Finale

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About a month ago (boy, how time flies…) Sarah had her very last appointment with her beloved transplant team at Primary Children’s Hospital. I can’t believe we’re at the point of closing that chapter of our lives and moving on. It’s been in the works for a long time now, but it’s still hard to let go. Lots of newness coming our way!

Sarah’s annual heart cath and biopsy went amazingly well. Having not had one for so long, she was out of practice and a little nervous. She had told the nurses that she wanted some versed (we call it happy medicine) to help her relax before they took her in. By the time the anesthesiologist came to talk to us, though, she had decided she was fine and didn’t want it after all. There is something amazing that happens as your medically-experienced child grows up. It’s incredible to see how she’s learned to cope with and now let go of the anxiety of these procedures. It was fun to watch her walk in and greet everybody like she owns the place and joke with them about the doctor’s bad taste in music. She did so great, and whatever they gave her to help her sleep during the procedure was a magic cocktail. She woke up feeling good, alert, happy, and totally nausea-free. That made her recovery so much easier. Her heart pressures were nice and low, coronary arteries wide open and beautiful, stent stable and strong, and labs were all wonderful. Most of her numbers are perfect. Better than they’ve ever been. There were NO donor specific antibodies (DSAs), which we were especially grateful to know. Her angel heart is healthy and happy in its new home.

And yet… biopsy results came back showing mild rejection (C2 V3 ISHLT0, pAMR2). It’s a puzzle to me how everything can look so perfect in every way and the biopsy still comes back like this…. The team (together with her new team at the UofU) decided to not change anything. They figured the rejection was a direct result of lowering her Tachrolimis (Prograf) dose (one of her anti-rejection meds). They brought it down a month before her biopsy to see how her body would react. They need her at the lower levels by now because higher doses of that medicine can cause lots of other problems if taken long-term. This is truly a balancing act and makes me grateful for the practiced and meticulous acrobats that handle her care. They added a new cholesterol medicine to keep her arteries clean, and left everything else the same. With a little bit of hope, and trust (and maybe some prayer, and pixie dust for good measure) her body should get used to the new lower Prograf dose (since she had no DSAs) and even itself out. She’s got some blood draws coming up to check things, and a follow-up appointment with the heart transplant clinic at the U next month.

In the meantime, she’s still at school in Salt Lake learning all she can about being all grown-up and living on her own, taking care of her medical needs all by herself, building life-long friendships, and picking up an occasional tid-bit or two about interior design. Life is so good for her right now. A pretty good finale for this part of her journey, I’d say. :)

~Julia

P.S. It was really quite strange to leave her in the capable hands of her boyfriend and roommate for the last 16 hours of her 24-hour adult-supervised recovery and head back home without her. I guess in time, I’ll get used to that change, too.


National Donate Life Month

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NDLM_2015_FacebookAd_with WebsiteI had great plans to write this post at the beginning of the month, post stories of our new transplant friends to tug on your heart strings and convince you how important organ donation is, and motivate you to register to be an organ donor. The month whizzed past me though, and I fear I have now missed that opportunity. However, I’m guessing most of you who read this blog regularly have already been convinced. Watching Sarah’s journey and the miraculous change that has taken place through her second chance, should be enough proof to help you decide if you were sitting on the fence about registering to become an organ donor.

In observance of Donate Life month, we’ve been flying our Donate Life flag (whenever the weather has not threatened to tear it from its hooks), and been involved in planning the first Dash for Donation in Pocatello to be held the end of June. (More about that in a later post.) Steve called in to his friend Neal’s morning news talk radio show (on KID 590 AM) on Sarah’s heart birthday to talk about the importance of organ donation. (I wanted to post a link so you could hear it, but the sound isn’t working, so we’ll post that later, too.) There are currently more than 123,000 men, women and children waiting for life-saving organ transplants. 18 of those people die every day waiting. Here’s the crazy thing… 90% of Americans are aware of organ donation and support it, but only 30% have done anything about it. Why don’t they? I’m guessing they must have questions, don’t really understand, or simply haven’t cared enough to register.

Here’s a great video by HRSA posted on the Donate Life America website that explains organ donation and transplantation, and how it works. Click here to watch it.

Because someone said “yes” Sarah is living a life we never dreamed she’d have. Because someone said “yes” her little friend, Zack is pretty healthy (though his kidneys don’t particularly like the anti-rejection meds), growing like a weed, and doing all kinds of normal kid things. Because someone said “yes” our friend Abby gets to be a teenager and recently went to her first school dance. Because someone said “yes” Sarah’s blog buddy Lauren is serving an LDS mission in Salt Lake City and sharing the joy and peace that the gospel of Jesus Christ brings. Because someone said “yes” just a couple of months ago, our little friend Alex got another chance–just in time–and is home with his family and doing well now. Because someone said “yes” our cute friend Owen has had a great year and a half to be a “regular” kid. (He’s having some struggles right now, but he’s a fighter, and his angel heart seems to be healing and responding to treatment. Thank you for your prayers.) Because someone said “yes” our sweet friend Shiloh has been given an opportunity to grow up and run and play with her big sister. Her mommy said I could share a little news clip about their family and organ donation. Click here to see the cuteness. These sweet friends are just a few of the many kids we’ve been privileged to know personally and watch the miracle that came with life-saving organ donation. We love them all… and especially the people who gave them another chance.

~Julia

P.S. If you’re not already, the Donate Life America link above (or on the sidebar) will lead you to more information and connect you to your state’s registry. Thank you, from the bottom of our hearts.

 


Happy Heart Birthday!

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DSC_0024aSarah’s two year anniversary with her angel heart was last Tuesday. I can’t believe it’s been two years already, and I really can’t believe how well-adjusted and comfortable her new heart has become in the last two years. As we contemplated our many blessings, we overflowed again with gratitude for her donor, and the sweet family that was left behind. With such a beautiful healthy heart, her donor’s life must have ended abruptly, and and we are so very grateful his/her family said “yes” even with such a difficult loss. We had a quiet little celebration with our family that was home (we missed Rachel so much) with a small, yet sparkly, balloon launch. DSC_0030aWe gathered together in the back yard huddle-style while Steve offered a solemn prayer of gratitude for Sarah’s new life, and comfort for her donor family. As we each took turns sharing what we are grateful for through this experience, we let our balloons go and watched them float to heaven in honor of her heart angel. It was a sweet moment of peace and reflection. I set up a “pay it forward” event on Facebook to help us honor Sarah’s donor’s life, and was completely overwhelmed when in just two days more than 2.5K “friends” had been invited to participate and do a random act of kindness in Sarah’s name on her heart birthday. The tears flooded my eyes to see that almost 100 people had committed to “pay it forward” and many others probably did without even letting us know. Thank you to everyone who did something kind for someone else that day. The greatest gift that could ever be given to our daughter can never be repaid, but it helps knowing that anonymous service and love is being spread around the country (or world?) in a very special angel’s honor. SeanMcGrath2

Sarah’s been home for a week or so after finishing her first semester at LDSBC. She has had so many good experiences there and has made so many good friends. She loves her life in Salt Lake, and can’t wait to go back next weekend for her summer semester. College life looks good on her, and she is so happy. Wisdom teethWhile she was home, we took advantage of the break and tortured her a bit by having her deeply-impacted wisdom teeth removed. She didn’t want to be awake for it, so we opted for surgery at the hospital. Except for the three-try IV placement, all went well. (We sure missed the pro’s at Primary’s during that. Her wrist is almost as bruised as her poor chin is now!) Although she’s a little less “wise” now, she is recovering very well, and has checked off another “normal” young adult experience on her list.

Some of the things we’ve learned…. The world is full of good people with good hearts, who find joy in doing good things. Life is full of good (but sometimes hard) experiences that cause us to stretch, but always to grow. This journey we’ve been on has been full of God’s good blessings and never-ending love. ♥

~Julia


Movin’ on

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Sarah had another cardiology transplant clinic appointment near the end of February, where all went well and labs, echo and exam looked great. We took a tour of the Cardiology Transplant Department at the UofU in preparation for her transition there this summer. We met one of the transplant coordinators who seemed really nice. (We already met the other one when she was being evaluated originally there for transplant, and she’s excited to have Sarah back.) We learned that if everything looks good at her annual cath & biopsy next month, things change dramatically once she gets to the U. At the adult clinic, (as long as things are going well) they only see you once a year for a full-day of cath, biopsy, poking, prodding, and testing. Beyond hospital_monumentthat, there are only quarterly blood draws, and simple phone calls to transplant if she gets sick, sees a doctor for anything, has any other health related issues or questions. I’m sure I audibly gasped when I learned that at year 5, the now annual biopsies will stop completely…. Oh, gone are the days of monthly/quarterly clinic visits, check-ups, and periodic reassurances to mom and dad that all is well in Sarah’s angel heart. Pretty incredible and so very exciting, but kind of unnerving, too. Her annual cath/biopsy had to be postponed until May for her wisdom teeth surgery, so that will be on the 11th, and will be our very last appointment at Primary Children’s. Transition to the adult world was eminent, but I think with her choice to do her last annual at Primary’s instead of the U, we’ve managed to suck every last possible moment out of our care there! So…here’s to growin’ up and movin’ on! Wish us… oh, I mean…wish Sarah… luck! ;)

~Julia


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!