Thoughts.....

Well friends, it's another Sunday and I am home with Kaidence and Carden today while Mike took the boys. I hate not being at church together as a family. Something I really do miss (most of the time).  So today I sit home and listen to Paul Cardall's music.  My heart has been touched.  Lately (ok maybe the past 5 years) I have had so many thoughts going through my head.  Lately my thoughts seem so random.  One minute it's complete trust that Kaidence will get a new heart and then other days its the complete opposite.  We have now waited over what Cardiology thought the wait would be for a new heart for Kaidence.  I think the more time that passes these negative thoughts creep into my head.  It seems that a natural response to fear is preparing for different scenarios in regards to that fear.   As if we think of every possible thing that could happen from miraculous to devastation we will be prepared when it does happen and then the heartbreak won't be so traumatic.  I know it doesn't work that way but for some reason that is what I do.  Last time we waited for a heart, every night I went to bed I would plan her funeral in my mind.  Don't get me wrong, I was optimistic.  Ask any doctor there, they thought I was TOO optimistic about things.  But I had the right to HOPE and that is what I did.  However, night time has always been completely different.  When it's silent except for the beeping of hospital machines in the background.  My mind would wander. As it does these days. 

Most the time I do well keeping hope and faith in my heart.  I try not to question the "why" of all that is happening.  However, this last Friday we stopped in at the Creative Arts Dance Academy grand Re-opening.  We had been working in the yard all day and were not dressed appropriately (or clean for that matter).  This is were Kaidence takes dance on Wednesday. This is also that Dance Academy that put on the benefit concert for Miss K last December.  Last summer, this dance studio burn down.  I was so touched that they would do a fundraiser for OUR family when they were trying to rebuild their dance studio.  These are amazing people.  The new studio is beautiful, elegant and the feeling of beauty and peace within in the walls is marvelous.  I know it may sound funny talking this way about a dance studio but it is what it is.  The staff and girls are unique.  As Kaidence walked around the new building with her mask on she was greeted by so many sweet friends.  This is a place that has Kaidence written all over it.  I can feel it in my heart every time.  As she danced with some of the girls my heart was full and broken all at the same time.  As these sweet girls took her by her hand and danced with her I couldn't see the smile on her face because of her mask but I could see it in her eyes. At that same time it also seemed obvious to me for the first time in a while that my daughter was sick.  That her skin color looks pale and grey compared to other little girls, that she has a mask on her face, I could see a bump under her shirt from her feeding tube, her neck veins pulsing with each beat of her heart ....I could see that her heart is broken.  I have always been able to envision Kaidence dancing so gracefully as she grows into a young women but this day I questioned if it would ever happen.  From time to time I feel like life slaps me in my face and jolts me back to our reality.  To the places my mind wanders in the quiet of night.
So what do I do?  I try my best to move forward each day with HOPE and a prayer in this mommy's heart.  I try to count EVERY single blessing that we have been given.  I enjoy the time that I have all my kids together under one roof and thank my Heavenly Father for giving me that gift.
I have Faith that if and when the time is right, my little girl will get that new heart!

Chest Pains and a Heart Cath...

First of all I apologize for not updating my blog during this last week. Normally, I keep it updated with things going on but I didn't have time to grab my laptop before I took K to the hospital Friday. I PROMISE that when we get a heart it will be posted here as well as FB!

Kaidence had a blessing back in Sept that talked about the doctors timing be precise! I feel like over the last week we have seen that promise starting to unfold.

Friday Kaidence woke up crying that her chest hurt. This is a first for her. I listened to her heart and it seemed to be beating faster than usual. I called cardiology and took her right in. We looked a little rough since we didn't take the time to get ready for the day but some things you don't mess around with. Kaidence's echo looked the same, her ECG showed lower voltages. Last time the lower voltages were a sign of Kaidence's rejection. They did labs on her, all of which came back within appropriate limits. After the ECG cardio decided to get Kaidence in to the cath lab that same day. Mike wasn't at the hospital yet and he really wanted Kaidence to have a blessing so I went and found Eric one of Kaidence's NP's that took care of her with her first heat. He graciously agreed to come and give her a blessing. It was beautiful. About 4:00pm she was taken into the cath lab. She was so excited to be at the hospital. She was grabbing nurses, hugging their legs saying "I get to stay here with you." She was at peace but I was worried because last time her heart didn't behave so well. However, this time she did great!

A big fear of ours and cardiology was that Kaidence was in rejection and we would have to deactivate her from the transplant list for a few weeks until the rejection cleared. This became a greater concern as we learned how truly sick Kaidence's heart is. She has arteries within the heart that have totally disappeared! Things are looking a little scary in there and Dr. D had a hard time finding any healthy tissue to biopsy. Her heart is that sick!

The results showed that K was NOT in rejection (BIG sigh) but inflamed. If arrhythmia's or chest pains continue, cardio will talk about a pacemaker. However, they seem to think we will have a heart sooner than later and we hope that she can hold out.

We have been blessed with tender Mercies from our Heavenly Father this week. How grateful I am that things happened they way they did this weekend. Although it rocked our boat big time, we were blessed. For the first time in 7 months I knew without a doubt that Kaidence really needed a new heart. Comparing how sick she looked last time to how she looked this time it was hard for me to process that her heart was "that" sick. Monday cardio and I had discussed the possibility that maybe we could wait a little longer to get her a new heart. Waiting until more symptoms pronounced themselves. Of course they would cath her to be sure. The plan was to discuss this more in 5 weeks. Now I was even more torn! However, we are now on the same page, knowing that this little girl needs a new heart SOON. Although I found this frustrating that she looked so good that I could no longer be sure what to do I had to remind myself that my prayers had been answered for Kaidence. When we found out that she needed a new heart I pleaded with the Lord to not let her health and quality of life deteriorate like it did last time. All I wanted was for her to get the chance to live like a healthy little girl and for the most part, that has happened. With dance and preschool twice a week she has kept busy. She loves jumping on the trampoline, riding her bike, swimming and playing.

Friday was the day that I was supposed to take Kaidence to the Kindergarten Orientation........KINDERGARTEN! She was so excited to go but instead we ended up going to the hospital. However, on Saturday as K was wondering her room, guess who walked out of the room next to us.....her kindergarten teacher for next year. She was as shocked to see us as we were to see her. K was excited to see her.

Saturday late afternoon we were discharged form the hospital. From that point on K has not felt well at all. She is fatigued, sick to her stomach and refuses to eat and drink. I haven't used her G-tube in about a year but had to so she would stay hydrated. Vomiting and fast poopies seem to have made the problems worse. We have been in very close contact with cardio. I think our biggest concern is this illness is a result of her heart getting sicker. However, Camden started throwing up last night and Carden has fast poopies too. I feel a little better about things but we will go and see cardio in the morning.

We are taking it easy around here. Dr. E is out of town and Dr. K her surgeon is also out of town. Hoping that everyone gets back and settled before this heart comes.

Easter and Heart Update

I hope that everybody had a terrific Easter this weekend! At last, we made it out of town after cancelling the trip 4 times! We got Camden a waterproof cast for his hand and left. We felt strongly that we just needed to go! Transplant doesn't let you travel too far when waiting for a heart so we went all the way to Logan. My kids were so excited to go out of town that I had to double check and be sure they knew we were taking them to Logan and NOT Lagoon! They swam their little hearts out and I was sure to let Miss K know that this may be the last time she can swim for awhile. She swam until her lips were blue. It felt great to get away for a time, even if it was short lived. Sunday we took some time to walk around the grounds of the Logan temple and take some pics. That added a great spirit to Easter this year!

Things here are holding steady and crazy all at the same time! In fact, everyone is doing well. Friday I get to register Kaidence for Kindergarten (yes, you read that right). I am trying to decide if we go the route of traditional or do I put her in the Chinese Immersion program? I cannot believe how big she is getting.

Today was her monthly cardio appt. Things still look the same. They were kind today and told me they wanted to give me a heads up that Kaidence could get a heart any day now. They have had quit a few heart offers for her this last week. I cannot help but feel the time is coming soon. It makes me sick to my stomach to think about what it means for another family. I fear what could happen to Kaidence as well. The second time around is very risky. Its a very long road and Its hard to process in my heart and head. All I can do is pray that whatever happens will be meant to be for all involved.

Please keep us in your prayers. Prayer for my sweet little boys whom I am sure can sense the tension in the air no matter how normal we try to make life. Prayers that Kaidence may be healthy, happy, peaceful and brave. Prayers that Mike and I can juggle it all. Prayers that we may know what is right and meant for things to come. Prayers that when the time comes I can bravely hand my daughter over to the surgeons with faith. Most of all prayers for whomever will be giving her a new heart and prayers for Devohn's family for the heart that today's beats within her. Above all, prayers for Heavenly Fathers will to be done.

I am now off to try and get things ready for whatever may or may not come our way!

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!