A Little New News

First i want to share this wonderful video that my Brother-In-Law Bryce made of Austin for our fund raisers. Enjoy!
https://www.youtube.com/watch?v=kBq72bfp9DA&feature=player_embedded

Today has been kind of been hard. We found out that the Dr.'s will have their conference about Jacob on the 29th, so another week more of waiting. I cried when I found out, I JUST WANT TO KNOW! They told Jacob that the surgeon was concerned with his bp (just the diastolic) and the history of diabetes in the family. The BP is just slightly elevated. I am so nervous, and have been kind of holding it all in. So now I just cry. There is still a possibility of a no answer, and I am nervous for it. It will be okay, this whole thing is a roller coaster ride. Up one moment and then plunging to what feels like your death the next. When can we get off? I just don't know. I do know that if Jacob does not work out then I am going to be actively campaigning for a donor. I will be disappointed indeed if I can not find him a live donor. I am going to try my best though, and do everything I can to find that kidney he needs. My Mother-In-Law
is coming down on the 30th so if we get bad news she can be here to help. Last time was horrible. If we get good news then she can celebrate with us. I know that the right kidney will be found, and the Lord's plan is a perfect plan, but it is hard to have very righteous desires and feel like you get sucker punched instead. I really want to just surrender myself to His will. It is a balancing act, you need to pray for what you want (knock and it shall be opened) but be okay with what is given. I hope my faith can build to that.

We also found out today that Austin will be starting on growth hormones. It includes a pen injection in the arm, abdomen, or leg once a day. Kind of scary, I don't think this will go over very well with him. He is pretty afraid of shots. Ugh. I will have to remind myself that he will thank me when he is older, and taller. The growth hormones will probably be stopped post transplant, but since it is still somewhat hazy when that will happen it will be probably be good to start him.

Now for some really great news. You know how I said this was a roller coaster? Well in order to go down you have to go up sometimes huh? My friend Crystal Harris had a drawing that raised over $700. It was great to see perfect stranger unite for Austin's cause. Thanks Crystal! Then there was a garage sale that Crystal Bruce and Tracy Furhiman organized that raised $2700. Amazing. These three lovely ladies have been with us for everything. Thanks so much, can't wait to come up there and give you a hug.
There was a Dinner Auction for Austin in Moses Lake, Wa that was amazing. All 150 tickets were sold and more people came to the auction since the dinner was sold out. All the food was donated and yummy. They served Cafe Rio salads (I SO wish I could have some). Thank you all for organizing it! LaRee McNese was the committee head and we will be forever in her debt. As well as to all the other people who have been involved, there are so many! I am sorry that I can't name them all. If I did this post would be a mile long! People donated all sort of things from an oil change to a Jimmer Ferdet autographed jersey, nights stay at resorts, and sport tickets. There was a hand made wood bow from the Payne's, oil paintings, a hand made quilt, loafs of bread and pies. I think there were over 3 dozen items. I tear up just thinking about the generosity and sacrifices that were made in behalf of our family. More than the money the support we felt was so good. It is what gets me though days like today when things feel crummy. The raised over $32,000. That's right, your eyes do not deceive you. $32,000. Wow. I kept getting texts through out the night "We are over $10,000" , "Now we are over $15,000", "Getting close to $25,000". I was speechless. I mean wouldn't you be? I was overwhelmed, overjoyed, relieved, and I will admit that I felt a little guilty. All of that for our family? There are many people that are in tough situations too. The strongest emotion that I felt was gratitude. I am grateful, and humbled. This is one less thing that we have to worry about. When I say 'thing' I mean a HUGE overwhelming thing that would prevent us from doing normal family stuff not to mention maybe limit some of the extra medial stuff we want to do for Austin (like growth hormones) that could help him. We are almost to our $50,000 goal. So I want to say thanks to everyone including those who have helped drive online donations, organized events with local restaurants, helped place and pick up donation and recycling boxes, organized dinners, sold t-shirts & bracelets, and many more countless acts that have been done to support Austin.. We are so grateful!

Goings On

I never put up the kids birthday party pics. We first had a mini party for Austin on his birthday. Our friends the Quigliey's and Albert and his girls came. We had a lot fun visiting.


Our friends Kyle and Samantha Miller moved from Thousand Oaks to Rosedale, Or. We were (and still are) so sad! We drove over to visit them to see them at their house one last time.






Then a couple of weeks later we had joint birthday party for Austin and Emma. It worked out great sine they are only a year and a month apart. They are into the same things, and have the same friends. They had a lot of fun with some families from the ward that came over to hang out.

We Are Going to Try Something New!

After speaking with the Dr's it has been decided that we are going to try and do 2x a week dialysis this week, then do labs to see if we can continue it. On our dialysis days, in the evening afterwards a typical comment to Ben is, "Guess what? We don't have dialysis tomorrow!" (insert big goofy grin here). It would be really great if we could go back to 2x a week.Austin used to throw up on a daily basis.

Now that we think that giving Austin the Florastor (a probitic to aid digestion) is what has helped him turn the corner, not increasing dialysis to two times a week, I hope that we can keep it!

Kidney's and Stones

You know how in my post yesterday that I was praying for help in case something doesn't work out? Today I found out that I have kidney stones...it is still sinking in. Man this really sucks (pardon the language)!!!! I cannot give a kidney to my baby boy. It is one less kidney that is out there for him, no matter what spin you put on it, that is a fact. One less kidney that someone can give him, one less kidney that I have control over being sure he gets.

It is really hard right now. Everyone says to just hang on a little bit longer, but I want to put my foot down and say no! NO! NO! I know that I have to, and I will. But does that mean that I have to like it? No it doesn't, it sucks, no matter how you look at it, you have to agree. So there. Okay tantrum over.

We will now have to make the decision if we want to have Austin go through with PD surgery to put in a catheter for dialysis at home. It's hard though, if Ben's brother Jacob works out then it will be great and we have another couple months of hemo-dialysis. They said that it will be a 2 month minimum before Jacob can be ready to give his kidney, and he is a match, but we know now from experience that is not all that counts. If something happens and he can't we have other people to be tested, but it can be months, and months before the transplant happens. Uggghhh. PD is not an easy road either. It's a conundrum that our transplant team is trying to help us through.

I feel kind of robbed. If we would have done the PD surgery then we could already be doing PD at home. I know "what ifs" are not good but in all reality we have already gone down this road and have gotten burned. It's frustrating. Disappointing. Plain obnoxious. I just don't want this to happen again. We were all excited, and then had the rug pulled out from underneath us. On the other hand everything could go perfectly, and we have gone through an unnecessary surgery.

So what to do? I have faith, I have asked for guidance, and I will continue to do so. I know that the Lord loves us. I know that it will be okay. I am just allowing myself a minute to say that this really stinks, and I don't like it, and I don't want to embrace it. Tomorrow might be different, and next week very probable that I will be singing a different tune, but for right now this is how I feel.

Testing, Buttons, and Kidney's

A little over a week ago I went through testing to see if my body is healthy enough to give a kidney. So far so good, my blood pressure is like a teenager, and my labs all look normal. We are awaiting the results from my EKG (not really worried about that) and my CAT scan of my kidney's (a little worried). Why, may you ask? Well the only other mom's that I have been able to speak to about this could not give their kidney because of something that was found on the scan. If that scan comes out well, and the EKG looks good we are ready to go. The transplant clinic called to inform us that Austin is ready to go pending a donor. we have our last appointment with them on the 31st of March. If all of my tests are looking good then we will probably set a date on the 31st. I am terrified that some little thing will come up and the transplant will be off. I have been praying like crazy, and trying to be okay if something does come up. The Lord will provide, and His way is the best way. I have to remind myself of that whenever I feel like my heart is going to pound out of my chest with worry.

We have officially started our fund raising efforts. We have the following in the works:

• We raised $1000 through Partylite sales, thanks to all who helped!
  
• Dinner Auctions in Moses Lake, New York, and possibly here in Santa Clarita (post transplant).
• A whole slew of activities in Newbury Park. Our big one will be a walk-a-thon on April 30th with kettle corn, and a silent auction.
  
• The local radio station did a story on Austin.
  
• Garage sales in Seattle and Moses Lake
  
• A raffle through Crystal Harris (a really cool basket with loads of cute, cute crafty items)
  
• There is a Silk-Screening place in Royal City, Wa that is making school shirts and giving proceeds to the campaign. As well as making shirts with the above logo on them to sell. The shirts will be available, we are trying to come up with a system of distributing, I will post on here when they are available, and yes, kids sizes will be offered!
  
• Selling buttons and vinyl decals of the above graphic.
• Coin collectors at stores
• A bunko night with dinner in Moses Lake
  
• Possibly a bowling tournament in Moses Lake...
• We have a website through COTA for Austin (www.COTAforAustinJ.com)
  

We are working through the Children's Organ Transplant Association (COTA). Funds are given to COTA in honor of Austin, then when we get Dr bills we submit an expense report that will reimburse us for transplant related expenses. It has been great working through them.

If you are interested in being involved in any of the above mentioned activities, or hosting your own event, please let me know (benandcortney@gmail.com). If you have any ideas of your own, we are always looking for good ideas! Also Austin's blog button is available now to post on anyone's blog that is interested in spreading the word (above left).

We have raised $8,351.95 (with the Partylite fund raiser included) we are 16% there to our $50,000 goal already! Almost all the above mentioned activities are still in the works, and almost the whole amount raised has been through persons that have seen Austin's story on Facebook or email and have been touched by it! It reminds me of what a special boy we have, and how inspiring he is to everyone. I never cease to be amazed by the generosity and love of perfect strangers, our friends, and our family. Thank you all for your help. We are truly blessed.

Austin's Story

Ben wrote this story, and my friend Naomi edited it. I hope you enjoy, thanks!

On June 23rd, 2010, Austin Jones, two and a half, went camping with his mom and grandparents. As soon as his dad flew in from their home in Thousand Oaks to join the festivities, it would be the start of a long vacation (including a weekend getaway for his parents, a family reunion, a fireworks show put on by his uncle, and many fun days in the summer sun). Unfortunately, while camping and having the time of his life at the lake, Austin and his sister got sick. When Emma started feeling ill, the family cut their vacation short and went home to take care of her. This was the beginning of a story that will continue writing itself throughout Austin's whole life.



The next five days and four nights were sleepless not only for Austin and Emma, but also for their worried parents, Cortney and Ben Jones. Both children were in such severe stomach pain that their bodies would not allow them to rest, and they needed their diapers changed every twenty minutes. On Friday morning, Austin turned blue and started throwing up. His parents rushed him to the ER, where he was evaluated and sent back home. The following day, Emma went to the ER and was put on an IV to help rehydrate her. She began to recover quickly. Hoping for a similar fate for Austin, Cortney and Ben took him to see a friend of the family, Dr. Milligan. Getting an appointment was difficult, but Cortney thought Austin might be in serious trouble, so she persisted and finally got him in for evaluation. Dr. Milligan listened intently to the details of Austin's case, and quickly determined that Austin didn't just have the common flu. The doctor told the Jones family to immediately leave for Sacred Heart Children's Hospital in Spokane, WA. They quickly packed their bags and left, not anticipating more than a few days' stay in the hospital.

For most of that night, Austin was in the ER undergoing a seemingly endless number of tests. As he was obviously a very healthy child in general, he didn't seem that sick at first glance, but at 3:00 AM, the ER doctor finally had some news for the exhausted parents.

"Austin is very sick," he explained. "We're not sure what he's sick with, but we've narrowed it down to three possibilities. They're all quite severe." By the next morning, Austin was admitted into Sacred Heart.

Later that day, Cortney and Ben met Dr. Joel Hernandez, little knowing that he would end up saving their son's life. Dr. Hernandez, a very somber nephrologist, sat down with the worried parents and asked detailed questions about Austin's health. He intently wrote down all their responses, and upon finishing the interview, he had a hypothesis. Austin was showing signs of having a disease called Hemolyic Uremic Syndrome (HUS). Dr. Hernandez explained that Austin may have contracted the deadly bacteria E. coli 0157:H7, which was releasing toxins into Austin's bloodstream. This resulted in a chain reaction: Austin's red blood cells were breaking down and tearing apart small blood vessels in his organs, particularly impacting his kidneys. The doctor told Cortney and Ben that Austin's kidneys were basically shutting down.

The following day, Austin was taken into the Pediatric Intensive Care Unit (PICU) and put on Continuous Venovenus Hemodiafiltration (CVVH) to clean his blood twenty four hours a day. Despite the pain medication and sedatives, Austin was in continual discomfort and was only getting sicker. The balance was very delicate. If they gave him a higher dosage of pain medication, his digestive system would slow down. As antibiotics wouldn't work on the E. coli, digestion was the only way to eliminate the deadly bacteria. This continued for days. Austin was on complete gut rest, and would beg his parents for the food or water which they couldn't give him. Every day, his requirements for medication became higher. He had to have more tubes placed and holes poked in him than his parents ever dreamed they'd see in their small son. Austin was struggling for his life, and Dr. Hernandez was by his side day and night helping him fight.

Several weeks passed with no improvement in Austin's condition, and then he took a sharp turn for the worse. His stomach was growing at an astounding rate. Two stomach X-rays later, a pediatric surgeon informed the terrified parents that Austin was going to receive emergency surgery. Cortney and Ben waited hours for word on the proceedings. Finally, the surgeon came out and told them that the bacteria in Austin's system had attacked his colon, and they'd had to remove eleven inches of decaying organ. Austin was left with a colostomy and no functional digestive system. After the surgery, it took several days for Austin to stabilize. These were some of the worst times of his entire sickness, but he fought through it and pushed his body to survive.


After the colostomy, the E. coli was out of his system. Then, Austin fought a six week battle to get his body functioning again. He managed to recover almost completely, but his digestive system would take a long time to heal and his kidneys still weren't doing well. He overcame blood pressure challenges, nutrition challenges, the challenge of learning to walk and feed himself again, and the final challenge of learning how to have fun like he used to.


After two months of waiting for his kidneys to heal, a biopsy was performed. The doctors determined that Austin's kidney would never recover. Eighty-four days after his first night in the Sacred Heart emergency room, Austin went to Moses Lake, WA for a few weeks before returning to California. Ben had accepted a new job, so he would have a new house and town waiting for him upon his return. Cortney and Ben were thrilled to have Austin at home with them again.

Since his homecoming, Austin has faced numerous challenges. Because he can't eat, he has to be fed through a G-tube inserted directly into his stomach. He also has had to go back to the hospital for a wide array of reasons, including colon reattachment, battling c-diff, flu complications, magnesium poisoning from his colonoscopy prep, needing colon growths removed, ringing in the new year with a bad cold, and chronic stomach problems. Three times a week, Austin must travel seventy miles to dialysis, where he sits completely still for four hours (on top of the countless doctor's appointments and check-ups).

Austin has recently been approved for a kidney transplant, and Cortney is the most likely donor. The kidney will allow him to have a nearly normal childhood, so he can grow and become strong without the pain and inconvenience of dialysis. Unfortunately, the kidney will not last forever (twenty years at the most), and he still has many challenges to face.

Even with insurance, Austin's medical costs are substantial and ongoing. To avoid becoming one of the many familes that are not able to financially survive the impacts of end stage renal failure, Cortney and Ben Jones have partnered with the Children's Organ Transplant Association (COTA) to help raise funds in Austin's name. He and his family can use the funds to help cover transplant-related expenses.

Austin and his family have seen the best this world has to offer. Friends, family, and many different organizations have stepped in to help in countless ways. This love and selflessness has sustained the Jones family and given them the strength they've needed to persevere through the trauma. Despite the hardships they've experienced, Cortney and Ben fully believe it when they express, "We are all so very blessed."

We are in the process of getting started with COTA and will shortly have a web page for Austin's fund-raising efforts. We will post that soon. Here is the temporary donation page, thanks!
http://www.cotaforaustinj.com/

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