CupCakes 4 Kaidence and Creative Arts Academy!

PLEASE DON'T FORGET ABOUT CUPCAKES 4 KAIDENCE THIS MONDAY NIGHT!

Come and enjoy a family night with your family and friends. Taste of the Town will be taking place at Cupcakes 4 Kaidence and you can buy food from some of the local restaurants in the area. The proceeds will go to her fund. Now I don't know much of anything going on with this event since it's all been planned by our family and friends and kept a surprise BUT I have heard that some pretty amazing things have been donated to the auction. I have also heard that the kids will have things for them to do as well.....so bring them all! Of course you won't want to miss the beautiful piano music of Award Winning Pianist Paul Cardall. Paul's life has also been blessed by the heart of another. Paul and Kaidence are heart transplant buddies. His music is uplifting and inspirational. His songs are part of our life......after hearing him and Monday, I am sure they will become part of yours as well!

Cupcakes 4 Kaidence

Wight House

95 N. Main Street Bountiful

5-8 pm - Open House

A HUGE Thank You to CREATIVE ARTS DANCE ACADEMY. The night was truly inspirational. The dances and narration complimented each other perfectly. It was amazing to watch these dances and listen as her blog told her story of Hope! As I listened I couldn't help but go back to those times in my mind and heart.

Seeing Kaidence dancing on stage was one of those memories I will always treasure. Dancing seems to be the one thing missing from her life and as crazy as it sounds.....it seems to complete her. It is something that is 100% Kaidence. It's a perfect way for her to express herself, be a normal little girl while at the same time keeping her muscles strong and healthy for her next transplant. I think dance lessons are truly a blessing in her life at this time. How grateful I am that see can experience these things while she waits for a new heart. I am also grateful to the many wonderful friendships that are being built through these opportunities.

Waiting at home is a totally different experience than waiting in the ICU for a heart. We are so grateful to be home. I am hoping that we can continue to do so the whole time. To watch Kaidence's body start to fail after seeing her so healthy and full of life would truly devastate me. I have noticed that I have much more anxiety this time around. I think much of it is knowing that we are not at the top of the list and that her disease would be a sudden death without any warning. I always refer to it as the "ticking time bomb" and that is how it feels. Before we could gauge things a little more with her symptoms. Maybe it's knowing that I have no control over what happens. Whatever it is, I will work through it.

Kaidence had an appt last Monday. Her heart still looks like it's working well. No plan to do another heart cath and look at her Coronary Arteries any time soon. I just pray that they are not getting any worse. As far as her heart rate.....it's been perfect! It seems calm and steady and for that I am grateful. Kaidence has been a little more sleepy lately. Nothing too extreme so I will keep an eye on things and hope it's just a growth spurt. I know that she has grown 1.5 inches in the last month.

Something that I cannot believe I forgot to tell you.......in October Kaidence passed her sleep study. That means no more high flow O2 at night!!!!! We gave back the equipment and I hope my power bill will reflect it too. She seems to have done well without it. The surgery worked. Also, she is now going to speech therapy every week to work on how she uses her voice. Because she did have the paralyzed vocal chords, she found that she could talk louder on the inhale of breath. She is learning how to use her voice the right way and then we will work on the volume aspect. So far, she is making great progress with it.

We are so grateful to the many doors that have been opened to our family. We are being blessed and Heavenly Father is guiding ourselves and others. I am always in awe as to how things just fit together when it's all part of the big plan.

A Little Update and DON"T FORGET..........

I truly am so sorry for going this long without posting. Just consider that no news is a sign that things are still the same. I want to write a post all of its own for our Disney World trip. We went from November 1-11 and had a wonderful time. I am so glad we went the week we did because they said that from that point on it will be crazy! We had a pass for Miss K, this allowed us not to have to wait in the lines for rides. That was such a blessing. We left our little Carden home and took the two older boys and Miss K. I will try posting a video from when we told them we were leaving.....It's so funny! I will post about ALL we did (and we did a LOT) another day. Thank You Nanna and Pappa for taking us on this dream trip......we had a MAGICAL time.

Now that we are home we have been busy getting ready for Christmas. All of Disney World was decorated for Christmas. We even went to the Mickey's Very Merry Christmas party. It was my favorite part but then I came home to Halloween decorations still up. I took care of that pretty quickly though.

Kaidence seems to be doing well. The last day of the trip Kaidence was pretty sick with Influenza. She had a terrible cough, sore throat, headache, body aches, fever, chills and was extremely fatigued. She wouldn't walk at all. We were worried as to how we would get her on the plane and endure a 4 hour flight. She looked terrible. WE picked up some Tamiflu in Florida and Mike gave her a wonderful blessing. Within a couple of hours Kaidence was up running around and you would never have known how sick she was. How grateful I am for the power of the Priesthood in our lives.

K's cardiology check ups have been stable. Last week we had some scary heart rhythm issues but they seem to be resolved. We should have the final report tomorrow for the 24 hour study we did. Kaidence has been in the transplant list for 31 days! I am so grateful that we could spend 11 of those days on vacation and making beautiful memories that we will have forever. Everyday, K asks me when she is getting her new heart. She says she needs one soon before her heart gets too sick and then she will have to go to Heaven. She says that she wants to stay here with us. That little girl is so smart!

We are so grateful for many things. How blessed we are to be waiting for a new heart at home. Hopefully that can continue. We are grateful that Heavenly Father is in charge. He will orchestrate the plan that He has for Kaidence.

Our hearts are once again touched by the many that have reached out to support Cupcakes for Kaidence December 12th and the Creative Arts Academy Benefit Dance Concert coming up this Saturday December 3rd! Both events will be amazing!!! I cannot believe my family, friends and the community that has put all of this together for us. Many have not even met Kaidence. We were so surprised to learn of all these things that have been put together for our Kaidence. When I was told to watch how many windows would open for us I had never imagined anything like this.

OLD BLOG POST FROM THIS WEEK 4 YEARS AGO (11/22/2007) WHILE WAITING FOR HER FIRST HEART!

Happy Thanksgiving! Mike, myself and the boys have had a wonderful Thanksgiving together. We woke up and drove to the hospital to see baby sis on our way to Coalville. It was wonderful to see all of our family and it was fun to spend family time with the boys. They had fun taking the 4 wheelers over to the "farm" to see all of Aunt Karen and Uncle ken's animals and of course the big tractor. Dinner was wonderful as always. Mike and the boys are going up to Ogden to spend the night with all of the cousins. I have stopped by the hospital to spend some time with Kaidence tonight.Kaidence is very swollen tonight and I hope that they can get that under control soon before we are dealing with wet lungs on top of everything else. She has had a fever again today. Her white blood count only dropped from 22.1 to 21.6 and the CRP 7.2 to 7.1. I think I was hoping for a bigger jump like we had the last few days. The other cannula site is starting to look more infected and I think they will clean that out as well tomorrow. I am praying that we can get this infection cleared fast and that nothing else is affected by it. We can't re-list Kaidence until her wounds are healed which could be a couple of weeks. Not sure though because I have not spoken with Doctor Everritt for a couple of days and we are not totally sure what her thoughts are. We had hoped to speak with her before Thanksgiving so we could at least know what the plan was and what we were looking at so that we didn't have to wonder and worry all weekend. The little glimmer of hope that we could possibly all be home together for Christmas is gone so we will find a way to make due. We have so much to be grateful for and I could probably write a whole blog on this topic. However, we are so Thankful for the wonderful support of all of you. We honestly could not due it without all that you do. Thank You for following the blog and caring for us. We are grateful to the many nurses and doctors that take so much time caring for Kaidence. We know that they honestly do the best they can and that they want what is best for our little one. Of course, we are so grateful for the gospel and the unconditional love of our Father In Heaven. I have seen more families here turn back to the gospel after their kids have become ill than one would ever imagine. Trials can teach us so much, but only if we let them.Happy Thanksgiving and we love you all. Savor this time of year and hold your loved ones close. Spend more meaningful time with your family then ever before and get back to basics. In the BIG picture it is all that matters.

Re-listed & CupCakes for Kaidence!!!!

First of all I want to invite you all to join us for Cupcakes 4 Kaidence. Here is a link to the CupCakes 4 Kaidence blog. Or check out her Cupcakes 4 kaidence FB page! This is a fundraiser that is being put on by my amazing sisters, family and friends for Miss K! I cannot believe all they have done and was shocked to learn they were secretly planning this. We hope that you will help spread the word!!!!! Thank You all for loving Miss K!

Miss K's cardio appt monday went well. It was nice to get everyone on the same page. Ya know that Disney World vacation that has been in the works for a couple of years? The one that was getting canceled because K needs a new heart? Well, I was shocked to hear cardiology tell us that we need to go. You feel a little better about things when cardio gives you their blessing on something like that. My boys have NO IDEA! So, please keep it quiet. I am feeling a little overwhelmed knowing that it's back on and I am not ready. I am thinking of leaving baby home so that I can really focus on my 2 older boys. They need it but I am still torn with what to do. My kids will be so excited. The boys never complain about all the times something fun gets canceled because K is sick. They totally deserve this trip!

Wednesday we met with the surgeon. I am sure he thought I looked crazy because I have welts/hives all over my body. Today I went and saw the doc for myself and got on some steroids for it. Seems to be helping. So if you see me and I look a little rough, lips or eyelids are swollen....you'll know why! Back to the surgeon. Heart Transplant the second time around is highly risky. What else do you do though?

Today Kaidence was re-listed. She is officially on the list. She is a status 2. An estimate wait time for her is 3-6 months. It scares me to wonder if her coronary arteries will hold out long enough for her. It's such a hard thing wanting your daughter to live but knowing the only way she will get that chance is when tragedy hits another family. I cannot wish for that. I would never wish that a family would lose their child so that mine could be saved. I wish that no parent ever had to think of such things! My prayers will continue to be what they were the first time. That IF a family was faced with such heartbreak that their hearts would be touched and they would want to share that heart with another child. I feel strongly that Devohn, K's heart donor has his hand in a thing or two. He is fighting hard. With all that her little heart has been through.....it just keeps going!

With the same time of year approaching when K was originally listed, I have found it interesting to go back and read post from 4 years ago. Here it is from 4 years ago today. http://4mykaidence.blogspot.com/2007/10/kaidence-continues-to-poop-sleep-all.html
Please don't forget about CUPCAKES 4 KAIDENCE!!!!! Now please go and help spread the word!

HOME

First things first.....Happy Birthday to my wonderful hubby!!!!! Kaidence sang Happy Birthday to Mike this morning into the phone from the hospital and Mike said it made his birthday because he could actually hear her sing to him!

This is post is going to be sporadic. Today I feel discouraged. I think mainly because I am so tired. I don't think straight when I am tired. Hopefully tomorrow I will feel ready for all of this.

We are home. We still do not have many test results back. I do know that as of now her rejection is not completely gone but in control enough that she can be re-listed. That is a relief! We are awaiting the antibody test and will have those results on Thursday at cardio. Dr. E will present Miss K once again at the transplant meeting with the other transplant docs throughout the valley this Tuesday and Wednesday. This way you get many minds working together. She will be re-listed this Wednesday.....Big sighhhhh!

Kaidence looks and feels great. She is full of energy. Her appetite is incredible. Dr. D commented today that with how bad her coronary arteries are that he doesn't know how her pressures still look great and how her heart is still getting enough blood....but it is. I will take that as another blessing!

Thank you for checking in on us......

What we know at the moment.........

I haven't spoken with Dr. E yet so I don't know too much. I do know that K's CAD is still pretty severe. They tried some different medications while in the heart cath hoping that it would relax the arteries. It didn't really make any difference. During the cath K's heart rate to slow from 130 to 70. This could be because of the medication or restricted blood flow from either the narrow artery or the catheter. They were planning on sending her to the CICU to watch and briefly talked about placing her on a pacemaker. Looks like our DisneyWorld trip is an hold for a long while.

As of late, her heart rate has stabilized. They will send her to the floor tonight to be watched.

UPDATE: Spoke with Dr. E and she seems to think that we need to re-list Kaidence. We shouldn't have a problem getting her listed for a new heart as long as her biopsy comes back 'clean'. If she has any rejection.......Kaidence cannot be listed until it's all cleared up. So we are praying that her heart tissue looks good and rejection free so that we can get her listed asap. They are changing her Rapamune back to Cellcept. These are antirejection drugs. Rapamune and wound healing do NOT go hand in hand. Therefore we will take her off that medication today and start back on the Cellcept. We are hoping that the surgeons will still allow Kaidence to be listed with that medication still in her system. The worry is that if she did get re-transplanted with this medication in her system her sternumotomy won't heal.

We still are waiting to meet with the surgeons & nutritionist. Wow!!!!

I will post more as we get test results. We are hoping for 1) Being rejection free 2)low antibodies (this will open up the donor pool). 3)Re-listing her ASAP 4) Her sweet little heart holds out long enough for her to get a new one.

Today seems like a dream. Not my favorite dream but a dream none the less. I cannot believe we are really doing this so soon. I have many mixed emotions about everything. I have grown so attached to our sweet donor family. No matter what happens, we will always be family. They have given us what no one else could. They have changed our lives for the better. I hope they know how grateful they are for what they have given to us and for the relationship that we have with them. They are wonderful people. I love that little angel heart that has been beating within her chest!

Ready To Rock!

They just took Miss K to the Cath Lab. It should take 2-3 hours. Dr. D is doing her cath and he is the one that did it 4 years ago to get her listed. He is a great guy and I have complete trust in him. Kaidence was so excited last night.....she couldn't sleep. She LOVES this place. She had asked if we could play 'Eye of the Tiger' for her as she went into the cath lab. That totally cracked me up. Well, I didn't have the song ready SO I had to sing it for her. Now that we are all pumped full of adrenaline......we are now ready to fight!

How I count my blessings that she loves her mission in life. I have already started to see Heavenly Fathers hand in many things. Those taking care of Kaidence will be guided and directed, I KNOW that will happen. Thank You for your prayers. Gotta run to all of our meetings now. I will post ASAP!!!!!

Bumping up the Heart Cath!

Modays appointment was bumped to today because of the stomach flu that I had. Kaidence's heart function still looks good but now her heart shows that she has another heart valve leaking. Her Aortic valve. One that has never leaked before. Dr. E doesn't seem to think that it is related to the CAD but her gut tells her to bump up Kaidence's heart cath to this week. We would have done the cath today but she just ate a banana while waiting for Dr. E ;( Her heart cath will be this Thursday!

I can't help but think this leaky heart valve is Heavenly Father's way of making sure the timing in things works out for Kaidence. I do not doubt that His hands are guiding things along. If she needs to be re-listed....lets get it done! If things are improving then what a blessing that will be!!!!

Who knows what they will find on Thursday. I have a feeling that it will be a big, busy day for us. If she is re-listed, it will be the same week that she was listed 4 years ago. Crazy huh? Maybe on Mike's Birthday (his bday is Friday). Am I ready to do this again? Not so sure but I guess I am as ready as I will ever be.

I do feel that Kaidence maybe does need a new heart. It's a hard thing to think about. This little heart within just keeps working and fighting hard for Kaidence and I have no doubt that it will do that for her until she is ready for a new one. It came from an amazing little boy. We feel peace and comfort. We are grateful for your many prayers in our behalf and would be so thankful if they would continue. Thank You for all the kindness you have shown. We really couldn't do it without you!