Wednesday, November 26, 2014

PCH testing

Our adventures started early in the morning at 6am wake up. Lisa came to get us at 7am and both Hayden and I were so very touched that Chad came. How sweet is he. He is such a blessing in our lives. I love and adore him. 

Hayden seemed so calm with Chad there. Chad creates a strength and calmness in Hayden. Oh how I long they will always be close. I love their precious relationship. 

Waiting at PCH... I remembered countless trips as I watched babies come in for tests. I remembered his toddler years and the nurses crawling out and giving him piggy back rides into the appointment. I remember little tikes cars driving him from test to test. Oh how I love Phoenix children's Hospital. They do care so much. 
I'm grateful for those that make our lives better like Lisa and Chad. Always willing to help out and just be there. The peace I felt as Hayden was more concerned with Chad's story than the test brought overwhelming peace to my heart. 
Hayden was so much more confident than he has been yet still asked a million questions. What are you doing? Why? What will this show? What are you trying to see? Will you know right away if it is good or bad? What are you going to do next? Any needles? Will it hurt? No bud. Just an EKG to start. Then blood pressure from laying to sitting to standing. 
The hook up begins. As the guy told Hayden the chair was there for him to jump over I probably yelled no a little loud. But considering last time he got so into it and was running and decided he was in a video game and tried to jump, I panicked. Poor bubba. He will never live that down. 
He was so funny talking to me while they were reading his charts and talking to the dr. He wanted me right by him. I love that he still needs me and wants me. 
Then, apparently I annoyed him - not sure how. Probably taking his picture. He loves me.  Even when he does the eye roll. Even when I make him crazy. But it is easy to tell if I make him crazy because when I do, this is the face I get. 
Then the test started. He walked and jogged. When it was over he asked. Ok. When does the test start. Silly boy. That was the test. He endured. He did well. Best yet. They think his coronary arteries are ok and it is. Scar tissue, chest wall or wiring problem. Some of those are more severe than others but at least it is not grafting a wire from his arm and recreating his heart. The other options seem less frightening and invasive. So now we wait. But we are grateful all so far is well. What an adventure. 

It's beginning to look a lot like Christmas

Our home is ready for the festivities. We are celebrating Thanksgiving with my family at Grandpa Simonton's house so mine could get ready for the spirit of it all. 

To me, the tree brings peace and love and a stillness. I love sitting in the darkness and watching the lights sparkle. A stillness of peace comes over my soul. I think of that first beautiful Christmas night. Oh how I long for that rememberance of what it felt like looking down and knowing our dear Savior was being born. And having a full understanding of His love and birth and the purpose for His life and atonement. I wonder of my looking at the lights in the dark, feels even remotely close to looking at the star in the heavens on that first Christmas night. Regardless, it feels my soul with peace me love and hope. It helps me remember why I love this precious season so very much. I love the goodwill towards men. I love the excitement in the air and the way we all try to do nice and thoughtful things for one another. I love the love that fills my heart. 

For me, Thanksgiving is an extension of Christmas. Not a separate holiday but the beginning of the Christmas season. Thanksgiving is to literally give thanks. To list ones blessings one by one and to voice gratitude for those people and gifts that mean so much. What better way to start the beautiful Christmas season than with a grateful heart. 

As we allow our hearts to fill with gratitude, our desires to help one another become deeper. We realize just how blessed we are and are motivated to share our blessings and gifts with those around us. When we show gratitude and love, we are honoring our Savior. I look at it like a prayer. It starts with Thanksgiving. In prayer, we give thanks and list our blessings. That is the Thanksgiving part. The ending of the prayer or season is Christmas Day, wherein the things we have asked for our granted. During the Christmas Season, we ask for the gifts we want. We try hard to grant others wishes and desires. 

So to me, the tree, so vital to bringing in the peace and joy during this wonderful time of year is vital. Hence it always goes up before Christmas to represent the start of our precious holiday season. To remember that gratitude is the center of Christmas from giving thanks to remembering that precious night so long ago when our Savior was born into this world to teach us how to come home to Him. He prepared the way. We must follow that star and find our way back to Him.   

We had so much fun over two days transforming our home for this precious season. Suzi came over with Krispy Kreme donuts and helped decorate our home. We put up the Jim Shore display skipping the village this year. We added the touches of cookie jars and our beloved nativities. 
Then came time for decorating the tree. I love unwrapping each ornament. Ones collected throughout the years. From The first Winnie the Pooh ornament to the one collected on Hayden's first trip to Disneyland, to ornaments from each vacation taken and precious moments we wanted to remember. We first decorated our family room tree with all of the Disney ornaments. Oh how I love my tree. I love the joy it brings. 
Sunday morning, Julie came to help us decorate the tree in our entry way. This tree holds family ornaments and ones made by Hayden. It holds the memories of a lifetime. It holds an ornament that represents each year of our lives. There are cruise ships and new homes, celebrations of new babies and new dogs, moments I will always cherish and remember. I smiled as I put on an ornament from my days working in the mail room at the MTC and ones Jodi made when she was in high school. I laughed as the fish was hung from all of mine and Suzi's college day trips to Jackson Hole. To the cupcakes for a cure ornament remembering all the countless cupcakes Jodi has made to help me obtain the medical treatments I need. I smiled as I recalled countless memories and a life filled with joy. I love he reminders of good days and precious moments. As I add each one to the tree, I am reminded of all the good gifts I have been given. All of the joy and love that has made up my life. I feel like I am in my own version of It's a wonderful life. I have had a great life and I am so blessed to share it with such incredible people. The blessings we have been given are too numerous to count although we certainly try. As we have been so very blessed in this life.
We ended our Christmas decorating in Hayden's room. His tree is filled with rememberances from his life. From his ornament at birth during the beautiful Christmas season to his years loving Elmo and bear in the big blue house to his Toy story years and all things superheroes. He has a reminder of each thing he was into for each year of his life. He has a rememberance of each vacation. And like me, each life event such as moving or new dogs or accomplishments. I think long and hard as to the ornament that I will add to his collection each year. This year will definitely be something with Legos, so it's a make it year ornament. He will add an ornament in rememberance of getting Maya in 2014. In addition, he has two Grandmas that add ornaments to his collection. Grandma Joyce lovingly makes an ornament each year and dates it. Oh how we love putting them in order and seeing how they all represent her and her love. Grandma Julie adds special ornaments for his rememberances with her from a guitar to moments they have shared together. It is a precious time as we walk down memory lane of Hayden's life telling stories and laughing. (Even if he wouldn't allow the Elmo or Little Einstein ornaments on the tree this year). He is his momma. He has a huge smile stretched across his face as he recounts each ornament and each life event. Gratitude and laughter fills our home. Smiles come easily. Love is so thick you could cut it with a knife. We feel our Savior's love, immense gratitude for all we have been given and the Spirit of this precious time of year is sparked in each of us. 

Oh Christmas tree. Thank you for your numerous gifts. For your joy you add to our lives. For allowing us to see how great our lives have been and how truly blessed we are. You being the spirit of Thanksgiving in our home as well as the beautiful and cherished spirit of Christmas. You represent so much goodness and ao much gratitude. You are a reminder of that beautiful night when our precious Savior was born into this world. It was a Holy night that night in Bethlehem and we try to recreate those feelings in our home as we sit and watch the twinkling of the lights on our tree. 

My heart prays for peace and love for all those within it's reach. May we all be filled with the magic and love and joy that we call this precious holiday season. 

Monday, November 24, 2014

Twinkling Lights

This weekend we decided to put up the tree and decorate the house. I'm so glad we did. I love how the sparkling of the. Christmas lights brings a peace, a calm and a sweet joy into our home. I love the feelings of the twinkling lights shining on the nativity scene. It warms my heart. I feel all is well. 

I laid on the couch with just the Christmas tree lights on. Oh the feelings I peace embraced my soul. I looked at each tiny light flickering and how the combined light of each little light brightened the darkened room. The tree glowed with brilliance. 

I thought of my life. Each of those around me are lights shining in a world sometimes filled with darkness. Each individual doing their part to be a light in the world and a light beconning hope and goodness. Each light, standing united in shining and beckoning to the world the hope and joy of our Savior. I watched as the lights began to twinkle. How the lights pushed back the darkness. Even in there small way, burning the darkness in its path and bringing about light. 

I recommitted myself to be a light. To shine brightly, even in the dark, even when I don't understand. I watched as the twinkling light lit up our Savior's face. When looking at the baby Jesus, lit up by the little light, the light gets lost and the focus is on the Savior. Oh how I long to be that light. The light that shines so brightly, it isn't seen, but through it's light, the Savior is illuminated. That the light reflects so much on the Savior that it itself blends to the Savior and where His light ends and my light begins is a seamless flow. 

I looked at the dim lights on the tree, I noticed the few burnt out. I thought of those struggling to find their way and shine their own light. My goal this Christmas is to help the Savior rekindle the fading and burned out lights. To help them back to the light of the Savior and help them once again find their light. 

As I sat alone in my thoughts, I found myself praying and talking to my Savior. I asked Him to help me reach those that need to maybe have their light relit. That this beautiful Christmas season may provide opportunities for me to reach out to those struggling. 

We are not in a financial yposition to help many in their temporal burdens. But we can make a difference in their joy. We can be the light that lets them know they are not alone. I can be the listening ear, or voice of reassurance that each light matters. That the baby Jesus was born to become our Savior. He lived and died for each of us. That each life matters. That no matter how far you have walked from the Savior, He has never strayed from you. That each of our lights, no matter how brightly or dimly they shine today, can be brightened and even relit, if needed. 

I know I was not alone in the room with my thoughts. I felt my friend and comforter, the Holy Ghost whisper truths to my heart. He warmed my soul and eased my heart. He gave me the beautiful Christmas Spirit of love and kindness and charity towards all men. He recruited me to be the light that helps others to find their way home. Just as the wise men, so long ago, took their long journey to find the Christ child, so must we. Three kings found The Lord and so must each of us. 

Finding the Christ child is a blessing for each of us. As we celebrate this beautiful. Christmas season, with each twinkling of the Christmas tree lights you see, I pray that each of us will remember the greatest gift we can give this Christmas is to be a light. And to share that light with all we come in contact with. Sharing His light is easy and our efforts are compounded. A smile, a help, a compliment, an act of service, a good deed, a kind word and a happy heart, all bring the spirit and with it the spirit of Christmas or the spirit of Christ. 

I have never been more excited for a Christmas season. Last year, I was able to teach Hayden he joined the team of helping Santa. Even better this year, I am promoting him to joining the Savior's team at Christmas. This Christmas, we are on a journey to lighten the load, be the joy and hopefully our little lights shining will reflect brightly enough that others will not see us but only see our Savior in our illuminating light. That is my Christmas wish. I'm ready to get to work to put it into action. May we all be the light. And let the light of Christ in each of us shine brightly this beautiful Christmas season. 

Wednesday, November 12, 2014

Not as planned....not what is wanted...but we will endure

Hayden's annual cardiologist visit didn't go as planned. I usually go in and sit through the EKG, watch his heart in the Echo Cardiogram and anxiously await the words, "it all looks great". 

This year, those words did not come. Instead, I hear the the aorta and pulmonary arteries and valves look great. I breathe a little easier. Then Dr. J does the physical exam and talks to Hayden. There is concern in his voice. He asks Hayden more questions and asks me about his pain and exertion. 

Dr J is concerned. It is down to three different complications with varying degrees of remedies. 

First and most likely, a wire which tied his sternum together has frayed or come undone. It could be poking into his chest or more serious, puncturing his heart and causing damage. If this is the culprit, heart surgery will be done to remove the wire and re-wire the sternum, if necessary. 

The next most likely culprit, is the coronary arteries are damaged. With his latest growth spurt, the coronary arteries could have ripped or torn or become worn out. This would require major open heart surgery. Artery graphs would have to be done and replace the coronary arteries. A week to two week stay in ICU would be followed by another couple of weeks in the hospital. If this option is the one, my poor boy will spend his birthday and possibly Christmas in the hospital. 

The least likely reasons is scar tissue and the pulling of it wrapped around the sternum. This would require pain meds, physical therapy, some other therapies and medications. 

Of course, other info can come up and other complications. But that is the info we have now. 

As we talked to the doctor, he sent us directly to Scottsdale Shea hospital for X-rays. He then sent an order to be hooked to a holster moniter at Mercy Gilbert Hospital. He order stat metabolic stress tests, MRI, CT scans and said from there, he would decide what is next. 

While at the first hospital, I received a call. The metabolic stress test would require us going to Cali or Las Vegas for the test. So he changed to a regular stress test with a pulmonary test and some other tests. He wanted them done stat. With that, the Holter Monitor was cancelled and rescheduled while he is in the hospital. 

November 20th at 8am, Hayden checks in at the heart hospital at Phoenix Children's Hospital. He will have a treadmill stress test with pulmonary tests. They will preform the MRI and other tests while in the hospital. From there, the decisions will be made on where to head next. 

Needless to say, it has been a stressful day. A scary one for Hayden and an unsettling one for me and Thomas. As I walked in the door, my strength granted to me as a tender mercy by my Savior, my body collapsed into a massive seizure. Luckily Julie called and heard the slurring in my words and the overwhelming confusion. She showed up and sat with Hayden while I was unconscious and out of it. 

I am so grateful for my knowledge of my Savior. I know He will carry Hayden and Thomas and I through whatever course this road turns. He is our strength. We trust Him. We love Him. And we know He will guide the doctors and guide their decisions and their actions. We feel His peace and reassurance. We feel His love. 

I will keep the blog updated as to my sweet boy's progress. He is a trooper. He is willingly doing all the things the doctor has asked him to do in the next few days, with running and trying to recreate issues so we can video tape them. They are starting him on exercises that will help in the event that open heart surgery is needed. He will need to stretch and grow. I'm grateful I am homeschooling and we get the chance to take care of schooling around his health issues. Such a blessing and if it is the wire or coronary arteries, it is one that could have possibly saved his life. How blessed are we for inspiration. How blessed are we that our Savior guides and directs. We feel His power and blessings. 


Surprise visit

Best surprise ever! 

Sunday night as we were chilling on the couch, with Suzi, when the doorbell rang. I hear "surprise!" And little voices that I love. And then I heard my sister. Not only that, they had come for a slumber party. So so sweet. What a wonderful surprise. 

We talked and laughed and the kids played. After everyone went to bed, I hear a little knock on my door. Talmage was holding his big Shamu and Captain Hook. He said, "mommy said I could sleep with you." I knew she hadn't. I figured both she and Brigham had fallen asleep and he came to find us. He climbed into the middle of the bed with his friends. 

Thomas and I laughed that although a king bed is big, it feels rather small with both of us plus Tman plus his 2 stuffed friends and 2 puppies. It was tight quarters but so much fun. We loved sitting and talking to him. He is so funny and his personality is just precious. 

Brooklyn and Hayden hung out and talked on the couches for quite a while. I love the whispering and giggling and how much they have to talk about. 

The morning came with one by one the kids all congregating in our room. I love morning cuddles from these cute kids. 

We had a great day. Jodi and I even got a chance to go to Target without the rug rats. I love that they are getting old enough to leave. It was so fun helping Jodi with her Christmas shopping. We laughed and had a great time. 

The kids went to go get Chad but since he was sleeping, they were thrilled when Katie and Josh said they would go to the path with them. They played and played and then they came back and played Disney Apples to Apples. They had those kids laughing and having the best time. 

I love them living so close and how wonderful they are to our kids. 

Thomas came home and we rounded off the night with FHE and video games ith Thomas, Hayden and Chad. I observe. I hold the pups. I just listen and smile. I love the joy that feels our home. I love the smiles and laughter. I love all of the loved ones that fill our home and hearts wig love and joy. Life is blessed.  





Friday, November 7, 2014

Garage Sale

We again held a huge garage sale today. One day down. One day to go. Today, I tried my best to sit outside and take money while Julie and Hayden ran the garage sale. It was so so busy that they needed my help. But I felt awful. I tried to make it. I tried to help. I tried to clean up afterwards a little. 

I was exhausted. So so so sick!!!  As soon as they loaded the remaining items in the garage, I fought back tears as the pain was so incredibly intense. Julie asked if I wanted to count and settle money. Absolutely not. I just wanted to go home. I was bright red. I was so hot. I was miserably dying. I barely could walk inside as I fought back tears of pain. Each step more painfully excrutiating than the last. By the time I got to my bedroom, tears fell freely. I soaked in a tub of cold water desperately trying to ease the pain and bring my body temperature down. 

I painstakingly made each excrutiating step to my bed. The sheets felt like knives going into my feet and legs. The cramping and thrashing of my leg just tormented me more. I smothered my legs in deep blue. My nerves kept sending shock waves of electricity throughout my body. Pain was so intense that pain killers wouldn't even touch the pain. 

I tried to sleep. I tried to relax. Pain lasted all afternoon and evening. I counted down for Thomas to get home. 

As I lay in bed, I am beginning to care about the total of my day and the profits pulled in. By tomorrow, I am sure I will be ready for the numbers. There is one thing for positive... Thomas and Julie and Hayden will be handling the garage sale without me tomorrow. I will be in bed. 

But I am so grateful for all those that donated. All those that let us have their hand me downs and donation piles. I'm thankful for Julie letting us have the sale at her house and helping out. 

I am surrounded by wonderful people in my life. Just amazing. So many serve us and love us and share with us. We are beyond bless and unbelievably lucky!

Thursday, October 30, 2014

Halloween week

Halloween came and went. We didn't hardly even celebrate or do most of our traditions. However, Hayden survived. He did other things instead and it was a good month. 

Josh took Chad, Hayden, Kaylee and Kiley to Fear Farm. There are five different haunted houses in one. The entire place is spookily decorated and filled with goblins and ghouls, zombies and werewolves, vampires and clowns. Hayden had a wonderful time with his cousins. He was in Heaven. 

We decorated scary bottles and jars and had a great time. Hayden had so much fun decorating and designing his scary scene, complete with a painted Frankenstein. He loved creating potions and jars with spiders and scary toenails. He has an artists eye and is a great designer. 

Halloween night didn't go exactly as planned. Poor Hayden. His plans fell thru. He was ditched by friends. My heart broke as I remembered similar feelings from my teen and preteen years. As a momma, I want to protect him from heartache but my job is to teach him to handle it not to avoid it. 

We had fun! Grandma Julie came thru and brought over her portable fire pit. We roasted hot dogs and made s'mores as we handed out candy to trick or treaters. It was so hot. So we had to pretend it was cool enough for a fire. We had fun! 

When I pulled out the treats for the trick or treaters, Hayden was in disgust at what we bought. Thomas and I had been to Michaels and had bought erasers and fangs. We bought 250 for under $2. That's what you get the night before Halloween. Hooray. Hayden did NOT think that was a good treat. He found treats that Suzi had bought and pulled those out. So luckily we had small kit kits and nerds that Suzi had bought Hayden. The kids loved the erasers. Hayden's response was, "why would girls want school supplies?" I guess owls and bats and rip graves are not his thing. The boys loved the fangs. 

After the trick or treaters, the boys played video games. I loved to hear him laugh as it was a sad weekend for him. 

Saturday morning he was so sweet. He told me that he was glad he had a fun dad because his dad is always there to step in and be his friend. He asked if there would be fun Halloweens again. I said yes. Just different. Things change but you find new fun in different ways. 

Of course, with his disappointment, Thomas tried really hard to help ease some of his first preteen angst by going to the movies and playing games with his Bubba that night. So October came and went with new experiences, disappointments overcome, fun moments and lots of love. 

I love that no matter what comes and goes and happens in life that my dear husband and my precious son get to experience it with me. Together. All on the same team. There for one another. Ready to face whatever challenges and obstacles and wonderful things that come our way!