A few days before we moved Sarah back home from Salt Lake last summer (July 2013), Grandma and Grandpa took us out for lunch to celebrate. We went to PF Chang’s in downtown Salt Lake City after the lunch rush, to avoid the crowds. This business of protecting Sarah from germs was a little tricky at the time. When the hostess asked to seat us, I requested a table in the corner, all by itself, on the opposite side of the room where the other guests were placed. We must have been quite a sight when the waitress found us. Sarah had on her mask, and I was armed with the hand sanitizer and a large pack of clorox wipes. We quickly decided on the best place for Sarah to be seated, and like a mad woman I wiped down the entire table, her chair, and her menu. And then, I wiped the menu again. (Just a word of advice…never look at the wipes when you’re done sanitizing a menu.) When the waitress came back, I apologized for my over-zealousness with the wipes and explained that Sarah was immuno-compromised, and we had to be careful. She took the dirty wipes off the table to throw them away, and with a sweet smile on her face, excused my antics as if they were a common occurrence. We ordered their amazing lettuce wraps as an appetizer, with a separate plate and a spoon so we could take Sarah’s portion off the plate before the rest of us ate from it. Following an amazing lunch, we picked a couple of desserts to share, and again, ordered a separate plate and knife so we could cut some off for Sarah. Our waitress was so sweet and accommodating, I was touched when she instead brought us each a separate plate to share the desserts. In my almost constant state of near-tears, I told her how much I appreciated her service and kindness, and how much this outing had meant to us because we were celebrating Sarah’s recovery from a heart transplant. At just a little prompting from her, I told her the shortest version of Sarah’s story I could muster, and thanked her again for helping us feel normal again and have a great lunch out together. She congratulated Sarah, told us how happy she was for us, and walked away a little teary herself. As we were finishing off our deserts, the waitress came back, grinning ear to ear. She announced that she told her manager about our celebration and that they decided they wanted to help us celebrate. Then as she handed Grandpa the check, which had the total zeroed out, and “Congratulations!” written at the bottom, she said, “It’s on us today. [huge grin] Oh, and also, here are four $10 gift certificates to help us celebrate our 20 year anniversary. Come back soon!” We were all speechless. On our way out, I stopped to thank her, and because I’m weird like that, I had to have a hug. So that day, we got a FREE lunch (with appetizer and desserts), $40 toward our return trip, and a hug from the waitress. It was a marvelous afternoon, and I was grateful for the opportunity to share Sarah’s amazing story, touch another’s heart, and be the recipient of such kindness, yet again. Sometimes I still can’t believe all these incredibly nice things…even though I was there. So, if you live in the Salt Lake area, and you find yourself in need of a place to eat lunch, go to PF Chang’s. It’s one of my new favorite places in Salt Lake. 🙂

~Julia

On July 31st, Sarah had another transplant clinic visit. Everything looked great…echo, labs, etc. (You’ll remember that she doesn’t have to have another biopsy until next April–unless things look sketchy–so we’re still just watching for symptoms to point to any rejection until then.) We’re happy to report that once again it looks like her heart and body are still getting along very nicely. She did get a stomach bug in mid-July that was still hanging on. They ran more labs and a sample to make sure that she didn’t have any of the nasties transplant kids often get (CMV, rotavirus, and a slew of others). They all came back negative. (Yay again!) But, a week later, the diarrhea still hadn’t gone away, so they reduced the dose of her CellCept (one of her anti-rejection drugs), which can sometimes cause diarrhea, and increased her steroids to keep things balanced. They’ve decided she has norovirus (good old-fashioned “stomach-flu”) that can’t heal completely because of her compromised immune system and the drugs she’s on that can irritate the bowel. They told her to keep lots of fluids in, and we have checked drug levels to make sure they are not being affected too much. Now, a couple more weeks later, her bowel is having good days and not so good days, but overall, things are getting better, and her Prograf level is still perfect.

In clinic, we talked about a few things that were put on the back burner when we were listing her for transplant. We sought permission and direction about having her wisdom teeth pulled, since she wants to be completely out for the procedure. They’re deeply impacted and the dentist says they have to come out. She decided she’d rather do it sooner than later, so we’ll be doing that in the next few months–wherever we can find an oral surgeon that has a dedicated anesthesiologist that’s comfortable working with a patient post-heart transplant. Hmmm…that could be tricky. We also talked to Julianna (our social worker) and she suggested that we get an appointment for the neuro-psych testing we had also wanted to do before Sarah’s listing. She had told us that researchers have found some correlation with learning disabilities, developmental delay, and cognitive function issues in kids with congenital heart defects. Sarah seemed to “catch up” OK after each of her surgeries, but as she got sicker and sicker in her late teens, we could see that her reasoning and memory were genuinely affected. Julianna encouraged us to still have this testing done before she starts college, so she can have a better picture of how she learns best and what areas she might need more help in. Then, in turn, we (and the college) can give her the tools and help she needs to be successful after chronic illness, transplant, and complications/issues during recovery. So, it looks like we’ll be doing that in the next few months, too.

She also asked permission to go to Alaska. Dr. Everitt just laughed, looked at me and said, “Mom, can she go?” She’s so excited to go with Grandma Dixon, and they’ve already bought their plane tickets for nine days at the end of September. They talked about going on this trip to see my sister and her family way before transplant (after her high school graduation), but she never got “better enough” to go. Well, now she is not only better enough, she doesn’t have to have special letters to travel, oxygen on the plane, OR take extra care while she’s there.  I’m excited that she’ll have this opportunity to travel without her parents, and try her independence for more than just a few days. I’m super jealous, but so happy for her to have this experience.

The afternoon was filled with a visit with a couple of darling little boys who have been on the transplant list for more than 100 days and their incredible mommies. Sarah was sad that she couldn’t get close and we couldn’t go in and play (because we didn’t know if she was contagious or not), but it was a life-changing experience for me, being on the other end, and trying to offer hope and love to those walking a similar path. (I’m hoping to share their stories in more detail later, but I need to get permission first.) After the visits on the 3rd floor with them and a favorite nurse, we went to Zuppas Café for lunch. We had delicious bowls of soup, and Sarah had her first crème brûlée. (Kind of a deprived, isn’t she?) After lunch, a nice, young man named Zack took us on a tour of the LDS Business College and introduced her to some of the interior design students. Sarah was enraptured, and that led to her decision only days later to attend in January.

The next day, she had an MRI on her liver. We got a letter a week or so ago that said that her liver is cancer-free, and things look good. Always a relief to get those kind of letters.

So, things are going well for Miss Sarah. Her tummy is getting better, her liver is healthy, her heart is doing an incredible job, she’s studying for her written test to get her driver’s permit, going back to work (full-time) as soon as her tummy finally allows her that freedom, finishing her application to LDS Business College, and preparing for a trip to Alaska. Oh, and she has a couple of weird procedures/tests we need to have done in the next few months. Whew! She seems to be handling the whirlwind of change a little better than I expected. I think I’ll just hang onto her hand and try to enjoy the ride until it’s over. Oh, wait… this IS just the beginning, isn’t it? …Yeah, a great new beginning….

~Julia

Usually people grow up knowing what they want to be when they grow up. A doctor, a teacher, an actor, a singer, a princess…you get the idea. I was no exception. Thanks to my wonderful parents, I grew up with dreams and goals in mind. It wasn’t until the fall of 2011 that those dreams and goals died. They died because I was old enough to know what was going on with my heart and body and that I might not ever even get the chance to fulfill them. Well obviously, all of that changed one year, two months, and twenty days ago.

Rachel, my sister, has been getting ready to leave for school in a week. Many of my friends are almost graduated from their programs. Several friends are getting engaged, married, and having kids. I have had very mixed emotions about all of this exciting news. I am super happy for all of them but at the same time I don’t want them to move forward with their lives because mine isn’t anywhere close to where it “should be” yet. I figured because my life took a momentary pause that everyone else’s lives should do the same thing.  Oh boy, was I wrong! Life moved on without me. How dare it, right?!

With all of the changes and growing up that is going on around me, I too have made the scary decision to move forward. I had a few doctor appointments last weekend. After my clinic on Thursday, I took a campus tour. I have decided that I am going to be attending LDS Business College in Salt Lake! I want to study Interior Design. If you know me at all, you know that I really enjoy furniture, colors, fabrics and designing. They have a two year program that looks intense, stressful and challenging, but it is what I want to do. They have two different times I can start. In the fall (September) or in the winter (January). My original plan was to work this year and then start school next fall. After the tour and talking with several of the students, I felt like I couldn’t put it off. But I also knew that I wouldn’t be able to start in a month…..

I made the decision to aim at starting school in January of 2015. I decided to fast and pray about the decision I had made. Not to know if I had made a good choice (because I knew it was what I need to do next), but to let me know if I needed to stay in Pocatello longer than January. I didn’t feel anything that went against my plan, so I have started applying! I am freaking out but I am so excited!

I always made a joke out of it whenever someone asks me what I am doing or what I am going to do with my life. Before last week, the answer was always “oh you know, hang out, go to school, get married and have a happy family” but now my answer has changed and I can confidently say, “I am going to go to LDSBC in January to study Interior Design, hopefully meet my best friend who will also be the man of my dreams, get married to him and have a happy family!”

*Insert important testimony about Heavenly Fathers’ plan for me*

Have a wonderful week!!!!

 

 

 

 

Hahah! I’m just kidding. Don’t worry. I’m going to share my testimony!

I know that my Father loves me and wants me to be happy. I know that He has a plan for me. I know that we have agency for a reason. Agency is the ability to choose what we want and don’t want. I know that the main goal is the same no matter what path we take: Eternal Life. In my opinion, His plan isn’t just a straight line from point A to point B, but kind of more like a river or the freeway. There are many different twists, turns, and detours that we could possibly take in our journeys. We may go down one road that turns away from the goal but there are so many ways to get back on track. I know that if we are righteous and faithful, Heavenly Father will help guide us to where we need to be. I am so grateful to have His guidance and help in my life.