This and That......and some pics

Let me start by introducing the newest members of our house hold.....Chance and Chase! (They came at the right time, together and pretty much potty trained. They are perfect for our home and our situation. These cute little guys are 3 month old Shorkies and they are brothers. They have brought so much joy to my kiddos who have missed Kirby so much. When we do get this new heart, the boys will have these two little guys to keep them busy.
Saturday was a dance recital for Kaidence and she was so excited. Her brothers were at SIBS day up at the hospital but she had a bunch of groupies to support her dance. She danced to Tangled "I See the Light". She did a perfect job and I loved watching my little miracle dance.


On March 2nd we celebrated Devohn's 8th Birthday. For those that don't know, Devohn is Miss K's heart donor. We celebrate every year with a balloon release. This year we sent 8 balloons to heaven for him, one of which was a spider man balloon. My heart was so very tender that day.

Now to the medical stuff....K's cardio appt. Monday was great. It's my understanding that he is making progress on the list. I cannot help but feel that any day now that call will come. I am so terrified. My emotions are so mixed. I hate waiting knowing what has to happen in order for us to get that call. It hurts my heart. I fear for Kaidence's health as well. More this time than the last time. It will be more dangerous this time around. She just looks so happy and healthy....at times it still feels like it's just a bad dream!

Update:
Yay!!!! Kaidence and Carden have had strep throat and fevers!!!! I have to say that having sick kids and knowing any day a heart could come makes me a little CrAzY! This last week, I felt panicked knowing that I had to get them better. Today, at the moment I think things are improving.

So in the time we wait, I pray. Pray with all my heart that what is meant for Kaidence will be. That if she is meant to get another heart, that it will happen. Pray that if another family will be involved in this process that they will be greatly blessed beyond anything that I could ever comprehend. I pray that my family and myself may be prepared for whatever may come our way. I pray that my spirit, my body and my mind will be ready for the roller coaster that is sure to follow regardless of whatever way things go. I pray for Devohn's family, I pray for my daughters life that will be held in the hands of God.

Happy Birthday!!!!

Happy Birthday to my 5 year old miracle! Kaidence, love you more than you'll ever understand. Praying for many more Happy Birthdays for you! Hugs to Devohn's family for giving me ALL 5 of these Birthdays!

Today for your 5th Birthday you wanted/had

1. Your bedroom door decorated and a shiny heart balloon.

2. A cake with dolphins and Ariel.

3. A Sewing machine so you could sew your face masks and do 'team work' as you called it!

4. You got a sewing machine. You also got the Little Mermaid talking hair salon that your mom waited in line for 2 hours on black friday after I had originally bought what I went in for. One day you'll understand...Nanna and Pappa gave you a sewing kit and a case full of makeup (BTW, your lipstick tonight was beautiful and VERY pink).

5. You went to preschool and they celebrated your birthday just like any other kids. You took mini pink cupcakes and apple juice to share with your friends.

6. You had a McDonalds cheeseburger Happy Meal for lunch.

7. I begged you to take a nap because you were a little bit grumpy because you tried waiting up all night for me to decorated your door. Therefore, mom really wanted the nap because I couldn't decorate your door until you were asleep (and I was putting together that salon of yours).

8. Dad stayed home and smoked a yummy beef brisket for your birthday dinner because that was what you asked for.

9. You didn't have to clean your room today but I have a feeling it will take you awhile to do tomorrow.

10. Now you are in bed asleep. Hopefully dreaming about something wonderful.


To my Miss K.....Ohhhh, how I love you and pray (especially today) that you have many more Birthdays to come!

There is another new post below...so just keep reading!

Little Happenings and Saying goodbye to Kirby!

Today my heart feels full so I guess there is no better time to write a post. I know that so many things have happened since last writing but I always think I will remember when I get around to it and then I don't. Therefore I will pick up once again with the recent things and then fill in anything I may remember.
First of I need to document that we had to say goodbye to our sweet little doggy Kirby. Kirby has always had mental issues (like she could only turn one direction). Over the last couple of years her brain started determining and she needed to be put down. How heartbreaking that was. She was only 9 years and was such a big part of our family. She was great with the kids, took turns each night sleeping in their bedrooms and loved going to the family cabin. Our house seems so lonely and my floors are so dirty without her around. The older boys went with us to the vet and held Kirby as she passed away. I am so proud of McCaden and Camden for choosing to do what was right for Kirby even though it hurt their little hearts to do it. Maybe doing something that hurts so badly because you love someone or something so much helps them slightly look at the gift that Heavenly Father gave to us when he gave us His Son. Now I know that this is in no way a comparison but I think on a kids level it can give them a little seed on this subject to plant in their hearts.

McCaden and Mike made her a little coffin and then we buried her in the backyard. The family came over and we sang her favorite song "We Are Going to the Cabin" and then followed it up with McCaden saying a cute little prayer and Camden doing a gun salute with his cap gun (Grandpa Maddock got a gun salute from serving in the Army so now he thinks it's a pretty cool thing). Then we released balloons that we were given from the kids cousins. We love you Kirby!!!!

Now on to the medical stuff.....things are going well! Kaidence has been healthy and full of energy still. Her heart sounds great although I know the inside is very sick. She continues dance, preschool and speech therapy. She LOVES her dance classes and has a performance coming up March 3rd.... She was fitted for her costume and cannot wait! She is really starting to pick up on preschool things now that she is able to go more consistently. Kaidence is going to cardiology once a month now and her echo and labs still look good. So we just continue to wait for that call. I am not sure that I am ready to send my healthy looking baby girl into such a dangerous, high risk (as the surgeon calls it) surgery but we have no other choice. I think about it all the time while at the same time trying not to think about it. ....doesn't make sense, I know. There are times that my nerves get the best of me and I start to feel down and then there are other times that my heart is so happy and full. I love this little girl so much!!!

Kaidence (like her mom) LOVES to talk! The other day she was eating an apple and talking about how the apple skin is good for her heart. She then told me that "McDonalds apples don't have the skin on them and that's just irritating". She pretends to be healthy but she loves her bacon and french fries.

Next week Miss K will be turning 5!!!!! WOW, I cannot believe that my baby girl is that old. She surely is starting to turn into a little girl.. Both Mike and I have seen it a lot lately. She is very independent. Kaidence's loves doing her preschool homework and I am proud to say that she is a lefty just like her mom! She likes to pick out her own cloths, dress herself, do her own hair (and makeup) and choose her own food. She hates it when her brothers boss her around and tell her what to do and they hate it when she does the same to them. All around it's a normal relationship. Every Friday the kids love having sleepovers in each other's rooms, so that its proof that they are all good buddies when all is said and done.

That about sums it up. Hope all is well with our wonderful friends, family and followers!!!!

Still Waiting and another BIG Thank You!

You know how you get so far behind in something that it just seems overwhelming to get yourself caught up? Well that is how I feel about the blog at the moment. I had hopes and goals of posting pics and day to day details of our Disney World Trip among other things. Oh well.....

I must post about Cupcakes 4 Kaidence. I don't have pics yet, but when I do I promise to post at least one. What an AMAZING night that was. I was shocked by how perfect everything was. It was put together so well. They even had a table set up to honor Devohn.....Kaidence's Heart Donor. The table told a little about him through pictures and words. It also displayed Superman, his favorite Super Hero! It was so great to have others honor him and all he has given to us. It was beyond any of my expectations. The decorations were perfect, the food fabulous, Cupcakes were fancy, Ice cream cart was loved by all and the photo booth was a hit with the kids and families! BTW, I was given copies of all those pics you all had taken in the booth. Looks like many of you had a great time! Also, the Face painting was a HUGE hit with the kids, although for my kids it turned more into body painting. A big Thanks to Paul Cardall for the piano music. I am so glad that you brought your family and hopefully you had a great family night together. The auction was a bunch of fun and I cannot believe the wonderful community that we live in! We had an impressive turnout. The money earned far surpassed any goal that they had. What a blessing it will be for our family as we use it to care for her medical needs. Thank You to all those that came out and supported this fundraiser. Many drove a great distance to come. To those that supported this event although unable to make it, we appreciate you.

Here is a Thank You that we had posted in our local paper:http://http://davisclipper.com/view/full_story/16999292/article-Thank-you-to-the-community?instance=secondary_stories_left_column

Kaidence and her family would like to thank the many wonderful people of our community who gathered together to raise money for Kaidence’s second heart transplant through the two fundraisers that were held this month. On Dec. 3, Creative Arts Academy of Bountiful held the benefit concert “Dancing 4 Kaidence, So She Can Dance Too.” The night was a beautiful interpretation of Kaidence’s life through music and dance. Thank you to the many who worked so hard to make this night so memorable. We want to thank Jana Monson who chose to do this for our little Kaidence when she could have easily done this fundraiser to help rebuild her dance studio that burned down this last July. Your sincerity, generosity and friendship have been engraved into our hearts. That evening will never be forgotten.

On Dec. 12 “Cupcakes 4 Kaidence” was held at the Wight House Reception Center in Bountiful. We were in awe at the support we received for this event. We want to thank those who made “Cupcakes 4 Kaidence” a big success. A special thanks to The Wight House for donating their reception center for the event and to Alpha Graphics who created all the posters and flyers. To the many that donated cupcakes, we thank you as well for your time and generosity. A big thank you to the Bountiful restaurants Texas Roadhouse, Marcello’s Italian restaurant, Rumbi’s Grill, PIE Hole and Royal India for the excellent food they provide for the Taste of the Town and to Scoopology for donating the wonderful ice cream. Many thanks to all the local businesses; too many to mention who donated gifts, gift cards and gift baskets, which were auctioned off and to those businesses willing to let us put up fliers in their business. We appreciate the Davis County Clipper for getting the word out and advertising for both fundraisers.

Finally, a heartfelt thanks to all the many friends, family and strangers who came together to help a little girl so she can get a new heart.

With Hope, Faith and Love,

Kaidence’s Family

more: The Davis Clipper - Thank you to the community

On December 23rd, we celebrated Kaidence's 4 Year Heart Birthday. I cannot believe that 4 years has gone by. It is always bitter sweet to celebrate this day but this year, even more so.

Christmas was wonderful. Everyone was happy and healthy until Christmas night and then the stomach flu hit us again and carried us into the New Year!

Kaidence had a clinic appt last Thursday. She looks great! Deep down, I keep wondering if her heart really is sick. She looks so healthy and is full of energy. Even when she got sick, she seemed to fair better than others in our house. Truly a blessing indeed. Kaidence continues to go to preschool 2 days a week, dance 2 days a week and speech therapy 1 day a week. She is a busy little girl who seems to be living life to its fullest.

We have now waited for a heart under both extremes. The first time we waited in the ICU with my daughter dying each day before my eyes. You didn't need to be a doctor to see that. The emotions we felt and the heart wrenching things we witnessed while watching others has had a major impact upon my life. However, I cannot forget all the beautiful things we saw and felt as well. The miracles that have also left and everlasting impression. This time we wait from home. Waiting with a daughter who doesn't look sick on the outside but knowing that on the inside her heart is very sick and it threatens her life. Waiting at home has been such a blessing for our family, especially the kids. Such a contrast to 4 years ago. We are able to be together each day and all sleep under the same roof at night. I must admit however that waiting has seemed a little harder this time. Maybe it's because I know what we are in for. Maybe it's seeing her so healthy now and knowing how sick she will be after transplant. It could be the fact that this time she isn't the highest priority which is a blessing but at the same time makes it harder to get a heart. For some reason, I felt more proactive in the hospital like everyday we were trying to fix her and get her a new heart. At home, I feel like I am doing nothing to get her better. I know that is not the way it is.....just how it feels at times. So lately I have taken up this 'nesting' thing. I have cleaned out K's closet and organized all medical equipment and supplies and then moved on to other closets and spaces in the house. I have gone through some old transplant papers and some other things that needed to be done for years. Ya know...those things that are always in the back of your mind and you don't always realize how much they weigh you down. Some emotional things that just needed to be done from her first transplant. That feels good and is keeping me busy. I know things are getting closer to happening....like everything else in life, it's the not knowing the details of what and when.

Thank You all for keeping tabs on us. I will truly try to be better at this blogging thing. I know many keep checking in and not seeing a status update....I promise to update the moment we have any big news. Until then I will try to update as much as I can! Thank you all once again for your love, kindness and support!

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!