CHD Awareness Week 2015

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Yesterday was the first day of Congenital Heart Defect Awareness Week. Sarah’s journey dealing with her CHDs and subsequent heart transplant has affected so many more lives than just her own. This week we remember sweet angels and fighting survivors whose incredible hearts have touched all of ours….

I was just looking and I can’t believe it’s been three and a half years since we started this blog to chronicle Sarah’s transplant journey. It’s been that long since I was thrown into this heart world, meeting other heart moms and dads in the Intermountain area, and started to realized that it’s not a journey we’ve been on by ourselves. Many have walked this path before us, and still more are following behind us. There are so many people affected by congenital heart defects in this world. I bet besides Sarah, you know at least one other person who has had heart surgery of one kind or another. If you don’t, I bet you know someone who does. I am also willing to bet that if they’re under 30, it was most likely a CHD that needed repair.

In an effort to support the little people who struggle to stay alive, and the families of those whose tiny hearts just couldn’t work any harder, I offer my love, prayers and a gentle push for CHD Awareness. Here are a few CHD Facts you might not know…. (courtesy of Intermountain Healing Hearts)

  • Nearly one of every 100 babies is born with a CHD. Congenital heart defects are the #1 birth defect in the world.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
  • Surgery does not cure CHD. Many children will require additional surgeries and lifelong maintenance to sustain their heart health.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • In the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

As hard as some of these facts are to read, I know that most of us wouldn’t trade the paths we’ve traveled for anything. These special children come into our lives and are immediately a source of light, a reason for hope, and a strength to many. They make us who we are. Talk to someone you know who is affected by CHD, ask if you have questions, and pray for healing and hope for the families whose “babies” are struggling right now.

If you’d like to do more, Intermountain Healing Hearts is having a social media campaign this week called Heart on Your Sleeve we’d love for you to participate in. They also accept donations for research funding at this same link.

~Julia


The Drop-Off

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I really should have posted these pictures a couple of weeks ago, but I was waiting for them to get downloaded from Steve’s phone, and then I was waiting to hear from her and see how she was doing in her college adventure before I posted a report. She obviously beat me to it, and what a wonderful report it was! (Click here to read it.) Miss Sarah is LOVING her new Salt Lake City life!

My mom always says it’s easier to have people you love go away when you can “see them in a place”. When you picture where they live, what they’re doing, and what things look like, it’s easier to picture them doing regular things and being content and happy. Sarah so beautifully explained what she’s doing, so here is where she lives and what things look like…

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Sarah lives at The Plaza Hotel… really. It’s kind of like the Tipton, except without Zack or Cody, or…well, anything else their “suite life” has in it. It’s dorm-style housing just for the girls from LDSBC on three floors with a commons room on the main floor and shared kitchens on two floors. It’s located in the train’s “free zone”, a block and a half from the school, City Creek Mall, her pharmacy, and Temple Square. (The Gateway Mall is only a few blocks away, too.) When Sarah goes out her door, she can look out a huge window and see the temple. :)

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Here’s Sarah’s corner of the room. She also has her own desk and wardrobe. Her room has a sink outside the bathroom, a small fridge and microwave, and small balcony where they can step out and breathe in the not-so-fresh smoggy Salt Lake City air. But it’s pretty.

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Here’s a picture of the unpacking. Finding homes for all the necessities. You know, like popcorn, bagels and laundry soap. While we were helping her settle in, we got to meet her sweet roommate, Amanda. Hearing how quickly they became friends and how well they have gotten along has done my mother heart so much good. If you love the people you live with, and actually like to be with them, too, life can be pretty wonderful. I believe that their roommate match wasn’t just two people who needed a room and were randomly stuck in one together. I think they really needed each other. Heavenly Father knows our worries and fears. He listens to our prayers. And sometimes what he wants for us matches perfectly with what we want. It’s such a comfort to know that she’s happy and loving her new, grown-up, independent, testimony-building, college education-seeking life.

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LOVING THIS PLACE!

The good-byes were a little hard, but I knew they would be. From this moment on, it will never be the same. It will be amazing, scary,  awesome, frustrating, incredible, challenging, and wonderful. But it will be different. We look forward to having this girl back home for visits and seeing the incredible changes that are sure to happen in the coming months.

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This one had kind of hard time for a few days. Both of his big sisters left him in 4 months’ time, and he’s feeling a little freaked out being the oldest at home and living in the basement without them. So glad they got to strengthen those relationships before the girls grew up and left home.

I kept it together pretty well until we got in the car and drove away. I had so many worries (which were mostly gone after Sarah’s first text message to me), but the most overwhelming feeling that actually brought the sobs to my throat was the gratitude I felt for her donor family. We still haven’t heard anything from them, and I wished so badly I could tell them of the incredible opportunity they gave to Sarah. I wish I could explain to them how much it means to us to see her living a life we NEVER expected her to have. It’s still a miracle to me, and I will be forever grateful for that one unselfish decision that gave her this second chance.

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20150110_174253~Julia


Liver, Lunch and Love

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A couple of weeks ago, shortly before we dropped our girl off for her college adventures, I took Sarah down to Salt Lake for a liver clinic appointment. We left super early in the morning to be there in time for an 8:00 appointment at the U. We’ve decided we really like that clinic. Kerin, the nurse practitioner we see, is super nice and thorough. After casual conversation, she examined her and then talked to us about her last MRI in July. Comparing it to the one 8 months before that, Sarah’s liver is not only smaller, but the nodules seem to be smaller, and everything indicates that her liver is getting better. Because severe liver damage in congestive heart failure patients is so common, it has been re-categorized and is now referred to as “cardiac cirrhosis”. The blood wasn’t pumping back out of Sarah’s liver the way it was supposed to, so her heart was causing damage to her liver. When we “fixed” the source of the problem, her liver responded in kind and is now healthier than it’s been for several years (at least). It will take time with her healthy new heart for her liver to heal completely, but it’s well on its way! She may always have nodules and scarring, but the kind caused by heart failure are very rarely cancerous or turn into anything to be concerned about. Kerin suggested that because this trend of healing should just continue, she was going to talk to the team about long-term plans. She didn’t think there would be a need to repeat the MRI every six months anymore, and that maybe our visits could be annually, or even release Sarah from their care completely. The heart transplant team can keep an eye on her labs that show liver issues, and refer her back to clinic if there are indications of problems. Amazing.

We took a walk across the sky bridge to Primary’s to visit nurses and say hi to some of our favorite people there. We got to see a couple of our favorites that were working that day, and were amazed at the techs and nurses she didn’t have often that remembered her so well (by name) and were so happy to see her. Emily (one of our favorite nurses) said that she couldn’t believe how different Sarah looked and was so grateful to see the “after” of one of her sweet patients. She said it’s really a treat to see them when they’re healthy, and it doesn’t happen often enough. We went over to say hi to our friends, The Rainbow Kids Palliative Care Team, and wandered around until we found their new offices. We gave reports and got hugs and were invited to the lunch they host every Tuesday for parents of their patients. We left the hospital for a while to buy Sarah’s books and supplies, and get a couple things figured out for school at the LDSBC the next week. We headed back to the hospital for free lunch, and to see the rest of the Rainbow Kids. Usually when we visit, we only get to see a couple of them. We were go glad (in this transitional time for Sarah) to have been able to see all of them that day! I’m not sure how many times I heard them say things to her like: “Ya know, Sarah, we’re right up the hill/just a phone call away/your support away from home/here if you need anything….” I was so relieved especially to hear one of them say, “Sarah, you’ll always be one of our kids.” I hope she will use that resource to help her out if she’s ever lonely or struggling and doesn’t want Mom or Dad to know. It made me feel a little better about her being away from home.

During the lunch, we met a sweet mom from the Logan area whose newly adopted baby daughter was there recovering from her first surgery. She was born with a few of the same heart defects Sarah had. We had a great visit and loved hearing her tell of her sweet angel’s arrival and journey so far, and then shared Sarah’s story with her. She was so grateful to have met a fighter—a survivor—so early in their journey that could give her so much hope for her sweet baby. I love that Sarah can be that for people. It makes my heart smile.

Because we were talking with our new heart friend, we didn’t get a chance to say goodbye to all the Rainbow Kids, so Sarah and I wandered the hallway back to say goodbye. On our way there, we ran into Sarah’s transplant cardiologist, Dr. Everitt, who we love so very much. 0106151340It was something we were hoping so badly would happen because it was her very last week at Primary’s. She has taken a position as the head of Cardiology Transplant department at Denver Children’s Hospital. She is so amazing and we know that she played a very big role in saving Sarah’s life. Because of her expertise, her ingenuity, her compassion, and her stubbornness, she was able to make things happen…just for Sarah. Besides us, there are a whole bunch of parents who entered the transplant world whose “babies” were in her care that are so sad to lose her. There will definitely be a part of each of us that goes with her to Colorado. I think it may have been a little easier on us though, because with Sarah’s imminent transition to the U for adult care, we were going to have to say goodbye soon anyway. We’re just so grateful that things worked out perfectly that we had an unlikely meeting in the hallway and she took a minute so we could all say goodbye!! Always amazed at those non-coincidental tender mercies…. We are happy for her to have this opportunity, and the kids in the Denver area are so lucky to have her.

We had a wonderful day together and enjoyed our visits with people who cared so much for her (and us) during such a trying time in our lives. There were so many hugs and smiles, it was such a boost to my soul to see how Sarah’s journey has affected so many other lives. We loved sharing perspective and faith with a new friend just beginning this journey. We loved our walk around the business college campus, and I loved watching how excited Sarah was about this new adventure in her life. We loved rocking out to Sarah’s favorite ipod playlist in her dad’s new car, and talking and laughing in our 5 hours of travel that day. I will miss those long-ish day-trips together, but am so grateful for those hours of mostly undivided attention and time these past few years. What a blessing. Love, love, love that girl.

~Julia


FRIST DAY OF SCHOOL!

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Guess what everyone! It’s the first day of college!! Hooray!! I am so excited! I moved away, met Amanda, made friends, went to church, went to student orientation, went to temple square, fell in love… Oh, it’s so wonderful!!

You’re probably thinking, “What is she talking about? Fell in love? Temple Square? What’s so exciting about church? What?” Don’t worry, I plan on expounding. ;)

  1. “Goodbye Pocatello!” I moved down to Salt Lake on Friday/Saturday. I was super nervous. This is the first time I’ve been away from home…without at least one of my parental units. I live in a hotel. Yes, just like Zach and Cody. Hehe. No, it’s dorm style housing inside of the hotel. The students don’t get any of the perks with the hotel. No workout room… No pool… BUUUTTT! We do have a laundry room, in the basement. It’s quite sketchy.
  2. “Ahhhh-Amanda!” I love my roommate!! She is just adorable. Her name is Amanda. She’s from Texas. She’s got the cutest accent. It’s just us two in our little room, so we’ve gotten to know each other quite well. Interesting fact — she’s allergic to cinnamon! This is her first semester too, so we’ve been lost, confused, and nervous together. :)
  3. Hi! My name is Sarah. What’s yours?”I love this school. It’s so diverse. I’ve met people from everywhere in the states, Brazil, Russia, Spain… So many different places. I actually managed to find someone from Pocatello!! Her name is Stephanie and she lives on my floor. :) Um, let’s see, because there are so many different kinds of people here, there are crazy languages that are being spoken. It’s kinda weird to be walking down the hall and hear two people speaking Spanish while a couple more are speaking french a little ways away. Everyone is so kind and sweet here. I have met so many new people. Now, if only I could remember their names…
  4. “I’m a Mormon.” My new ward is HUGE! Okay, not “huge” but it’s quite big compared to my old ward. I love and miss my old ward so much, but I’m excited to move on and have a different environment. That’s one of the things I absolutely love about this gospel. No matter where you are in the world, it’s the same. The feelings are the same, the lessons and principles are the same. Heavenly Father’s love is the same. I just love it!
  5. “I’m New…” I swear, I said this like fifty-million times between the two day orientation. Every time I looked lost, someone would ask me what I was looking for. Luckily, Amanda was with me most of the time to look lost and confused too. Hehe. The new student orientation was, well, all of the students whose first semester at the school starts today. We did a lot of workshops, small group get-to-know-you activities, we had speakers, and food. It was great fun. It definitely helped me with all of my nerves and worry.
  6. “IT’S SNOWING, SARAH!!” On Tuesday, after we were done with orientation, Amanda and I went back to our apartment and did absolutely nothing. It was wonderful. After about twenty minutes of being home, I went into the bathroom and I hear, “Sarah!! It’s snowing!” Being from Texas, Amanda hasn’t ever seen snow. It’s so cute. ;) We wanted to go walk in it, so we got all bundled up and headed outside. Because it’s literally across the street, we decided to walk around Temple Square in the snow. By the time we actually got across the street, the snow had turned to rain. Kinda disappointing, right? We bolted for the closest visitor’s center and warmed up. We had several wonderful conversations with different sets of sister missionaries. We stood my a heater under a window and stared up at the temple. Oh, it was sooo pretty!
  7. “We Found Love In A Hopeless Place…” Okay, so the BC is definitely NOT a hopeless place, but the lyrics fit with the topic. I said it and I will never stop: I LOVE IT HERE! This is such a wonderful place. I love the environment. I love the people. I love the professors. I love the Spirit. I just love everything about this place. I am happy. I am so grateful that Heavenly Father let me come here. I am so excited for the adventure ahead.

Thank you all for your love and support. Love you lots!!! <3 <3


Clinic Report

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A few weeks ago, we went back to Salt Lake for clinic and another appointment. I don’t know why we keep forgetting to report about our clinic visits right away. Guess life has gotten back to “normal” enough that we forget people still want to know the details of this journey. ;)

20141014_122844aSo, for clinic, we got to go to the brand new Primary’s Eccles Outpatient Building. It just opened at the beginning of October. It’s so beautiful, sparkly new, and clean. Loved the theme that flows freely to the new hospital remodel, and feels comfortable, yet child-friendly. It’s just wonderful! The darling balloon lights in the lobby and cafeteria were my favorite thing!

Sarah’s clinic appointment went well. We got to meet and become acquainted with a few new transplant team members. Sarah’s echo looked good (consistent with others in the past), and her labs all checked out OK. One of her drug levels was a little high, but they decided that the antibiotic she was on (for a sinus infection) was probably the most likely contributor. We’ve had her labs drawn again off the antibiotic, and everything’s just perfect!20141014_155413a

While we were in Salt Lake, we also did the neuro-psychological testing I mentioned that we were planning to have done. She spent the greater part of a day doing testing to check her abilities in areas like academic, reasoning, memory, and concentration. We felt it would be good to know how her brain works, and what skills/helps she might need when she gets to college in January. We discovered, much to her delight, that even though she’s taken a few years off from school, she’s still scoring average to above average in most areas. We were really happy to find out that her processing and memory recall is also normal, when given enough time to pull it out of her brain. When the task is timed, she usually came in below average, but when given time to complete the task, her answers always were average or higher. So, we concluded (and the psychologist will write reports for the college to include this) that she simply needs extra time to complete tasks. Timed tests will need to not be timed, or shortened instead, so she has adequate time to remember and process the information she needs to answer the questions. She will also need to develop some strategies as she goes in order to memorize information, and may need a little extra tutoring when learning new skills. No sweat. It was good for her to be assured that she CAN do college, and that her development and health issues haven’t really impacted her ability to learn and process information. I’m so excited for her to realize what she really can do with her second chance.

So, the question I still get asked most often these days is “How is Sarah doing?” I’m thrilled to report that she is doing incredibly well. She seems to be getting along just great with her angel heart. She is healthy, loving her life, and feels great almost every day. She is taking good care of herself, making plans for her future, taking steps toward independence, and developing stronger relationships with family and friends. We truly couldn’t ask for more…. :)

~Julia


“What’s new, Scooby Doo?”

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So many new things have been happening in my life, it almost feels “normal”. Well, I’m definitely not normal and I’ve never had a normal life, so I guess I don’t really know what that word means; therefore I probably shouldn’t use it. Hehe.

I have been trying grow up and move on with my life a little bit. (So far the growing up part hasn’t worked out so well…) My sophomore year of high school, I took driver’s ed, just like any other teen. I graduated and was legal tor drive. But because of some meds I was on, how yucky I felt, and how unsafe I felt I would be as a driver, I decided that I shouldn’t drive. And we all know that because my heart transplant changed everything, Tuesday I went to the DMV office and took the written drivers test. Guess what?! I passed! I can legally drive (with a licensed adult), again! unnamed (2)

 

 

 

 

 

 

 

Also, I think back in August, I started my application for school in Salt Lake. I finally submitted it a couple weeks ago. The essay portion was killer! Thankfully, I have an awesome sister, cousin, and mom who were all very willing to help edit and critique them for me. Thanks again, guys!

This came in my email a few days ago:

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I have had some time to think about it and I can tell you that it hasn’t really sunk in that I’m leaving in two months. I guess I better just start getting ready to go and hopefully my brain will register what is happening.

 

So, here’s to my sorta-growing-up-a-few-years-late life changes!


Keep Calm and CAREY On

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Wow! I started this post forever ago and never posted it! Sorry…

In April, Andy Grammer came and did a concert at ISU. It was wonderful. The guy that opened for him was someone that I had never heard of. That’s typical, right? His name was Todd Carey. I absolutely LOVE him and his songs! They are super happy and so much fun. My favorites are Nintendo and Float Away

 Is it bad that I enjoyed Todd’s act more than Andy’s?

In August, Todd was on his own tour and wanted to come back to Pocatello. I was super excited and listed to his songs pretty much non stop for quite a while before and after he came. It was so much fun to see him again. Daminica and I got there pretty early, so we were waiting out in the hall. He was walking toward us to get to the ballroom, smiled, and then saw the shirts we were wearing. He got super happy. I would love to say that he remembered meeting us from his first concert, but I would be lying… He asked us if he could have a picture.  How could we say no?! (Me and Daminica were talking the other day and we realized that neither one of us have seen this picture on Facebook or his website yet. So, just in case you were wondering, yes, there is a random picture of me on Todd Carey’s phone.)  During intermission, we got a picture with him and he stayed and talked for a while with us. We were so into the conversation we were having, he lost track of time and was late for his own second part. Tee hee. After the concert, we went on stage and talked with him some more while he put his stuff away.

April 15

Me, Angie, Todd, and Daminica-  April 15

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Angie, Todd, Me, and Daminica – August 22

 

I just had a really sad thought…..this is probably the closest I will ever get to talking with someone famous. (I have met Kirby Heyborne and Paul Cardall, too. So I guess I’m not a totally looser. Hehe. Just kidding!)


Incredibly Nice Things #4: PF Changs

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pf-changs-logoA 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. PFChangsLettuceWrapsWe 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!” pfchangsWe 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


July Clinic

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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.

July2014ClinicdayThe 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


“Now what?”

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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.