Long Time in Coming

Dear Austin,
These past couple of months have been really hard, and trying. But you have always endured. You always smile and laugh in the face of adversity. It is amazing. You have taught me so much. To look at life as experiences, and that when I leave this life I want to be rich with them. With the memories of my family. The memories of how my children smelt right after a bath, or how small their hand feels in mine. How great it feels to cuddle with them, and the light in their eye when I make a conscience decision to drop what I am doing and have fun with them. That is really being wealthy.
You have taught me to appreciate things that are small as well as monumental. That we can get through anything. When I feel like I can't take anymore I somehow figure out, by your example, how to do it. I have learned that there is more fight in me than I ever imagined. Thank you for teaching me so much. I now know that life is very short indeed. And that it is okay, since we will always be together, no matter what.
I have a stronger testimony of my Loving Heavenly Father. I am closer to Him. I have greater patience (though I still struggle sometimes). I sometimes feel guilt, since I feel like I have gained so much through this trial. I want you know how sorry I am that you have to go through this and that I would do anything to change it. I would do everything and anything. But I can't, so I can only make everything else the best that I possibly can for you. Thank you so much for all that you do and continue to do for me.
love,
Mom

Jacob and Serenity came to visit us. Ben's brother Jacob came for a quick visit, but his wife Serenity stayed to help us out, thanks Serenity! We had fun on their visit, we went to Venice Beach and just hung out.
Since our town celebrated on Sunday we had Halloween early at our ward trunk-or-treat. Austin was an Astronaut and Emma a bumble-bee. We had such a hard time getting them both into their costumes, it was comical. Ben was a champ though and in the end persuaded them. They had a lot of fun once we were there. Austin loved the games and Emma LOVED the treats. I seemed to clean her up from one she would find another, but in the end it was all good fun. Emma was at first a little confused and could not seem to figure out why everyone was dressed-up. Ben was dressed up as a Dad, I was Hindi, and Serenity was an English "Lady". Everyone was giving me a hard time asking me when I converted to Hindi, and I shot back that it was a one day gig.
We went to the Lombari Pumpkin Patch and the kids had fun munching on caramel apples, and taking a ride on the train. We think that we spotted Kevin from the Backstreet Boys there, actually we are pretty sure it was him. I just mention that since this is the second year in a row that we have spotted a famous person at a pumpkin patch, last year it was Jamie Fox. There were also animals and Emma was able to see one of her beloved cows.
The kids have taken up a new hobby of helping me vacuum, it might take more time but they love it.
Austin is doing well. He is in the third percentile for his height, and he is not growing very much so the odds are high that he will have to take shots for growth hormones. One in the arm, one int he tummy, and one in the leg everyday possibly till he stops growing. Uggh.
They are looking at the likely hood of him having a transplant, and one of his Dr.'s said that she doubts that he will ever be able to get off of dialysis and that a transplant looks to be looming in the future. So we are hoping for a miracle, but planning for a transplant. But don't get me wrong transplants are miracles in themselves, and I just found out I was O+ blood type (the same as Austin) so I have a good chance of being a match. Thank you all for your prayers!

Here we are...

We are in our house! It is great. This is the first time we have been in a house since we have been married, and the first time to have a washer dryer, yard and attached garage. We are thrilled, and the kids love it!

Our first week back my cousin Allison cane and helped us for two weeks. We put the house together and cleaned. I also got to know our new Dr.'s. That has been a struggle. In Spokane they cater to us, here sometimes we have to fight tooth and nail for the simplest things. It is frustrating and I have more than once seriously considered going back to Spokane.

Ben's Mom Diane came down for the next two weeks and that was super helpful. Thanks Mom for coming down! We worked on the house and readied ourselves for Austin's surgery.

Austin had surgery to take down his ostomy, and it went well. My Step-Mom Mindy came down for a week to help out during his stay in the hospital after surgery and when he came home, thanks! That was a hard transition but we were grateful that his surgery went better than planned. He did develop some sort of infection but was fine after some anti-biotics.
My Sister-in-law Stephanie and my Nephew Clayton came to help us for two weeks. Thanks Steph! They were so helpful when Austin had to go back in the hospital. He developed severe hypertension when his clonidine patch fell off and he also had an intestinal infection called C-diff. He was in isolation contact precautions in the hospital for five days, which was interesting. Keeping a two and half year old who is feeling pretty good in a small room for five days is not easy, we were so grateful when we came home!
One of the reasons that he was feeling so good is that he was taken off of the clonidine. Clonidine is a blood pressure medication that inhibits the flight or flight response, keeping the heart rate low as well as helping with blood pressure. It works in the brain and has aggression as a possible side effect. Austin has not been the same little guy since he has been on this. He was very angry, moody, and aggressive at times crying for no reason for hours at a time without provocation. After we took him off of this it was like the old Austin coming back. It was so wonderful!

Steph, Clayton and Emma did so many fun things while they were together. They went to the carousel at the mall, the beach, and to the zoo. My Aunt Becky came up and hung out with Austin when he was in the hospital for C-diff so I could go and see Emma and we could go to the pumpkin patch. Emma and Clayton had a great time going on the corn train ride, and looking at the animals. We were sad when they had to go home. We had so much fun with them!

We are at a key point in Austin's treatment. They are going to try and take him off dialysis and see how it goes. If his levels start to go up they know that he has to be on dialysis and will be ready to have a transplant, if he is okay then it can be postponed. We are still hoping that they will come back, against the odds. In God all things are possible, and we are always hoping for the best no matter how improbable. We will be fasting during this time, and all our friends and family are welcome to join us as we look for guidance, inspiration for us and our Dr.'s, and possibly a miracle. I know that we have asked a lot from all of you, and want to thank you for all your help and the many prayers said on Austin's and our families behalf. We are grateful for our blessings and when times get tough and frustrating it is a comfort to remember that God is in control. And that is a fact. No one else is, and through Him and through our faith He can move mountains, soften Dr.'s hearts, have insurance cover things, give inspiration for difficult decisions, and comfort and understanding to children. In short He is the giver of miracles, and for that I am grateful.

Anyone have an extra kidney laying around?

We received the news of the biopsy today. Austin has 60% permanent damage to his kidneys. The Dr said that he will need a transplant sooner or later. Good news is that Ben or I are pretty good candidates for donating. He will need dialysis 3x a week for the indefinite future. After he gets his ostomy reversed we will hopefully be able to do his dialysis at home while he is sleeping. We will know more when the Dr down at UCLA Children's Hospital evaluates him in a couple of weeks. Hopefully we will be going home on Tuesday to Moses Lake, then go home to California in a couple weeks.
Yep I definitely feel like my world has been turned upside down, and overwhelmed at the prospect that it will stay that way for a while, but I am grateful that 1) Austin is alive, and can at some point, with a lot of hard work, have a normal life 3) The biopsy did not reveal some sort of surprise, or rare disease. 2) That Heavenly Father doesn't give us more than we can handle. If he is giving this to our family then that means we can handle it. This has already brought us closer, and it is my hope that it will continue to do so. The Lord is mindful of this, and has great things in store for Austin. Otherwise why would He work so hard to preserve him? I love my son and really secretly hope that he can have a normal life. I thought it was just a lot to ask that he would live through this, so I didn't want to push my luck asking for more. I am grateful that the Dr has confirmed that he can one day have just that. Normalcy. Thanks everyone for your support, and continued support through all of this. Love!

Today

I have started a new post on here a few times, but since I post daily status updates on Facebook I didn't know what to share. Today however I have a story to tell.

These last couple of days have been hard. Austin was sent back to the PICU to go on meds to control his blood pressure. His pressure was all over the place! 180/120 to 94/78 all with in hours of each other. He is struggling with being here in the PICU, here he is hooked up to monitors and cannot be a mobile as he was over at the Oncology unit we were on previously. There was also talk about going home before we came back to the PICU, so it was hard. But right now things are better, Austin's creatin levels for his kidney's are starting to trend in the right direction, and his lipase levels for his tummy are doing the same.

Today I was in the shower feeling kind of low, and I realized that I was not being a grateful as I could be, or more importantly that I was not feeling the JOY of being grateful and I really needed to have that feeling. I prayed for help, and listed some of my blessings and thanked Heavenly Father for them. I also told Him that I was going to try harder to re-call my blessings when times were tough and to be grateful for them. I felt much better after that, sometimes I can't believe how much my whole attitude and mood can be turned around after I decide to be grateful.

Earlier in the week Ben and I had found a house to rent, but it wasn't going to be available to show until this Saturday. We discussed it and decided that Ben would call and tell them we would take it if the would show it to him today before he left to come up and see us. There are 15 people who booked appointments to see it tomorrow and 30 people have called to ask about it. It has everything we are looking for...and we got it! That's only part of the story though.

Because of all the house stuff Ben was late getting to the airport. He called to tell me that traffic was not moving, I assured him we would work it out. Literally a couple of seconds after he hung up talking to me there was a phone call from Southwest to inform him that his plane would be delayed by an hour! When he called to tell me I just though of how blessed we were. Ben and I (especially Ben) have been praying to find a place, and working really hard on our end so this was a great blessing.

Heavenly Father is so mindful of us. We couldn't plan better if we tried! This was way more than just finding a place to live. This was my Father reaching out to me, telling me that he loves and cares for my little family. He knows when and how I need to be lifted up, and I am so grateful for that. He is showing me when I give Him control, great things come to pass, and the greatest of all is to feel His love.

418 Hours

In the last 19 days Austin has...

• 418 hours on dialysis, and it's starting to work.
• Pediatric Intensive Care for 18 days.
• Held for the first time in 16 days yesterday.
• Received 6 blood transfusions (a lot for a little guy his size)
• Has 6 drips for medication/IV, he was up to 10. Now he can take some orally.
• Walked for the first time in 19 days today.

So here we are. We have officially turned the corner, and Austin is taking leaps and bounds toward recovery. He is peeing, yesterday he peed 25cc's, and the Dr is very pleased. We went outside and played next to a big fountain today during physical therapy, and he took his first wagon ride. He loves to squirt water form a syringe at everyone, especially the nurses. He can be quiet fun. He can also have hard times. It is really hard to have to be the bad guy and make him do his Physical Therapy, and take his oral medication, and hold onto him when they have to give him a spit bath (which he does not like), or hook him up to stuff. But in the end it is to reach our goal: going home. No matter what is going on, I have already told myself that I will be okay with it as long as we get to take our little boy home.
We are continuously blessed, from Ben's work, to the support of our family and friends. It is really neat how some of these blessings have been coming to be after years of what seems like thoughtful planning of a truly thoughtful and loving Heavenly Father. I can only describe some of the moments I have experienced as soul expanding, and have grown closer to my Father.
Ben is starting a new job on Monday, working for Boston Scientific. It was a hard choice to leave Amgen. Ben accepted the offer right at the start of our vacation. When all of hospital stuff started to happen Amgen did offer to take Ben back. But in the long run we think that this new job will be better for our family. We will be moving about an hour north of where we currently live to Valencia/Santa Clarita area some time in the future, we are hoping to move before we bring Austin and Emma down but we will have to see.
This has been a perspective changing experience so far, bringing really important things sharply into focus. I love my family, and am very grateful to be with them for all eternity. I am grateful for a loving Heavenly Father that provides us with everything, including our beautiful and wonderful children. I know that He has a plan for me, and that when I try to heed to that plan I am happier. I know that having a grateful heart is truly a treasure to behold bringing happiness and peace a long the way. I know that I am loved, and am grateful for it. I am grateful and appreciative of learning opportunities (not that I wouldn't give this all back to not have my little guy sick!). I am grateful for the gospel and the peace it brings. I know these things to be true.

I Can Do Hard Things

My friend Samantha Miller and I have a common saying, "I can do hard things". We remind each other of this as we experience our different challenges, we say, "Remember, you can do hard things!". I was reminded of this as I was on the phone with her yesterday. Austin, Emma, Ben, and I are going to do this, we can do this, all because of the love and care from Heavenly Father. We have been incredibly blessed, Heavenly Father knew this was going to happen, but he had this terrible thing happen in the best way possible. Here are just a few of our blessings.

• Family. If this would have happened in California, it would be a disaster. Here Emma is consistently taken care of by one of two people, and between Ben's family and my family, we always have the support of someone here at the hospital with us. We have had constant prayers, and support from our families. They lift us up when it gets hard.
• Friends. All of our friends have a encouraging words to say, and we have had many concerned phone calls, and many of them gave blood. They also spread the word about donating to the blood bank and encouraged everyone to pray for us. They help us out, and give us love. We appreciate them.
• We are staying with the parents of one of Ben's friends Analee Byers. He met her at WSU and kept in contact with her over the years. Analee is in Australia at the moment, but she reached out to Ben and found a place for us to stay. Her family is amazing, and are very generous hosts. Her dad is a pediatrician to boot.
• Ben was already on vacation, so it was planned that he would be away from his job for an extended amount of time. Also Amgen was shut down for apart of this time. Ben is also in the process of changing jobs to work for Boston Scientific, with the bump in salary we will be able to better pay our medical bills. It might be hard for him to switch jobs right now but he is going to fly up on the weekends, and in the end it's a blessing.
• Our awesome Nephrologist, Dr. Hernandez, is wonderful and everyone tells us that if they were in our position they would want him as their Dr. He also trained at UCLA for his specialty, so when we finally go home, he will hand our case to someone he knows and trusts for follow up care.
• Spokane Children's Hospital is a great place. The Pediatric Intensive Care Unit isn't huge, and some of the nurses have been here for over 20 years (which is unheard of) since they like working here so much. We also see our Dr at least once everyday. This is unusual, and we are grateful for his attentiveness. If we were in Seattle we would be attended to by Fellows that would report to a Dr, here we get the real deal. Also we have a nurse in our room 24 hours a day to monitor the dialysis.
  
• Ben works for a company that has a Nephrology division with nationally recognized Dr's in the field. If we really needed help we can use them as a resource. We also have our good friend Kareem's mom, who just happens to be a very good and experienced Nephrologist. We talk to her on the phone, and she likes to keep up with his progress.
• Emma had diarrhea before Austin had E. Coli. I personally think that this is why she did not get as sick, I think the E. Coli passed right through her system. I might be wrong, but one things for sure. We are so blessed that she did not have it, even though she exhibited most of the same symptoms.
• We were able to see Dr Milligan in Moses Lake who pointed us to Spokane, and we arrived here before he went into renal failure, which better his chances. Austin was not a patient of Dr. Milligan, but we knew him from Ben's parents ward. We couldn't get through to him earlier, and he had been on vacation the week before. I sat in the waiting room and when I saw him I flagged him down through the window. His timing was perfect as far as getting back into town, seeing us that same day, and sending us to Spokane Children's when he did.
  
• Every other person that goes to the blood bank in Moses Lake donates in Austin's name, and is blowing the other blood banks out of the water as far as numbers go. His story was even on the local radio station there. My dad was at the blood bank and was talking to a lady that informed him she had never given blood, but when she heard Austin's story she tearfully said "I just had to come down here and donate blood for that little boy!". We are touched that so many people have done this for our Austin and that many people will be helped because of him. It's paying forward for all the people that donated for Austin to have blood.
• Our friends Eric and Tracy Fuhriman came to visit us. They had the very difficult experience of having their beautiful little boy Kimball pass away after he was born with genetic/heart problems. They stayed at the hospital with him, and it was a very tough experience. We were able to have good talks, and they understood what we were experiencing so well. We appreciate them so much for helping us with their hard earned wisdom, taking us out on the town for a break, and the thoughtful goodies they brought us.
  

There are many more, and everyday I realize another blessing to add to the long list of things that could only have been arranged by a very thoughtful and loving Heavenly Father. He loves us and loves Austin more than we ever could. We are so grateful for Him and the care he is taking of our little family.