11/2/18

And so it begins...

I think I spoke too soon, bragging about how healthy Carla had been and how she hadn't missed weeks of school at a time, because the weekend after we returned from Seattle, she got sick.  And, she has been sick ever since!  That means she has been sick for three weeks now!  I think part of the problem has been that they decided to change up her immunosuppression drugs.  So, for a time she was taking three, instead of two, and then we got rid of one of them but the one that they added ended up being about three times too high when we checked levels.  Part of the problem too, is that when we check a drug level, it takes three days to get the results back.  And, if you do the draw too late in the week, you won't know anything until the next week, because they don't get results on the weekend.  It's really annoying.  

Since Carla has been so sick, and it is right in the thick of cold and flu season, we have decided to have Carla do school from home again. For now, I'm thinking about keeping her home until after the Christmas holiday.  But, we will reevaluate what we want to do when that time comes.  Her class has gotten really big (25 kids - it used to be 13) and they are very loud and rambunctious, which makes it extremely difficult for her to focus (because she's not used to being around kids).  But, the biggest thing is keeping her healthy.  She shouldn't have to feel like crap all the time. Also, one of the benefits of her doing school at home is that it frees us up for her appointments, etc., without her really missing anything.  I will be going to the school once a week to pick up and drop off work, and we will also have a teacher come to our house a couple of times a week.  So, that gives us the ability to navigate around her appointments.  For instance, next week, she has a cardiologist appointment, blood draw, therapy appointment as well as a dentist appointment.  Therapy is a weekly thing, cardio appointments are monthly but when we go to Seattle (every other month), it is a minimum three-day trip.  One day to get there, one day for appointments, and then one day to travel home.  And, that's not mentioning all the blood draws, to make sure that her drug levels are stable.  We just changed the dose of one of her drugs, so that will be a minimum of two blood draws to make sure she is in range, but not too high.  It's all a balancing act really.  

We did let Carla go to school for the Halloween parade and party on Wednesday.  She was thrilled to see her friends.  It did make me a little nervous, but it's important for her to be able to see her friends sometimes too. After the school party, we took her to the town party and also trick or treating.  She ended up finding a couple of her besties and did run around with them a little bit, collecting candy. So, it was a successful night.  Here are a couple of pictures...


Through the years... She goes from age 3 to 11 in this little collage.  

This year, Carla went as Pearl, a character from the Cartoon Network show, Steven Universe.
 


After her shower, sorting through all her loot!  

We certainly are blessed.  

Love, Jen



10/12/18

Cardio update

Carla had her 6 month post transplant heart checkup on Monday.  She had a bunch of blood work, an echo as well as a doctor visit and a flu shot. Her heart looks great, her lungs sound great, and all the labs came back with nothing to be concerned about. The flu shot brought tears, but I'm still glad we got ours while we were there.  The doctors decided to start Carla on a immunosuppressant called Zortress (or Everolimus). After she is at her target range, they will discontinue the Micophenolic Acid that has been her second immunosuppresant for the last almost 6 years. They feel that the Everolimus protects from coronary artery disease better than Micophenolic Acid, so that is good. They also cut her Sildenafil dose in half and if her heart function still looks good in December, they will likely take her off of it all together.  BUT if her heart function looks changed, they will put her dose back up. Also, we will likely put her back on the Sildenafil if her heart/lung pressures are high at her annual biopsy in April. I am convinced that the heart/lung pressures were actually what was causing the cough, so if she develops a cough again, I will push to have her put back on the Sildenafil as well. 

This has been a long and emotional week for Carla.  It's hard to be 11 years old and to have all of the normal pressures of life (school work, classmates, parental demands, pre-teen angst, etc.) as well as having to deal with the PTSD that she suffers from.  She has a lot of anxiety, but we are working hard to try to help her find healthy ways to express herself and to calm herself down.  Sometimes just taking a break is extremely necessary.

Anyway, we have also been cleared to see the cardiologist here in Great Falls in November, instead of having to go to Seattle.  So, that will help tremendously with normalcy!  Every other month to Seattle is a lot more do-able than every month, so yay for progress!

Love, Jen


10/3/18

October begins!

It is the beginning of October, and Carla has not missed weeks of school due to illness.  She has missed a day here and there, mostly because of appointments or she was feeling run down, but not whole weeks due to illness.  I have to say, this is just so different!  She is so different with this heart!  Her cough has completely cleared up, which leads me to further believe what I've been telling the doctors for months... and that is that her chronic cough had to do with heart failure and nothing more.  She had plastic bronchitis because of heart failure and her constant coughing, and the texture of what she was coughing up was so similar to what she had before she started producing casts, was just to similar not to notice.  The doctors told me that there is no way she could have been developing plastic bronchitis again, but it is so rare that I don't think they really know enough about it to say that to be true.  Anyway, it's neither here nor there at this point, because the cough that plagued my sweet girl for two and a half years is just gone.  And that is amazing.

I still pick Carla up for lunch every day, because of the germ situation in the lunch room. One of the biggest changes that I have noticed is that when we walk to the car, she is not winded and doesn't have to stop and rest.  She can also do things like getting in and out of the shower without help.  Her body is getting so much stronger.  And like I said before, I am just so pleased.

Carla and I will be flying to Seattle on Sunday, for Monday morning appointments. This will be her 6 month post transplant visit!! I am hopeful that after this appointment she will be cleared to see the cardiologist in Great Falls during November and then go back to Seattle in December. That would save us a lot of time and money, so we will keep our fingers crossed.  The docs are not really great about giving up their control, but since we are now officially 6 months post transplant, they will most likely agree.

Last Friday was Homecoming in our little town. They do a parade close to the end of the day, and all of the elementary kids walk down to Main Street to watch (and collect candy). I have always walked with Carla's class, because she didn't really have the stamina to keep up with her classmates, and I didn't want her teacher to have to worry about her.  This time I was so surprised, because she was just as rambunctious and excitable as her classmates! They had this great idea to turn their coat's around, so they could use their hoods to hold candy.  It was pretty ingenious, if you ask me! It was so fun to watch all the squirrelly  little kids watch the parade, and mostly losing their crap over the fact that candy was going to be pelted at them from the high school kids on their floats! Here are a couple of pictures from that fun day!

Having lunch at The Angus Cafe 

Carla is in the red coat.  She and AJ are sharing a moment, while waiting for the parade to start.

Collecting Candy!  She had a really good time :) 
 Hoping this finds you happy and well!

Love, Jen

9/7/18

Cardio Appointment

Carla and I headed back to Seattle on Tuesday, for Wednesday’s early morning echo and cardiologist appointments. The doc was happy with the way her heart looks and took her off the diuretics she’s been on since transplant. Last month we lowered her diuretics, so this was the next step. She has an appointment scheduled for October 8th, but nothing else until then.  So, we officially moved out of our Seattle apartment, and after October’s appointment, if everything still looks good, we will be able to see our local cardiologist every other month and so only have to go to Seattle every other month!! This is huge on saving us time and money, so that’s awesome. 

Carla did catch a cold from starting school, and she’s not 100% yet even though it’s been a week. We are  really hoping that she can get better without antibiotics, but we’re not holding our breath on that. It would be such a huge blessing though if she didn’t need them. 

We should be home later today, and I am hoping for a very low key weekend with zero traveling! 

Love, 
Jen

8/29/18

July and August!

We've been busy little bees all summer! So, I'm going to post pictures and walk you through it ;)

The Benefit was a huge success and we cannot thank everyone enough for their generosity of both time and donations!
My Dad, playing with his band at the Benefit. 

Karen, did more to put this thing together than I could probably imagine.  We have angels that we like to call "friends" 

Carla and I, attending the benefit.

Part of my courthouse family dropped in to visit and donate both money and time. 
The day after the benefit we were off to Seattle for the biopsy... Everything looked great and the rejection score came back as a 1R, which is basically no rejection. Carla's heart/lung pressures were good and we were released that afternoon.

Later in the week, we celebrated our dear friend, Bev's birthday at the Cheesecake factory (we can now cross the Cheesecake Factory off of Carla's bucket list). It was a beautiful day, to celebrate an amazing friend.
Carla, with a decadent dessert. 

Carla and Bev.  I love this photo. 
The hospital gave us tickets to the Zoo before transplant. We didn't get to use them, until July... It was so great to be able to take Carla and to have her be able to walk around, without a wheelchair.  We walked over 2 miles that afternoon and Carla did great!
Our pink girl, with pink flamingos!

Checking out the penguins ...

Towards the end of the day... Carla found a churro, and a stuffed Red Fox (which she named, Churro)

Us Girls!!
The third weekend of July, we were able to come home to finally celebrate Carla's 11th birthday with her friends!! She turned eleven, two days after transplant, so this was a very delayed party, but tons of fun!  We did karaoke, dyed and hunted Easter eggs (she missed
Easter during transplant too), went swimming, had banana splits, pizza and ice cream cake! It was awesome!
The Girls

Swimming!


The next day, we went over to Helena, because my Uncle Norm, Aunt Donna and their Grandson, Ethan (Carla's cousin), were visiting.  These two tweens, sat on the couch and played Roblox together on their phones, and loved every minute of it! It's a new world, isn't it. 

Bobby had a gig at the Helena fair, and so it was a good opportunity to see one of my dearest friends, Katy, and for Carla to go on a couple of rides with Katy's son, Andrew.  Carla is VERY afraid of heights, and at the time this picture was taken, was still very weak on her legs from losing so much weight in the hospital.  Andrew helped Carla conquer her fear and went on this giant slide with her.
The great climb.

Andrew, helped Carla get situated.  

The face of fear...

The face of overcoming fear!

So proud of herself, and we were so proud of her!

Katy wants these two to get married one day... Andrew is about the speediest kid I've ever seen, let's just say Carla takes time to smell the roses.  I told Katy, that marriage would be a lesson in patience for both of them!

Katy, getting her loves in on Carla.  
Before going back to Seattle, we were able to celebrate me, turning 43!  My Dad and Sue came up to Great Falls and we had a nice dinner at Kobe, it was a lot of fun, but mostly great to see family.
My little Wright family, Bobby's folks and my Dad.  
Carla and I drove back to Seattle and had a bunch of appointments the second week of August.  She did a swallow study, which proved to be good news, she is not aspirating at all while she eats or drinks.  We also saw the new ENT and talked about her vocal cords. We decided that if and when her voice becomes a problem (she has a hard time communicating) we will make an appointment to do another procedure to plump up her vocal cords.  At this time though, she has been through so much that another procedure is just added anxiety and we don't need that! We also saw the heart team, and everything looked good there too!  It was fabulous to have three appointments with good news!  After all the appointments, we came back home for a minute, but this time we brought Beverly with us for a couple of days!  She hasn't been to see us in Montana since before we were married!  So, it was a nice visit! We took her to some of our favorite haunts, as well as to see some good ol Montana scenery.
This is a scenic turnout, about 10 miles from our house. We were on our way to the Gates of the Mountains.  I wish it hadn't been smokey... but that seems to be the new normal in the summertime anymore. 

Bobby & Bev

On the Gates of the Mountains Tour.  It was a bit warm...

Bobby and I, at the tail end of the Gates of the Mountains tour.
The next day, we drove to Helena and did the Tour Train.  What a fun way to be reminded of Helena's history!  We got up early and hit the earliest train, because it was set to be about 100 degrees that day! Bev was surprised at how much more comfortable she was with the dry heat vs. 100 degrees with humidity.
Bobby and Beverly :)

Selfies in front of the State Capital!  
Right before we had to head back to Seattle for a sleep study, my Auntie Jeannette, Uncle Bill and their three kids and six grandchildren were visiting in Helena!  Carla LOVES her California cousins (as do I)!  Here Carla is swimming at the Holiday Inn, with Abby, Madison, and Dean, on the twins' 13th birthday!  What fun!
After swimming, my folks hosted a big family BBQ and birthday party for the girls.  What a treat to have so much family in one place! Thank you to my Dad & especially Sue, for putting this all together!
Trying to light the candles in the wind turned out to be pretty funny!

A bunch of sweet girls!

My brother Andy and I, taking a selfie. 

Bethany, Rina, Andy and I, with our Grandma Morgan.  We are so blessed to have this loving Grandma, all throughout our lives!
Cara and Bethany... so sweet.



Will you look at that! We got the iPhone to take a picture of all of us with a pop socket and a timer!  Isn't technology great! And isn't family great!
After this, we drove back to Seattle for a sleep study.  Everything turned out great, and Carla has officially been cleared to be off of BiPap at night.  We started it when she had the collapsed lung, and she tolerated it, probably until she didn't need it anymore.  So, getting news that it was officially not needed what great news!  She couldn't stand it, and it was so hard to keep her on it.

As of now, Carla still has no cough, and her vitals look great.  We have finally hit what I would call a honeymoon phase in her health (HLHS parents talk about the honeymoon phase after the 3rd surgery)... Carla had her 3rd surgery just after she turned two.  So, it is great to finally get our honeymoon phase.  I can't say that part of me isn't just waiting for another crisis to hit... the proverbial shoe to drop... but we could get used to things going smoothly.  Carla told the lady taking her blood on Monday that God has just been like, "What can I do to torture this girl, before she dies." She also talks about how she hasn't had a childhood, because she has been in the hospital so much.  It would be really nice if she could have some time, to just enjoy her life, and quit feeling like a tortured soul...

On that note:  Carla started 5th Grade!  A day late, because we were in Seattle, but she has started nonetheless!  It is going good so far and she seems to have more energy than ever before!



On Sunday, we had a get together for Mandy's birthday!  She and Tom have been together for about four years now, so she is like family.  We sure do love her and our family is glad Tom found her!
Happy Birthday, Mandy!  We love you!!
Carla and I will travel back to Seattle next week, so that she can have her five-month post transplant appointment. We are going to be fully out of our apartment in Seattle as of September 5th, because we will be down to one appointment in Seattle per month, and we can travel back and forth for that.  Being home is so healing for our whole family.  So, lets hope this move home sticks for good!

Love and Blessings! 
Jen

7/5/18

Doing Great!

Since being released from the hospital on June 8th, Carla has been doing so very well!  On June 21st she had a CT Scan and following that, we decided to head down to the Seattle Aquarium and check it out! We haven't been in about 5 years and we had a great time.  After that, we walked down the waterfront and went to Ivar's for a little clam chowder (our favorite). I thought walking all the way to Ivar's would be too much for her, but she made the whole walk! By the end of the day, her legs hurt, but she was never winded. We are working hard on building her stamina, as her little body is not used to all that walking! When we got back to our apartment, I checked my phone and it said that we had walked 2 miles.  Which, is fabulous for Carla!  Here are some cute pictures from the 21st.

Walking to the Aquarium

Checking out the wave tank.

Touching a star fish (she said it felt like bumpy foam). 

Look at all the Jelly Fish!!

Carla, with her new little buddy, the otter.

We had to hit the gift shop and buy a stuffed odder.  She named him S'more, because he is the color of s'mores.  ;)

Waiting to be seated at Ivar's 

Yummy, clam chowder!

On our walk back to the car.  We were able to find some huckleberry ice cream on the way!
On the 22nd, we had an appointment with the infectious disease team (because they ordered the CT Scan). The doctor looked over the results with us and told us that her lungs looked great!  I got to see the imaging, which is super cool! You could see both of her lungs filling up with air, as she breathed in.  This was the best news we have gotten in a very long time!!

On Monday, the 25th, we had an echo first thing in the morning, followed by a cardio appointment and blood work. Afterwards we went back to the apartment, did her lung treatments, finished packing up the car and hit the road!  We made it to Spokane later that evening.
Us girls, hitting the road together!
We got home Tuesday evening and have been on the go, go, go ever since!  On Wednesday, we took some time to play with the puppies for a while. We were watching Cody's puppy, Hadlee, so that was a lot of fun.  Carla loves her some puppies (and they seem to like her a lot too!)
Carla and Hadlee

Good thing she has two arms, for petting two dogs!

kisses!
Puppy snuggles. 


Car and Shar.  She says Shar is her "spirit animal" because she is quiet and slow.  


Mario, wanting us to throw his ball. 

Carla, having a pretty perfect moment.
 Later on, Carla wanted to go to the pool and see if she could find any of her friends. She hadn't been cleared to swim yet, but thought it would be fun to bring her towel and sit by the pool. When we got there we saw that they were having a fundraiser for the pool, and people could paint a brick for a donation. Carla painted a flag, in honor of Pride month. She didn't get to finish it, but we will get it done eventually.  She wanted to write the words "Be Yourself" on the flag.  She is so sweet.
Painting.
While Carla was painting, we got a response from the team about whether or not Carla could swim. The docs agreed that if the pool was chlorinated (which it is) and if Carla doesn't swallow the water (which she doesn't), that she could swim.  She was so happy - and especially happy when she saw one of her best friends there! 
On Thursday, we took Carla out to lunch, and then to see Incredible's 2. The movie was great! When we got home, Bobby's cousin, Dawn and her family were visiting from Vancouver, WA. Carla got to meet her second cousin, JJ, and they both enjoyed playing some ukulele together!  It was a fantastic time!

Beautiful, talented cousins. 
On Friday, Carla and I went to Helena, had lunch with my Dad & Sue and then went over and visited my Grandma Morgan.  I, unfortunately, don't have any pictures, but I do have the sweet memory. My Grandma has a lot of memory issues now a days. But, no matter how much she forgets, she always remembers that she loves us, is always so thankful that we came to see her, and she always reminds me of how lucky I am to have had such an amazing Grandma throughout my life.  She has shown this family love, like no other.  We are very blessed. 

Over the weekend, Bobby was able to pick up a two night gig in Lincoln, and so Carla and I stayed home and I was able to do a lot of unpacking. On Sunday, one of my best friends made the three hour drive from her house to ours, for a little visit. It was super fun to see Jenny! 

Monday, I got my hair cut and Bobby ran a bunch of errands!  Tuesday, we drove over to Helena and bought fireworks from another of my best friends' firework stand and then ran to Walmart to pick up food for the 4th (our house is still lacking in the food department, because we haven't really lived here since February)!  

Tuesday evening, we walked down the road, because our neighbor was having a block party.  I'm kind of an introvert, so it's always hard for me to commit to parties (socializing can be taxing for me) but I have to say, I am so extremely happy that we went!  We had such a great time, and we have some really fabulous neighbors!  Carla actually played with the kids (which is something she has never had the stamina to do)!  They lit off fireworks and just had a fun time!  I loved watching her!  It was amazing.  
And finally,  yesterday was the 4th of July!!! One of Carla's best friends came over for a couple of hours in the morning, and around 3:00 we went to the Baptist Church for a BBQ. We used to live next door to the Baptist Church, and Carla would go over on Wednesdays for what they called "Badger Pit".  Those kids have been praying for Carla and the church leaders decided to donate their earnings from the 4th of July BBQ to us, to help with our adventures in medical travel, etc. It was so thoughtful for them to think of us, and we feel incredibly humbled by all the love and support our community has shown us. For the rest of the day, Carla was pretty spent, because she had gone to bed around midnight the night before and woke up around 7:00 a.m.  But, she did perk up to light fireworks when the sun started to go down. 
Bobby and Carla...

Getting ready to light this little spinning panda.

Bobby's Dad & Uncle Rich. 

Bobby and I 

These two are adorable. 

Cody with his family, Angela and AJ.

This trip has been amazing, and I am so sad that we have to head back to Seattle soon!  Saturday, at the Eagles on Fee Street, in Helena, at 1:00 p.m. there will be a benefit that our band family is putting on for us!  I hope to see some good friends there! There will be 4 bands, including my Dad's band  and Bobby's. It should be a fabulous time and once again, we are so humbled by the love and support that has been shown to us. 



 Here are the fliers that I have seen for the benefit. 

Sunday, we will leave from Helena to make our way back to Seattle.  On Wednesday, Carla has an ultrasound of her diaphragm as well as physical therapy.  On Thursday, she sees the Pulmonologist and on Friday, the 13th, she has a biopsy.  Let's pray everything goes perfectly.

Love, Jen