Please exit the ride to your left.

This post has been over 2 years in the making. We have been through a few uphill climbs, some dips, and some upside down loops. This ride that we unwillingly got on 2 years ago, has come to an end. We are still in the park, and will be for the rest of our lives. We may even need to get back on that dreaded roller coaster ride, but for now, we are on the fairly safe tunnel of love ride :)

I guess I better back up a few months, to Friday, December 12th 2014. The day started as any other day. I was going to work, unknowingly, for the last time. The mounting stress of my job and the stress of waiting for a kidney were too much for me, so I had put in my 2 weeks notice 2 days before. My last day was to be on the 24th and start my new job on the 26th. As is very well known, that did not happen.

It was just like any other Friday. We got up, got ready for the day and I went to work and Lot finished getting the kids ready and Drake off to school. The cell reception was awful at work, so I couldn't send or receive call or texts unless I was by a window. I made my lunch and sat down to eat it when I noticed I had a text from Lot, but needed to move so I could call him. I wish I still had the texts he sent, but they basically said that his transplant coordinator at Intermountain Medical Center had just called him (it was around 10:30 am) to say that there was a possible kidney for him and that we may need to go down in the afternoon. There needed to be more tests run and then they would let us know. That was the hardest part. We had to wait and since I knew that it would do me no use to to go home and worry, I stayed and work and worried. Right after I broke down in front of everyone and told them what was going on. We had to wait until 4 before we got word that the kidney looked like a match and that we could head down Saturday morning, just in case. I left work not knowing if I would be back the following Monday.

There was some concern about the kidney being clean and disease free. You see, we do not know the donor, and may never be able to thank his family. He was from East Africa and had been in jail since January. They were not able to make contact with his family. Just for the fact that he was in jail, there is a much higher risk of infection and disease. There wasn't too much indecision on whether or not to take the kidney. We thought it best to receive a priesthood blessing from the Bishop and a close friend. We were assured that everything would be just fine and go ahead and do it. Lot called the transplant team and told them we would take the kidney and were told to leave no later than 8 on Saturday morning.

It was a whirlwind of a night. We packed for the kids and took them to my parents for the weekend and then came back home and cleaned the house and packed our things, not knowing how long we were going to be in Utah. It was not a very restful night. I think we stayed up late watching a movie, I am not sure. It has all kinda become a blur in my mind.

We were a little concerned about the weather since it was supposed to snow all the way down and the Malad Pass is not fun when it is covered in snow. I also drove the whole way. Lot was nauseous and needed to rest. I had never drove that far into Utah before. I hate driving down there and can only make it to Bountiful before we have to switch. We know the Lord was with us on that drive. We hit rain in Blackfoot and it continued until just past Inkom. Then it was snow. Here is the divine intervention: we could see the snow coming down on either side of the freeway, but not on the road. It was extremely reassuring to know that we were not the only ones that wanted us to get to our final destination in safety.

We made it to the hospital at 11:30am and were taken to a room and Lot was given an I.V. and blood was drawn for more tests. This is how it went for the weekend. I made a trek to Best Buy across the street and bought a few card games to help pass the time. The team was not sure when the transplant was going to take place, so Lot was not allowed to eat this whole time. He had last had food at 9:30 Friday night. Sunday afternoon rolls around and we finally get word that the transplant will take place the next day around 7:30am. Lot was given permission to eat as long as he didn't eat anything after midnight. Not a problem, so we went down to the cafeteria that became my 2nd home and ate something.

Noon on Monday rolls around and then leaves us behind. No word on the transplant and the nurses have not been told when it will happen. It started to get a little frustrating waiting, with nothing to do and Lot not allowed to leave the hospital. Finally, around 2, Lot was taken to the surgery floor and I was left in his room. Waiting in an uncomfortable chair for 3-4 hours did not appeal to me, so I opted to stay in the room on a semi-uncomfortable couch and watch Netflix.

The time actually went by really fast and before I knew it, they were calling me to tell me that Lot was in recovery and they would bring him up in a couple of hours. He was groggy, but looking really good to me:) After he was set up on quite a few machines and had a sufficient amount of pain medication in him, he was able to smile a little and talk a little.

Lets see if I can remember everything he was hooked up to. There was a central line in his neck to administer medication and draw blood from. He was on oxygen, had a tube down his throat for a little bit (that was taken out right before he was wheeled up to the room), had a heart monitor on, a pulse/ox monitor, a drain from the incision site, still had his dialysis catheter in, another catheter to monitor the amount and color of urine he was producing, and compression wraps on his legs to help keep the blood flowing and to prevent bloods. There was also an i.v. in one of his hands. He had a lot going in to and out of his body for the first 72 hours.

Our time in the hospital was spent watching movies, reading, walking the halls, trying to eat and trying not to make him laugh. Who knew that a 10 inch incision would hurt when you laugh? :) We found out just how much when we got a call from my sister, who was watching the kids at our house while we were on our mini vacation. My brother-in-law, Quinn, was watching the kids while Abby (that awesome sister I mentioned) was at work. I am not a story teller, so this won't be as funny as if they told it, but I will try.

Imagine, if you will, Chloe and Konnor sitting quietly (ha!) eating lunch. Quinn runs to the restroom for 5 minutes (tops) and chaos ensues while he is otherwise preoccupied. He thought he was safe to leave the kids alone for that amount of time. Again, I say HA! Not these two. Chloe found a magic marker in Drake's room and proceeded to color on everything she could reach. The final count on what she drew on was : herself, Konnor, both their beds, the ENTIRE living room light switch, the walls in the living room, their dog, Pepper, and the siding outside. This all took place in under 5 minutes! How could this happen in such a short amount of time? Not a clue, but if you are wondering if you want kids, come on over and watch our kids for while and if you survive, you are ready:) If not, well, wait until the Marker Incident of 2014 is out of your mind or is at least funny. We laughed the entire time Abby was telling us, cry laughing, in fact. Chloe would have done that if we were home. In fact, she has, just not with a magic marker and not on the white parts of a dog. I have no doubt that Pepper still avoids Chloe for that reason. We had a great laugh about it and then had to tell the nurses why we were laughing so hard and were then known as the room whose kids drew on everything with a magic marker.

That happened on Tuesday and the rest of the week we walked the halls to get Lot up and moving and for a change of scenery. Lot was by far the youngest person there. We got some interesting looks from other patients since he was so much younger. The entire floor was the transplant floor.

Our stay was not without bumps though. The kidney was working like a champ. All of the numbers that were high when we went in started to come down to within the acceptable range. On the 23rd, we ended up in the E.R. Lot was having some unexplained and unknown pain. After a battery of tests and only 4 hours in the E.R., it was determined that the pain came from the stent that went from the new kidney to his bladder. It was pinching somewhere and unfortunately, there was nothing they could do. That stent needed to stay in until January 12th.

We were cleared to come home on Christmas Eve. We did not tell the kids, who were at my parents house since school was out for the break. We left right after Lot had his blood work done and made it home by noon. I dropped Lot and all are stuff off at home and then went out Christmas shopping. We were not prepared at all! It is also not fun to be out at that time and then have to wrap everything. We usually do all that before and then just have to wait for the kids to go to sleep and then drag it all out. Lot was incredibly tired and was only able to supervise the wrapping, but he was home, on his way to being healthy, and alive, so I didn't mind.

We surprised the kids and had a great Christmas. We didn't care what we got. We had each other and enjoyed watching the kids open their things. We received the best gift we could have ever asked for. The timing was not the best, but looking back at what we did and went through, there really is no good time to have a transplant. Never having to have one would have been the best scenario, but that it not what happened and I am okay with that. We have learned much and are still going through situations related to the transplant. It is a part of our lives and as weird as it seems, I can't think of anything else I would rather go through with Lot and our small family. If it was not this, it would be something else.

This is becoming a very long post, so I will try to wrap it up. The kidney is still functioning extremely well. There have been no infections or rejection episodes. Lot has to have blood draws every other week along with every other week appointments. This is down from blood draws twice a week and appointments once a week. His cholesterol is elevated, so he has been put on medications to see if that helps to lower the numbers. His glucose levels are not coming down and part of that is the life long medications he is on. Since the glucose is not coming down, he has been diagnosed as pre-diabetic and has a meter to check his blood sugar several times a day. He stays away from sugar as best he can and eats a low carb diet. The numbers fluctuate, but in the process of doing this, he is loosing more weight and walking more and just being more active in general.

Lot has a big pill box that he fills on a weekly basis and has alarms on his phone to remind him to take the medications. The immunosuppressant drugs have to be taken 12 hours apart and the rest, there is not much of a leeway on the time they can be taken. There are some that interact in a bad way, so timing is important. The incisions have all healed and the bruises have disappeared. Life has returned to a new normal.

I look back on what we have done and gone through the last 2+ years and I don't know how we did it some days. There were great days and not so great days. That is just the way it goes. We have had countless prayers said on our behalf, numerous blessings received, new friends made, experiences to tell and no way to pay it forward. We have been blessed beyond measure. Our Father in Heaven is VERY mindful of us and wants us to do our best and when we stumble, He is there to pick us up, dust us off, and send us on a new path. That path will not be all roses and happy. The roses have thorns and I have 2 left feet:) But the roses smell great and Lot doesn't mind if I step on his feet.

The past 2 years have been a major trial. I wish I could know that it was over and we could move on to something else. This is going to be an ongoing trial, but it is so much easier to handle now. Through continued prayers that we say and that are said on our behalf, we have gotten through the worst of it. We are happy and healthy. What more could you ask for?

I hope this love boat ride lasts for a long time. I am looking forward to sitting back and being able to appreciate all that is around us and take time for us. There are other scary rides in this amusement park that is our life, but we will stay away from those and maybe get on the Ferris wheel when the boat ride ends.

Reflection, Final Chapter

Confused? Read Part 1 and Part 2.

In September, we had our family pictures taken. We have been wanting to do a superhero theme for a few years, but never got around to finding or making shirts. We found shirts for Lot, Drake, and Konnor and I made shirts for Chloe and I.

We were not thinking about the past year when we used this theme. It hadn't even come up until after I posted the pictures on here. We have been compared to and called superheros this year. Friends have been in awe of us and wonder how we do it all and still remain positive. I can't tell you how we have done that because I am not sure myself. I guess it is just the fact that our energy would be completely wasted to be negative about it. There is nothing we can do that we have not done already. Our future with Lot is dependent on a not-yet-known selfless person who is willing to give up a kidney.

There have been more days than I can count that I have been sick of it all. I am tired of all the beeps from the machine, making sure someone is home when a delivery is made, having boxes everywhere, going to Walgreen's on what seems to be a weekly basis, doctor appointments, modifying meals to make them fit into the dietary restrictions, putting up with high and mighty doctors, and not being able to be away from home after 8 so that Lot can get hooked up to his machine and off of it at a good hour the next day. It is difficult for him to run errands when there is 3000mL of fluid sloshing around in him (Bonus! He just found out this morning that if he does not turn off the machine in the morning, he can hook up to it and have the machine drain everything out instead of doing it manually with a drain bag).

While the past year has been difficult and stressful, and I WOULD NOT do it over again, we are where we need to be and going through the things we have been asked to. This life is a test and our test is totally different from yours. It is not true/false, fill-in-the-blank, or even multiple choice. It is a series of short and long essays. (I have always hated essay questions, by the way). What is a hard question for some, is an easy answer for others. I like to think that we are currently writing one of our hard essays and that by the end, we will have it figured out and an intelligent answer written, that the Teacher will deem correct, and we will move on to the next page of questions.

It has been such a hard, trying year and we are still writing our essay. Instead of all doom and gloom, there have been little, and some not-so-little rays of hope and sunshine in our lives. There is a new shed, which cleared a ton of stuff out of the house, a deep freeze that I thought we would have trouble keeping full, and thanks to some great sales, it is always full. The kids have been able to see both parents help around the house and free to help them learn how to ride bikes, write their name, and say new words. I have been very blessed to start a job that I love and Lot is enjoying being home and having one-on-one time with the kids.

I hope we get an 'A' on our test, but until we find out, we will try to enjoy our ride on the roller coaster that has become our life and scream and laugh when we need too:)

Reflection Part 2

Part 1 here.

So, we ended with the desert mirage imagery last time. Now it is on to some good news.

Over the past year, Lot and I have been looking for employment. We needed something that would work around the appointments and eventual transplant, that did not require Sunday work, and was an all around good place to work. We finally found it too! I got on the LDS jobs site a few weeks ago and was scrolling through all the new stuff and happened upon a job that I was well qualified for, was part time, no Sundays, and I am still home before Drake gets out of school. I put in an application, hoping, but not too hard, that they would like what they saw.

They did! I am now working at Melaleuca in the home office cafeteria. I work 6-1 Monday through Thursday. I am the primary prep person (I cut a ton of veggies, make various salads, portion several kinds of dressings, etc) and delivery driver. There are 4 other sites in Idaho Falls that can order a meal from the main cafeteria. That food is packed in the appropriate tote and I take it to the facility from 10:30-11:30. When I get back from the deliveries, I finish the prep work and busy with the 3 sinks full of dishes. Once 1 o'clock hits, I am clocking out and on my my home. I am not able to stay up later anymore. 9 o'clock it about my limit:) Even on my days off, I am up early, but then I can get ready for the day, and write up these posts without interruption. I enjoy the work and ALL the people I work with. One of the perks is a free meal every day. I don't have to make anything to take with me, I just have to make a hard decision everyday on what I want. All of the food is great and there is a huge variety to choose from.


Lot is still able to make it to his appointments, he just needs to take Konnor with him once a month when he gets his blood drawn. Those are always in the morning during the first few days of the month and, fortunately, don't last too long and Konnor can be in the stroller the whole time. Lot also now does all the grocery shopping, Our normal grocery day is Monday mornings, after Chloe gets dropped off at preschool. I now know how Lot felt when he was working and came home to new things in the fridge and cupboards. It is kinda nice when I need a snack and to go through the kitchen and not know what is there.

The proverbial weight has been lifted from our shoulders knowing that the financial situation has eased and that if we want to go on a date night once or twice a month, we can do that, as well as bolster our savings account and pay off debt faster. I can't describe how good it feels to finally have a decent-to-us amount leftover after the bills are paid for the month.

We have been looked out for this year, both on earth and from heaven and I know that that will never change,


Final Chapter coming soon.

Reflections Part 1

It has now been a full year today since we started on our Roller Coaster Ride of Uncertainty.

One year ago today, I was just waking up on a couch in the ICU at Bingham Memorial, Lot had had his first of many very painful cycles of dialysis, the kids started the shuffling to anyone willing to watch them for hours on end, we still did not (and still have no idea, one year later) know what caused Lot's knee to swell to 4 times the size it should have, and one year ago today, our lives, simply put, were turned upside down and ended as we know it.

We will never again be able to just up and go somewhere overnight. Not that we ever really did that, but now, we have to take into consideration all the dialyzing supplies that need to come with us, the machine, a box of dialysate for each night we will be gone, a cartridge that contains all the tubing for each night, a 5 gallon gas can (you get funny looks taking that through a hotel lobby, by the way), a drain bag, sanitizer, masks, caps for Lot and the machine ends, and a small suitcase full of medicines and supplements. It takes up a ton of room, (not to mention the fact that those boxes of dialysate are very heavy!), so while we have traveled and stayed overnight a handful of times, it is easier to stay home and bask in the glory that is 3 noisy kids, all hungry right after they eat a meal, and just watch them as they throw a bucket of Legos up in the air and not care where they land as long as there is a path to the beds.

We try do more things at home, like the Friday night movie where we pull out the air mattress and the kids lay on it during the movie. The popcorn does not get pulled out as often since Konnor tends to spill his just filled bowl of it and then we have to get the fought-over vacuum out to clean it up and there are tears shed when a certain little boy does not get to use the vacuum.

While we have tried to shelter the kids from the brunt of the ride, it has had an effect on them. They are all more whiny than they were a year ago. It is difficult for them to understand why we can't just go to a store and buy something for them (not that we would have before, but now, it is harder to do), or why we don't eat out often. It is hard to explain why Daddy can't eat at certain places or eat certain things. They have adjusted fairly well, though, in my opinion. Drake has had some anger issues, at home and at school, Chloe's ears don't work as well as they did, and Konnor is just along for the ride at the moment. He has had some separation issues, but calms down fast. He has become shy the past year, even around family he sees often.

The kids seem to like having both of us home. Drake and Chloe are both doing really well in school. Drake's reading and math scores are high, Chloe can now recognize letters and numbers, write her name, and the numbers 1-10. Konnor's vocabulary has exploded and I know that there is no way that I can list all the words he can say. It is an average of 1 new word a day right now. The current favorite is bird.

Lot is still tired a good portion of the day and is sick of the dialysis every night. He is ready for it to be over and done with. We are still waiting on some friends and family to be tested and for Lot to lose a little more weight. Made much harder now that he is giving himself a testosterone shot every 3 weeks. It has caused him to gain quite a bit of muscle and extremely difficult to lose any additional weight. I feel like we are walking in the desert and that it is a never ending journey. Are we seeing a mirage or is that really the end of the desert? The transplant is so close, but so far away at the same time.

Stay tuned for part 2!

Stupid School

We are now up in the mornings to get 2 kids to school. Because of this, I am able to watch the national morning shows. On Good Morning America this morning, they showed a video from an American Idol singer's newest single. Well, it was written for us! If we did not have to get up for school, I would have missed this video. I am sure that I would have heard it on the radio, but I am glad that I was able to watch it this morning.

I back has not been getting any better, it is really bad in the mornings, so we are going to a chiropractor today (they have a special going on that is affordable for us right now). I am praying that that works and I can look down, get out of bed, and walk without pain.

Back to the video, it is called Overcome and made my cry. I can't find the video, but here is one that has the lyrics.

New kidney time!

Well, not quite yet. Lot has now lost enough weight to be bumped up to stage 1 status instead of 7. Once the transplant center receives the information, Lot will be eligible for a cadaveric donor kidney. Believe me, once that happens, I will shout from the roof and everyone will know about that.

I guess we have reached the point where we need to now seriously consider our options on housing while in Utah for a month. It may be less than that, but I think it would be wise to plan on a month and if it is less time, great!

Now we are in a different waiting game. If we get the call we have to drop everything and get our butts to Utah pronto. I just hope that is not in the middle of the night. Lot would have to go down by himself and I would follow the next morning after the kids have been taken care of. It is kinds scary but a happy scary. Kinda like when, for the ladies, you go into labor and you know it is going to painful and possibly long, but in the end, you have a sweet little addition to your family.

We continue to pray that everything will work out and that we can have patience with the timing and each other. In the meantime, we have a hard time singing and listening to songs because there seems to be songs and verses from songs that just seem to jump out at us and be that certain thing that we needed to hear. Every Sunday, and I mean every Sunday, there is at least one song that has something in it that says to hold on, things will work out or that our burdens will be lighter or that there are people just waiting to help out.

Some days continue to be much harder that others. It seems that the quote of the past 2 years has been

Well, not this version, but we are a Star Wars family (and there is not a Green Lantern version), so this is the one that I picked. As annoying as this saying has gotten, it is true. It is easier to be happy. Our lives flow much smoother when we are calm and happy. There are days when calm and happy is the exact opposite of the atmosphere in our home, but we try to do better and that is all that we can do.

So, on that note, let's hope that when we are needed in Utah my house is not a disaster zone:)

"Be not afraid, only believe" (Mark 5:36)

In all honesty, I have been putting off this post for a while, but it is something that I think you need to know and that I need a record of in the trying times to come, I have come up with so many excuses on why I should write this post later, the only valid and real reason was when all the kids were sick over the weekend. I don't have the energy, it is just so hot outside, I would rather play a game or watch a movie or read a book are just that, excuses.

I have never been a person that is good with words. I hated Speech class in high school and dreaded getting up to do oral reports for English. Talks are not the most welcome at church and I would rather teach the younger classes as opposed to any of the adult classes. I just do not care for public speaking of any kind that is in even a somewhat formal situation. Lot is much better at that. He is a born teacher and knows just what to say and how to say it. He is a great scriptorian (spell check says that is wrong but in unwilling to give me a good substitute) and knows so many stories. I have a hard time with all of it and struggle to understand and comprehend what it is I am reading. Anyway, what I am trying to get at is this, I hope that I can put down the words swirling around in my head and if all it helps is me to have it down, I am just fine with that.

I had no clue that when I turned 29 five days before the ESRD (end-stage renal disease) diagnosis, that this year would be the hardest of my short-ish life. It has been a very trying and overwhelming year and even as I type this, I have a knot in my throat and tears in my eyes. I don't think I will ever be to a point where I can talk about this year without that happening. It has been hard. Very hard. It is so difficult to remember that we are going through a trial that was picked just for us to go through and that if we just have faith, we will be better people for it.

On the last Sunday in June, the 30th, to be exact, mine and Lot's names were on the program to speak in church. We were given our topics around noon the Friday before. While it was short notice, it was an inspired choice of topic and of us speaking. I know that anyone can talk about gratitude and that our blessings will come in time, I think that Lot and I have special circumstances that allow us to know about gratitude and blessings more than some.

I am sure that Lot felt the same way as I did, that we have never had such an easy time of preparing talks for Sacrament meeting. We did not have to pull from many outside sources to supplement the talks that we were given to speak about. If you get the chance, please read The Divine Gift of Gratitude by President Monson given at the October 2010 LDS General Conference and An High Priest of Good Things to Come by Elder Holland given at the October 1999 General Conference.

President Monson talks about the story of the 10 lepers who were divinely healed, but only one chose to gives thanks to Christ for healing him. He asks if we remember to give thanks for the blessings that we receive. Do we? I think that when our lives are good and there are no major trials or hurdles to jump over, we do give thanks. It is in the hard times that we forget that, every single day, we are given blessings, no matter how great or small. Trials are after all, blessings in disguise. It may be years before we realize the blessings we received in such difficult times.

He goes on to say that we have all had times when our focus is on what we lack rather than on what our blessings are. Regardless of our circumstances, each of us has so much for which to be grateful for if we will just pause and think  about them. Our focus has so much been getting to the next appointment, making sure that nothing interferes with those appointments, how are we going to pay our bills with no income, trying to arrange childcare, should one of us start work even though we would have to leave when the transplant takes place, should Lot go back to school, what should he major in, what are we going to do if we get a call in the middle of the night to get down to Utah as soon as we can. Most of these are questions that we just don't have the answers to. And that is very tough and stressful. But even with all of this weighing on our hearts and minds, we still have a home, our kids are able to be with us all the time, we have sufficient food on the table, we have family and friends surrounding us, willing and able to take the kids whenever it is needed, no bills have been late or skipped altogether, and the biggest one, Lot is still here with us and with a little more energy to do those things that he wants and needs to do.

When the house is a total disaster, the kids are ornery, we have no clue what to make for breakfast/lunch/dinner, when Lot had a bad night with dialysis, when all it seems I have done that day is yell at the kids, when we get a huge medical bill in the mail, when urgent call to the transplant center go unanswered and returned, there are still good things about the day. At least we have a home with which the kids can make a mess in (and learn to clean it up properly), they will not be kids forever (and some days, that is a huge relief), we have food in the house, we just really do not know what to make (chicken nuggets, corn dogs, and grapes have been eaten en mass in this house), the bills will get paid one way or the other, and once we are able to get through to the transplant center, issues get resolved. 

"Most human beings have an almost infinite capacity for taking things for granted." - Aldous Huxley

It seems that the things that most often gets taken for granted are those people that deserve our gratitude. We never know how soon it will be too late. There is no greater felling in the world than to know that a person you though you were going to lose to a incurable disease, is going to be around for a long time to come. If we reach deep enough and look hard enough, we will be able to feel and recognize just how much we have been given.

Elder Holland says that "...some blessings come soon, some come late, and some don't come until heaven...but they will come. There is help. There is happiness. There really is a light at the end of the tunnel. This light is the Light of the World, the very Son of God Himself. To any that may be struggling to see that light and find hope, Hold on. Keep trying. God loved you. Things will improve. Even if you cannot always see that silver lining on your clouds, God can, He is the very source of the light you seek. He does love you and He knows your fears. He hears your prayers. He is your Heavenly Father, and surely He matches with His own, the tears His children shed."

Those are lines taken from Elder Holland's talk and there is no way that I could have said it any better. He is always there for us, especially in our darkest, most trying times. He carries us and lifts us up, always. We just to remember that. We are never alone. There will always be Someone there that cares and wants to help lift the burden we carry, if we but ask and have faith.

In the most recent Ensign (July 2013), there was an article written by Elder Larry Gibbons of the Seventy titled, A Time For Faith Not Fear. I was having an especially hard day a few weeks ago, although I can not remember why, and I opened up the magazine and started to read through it. This article is about half way through. You know that feeling that someone giving a talk is talking to just you or that the music you happen to be listening to just hits you in a certain way that you can't help but think that you were supposed to be there that day to listen to that talk or hear that music? I feel that way quite a bit. There are several hymns and songs on the radio that I have a hard time listening to because they were played in the weeks after the ESRD diagnosis and they were just what I needed at that moment. Anyway, this article was one of those times that I felt that it was there just for me to read and, ultimately, cry over. It is humbling and heart warming to know that we are watched over and lead to things that will uplift us and help our situation seem not so bad and that we will overcome these trials for the better.

When the night is dark and the clouds are thick, we have an opportunity to put our hand in the Lord's hand and rely on Him to help us through. It is always darkest before the light, right? Although our levels of darkness may differ, there is a light for all of us. One reason we are here on this earth is to strengthen our faith and difficult, dark days are necessary and give us a chance to build our faith.
  
 Trials and difficulties are a necessary part of life and not a sign that the Lord has forgotten us or is displeased with us. Life is a test and not a single one of us has the same test. We are given the free agency to choose what answer we are going to put down. I think our test is full of essay questions and sometimes we expect that the questions should be true or false. There are many ways to arrive at the correct answer and we have been given a great gift call agency and faith to use on our tests. The Atonement is for more than just a forgiveness of sins. It is there to comfort us and give us a sure knowledge that there is Someone that has gone through the pain that we are experiencing and He the only one that knows exactly what we are going through.

Asking for help is hard to do, but that is all that we need to do, pray for help and then get going. The answers to our prayers and problems will come as we act. We also need to be patient; we are have a different watch than our Father in Heaven. His watch has so many dials and gizmos on it. Our watch is good for only telling the time, nothing more. His time will not be the same as ours. We may not get an answer for years, but if we have faith that everything will work out and work for it, blessings and answers will come. From our experience, the answers will be made clear through other people.

I am thankful everyday that Lot is here with us on this earth and not looking down on us from heaven. As hard, and at times, as unwelcome as, this trial is, I am humbled that the Lord knows that we need to go through this for us and that He is trusting us to learn what we need to learn.

There are so many times that I just want to crawl under the covers and not face the day. It happens more than you will ever know, but then what kind of example would that be to Lot? To the kids? To anyone? Lot is the one that is tethered to that machine 13 hours a day. He is the one that has to remember to take all those medications and go to those appointments by himself. He is the one in pain and just down right exhausted some days. I am just an observer of all this. I can't and don't know what it feels like to have a tube sticking out of my gut and knowing that if I don't do as the doctors have asked, that I will leave a family without a husband, father, son, brother. I am just an observer and as much as I want to take away the pain and frustration, I can't. That is not my burden to bear. I can set the machine up for him, pick up medications, get a bottle of water for him late at night, let him sleep in or take a much needed nap, but I cannot go through what Lot is going through.

The kids know that daddy needs a new kidney and we that are waiting for one. They love to help push the buttons on the machine and play with all the boxes we have lying around. This is hard on them as well, to have to work around doctor appointments and having to be a little gentler with Lot. It is hard for them to understand and for us to explain exactly what is happening. When they are older, Drake is probably going to be the only one to remember even a little bit of what is going on in our family in 2013. Chloe and Konnor will not remember. It will just be stories to them. I am grateful that they will be spared the worry and anxiousness of all this.

As hard as it is to put our lives in someones else's hands, and in Lot's case, that is literal, that is what we have been asked to do. We will continue to watch our little faith seeds grow and our story unfold. Thank you for being there for us, supporting us, checking on us, and being answers to our prayers. Someday, hopefully sooner rather than later, we can be the answer to a heartfelt prayer.

Good News!

We received a letter today that was not a bill, junk, or a request for more information. It was about the donor listing for Lot. As of June 28, 2013, Lot has been placed on the cadaveric (deceased) donor list. This is just in case a live donor does not match up. This way, if that happens, Lot will have time accrued on the national registry. It is a seniority process. Whoever has accrued the most time, gets first chance for a donor. It is an average of 2-4 years to wait for a donor that matches Lot.

The donor process, living and cadaveric, is anonymous. Even if I were to be able to donate a kidney to Lot, they would not tell him anything. I would have to do it. It is the same with other family members. All we will know is that a living donor was matched and to prepare for the transplant.

While we hope and pray that a living donor is found soon, we also realize that we are on the Lord's time, not ours. We have to take a big leap of faith and trust that we will land on solid ground, better than before.

I have been running a few things through my head the last month or so and in addition to giving a talk last Sunday on gratitude and reading an article in the July 2013 Ensign, I am trying to put down in a post how we have dealt with this huge trial thrust upon us. I am only telling you this because now I am being held accountable by all of you to get it written. It may take me a few days, maybe a week, before the post goes live. It may involve tears, but the happy ones. And probably no pictures, even though posts, especially long posts, without pictures bug me to no end:)

Living Donor Process

We received a ton of information yesterday. We have done some research so it was not as overwhelming as it could have been. Because there is so much information, I will be splitting it up into a few posts. I thought I would start with the one that all of you really want to read it about, the living donation process, which is long and more involved that the process is for Lot.

First and foremost, the donor has to be very healthy and they prefer between the ages of 20 and 60. There are quite a few conditions that will exclude you from being a donor:

• NO high blood pressure
• NO diabetes
• NO heart problems
• NO cancer, even if it is in remission
• NO frequent infections (UTI's, ulcers, etc.)
• NO kidney stones
• NO smoking, drugs, or alcohol use
• Must be psychologically stable
• Have a BMI less than 32

You will not be able to participate in any high risk behaviors after the donation (BASE jumping, sky diving, etc). This is due to the fact that when there is a traumatic injury to your body, no matter where it is, the kidneys are the 1st to shut down. With only one kidney, the risk that you will have to go on dialysis for kidney failure is just too great a risk to make for an adrenaline rush. But don't worry, Lot will be under the same restrictions and more post transplant. He should avoid high contact sports where he could get hit in the hip area as that is where the transplanted kidney will sit.

There are 5 steps to becoming a viable kidney donor.

First, you will need to call our transplant services donor assistant. She will do an initial screening over the phone that should take about 20 minutes. She will give you more information during this call on how to  donate the blood for a kidney function test and blood pressure checks (3) by your doctor. These results will be sent to the donor assistant. If all these tests come out well, you move to the second step.

Second, there will be quite a few labs that will have to be preformed. There will be vials and vials of blood taken (Lot had 14 taken yesterday), which includes a creatine (kidney function) test a 24 hour urine analysis (you collect your pee in a container than needs to be refrigerated for 24 hours).

The third step is the determining factor if you can donate a kidney to Lot. This is where they do the authorization for compatibility tests.You have to have a B or O blood type with low anti-bodies that match Lot's. This test takes 2 weeks to get the results back, so if you are serious about donating, you CAN NOT drag your feet. As soon as a potential match is found, everyone else that wants to donate is put on hold until the 1st person is cleared or denied for donation.

Fourth, the potential donor goes to InterMountain Medical Center and has 2 days of tests and talking to everyone on the transplant team (6-7 people). The first day is what we did yesterday with talking to the team to make sure we are ready for a transplant and what to expect before, during, and after as well as more blood drawn. The second day is more tests, heart stress tests, CAT scans, ultrasounds, etc. Just a ton of tests. You will get to break for lunch and the hospital has a very big, very good cafeteria. It is not the stereotypical bad hospital food. They even have an ice cream bar with Farr's ice cream.

The last step is the donation itself. Once you have been declared a match, we are notified that there is a live donor and the surgery will be scheduled during regular hours. There is a risk that the surgery will get bumped for any emergency surgeries or cadaveric donor transplants. I am really hoping that this does not happen as that would be a wasted trip to Utah for us and the donor.

This process takes 3-4 months if everything goes smoothly. Lot needs to get to 107-109 kilos before he can be put on the cadaveric donor list and have a transplant. He is at 115 right now. Unfortunately, he has to give up his love for chocolate milk and whole wheat pasta and bread. He has to have white bread, pasta and rice. Which means we all will be eating that which is a major bummer because we love whole wheat pasta and brown rice more than the white.

I guess I should also state that there is no cost to the donor. Our insurance, along with Inter Mountain Medical Center, pick up the costs. I am not for sure about the first stage of testing, but everything after that is covered. You will have to pay for travel, food, and lodging to and from Utah though.

Now, if you are still with me through all of that, if you would like to begin the process of being tested, please contact us through email, calls, or texts and we will get you the number of our transplant services donor assistant and she can walk you through the process of what you will need to do. You will become very familiar with her as you will be running everything though her first.

A line keeps running through my head from The Hunger Games: "May the odds be ever in your favor."If all goes smooth, by the end of the year, our roller coaster ride will come to an end and we can hop on the smooth tunnel of love ride and sail off with only a small ripple in the water every now and then.

Updates

It has been kinda quiet around here for the last little bit, but that is also because we were not able to be in our home for over a week due to bathroom renovations. I have been slow to get back on the computer and check anything.

The bathroom is coming along, I would post some pictures, but I can't find the memory card converter. Just imagine that a tub in is, sheet rock is up and taped and a fan in on the floor, drying the mud so that texture can be applied tonight. Oh, and a floor is in, but covered with paper so that is does not get too dirty. It looks like wood, but is a very thick vinyl product that is used commercially. We lucked out when we bought it. We really liked the look of this one, but learned that it should not have been put where it was, because it is a commercial product. After some checking, the vinyl was left over from a job. We were given an awesome price for it and because there were some scuffs on it (probably dirt, they are gone now) we were given a little more. We have enough in fact, to do the laundry room floor as well. The best part of  the floor, other than the price, is that even though it looks like wood, it is completely smooth, so it will be very easy to clean.

We will be painting tomorrow and Friday and then we can start to move things back in. We had to order a vanity, but that should be here by the 19th (Lot's birthday!). Everything else is sitting in the sewing room or waiting to be picked up. And that is that for a bathroom update.

Now for the kidney side of the update.

Lot has been doing much better sleeping through the dialysis. He has had a few low drain volume alarms that I have had to wake him up for. All he has to do is roll over so that the catheter can finish sucking out the dialysate. He usually goes right back to sleep.

One thing that Lot has really struggled with is the arthritis flair ups. He was taken off Humira back in January and that controlled the psoriasis and the psoriatic rheumatoid arthritis. His knees and ankles have been bothering him so much that he has a hard time walking and can only stand for short periods of time. We have seen his dermatologist and he is working with the nephrologists get him on something that will not hurt the kidneys nor be taken out with the dialysis. We are just waiting to hear what is decided. We should know by Thursday afternoon. Lot is also going to see an orthopedist about his knee. His knee has been really swollen, just like it was in January when all of this started. At that time, the swelling went down with dialysis and Lot was on Humira. He is still doing dialysis every night, but is not taking anything for the arthritis.

Because of the weight restrictions and because Lot is not able to stand for long periods, he is not able to work. He has applied, and was accepted for disability, but it does not go into effect until August and even then, it is not quite enough to pay the bills. So, I am trying to find something that I can do that still allows me to be home, because I am the primary caregiver, but also pays a decent wage to cover the rest of the bills and various other expenses that come up with kids. A tall order, I know, but I will find something. I am not cut out for a phone job. I tried that right out of high school and it is not for me. I have thought about making and selling stuffed animals, but I have not idea what to charge and if there is even a market for them.

As you can imagine, Lot has a ton of down time. He has contemplated going back to school, but does not know what he should major in that would still be relevant and pay a living wage when he graduates.

We are watching the mail for that packet of papers from InterMountain Medical Center in Murray so that we can start the transplant process.

Oh, one last update, that has nothing to do with kidney's, bathrooms, or jobs. Remember when we planted grass last year? Well, it is still coming up! (A lot of rocks appeared as well, and as soon as the wind dies down and the sun decides to warm us up a little bit, I will be out there raking them up.) There is one bigger area that already needs to be mowed, so much grass took root. More will need to be planted to fill in a few spots. but it is looking good! I can't wait until all the dirt is done and we have all grass. It is going to be so nice:)

Bubble Burst Update

I think quite a few people misunderstood when I stated how much we have to pay. The $250K for the transplant is with or without insurance. We are responsible for 20% of that ($50K). Because of the cost (and people want money) a transplant WILL NOT be considered until insurance is in place, if it wasn't already. We were also given wrong information and the $250K is a one time cost. The anti-rejection meds are not going to be cheap, nor are all of the follow-up appointments that will take place (not just for the doctor's visit, but hotel costs, gas, and food to Utah).

3 years post transplant, Medicare ends. After that, we are on our own to find insurance that will accept someone with with a very costly pre-existing condition. We are not the first ones to go through this situation, so there are programs out there that will help us pay for these costs as long as Lot is alive. Until we reach that point, we will not be given full information on those programs.

We are looking into all possibilities to help with the all of the very prohibitive costs, but have to wait for a few bills to arrive before that can be processed completely. Then we play another waiting game to see if we even qualify.

We have also had to go to the expense of getting our home ready for dialysis. We have to buy antibacterial soap (one is kept in the shower), hand sanitizer (and we can't refill the pumps as there is a contamination risk and if Lot were to get an infection, it would be VERY bad for him), a cart for all of the supplies to go on, baskets and bins for the supplies to be stored in (the boxes they come in would not stand up to repeated use, not to mention that some of the boxes are far to large to fit on the cart), a ton of paper towels (Lot can't use a bath towel to dry off his exit site because of the risk of infection, and he also uses a paper towel every time he has to hook and unhook from the machine), a 13 gallon garbage can to throw all of the uses supplies into, a gas can for the used dialysate to drain into, bleach to clean the gas can, and numerous over-the-counter medicines:

• Tums that are taken after every meal and larger snack (helps to bind the phosphorus)
• A protein powder (Lot needs 5-6 servings of protein a day)
• Vitamin D3 supplement
• Iron supplements (Can only be ferrous fumerate and is not sold around here, so we have to buy it online)
• Fish oil with 1000mg of omega 3's
• a stool softener because of extra iron and so that nothing pinches the catheter internally
• a renal vitamin that replaces the essential vitamins and minerals that are lost to dialysis (this can't be an over the counter multivitamin as those all have potassium and phosphorus in them)

We have also had to alter our diets to take out potassium and phosphorus rich foods: tomatoes, potatoes (including sweet potatoes), avocado's, nuts, bananas, cows milk, orange juice, tropical fruits, beans, mushrooms, and yogurt. Lot is also on a low sodium diet, so we leave the salt out of quite a few things or reduce the amount that is called for. We had to clean out our cupboards of the food that we bought a few months previous at a case lot sale and start fresh (Our ward was having a food drive at the time, so they got 9 bags of food from us which included a ton of beans and various types of canned tomatoes and higher salt gravies).

The only tomatoes Lot can have have to be the no-salt added, which I can only find at Broulims,which means we have to travel out of Idaho Falls to get them (I checked Winco, Wal-Mart, Smiths, and Albertson's and none carry no-salt added tomatoes). Fortunately for us, Broulims had another case lot sale a few weeks ago, unfortunately, they did not have the no-salt added tomatoes on the sale, but we bought 1/2 a case anyway. We have to buy the name brand of foods that are higher in salt as they have a lower sodium content that the store brands that I usually buy, like gravies and chicken broth.

We are a small family of 5, but we have monthly bills that need to be met and with no income, it is getting increasingly harder to pay those bills. We have and are receiving help to cover these basic needs, but are not sure how much longer that can take place. Our needs are still financial and will be for some time to come.

Bubble Burst

What a difference a day makes!

We learned today that Medicare will only pay 80% of the costs of the bills so far and in the future. So, 20% of $250,000*/year for a transplant (as well a $60,000*/year for dialysis), well, you can do the math. I already did and I am pretty sick to my stomach. (Just in case you don't want to do the math, that is $50,000/year we have to come up with for a transplant and $12,000 for each year Lot is on dialysis. Plus the $10,000 or so from all the procedures from the last 8 weeks) (I am not sure if prescription costs are included in those insane numbers. Right now, we fully pay for all medications, prescription or over-the-counter)

So, if anyone wants to go buy a powerball ticket, and happens to win the 320 million jackpot, would you be ever so kind to share with us?

It is very discouraging that we have to come up with so much money when we are no bringing in any. There seems no job that Lot or I could do that would allow so much time off (looking at 3-4, possibly more, months that Lot can't work and I will have to take care of him full time).

There are programs out there that can help with the 20%, but it is still very discouraging. I have filled out so much paperwork already that to fill out a work history for the last 10 years plus every expense we have (and proof of those expenses) is very daunting and downright overwhelming at this point.

I have reached the "why us" stage. I am not sure if this is a good or bad thing. The amount of money that we have to pay out makes me sick. Even if insurance pays to fix the bathroom, we have to pay the deductible. We also desperately need a new shed and a gate put up across our driveway.

I am just trying to get all of this out, so I do not expect, nor do I really want, these problems solved. I know it will all work out, we have had confirmation of that, but the waiting and not knowing how part is really taking it's toll.

*Cost without insurance. (You can't even talk to a transplant team without insurance, though)

Uplifting

There have been quite a few songs that have lifted me up the last 8 weeks.There have been a few on the radio, but most have been songs sung as church. I have yet to sing a song in church and not be touched by even a few words and sometimes the whole song.

You don't need to watch/listen to all the songs. The lyrics that helped me are listed below the music video.

The first song, is a song by F.U.N., called Carry On:



If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
Sun will come
We will find our way home.

We have felt like sinking stones with the kidney failure diagnosis literally thrust upon us, the mounds and mounds of paperwork to be filled out, and the realization that if Lot does not get dialysis and eventually a transplant, he will die. I would estimate that if we did nothing that fateful morning of January 21st, we would have held a funeral not long after and all of these fundraiser going on would be for funeral expenses and to help us keep our home. It is very sobering to think about, so we try not to. It is pointless to ponder on his mortality as I did insist that Lot go to a doctor and that doctor had the sense to send us to the E.R. where specialist are in place that can better diagnose what was going on. I am forever grateful to the E.R. doctor and his staff that set up appointments for us to see a highly skilled nephrologist and family doctor. I am so thankful that the doctor in urgent care did not brush off what was going on and just sent Lot home with prescription pain medication and orders to let his knee rest. Although that was needed for his knee, he got the rest he needed when he had to stay down after the biopsy and the catheter insertion.

I heard this next song one day while I was running errands while Lot was doing in-center dialysis training. I can remember exactly where I was and where I was headed as I heard it. And I cried. And I laughed. I needed to hear this particular song at that particular moment.My seemingly constant please-help-me-get-though-this prayer was answered.

Keep Your Head Up by Andy Grammer


These lines where the ones that made me cry:

The glow that the sun gives  
Right around sunset  
Helps me realize  
This is just a journey  
Drop your worries  
You are gonna turn out fine.  
Oh, you'll turn out fine.  
Fine, oh, you'll turn out fine.
 
But you gotta keep your head up, oh,  
And you can let your hair down, eh.  
You gotta keep your head up, oh, 
And you can let your hair down, eh.
I know it's hard, know its hard,  
To remember sometimes,  
But you gotta keep your head up, oh,  
And you can let your hair down, eh.

 We are on a journey, and right now, that journey contains a detour to an amusement park for a roller coaster ride. Just as the song says, over and over, we will turn out fine, not matter how hard it is to keep our heads up. It got just a little bit easier yesterday when I opened up that letter saying that Lot had been approved for insurance and it is retroactive to January 1st. It will cover all the bills that have been accruing thus far. There is a premium that we are responsible for, but have received the paperwork to help cover that along with all of the prescriptions.

We just have to remember to keep our heads up.

(Even through a forced bathroom remodel that we are still in the process of figuring out. A claim has been filed and an adjuster has been out to take measurements and photos, but they want photos of the damage behind the tile and under the tile floor, so on Monday, we start the process of gutting our only bathroom with a shower/tub. At least all of the snow is gone (as long as what is coming down right now doesn't stick) so that a dump trailer can be backed up and a window screen taken out so that we don't have to go too far with the contents of the demo-ed bathroom.)

And this one from Josh Groban kinda speaks for itself:




Here is is the whole song, as I can't narrow it down:

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

There is no life - no life without its hunger;
Each restless heart beats so imperfectly;
But when you come and I am filled with wonder,
Sometimes, I think I glimpse eternity.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

You raise me up... To more than I can be.

This whole song speaks to our (means mine and Lot's) relationship with our Father in Heaven and Jesus Christ. We never would have made it this far without Heavenly help and guidance. We have been guided, the doctors have been guided, and friends and family have been guided. The help we have received, that we didn't know we needed sometimes, has been tremendous. We have been lifted up and carried at times by Christ. People has asked how we can be so strong through all of this, and quite honestly, we aren't. Our burdens have been lighter because of Christ and his willingness to take our pain away. He suffered so that we don't have too. He is the only one who knows exactly how we feel and how we felt when we got the diagnosis of total kidney failure. He knows that crushing pain. And He willingly and gladly took that pain from us. That is the part of the Atonement that people tend to forget. It is not just about repenting of sins.He will make our burdens lighter. All we have to do is ask and have patience and faith that He will answer our prayers.

One person in particular, who has spearheaded a lot of the fundraising (I won't say her name here, but she knows who she is), had a bad year last year. I remember her posting at the end of the year that she was glad the year was over and hoped that this year would be better. She started off the year fundraising for us and and said that it is one of the best things she has done. What better way to forget your problems for just a little bit than to help someone else out? And she has. She has been so busy helping us, her family, and her business that I don't know any way she could have done it but with angels on her side. She never grumbled or complained about the amount of work she was doing. I hope to be able to someday be like her and help someone else out the way she has done for us. She will say that she really didn't do anything, but she did. I am sure, in fact, I know, that there are others out there that could have spearheaded the fundraising efforts, but she needed too. We will forever be grateful to her and that she listened to a little promoting that she is needed.

We are gearing up for a big drop on our roller coaster, but this time, we get to put our hands up in air and enjoy the ride!

We're So Excited!

And nervous

and slightly afraid.

You see, we received a letter in the mail today. It was not your typical letter or bill (although we have been getting a lot of those). This particular envelope contained an acceptance letter. An acceptance letter for what you may ask? Nope, neither one of us are going back to school. Not that we want to at this point. Maybe someday. So, what was so special about this letter? Well, it was for insurance for Lot!!!!!!!!!!!!!!!!! 

We are now just waiting for the official card to arrive and then we can start the transplant process. It will probably take a few days to get here. Our awesome social worker now also gets to call all those people that are wanting money from the last 8 weeks of hospital stays, blood draws, ultrasounds, biopsies, and catheter insertion. What fun for her! And all those bills have added up to quite a chunk of change. We don't have an exact figure, but we do know a ballpark figure, and well, I am not going to state here how much it is, just know that it will probably make you sick to see the total. It was quite a shock for us to see the amounts that are being charged for little things.

Anyway, once the transplant team gets the referral, they will send us a packet of papers to fill out, which we will in turn, send back to them. They will then send us a letter stating when we can come and visit them for a few days of tests and thousands of questions. After that, it is another waiting game for a, hopefully, live donor. It may not be until June or so before anything happens. 

Lot went back to work for a few hours today. The first time since January 21st. He is slowly gaining back strength and energy. He now has 3, 2.5 hour cycles with a 4th cycle lasting 2.5-4 hours, instead of 4, 1.5 cycles with a 5th lasting 2 hours. It still works out to be the same amount of time, but the dialysate stays in him longer because the waste products are slow to move into the fluid. Some people move the waste fast, some slow. There is no right or wrong way. Everyone is different. 

They also took him off of tidal. Because Lot was an urgent start for dialysis, they put him on tidal to lessen the drain pain (the suction of the catheter up against internal organs) and to help him heal. Tidal is when they put a certain amount of dialysate in, say 1000mL, but when it comes time to drain, the machine is programed to only look for 750mL so that the catheter is less likely to cause drain pain. It does not get rid of it completely, but it is less. Since Lot is no longer on a tidal, he feels the drain pain more often. But is also depends on how he is laying whether or not he feels it. He has slept through a few. He sleeps in in the mornings and usually has to take a nap at some point during the day. Lot hooks up to the machine around 9 at night and is done around 8 the next morning. It is a long process, but essential to life right now.

It has been a long ride and we are in no way close to the end of it. Perhaps we will always be on this roller coaster ride, but at the moment, we are coasting.

Remember?

Let me just preface this post by saying that this is something that we do not want to ask help for, but we have been counseled to seek out help when we need it and to allow others the opportunity to serve.

We have hit a little hill that needs to be climbed in roller coaster ride.

Perhaps one of you has said to us on occasion, "If there is anything I/we can do to help, let us know." Usually, there has not been anything we could think of that we need help with. Well, now there is. No, no word on the insurance yet, so no transplant news. What we need help with is a forced remodel of sorts.

You see, the previous owners of our home did not install the toilet in the main bathroom correctly. Over time, it has leaked under the tile that was also not installed properly. The tiles under and around the toilet have lifted up enough to cause cracks in the grout and mold to grow up (We had mold mushrooms at one point). We have tried to fix it, but I think we are beyond the point of fixing and need to rip the tile and flooring underneath up, along with a new toilet, and pipes for the sink (as that leaks as well).

(Not our bathroom, but this is what the mushrooms looked like)

Here is were we need the help. Lot is still not able to go to work, so we have no income, and Lot is under a weight restriction for a few more months (no more than 15-20 pounds). We have a little money that we can use for this project, but if anyone is able to help us with the demo and reconstruction, that is another area we could use help. We just want to get the floor as level as we can and put linoleum down to avoid the grout chipping away that we will get with tile. We also need help with this because neither one of us as any clue as how to go about doing all of this the right way.

If there is anyone out there that has connections for a plumber or home improvement store, please let us know. We need to get this taken care of as soon as we can. Konnor has begun to crawl and is very curious about things and puts just about everything that will fit, into his mouth. We need a safe, non-toxic environment for the kids as well as for Lot.

So, there you have it, a way to help us if you want and/or are able to.

Finally finished!!

After about 3 weeks, I have finally finished the pennant banner for our front porch in honor of National Kidney Month, which is the month of March. And just in case you have missed all posts on Facebook, green is the color of kidney awareness, so if you are coming to the fundraiser tomorrow, please wear green!

You will have to forgive the right side for not showing you their true colors, the wind is blowing, in Idaho. I know! It's Idaho, the wind never blows here:) Good thing I made it double sided, huh?

Our bedroom stinks..

like cardboard and it is all because of this:

and these 2, along with the 4 boxes in our closet:

Don't forget about this pile:

And most of the supplies:

And the literal life saving machine:

Lot is up to 2500mL each cycle and there are 5 cycles that are an hour and 51 minutes long each. That bigger line on the left is the line that hooks into his transfer set (the part that is hooked to him).

Dialysis is now every night, for roughly 10-11 hours. He will be going through 3 bags of dialysate each night, which means a case and a half. So, we will have a ton of boxes if anyone needs any. They are really heavy duty boxes, but no handles and most are not very big.

There is a baby gate across our door to help deter a certain little girl from pushing buttons, and boy, does she want to push them!

Our official at-home dialysis ride has begun! We hope it is a very short ride so that we can go ride the transplant ride. We hear it is long, but so worth it!

Tears of Happiness

I figured I better write this post before Saturday and I ruin another pair of contacts due to crying too much.

I have cried a lot the last 27 days. First, it was because we learned that Lot could literally die at any moment due to his lack of kidney function and sky high blood pressure. Then it was because we spent 8 hours in the E.R. and I was scared. Next, it was because we learned that in 2 days, Lot had gone from 9% kidney function to 7% and needed an emergency kidney biopsy to see what exactly he had. Fast forward 5 days and I learned my lesson and wore my glasses for a week because of all the crying. It was also at this time that we learned that he would need to go on dialysis immediately and as soon as insurance cleared (it is pending, but we will still have co-pays, 20% in still a lot of money for us to have to come up with), and we get a referral for the transplant, we will be spending time in Murray, Utah for the countless tests that have to be preformed before they give the go ahead to look for a live donor or be put on the transplant list.

This news scared me. How would we pay for this? Who would take care of the kids while we had to be out of town? What about Lot not being able to work? I had so many thoughts running through my head that the only thing I could do was cry.

And then, I started crying for another reason. When we got home from the appointment and started to prepare for the emergency catheter insertion the next day, I got on Facebook and cried, as I am crying now. My sister and 2 friends had already started to organize a fundraiser to help pay for everything and people were commenting left and right with things that they were willing to give to the silent auction and food and well, everything. A donation page was set up and money has slowly come in through that. There have been a lot of people donating that we know, but even more people that we don't know, that don't know us, asking where they can send donations or money. It is very humbling to know that there are people out there so willing to give to a perfect stranger and his family.

Freezer meals were quickly set up as was a new freezer that now resides in our dining room. Checks have been coming in the mail as well as phone calls just to see how we are holding up. Childcare was quickly taken care of, willingly. So many people want to help us that I wish there was more that I could have available for them do.


If you remember, we had blessings given to us and in those highly personal moments, we were reassured that everything will be all right. That doesn't mean that we won't have those less than stellar moments, but that Lot will continue to have a physical presence in our home for a long time.

Lot is keeping a journal of his thoughts and has given me permission to share things here that he has written. One such entry, titled Prayers, Love, Compassion, in part, reads,

"My wife saying, "I know you are going to get sick of me saying this, but do you need help? How are you feeling?" But what I hear is, "I am here, right beside you and I am not even close to letting you go."

Let me say now that I could never let him go. I hope I die before he does so that I don't have to live without him. This roller coaster ride has made us stronger already, as a forever family. It has been very hard and only by the strength of each other and the prayers of hundreds, if not thousands of people, have we made it this far. There have been days where I have questioned how we have made it through. Some days we struggle. Some days our patience it not what it should be with the kids. Some days we are so tired that everything is funny, even Lot's drain pain (the faces that he pulls are actually kinda hilarious, although I do sorta feel bad for laughing at him). Some days we are in bed by 9. Some days are just better than others, just like with everyone else.

Two weeks ago, sitting in church, a friend was talking about how we should not say "why us?" when we are faced with trials, but should think about what we are supposed to learn from it. Sitting there, I had a great thought. We have not once said or thought, "Why us?" We haven't. This is something that we have been asked to go through, whether it is for our benefit or for others, but I think it is a little bit of both. What are we supposed to learn from this? I don't know yet, but when we figure it out, I will be sure to let everyone know. I do have a sneaking suspicion that this trial is also for those around us; to give them opportunities to serve others and to bring our ward congregation closer together. And it has worked. Everyone had pulled together to help out in whatever way they are capable.

Why us?

Why not us?

I have cried buckets of tears and know that it will not end anytime soon. I have hope that the tears that I will be crying from here on out will be tears of happiness and joy and gratitude and hope.

Video about the fundraiser

Here is a video that someone, I really have no idea who (thank you, by the way), made to help advertise the fundraiser. Please share as much as you can! Here is the direct link to it, if you want to share: http://www.youtube.com/watch?v=TETDypq1Kfo

Diet Changes

I think the hardest part of this roller coaster ride is that they don't allow certain foods to be eaten while riding. No tomatoes and potatoes are the hardest. Nuts are also hard; Lot needs more protein and can have protein bars, but most of them have nuts, so I get to eat the ones that I bought for him.

Spaghetti is our go-to meal on what-are-we-going-to-have-for-dinner-it's-5 nights. It is quick, easy, and more importantly, the kids inhale it AND ask for seconds. We have been wondering if we should research white sauce recipes to find a suitable substitute when we asked our dietician about it. She gave us a recipe for roasted red pepper tomato sauce. We can use it as a spaghetti sauce, marinara sauce, pizza sauce, and/or tomato sauce.

Since I am bound to lose the recipe at some point, I am going to document it here and because there has been at least one request for the recipe and I feel that your life will  not be complete without this awesome recipe:) If Lot is ever allowed to eat unrestricted amounts of tomatoes again, we will still use this sauce; it is THAT good.

Roasted Red Pepper Sauce
Serves 4, serving size 1/4 cup

Ingredients
1/2 cup roasted red peppers (bottled, canned, or make your own)
1/2 tsp minced garlic
1/2 cup tomato sauce, no salt added
2 TBSP olive oil
1 tsp dried Italian seasoning
1/4 tsp red pepper chili flakes, optional

Directions
1. Drain red peppers and measure 1/2 cup.
2. Place peppers and garlic in a food processor or blender and process until smooth.
3. Add the tomato sauce, olive oil, seasoning, and flakes. Process until well blended.
4. Enjoy on pizza, pasta, soup, or chicken.

**May be refrigerated 2-3 days or frozen until ready to use**

Nutrition Facts
Calories: 75     Protein: 0.6g    Carbs: 3g     Fat: 7g     Sodium: 82mg     Potassium: 148mg     Phosphorus: 18mg     Calcium: 17mg

Just for kicks, here is a chart for you to compare the potassium and sodium in red sauces. I am not sure what brand of sauces these all are, but I think they are a general guideline.

Sauce	Serving Size	Potassium mg	Sodium mg
Roasted Red Pepper	¼ cup	148	82
Tomato	¼ cup	226	369
Spaghetti	¼ cup	262	347
Marinara	¼ cup	265	393
Pizza	¼ cup	240	340

***My Notes***

*Could use more veggies, diced carrots, squash, zucchini.

*We used Western Family diced tomatoes, no salt added. The sodium difference is fairly big. For a 1/4 cup of regular tomato sauce, the sodium content is 12% or 280 milligrams. The sodium in the no salt added diced tomatoes is 1% or 20 milligrams for 1/2 cup. I don't think WINCO, our main grocery store, carries the no salt added tomato sauce. I will have to check, but for now, we still an almost full case of the diced tomatoes from a case lot sale. We also like the chunkiness that the diced tomatos have.

*To save time, we did use the bottled roasted red peppers, but did also buy a bag full of red peppers so that I can roast them tomorrow and freeze them for when we need them. I also have plans to can some, but I need quart jars, instructions on how to can, and the time and energy to do it. I also plan to plant some red peppers in our garden this year. Send lots of garden love our way as I have never been successful at growing peppers.

*Lot made the sauce, so I am 100% positive that he added way more than the 1/2 tsp of garlic. We LOVE garlic in our house.

*The sauce was a little spicy for me, but the kids loved it, so we will leave the red pepper flakes as is.

If you would like to know how to roast your own peppers, you can Google it. I had too. There are a few different ways to do it and you can decide which is best for you. I do want to try roasting them on the grill, though. We also found info on how to roast them using the oven broiler, the burners on a gas oven, and over an open fire.