can't make things go away or get better and I know that things could always be worse. We will just pray that Kaidence's is happy and as healthy as the Lord wants her to be. I don't have time to waste on worries that I can't fix. I need to enjoy and embrace every moment that I do have with my children. My life will be happy because I am choosing to make it happy.

KAIDENCE'S BROKEN HEART = MOMMY'S BROKEN HEART!

This is a picture of Kaidence and her daddy after her procedure. She is still trying to come out of her sedation. Well, I am still feeling pretty down today. I must say that many of our family and friends maybe feel the frustration. I know our parents are struggling with it. Wow, we have worked so hard to keep Kaidence's heart healthy so that it will last a long time. Maybe I was also a little too proud of how perfect her new heart was for her and how flawlessly it has worked for Kaidence. I keep thinking that maybe this would not have happened if I had cancelled her appointment because of her cough. Maybe that was a sign to not do it. I don't know. I know that Kaidence's things in the past have all been part of the Lords plan for Kaidence and that was actually easier to accept than this. I guess I feel that this was just a mistake and that I walked into the hospital with Kaidence in better condition than when we left. Last time Kaidence left fixed and this time we can't fix her. Mommy's want to fix things. Ok, maybe part of me is a little selfish because I hate having one more thing to worry about with Kaidence. It seems that lately we have had a lot of "extra worries" like the ANC, possible cancer.......However, I still know that things could be so much worse and I keep that always in mind. I am praying that I can find some peace in this and that I won't be so mad. I don't like feeling this way. It is icky. I don't like having this anger. WE have come so far without these feeling and I know that it is Satan's way of getting to Mike and I. We won't let him. This little bump can't take precedence over all of our other miracles. That's is what he wants to have happen.

Anyhow, her echo today looked the same. We will keep watching and see what happens. Her next Heart Cath will be right before Christmas. Kaidence's Cardiologist said that the regurgitation will most likely get worse with the more heart cath's that are done. Unfortunately they will need to be done regardless. Hopefully her heart will hold up well with the others and we never have to open her chest again until she needs a new heart. That will be our goal. Her biopsy showed mild rejection, but the doctor thinks it is because she is only on the one immunosuppression until we can get her white count numbers fixed. We will hopefully start her cellecpt medication back up soon. That will help with the rejection. Please keep our family in your prayers, I need that overwhelming feeling of peace that I used to have in the PICU. I don't want to be angry, sad or depressed. We have to much still in our favor and I don't want to waste my precious time with my children and husband on stuff like this. I know that it is ok to be angry, however there comes a point that you have to take it for what it is and move on. Please pray that I can move on sooner than later. Whether this was in the Lords plan or not I know that he will continue to watch over Kaidence and make sure his plan still takes place. Sorry for the long post but it felt good to talk.