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