Halloween

For Halloween, we came to our new house to trick or treat with our new neighbors.

We sat down outside in chairs and talked to ward members, friends and met a lot of new neighbors. We had a great time. 

Not long after we sat outside, some boys in our ward came by and asked Hyaden to go with them. He loved taking off with friends on his own. He came back with a haul. 

Bored, Chad took a chair up to the roof to hang out and people watch. He was so funny. 

We were excited for our new home and new neighborhood. Lots of kids. Lots of fun. Very friendly. Perfect neighborhood for all of us. 

Even Max decided Halloween was worth it and fun since he was able to eat a lollipop. Too funny.

We are Moving!

It's true! We are up to our eyeballs in boxes, packing tape, and misplaced items. 

And although moving is stressful and difficult. It is also filled with laughter, pranks, silliness, craziness and love. 

What do you do with a Spider-Man web? Attack the kids, of course. 

I love my silly and crazy family. I love that no matter what our address is, we will always be together. 

And this sweet niece of mine. Yes. She has been one of my best workers and she has volunteered to be here and help pack and do whatever we need. Love her so much! 

I will catch up my blog with stories, miracles, tender mercies from our Savior and all the happenings in our lives, as soon as we are moved and semi unpacked. 

Until then, from our crazy family to yours, Happy Halloween! Eat plenty of treats, make lots of memories and hold on tight to those you love. After all it is the ones we love that makes this life worth living. 

Garage Sales

We have been having garage sales like crazy. Trying to downsize from 2800 sq ft to 1500 sq ft definitely has its challenges. 

Our rule of thumb was 1/2 of everything needs to go. We have tons of storage in our current home and next to none in the new house. 

So, we have been trying to go thru drawers and closets. To say it has been challenging with me sick is an understatement. 

Luckily, I am surrounded by great people at are being wonderful and helping out. 

We let Hayden miss school in Friday so he could help. Brooklyn joined in to help on Saturday. Julie, Joyce and of course, my dear husband ran the entire sale, both days and last week. 

I am so grateful for the doors and windows my dear Savior is opening for me. I see his Hans at every turn in my life. He is so close. 

Our house looks like a hurricane hit. There is stuff everywhere. Boxes. Packing materials. Sale piles. Give away. Etc. etc. 

Jodi, Suzi, Julie and Joyce are being good sports and taking a lot of things that I love and letting me store them at their houses. Ok. I've given them some things knowing they will be accessible when/if I need them. 

I am so grateful for e support, encouragement, help and love. I am in awe. So grateful!

Gratitude

Gratitude!

Relief! 

Thanksgiving!

Hopeful!

Tender mercies! 

God is in charge! 

My Savior knows me and loves me!

Peaceful!

Still. 

I know my Savior lives. I know he is guiding and directing my life. I know he is making my life into the beautiful masterpiece it is. 

My Savior is in the details of our lives. My life. Each day. Every day. He is working on making my life the beautiful tapestry, created with love, by him. 

Good things are happening in our life. He is walking this road with us and is making the journey fun and the strength to walk it. 

I love my Savior. I love his goodness. His love. I am eternally indebted to him for all his tender mercies and love. 

Ice cream sundaes

Love these two and their love of all things food! Huge ice cream sundaes, popcorn, Minecraft, Ironman 3 and laughs, reenactment of superheroes and fun stories. They bring so many smiles to my face!

Hospital-more treatments

Oh Mayo Clinic and the joys that place brings.

Thomas and I met with doctors at the beginning of September. I had taken an extreme turn for the worse and each day was getting more difficult than the day before to just survive the day.

Seizures were more frequent, passing out a daily occurrence and the exhaustion and pain was becoming quite excruciating.  We didn't know what to do. Getting into Dr. Goodman at Mayo, even being an established patient, can take months at best. We knew that was not an option. We gladly agreed to see one of Dr. Goodman's associates.

Dr. Goodman scheduled me back to Mayo Clinic for day of testing. They ran all the same autonomic tests again. I knew the results were not going to be good, when they could not even complete testing because my heart rate, blood pressure and breathing would not cooperate. The tilt table was a disaster bringing all types of complications, but none as bad as the breathing machine. My autonomic system, not wanting to kick in, made the testing near impossible. I was struggling for air and with that, my heart did not know what to do and wanted to rebel.

As Thomas and I met with doctors, later that afternoon, the test results were not available. We sat and talked about how serious things had become. We talked of the digressing health I was again facing. We asked about the possibility of again receiving the IVIG treatments and other infusions. We were told with the complications that I received last year during these trials, that they would never attempt that route of treatment again, unless we were in a life/death situation and things were dire.

We discussed my health diagnosis in detail. I was given the cold hard facts. I was told that me beating this disease or overcoming it or even having any expectation of a normal life with this disease and severity was less than 5%.

I was given strict instructions. I was told no exercise and no walking and that I was too sick for a recumberant bike. I was told that with my digestive system shutting down that I needed to eat six small meals and then I could not get up for two hours after each meal. I was told I could not cook because I could not stand for the required amount of time it takes to stand and that with my short term memory issues, the stove was no longer something I could utilize. The list of cant's and dont's grew. The list of changes grew, as well.

Yet, Thomas and I had received an answer weeks prior to this appointment. Thomas and I had both been praying together and independently of one another about what to do and where to go for help. In July, Jodi and Suzi had asked me if I would ever consider doing the IVIG infusions and treatments again. I said I would rather die. That I could do anything once but did not think I could go into these treatments again and face how sick I became. It was too much. So, imagine my surprise when I received a very clear answer that I needed to undergo the infusions and experimental transplant again. I approached Thomas and talked to him and he was beyond relief. He said that he had continued to get the answer that this is how we needed to move forward but he also knew how I felt about that round of treatment. So we called the doctors and told them we wanted to proceed.

So when the doctors said that these infusions were not an option, Thomas and I knew differently.

Sure enough, on Monday, I received a call from the scheduling office at Mayo, trying to arrange days and times for me to come in to start the process over entirely. We knew from our questions to the doctor the week before that if they were just scheduling me for treatment, that I was in real trouble. We verified with the doctors that this was my only shot at stopping the rapid shut down of my body.

Mid September, Jodi took me to the hospital and sat with me all three days while the doctors infused medication to kill my immune system and input new antibodies and platelets into my body.

My emotions and gratitude cannot be expressed to Jodi and her sacrificing three full days of her life for me. I am eternally indebted. And so grateful for all those that took care of Hayden, made meals and helped in rotations of babysitting me for 2 weeks while we made it thru the most critical time.

Jodi and I did what we always do. We laughed. We talked. We went one by one thru the kids discussing their current challenges and celebrating their uniqueness and strengths. We talked of the future. Of Christmas presents. Of teacher gifts and how to do thank you's. We talked and talked.

During the treatments, I was promised that the Savior would speak loud and clear through the Holy Ghost so that doctors and nurses would receive answers. Day one the nurses didn't listen. However, day two brought the fulfillment of that promise.

As my IV broke in my arm and infection seeped in, we needed a new line. For an hour and half, nurses tried to get an IV line in to no avail. A PIC nurse was called in to complete the challenge. She was shocked when the ultrasound machine revealed that they were indeed in my veins but there was no blood actually in them. The nurses really talked to Jodi. Jodi helped them piece together what was happening to me. Each day at 1:30, my body has had enough and begins to shut down. Stats were taken each day and it was determined that my body is in shut down mode and my stats do drop well within the coma levels.

Anyways, they finally got in a line in my upper left arm. Infusions began and since the nurses had spoken to Jodi, they called the doctor with suggestions of switching up my pre-meds. This incredible nurse, could have possibly helped to save my life. She added meds and the frequency of them. As my body would try to slip into meningitis and in rejection of the transplant meds, the benadryl, tylenol and allegra would calm the reaction of my body to fight the treatment.

Day three brought more challenges. Jodi had to leave at 1, and Julie came up to stay the next couple of hours and bring me home. Jodi was uneasy about leaving me. When she got home, and was headed out for the Primary program practice, she called to check on me. I told her I couldn't talk because I was possibly being admitted and was trying to talk them out of it.

Even with the premeds, my heart rate dropped to 31, my blood pressure shot from 90 or so to 148/72. They were NOT happy. Nurses started coming over, techs sat in awe and could not believe how I felt and what all my numbers were doing. I told them it is how I feel EVERY afternoon, terrible but I deal with it. They asked if I was going to pass out and I told them no. I stood and walked. They were in awe with where my heart rate and stats were at. They noted that my heart was struggling to keep up and didn't know what to do, so it was basically just shutting down. They were in complete shock when I could walk. Sure it was a struggle and hard, but it is every day.

Only because my doctor has a "do not admit to hospital" order, was I not admitted immediately. I begged and pleaded my way out. On the ride home, I thought I had made a bad decision. I thought I may die. 

I turned purple and blue a couple of times. I struggled to breathe. The pain grew with agony. To breathe excruciating. 

However, I felt at peace and reassurance that my Savior stood with me. He stayed with me during that long night of fear and pain. 

Day by day, it eased. Day by day, I have seen gradual improvement. Day by day, I am gaining a piece of myself back. 

Most of all, I felt wrapped in the arms of my Savior. He loves me. He carries me. Through my darkest hours, he is with me. I know I was to walk this road. Beyond that..... I will continue to trust my dear Savior and shows gratitude for each day that I can stay with those I love and that my Savior never leaves me. What a priceless gift. 

Sacrificing home

Today is a day that I knew was coming for a very long time. Amongst all that has happened to our little family in the past couple of years, we knew that we would not be able to stay in this house forever. With me not working and the medical bills continuing to pile up, there really were no other options except to put the house up for sale and make some major changes in our lives.

Change isn't fun. Hayden and I especially do not handle change well. Especially when that change involves the unknown in so many areas. Always before when our house has been up for sale, it has been for positive moving experiences. Each time it was a move that was exciting and anticipated. This time is very different. We knew that with all that was happening, and all the mounting medical bills that changes had to be made. For months and years, we have cut back, lessened our living expenses and made budget cuts. And because we have been extremely blessed and so well loved and taken care of, we, with the amazing kindness and generous help of others, have been able to stay in our home.

However, in light of the recent medical diagnosis and the future of my illness, more permanent changes needed to take place.

I can honestly say that this has been a very difficult challenge for our family. It isn't the "things" or the comforts of home that we have mourned the most in making this decision, but the loved ones that we say goodbye to and the daily comforts and memories that we have of our time in this wonderful ward and home. We love the people in our neighborhood, our friends and our ward family so dearly.  We have been able to do all that we have, because we are encircled in such gentle arms of love.

I have spent many days and nights in prayer, amongst the falling tears, trying to figure out what the Lord has planned for our family, where we will go and how we will make things work out. The numbers do not add up. Medical bills far surpass any chance of stability and long term security for our family. Our only choice is to trust that the Savior has taken care of us in every way, always, and he will continue to do so.

The challenges have been many, the trials and obstacles to overcome, immense. Yet during each and every trial the Savior has stood with us, carrying us, helping us, always preparing a way for us to face whatever comes. One of the hardest trials, I personally have dealt with is sitting Hayden down and telling him that we were going to lose this house, and harder yet is that we had no idea where we were going to go or what the future holds. It is a moment in my life that I tackled, in complete faith that somehow, someway, the Lord would help Hayden to understand and find comfort in the fact that the Lord has always helped us and that although we had no idea what would happen, we would be okay.

As we sat down with Hayden, prayers in our heart, we laid it all out to him. As we did, something happened that I will always consider one of the most tender and loving of moments from my Savior. I found myself eloquently and without tears, explaining things to Hayden. As we talked, Thomas shared 1 Nephi 3:7, I will go and do the things which my Father in Heaven hath prepared for me, for I know that the Lord God giveth no commandment unto the children of man save he shall prepare a way for them to do the thing which he hath commandeth them.

That was the answer. We had prayed about what to do. We knew this house was no longer in the plans. And we decided to walk away trusting that somehow, someway, the Savior would help us home, wherever he needed us next.

As we spoke to Hayden, he understood far beyond his years. He felt the Holy Ghost whisper and the feelings of peace comforted his heart. In Hayden's true fashion, he likened the situation to Abraham and Isaac. To Hayden, the Savior was Abraham, I was Isaac and our house was the sacrificial lamb. In his own words, he relayed that our Father in Heaven had called me home, and the Savior was to take my life. Instead, as the Savior has many times before, he stepped in and provided an alternative sacrifice. Instead of sacrificing his mom, Hayden was only required to sacrifice his home.

As Hayden relayed this story and finished the last sentence, he threw his arms around me and said, mom, I would choose you any day over this house. I am not going to complain to the Savior or get mad at him that we have to lose our home, but be grateful I didn't have to lose my mom. He then added, words I will never forget. He said, Mom, do you think the Savior feels bad when he steps in and saves what really matters and then people complain because the best lamb had to be sacrificed, too. They don't see the blessings but only what they gave up? That is crazy, isn't it.

At that moment, my son was the teacher and I the student. Yes, he is absolutely right. The house is a small price to pay for my life. And we are so grateful that I am still here. It may not be in the way that we would prefer or how we saw healing to mean. But, I am alive to teach Hayden, to be with my boys at night, to tuck Hayden in, and to teach Hayden important gospel truths. I am here every day when he comes home from school. I am here when life gets rough and he just needs a mom to understand. I am here to be his biggest cheerleader and fan. Most of all, we are together, the three of us and Max.

So, lots of changes are coming. We are uncertain as to exactly what the future holds. But, like the Savior has with everything else in our lives, from Hayden's heart surgeries, to Thomas' pancreatiis, the miracles that have kept me here with those I love and the every day ways the Lord see to bless our lives every day, I know he is in the details of this move. I know he has a plan. Whether I understand it or see it or not, I am safely in his hands, just as I always have been.

There is no greater blessing. There is no greater feeling or peace that can come, than knowing that the Lord is with me. He knows me. He knows exactly what I am going thru. He knows the things that will ease my pain both physically and emotionally. I know that the Lord, my Savior, is in the details of my life. Here and now. He is guiding and leading the doctors to answers and findings and understandings that they did not have even six months ago. He is easing the burdens that are heaped on our backs. He finds ways each and every day to let me know that he loves me, guides me and walks this ever so scary journey with me. Most of all, I know that if I trust him completely, that he will help me to figure out a way. He will open doors and windows that would have never been possible without his help. I know that my Savior is in the details right now, arranging things and circumstances so that we will end up where he needs us. I testify he lives. Without him, there is no way that I could handle all that I am being asked to. I am too weak on my own.

But, as the scriptures state over and over again, "Peace be with you. Peace I leave unto you. For lo, I am with you." and he adds, "Take my yoke upon you , for my yoke is light." and "I will never leave you comfortless." He is my Savior, my friend, my Redeemer. And, although these challenges are overwhelming and frightening, I have the Savior leading the way. I have placed my burdens at his feet. I am choosing to let him handle this. It is way too much for me to handle. But, with him, all things are possible, all trials can be overcome, and all heartaches can be mended. I testify that he leads me and at this moment, I am sure that he is carrying me and I am forever grateful.

And like my wise son said, "Why would we ever complain about sacrificing the lamb, when the son is saved?" Each time I find myself getting down and frustrated and overwhelmed, I take a look at my son, and I pray for a softened heart and gratitude for what we have been given. Because we have been so very blessed and have been given so very much.

Dance party

Love fall break and the spontaneity it brings. 

Dance party!!!!!