11/25/16

Carla's Heartiversary and a trip to Seattle

Last Tuesday, the 15th, was Carla's 4th heartiversary!  It is hard to believe it has been 4 years and at the same time it feels like it's been 10! Carla had appointments in Seattle on the 16th, so we celebrated her heartiversary before we left for the airport.

I bought little Donate Life pins for all of the kids in her class and made cupcakes.  The school did a great job of making everyone aware of Carla's special circumstances and even made a PowerPoint video to help teach the other kids to be good to each other.  If I knew how to upload a PowerPoint video to the blog I would post it here, they did such a fabulous job.  Everyone who's seen it in our family has shed a little tear. One of the clubs at the school also gave Carla Happy Anniversary balloons and when we left the school her class sang "Happy Heartiversary" to the tune of Happy Birthday.  On the way to the car a bunch of teenagers were coming up to her and wishing her a happy day. It was really special.

We left the school and met some family at the park for our traditional sending a letter of thanks up to the heavens for Justin.  When we got to the park the wind starting blowing something fierce, it took the balloons up just as fast as they could go!

Carla with some of the heartiversary cupcakes

wrangling the balloons in the wind

Carla, Uncle Tom and Mandy is on Facetime.

Our little Wright Family minus one (Cody was at work). 

Carla with Great Uncle Skip, Papa, Tom, Bobby & I (and Ranger dog). 

Uncle Tom took this one so that Grandma could be in the picture too. 
After our little ceremony we were off to the airport.  Carla and I had soup and fries while we waited for our flight.  We got to Seattle and rented our car just in time for 5:00 traffic!  It was dark and raining. I was so glad that we had lived there for that year and a half and that I didn't have traffic anxiety on top of the fact that it was dark and raining. We made it to Bev's house and promptly hit the road for an Applebees celebration dinner. It was so sweet of Bev to take us out to celebrate. By the time we were done with dinner, Carla and I were pretty well beat and settled in for the night.

Carla and I had to be to the hospital by 7ish Wednesday morning for labs. So, we hit the highway by 6:10. There was surprisingly a lot of traffic on the 405 as well as I5, but we made it to the hospital with time to spare. We made it through security, checked in and waited for the lab to call her name. They were running a little behind, which started to worry me, but they eventually got us in and labs went very smoothly. We bought Carla the new Diary of a Wimpy Kid book for her Heartiversary, and so she read that book the whole time she was getting her blood drawn. It was funny... kind of like, "Just go ahead and get your job done, I'm busy reading my book." After labs we went downstairs, checked in, and waited for cardiology. They did Carla's echo and then we waited for Dr. Albers. The new thing Children's has been doing is having a pharmacist and a psychologist come and talk to us while we wait. So at one point we had Jason, the transplant nurse, Dr. McKeever, the Psychologist, and Dan, the pharmacist, talking to us. When Dr. Albers arrived they all kind of cleared out. I feel like it was a little much all at once, but they have been working really hard on touching all of the necessary things that need to be addressed with transplant kids, which is good. Dr. Albers was happy with the fact that Carla's heart rate had dropped about 20 beats per minute and her echo looked unchanged. We didn't need to make any med changes, which was nice. After the cardio appointment we got a quick little something at the cafeteria, because neither one of us had eaten breakfast. We then headed over to the pre-anesthesia appointment at 10:30. That was pretty much just answering a bunch of questions. We had a couple of hours to kill after that appointment, so headed over to Target and bought Carla some boots to wear (instead of the little dress shoes she bought). After Target we headed over to one of Carla's favorite old haunts, the Yummy Cafe, and had actual lunch (we had just had enough to tide us over at the cafeteria). The Yummy Cafe never disappoints and afterwards we were ready to tackle the rest of the day... Carla had an  ENT appointment at 1:20 and I was worried that he would want to use a scope and look at her vocal chord... but you have to go through the nose, which Carla HATES (can you blame her!?) Thank goodness, Dr. Ingls let her know right away that he wouldn't be doing the scope, so that was great!  We were back to Bev's by about 3:00, and settled in for the night.
On Thursday we had to be to the hospital by 12:30 for a neuro/psych evaluation.  I was about a 3 hour test and we were happy to be done with the hospital for the weekend.
Yummy food at the Yummy Cafe!

On Saturday, we had the opportunity to meet up with old friends for dinner in Federal Way.  It was so fun and we hope to do that again in January when we come up for biopsy.

Sunday we had the opportunity to see Bobby's Auntie and cousins as well as to see my cousin, Amy, and her family.  It was a lovely day and I was feeling pretty blessed to have so many loved ones in the Seattle area.  It really makes having to travel there all the time a lot of fun.

Making homemade flour tortillas with cousin Ethan
Monday we didn't need to be back to the hospital until 12:15, but Carla's last meal was at 5:00 a.m., and then she was starved down the rest of the day. She actually woke up at 4:00, so I made her french toast and then went and laid down for a while longer.  I had actually been awake since 2:00, because I couldn't sleep. They didn't actually start her vocal chord procedure until 2:00, so at that time I was starving like crazy (I don't eat when she's being starved down).  After I left her in the procedure room I hit the cafeteria and found some yummy noodles that I heated up in the microwave. After eating I went downstairs and waited to be paged.  Eventually I was paged and got to talk to the doctor about how the procedure went.  Her vocal chord was kind of saggy, so he plumped up as best he could.  So far I have REALLY NOTICED a difference in her voice and she is A LOT LESS phlegmy! Thank God!  Hopefully this will last a couple of years. We were released from the hospital just in time for 5:00 traffic, and went to Bev's and just vegged out. We were both very beat!  I actually slept Monday night and was excited about coming home on Tuesday and getting ready for Thanksgiving.

All ready to go!

Trying to read while I was pestering her...

Procedure's done...

Freedom!

Just in time for traffic!

Eating Ivars' clam chowder at the airport, yum!

On our way home!


Yesterday was Thanksgiving and I can't help but to feel extremely thankful and blessed!  What an amazing life.

Love, 

Jen

11/1/16

As promised, here are the pictures I did of Carla for her school pictures.  My favorite is the one where she is standing, but the closeup under it is actually the same picture, so I really like that one too.  I'm really happy with the way they turned out, and really happy in general.  




We did Halloween yesterday and Carla went as this creepy character from a horror game.  She does not play the game, but does love the music, etc. that people put up about it on YouTube.  I have been really impressed with her energy level lately and have noticed that her heart rate has come down to 107 when she is sleeping (instead of 121). It's still high, but more of a "normal" for her instead of running a race day and night.  I'm pretty sure this is contributing to her higher energy level.  




The 3rd Grade...
It's funny to me how many creepy vs. adorable costumes there are.  This is such a neat age and Carla's class is full of great kids! We are very blessed.

I had an idea this morning after dropping Carla off at school...  IF WE MUST participate in the time change, my vote is that they should always "Fall Back" the day after Halloween!  The kids all looked like the day after Halloween Zombies... they could have used the extra hour this morning :)

Speaking of Halloween, it looks like it blew up in my house, so I need to get on with my day and see if I can tackle some of this mess!

Happy November!!!

Love, Jen

10/27/16

Time Flies!

It's almost Halloween!!  I can't believe how fast time has been flying by!  It has been a great school year so far for Carla and I am super impressed with how the school this year has stepped up their game. Carla has not had a severe cold yet, whereas last year she had already been hospitalized twice at this time.

Carla and I will travel to Seattle on her heartiversary (November 15th) for appointments with the heart team, psychology team, ear nose and throat team as well as a vocal chord procedure. Carla is dreading the flight and is counting down going, not because she's worried about the doctor appointments, but because she is worried about having to fly. She developed a fear of flying sometime last spring and no matter how many times I tell her that flying is safer than driving (especially in the winter) she is still terrified.  I'm sure she will out grow this, as she used to LOVE flying and has to fly several times a year.

We got her school pictures back and she refused them and told me they were "cringe worthy".  We will do retakes because I already paid for them, but I put the green screen up yesterday and we had a little photo shoot, so I'll be looking forward to sharing some fun photos from that soon.  We've decided no more school pictures, I can actually do a better job, so we are done with that. Plus, she can dress up, get her hair done and have a lot of fun with photo shoots at home.

Tomorrow I will be taking Carla to Helena to see my Dad's band play :)  I am looking forward to seeing my family and hearing Dad's band.  Bobby has a gig on Saturday, so I'm looking forward to that as well!  It will be a weekend full of music and fun! What could be better than that!

I'll update with pictures soon!

Love, Jen


10/8/16

This and That...

Things have been going fine and dandy around here :)  Carla is enjoying 3rd Grade and I am busy with chores, working out and going back and forth to the school every day.  I take her in the morning, come home and work out, take a shower, make lunch and then go get Carla for lunch. Unfortunately, lunch is only half and hour, so she gobbles down some food and then I rush her back for the rest of the day, do some chores and whatever and then pick her up after school. Bringing Carla home for lunch is somewhat of a hassle, but I think it's well worth it because it helps her to stay healthy. A cafeteria full of kids eating is a recipe for disaster when it comes to being immunosuppressed and staying healthy. And, so far it has been working, because she hasn't had much more than a slight "I'm not feeling great" day... Unfortunately we are still battling the pseudomonas phlegm, and will start another month of the inhaled antibiotic again next week. Last year at this time Carla had already had a horrible cold, pneumonia twice as well as two hospitalizations. So, I'm feeling pretty good about the way things are going so far. 

Carla and I will head back over to Seattle on November 15th for more doctor visits as well as a vocal chord procedure. We are hoping the vocal chord procedure will once again help with the phlegm issues (fingers crossed).

I can't even believe how fast time is flying by and that we are coming up on the "holiday season" again! We have been out of our house for over a year and Bobby is in his 3rd year of college!  It seems like I blink my eyes and another year has gone by! 

Carla had a cardio appointment on September 19th and things are going pretty much the same.  They upped her beta blocker in the hopes of slowing down her speedy heart rate, but that has only helped a little bit. I do always have a worry in the back of my mind about her Coronary Artery Disease and her speedy heart rate. But, at this time I will be happy that she is doing pretty well in general and enjoy life.

I am so thankful for your continued thoughts and prayers.  

Love, Jen

9/9/16

Back to Life...

Today is the last day of the third week of school for Carla, and I have to say, so far it is going great! I absolutely LOVE her new teacher and I also LOVE the new elementary principal!  For the first time since moving back to Montana from Washington, I really feel like the school has a great grasp on what they can do to create a safe school environment for Carla. They check to make sure that the air quality is good before sending her out to recess, they have made adjustments with regard to P.E. and have actually given her a library job for when P.E. is not appropriate for her, installed a hand sanitizer dispenser by her classroom door, and in general have had great communication with me. I honestly have had less anxiety this year because the school has been so helpful! Unfortunately, she did catch a cold, but it wasn't a very bad cold and she is feeling better already.

As far as other news goes, Bobby is in his second week of his Junior year at the University of Great Falls, and is adjusting well. We starting a work out regimen back in July but have gone into the full, Body for Life workout and eating program as of 2 weeks ago. We are both feeling a lot healthier and are committed to living a much healthier lifestyle. We do weight training 3 days a week and cardio 3 days a week, plus we've been riding our bikes to get the mail every day as well. Both Bobby and I have struggled with our weight for the last 4 and a half to 5 years.  After plastic bronchitis nearly took Carla's life in  2011, followed by waiting for a heart, her brain injury after transplant and then all of the post transplant stresses, we both started comforting ourselves with food and drink. At the end of June, we had an eye opening experience when Bobby went to the dentist and found out his blood pressure was through the roof. We knew immediately it was time to make a change.  So, we've been working hard at it ever since!  I can't wait until we are both at our target weights again, but am taking it one day at a time.  Luckily, with Body for Life you get one "Free Day" a week, so it's nice to be able to feel like you can still have a little "fun" once a week.

Bobby's  1st day of school :)



8/26/16

Summertime Fun! And Now, School Has Started.

Carla was able to attend Camp Korey, in the Seattle area the second week of July. It was specifically for children with solid organ transplants and she had a fabulous time!They uploaded a few pictures she is in that I wanted to share...
Getting messy!

She looks like she had a little bit of fun!
 One of the nights at camp there was a talent show.  Carla brought the house down with a solo...


Here she is, trying out horseback riding...

Having a dance off...

The campers...

Trying out the rock climbing wall...

Some of her group...
 After getting home from Seattle a couple weeks passed by and boom, it was my birthday! We went over and had a burger at the Driftwood here in Cascade, they  make a mean burger.

Carla and Grandma, waiting for our food. 

Birthday selfie!  I'm 41 now!

A couple of cheese balls with a bucket of cheese balls.  
The day after my birthday we headed off to Seattle for more appointments... This was taken on the 5th of August while waiting for the pulmonologist. 



After appointments we ate at the Yummy Cafe, one of our old Seattle haunts...
While on our way to our home away from home in Renton, we got a call that they could squeeze Carla in for a CT Scan of her lungs.... We had already braved this traffic, but then  had to turn around and do it some more.  Just for a reference, the red dots mean traffic is backed up.  It was a long day. 



Carla before the CT Scan, she was a tiny bit terrified... 
 Over the weekend we were able to hook up with my Cousin, Amy and her Family... :)

Me, Amy, Carla and her cousin, Ethan. 
 Monday we were back in Seattle for more appointments...


 The day after Carla and I returned home from Seattle, Bobby had a gig at Rockin the Rivers... We spent 2 nights rocking out and got to hear some great bands... Here are a couple shots of Metal Steel, rockin.
Andy & Gunner, soloing...

Gunner & Bobby...

Check out that happy crowd! 
Tuesday, the 23rd was the first day of school for Carla!!! I can't believe 3rd Grade is already here! The summer flew by and I was so not ready for school to start.  But, I REALLY LOVE her new teacher and am very hopeful that it will be a great year!

On our way...

Look out 3rd Grade!! Here she comes!




8/16/16

One more week!

We are coming upon the tail end of the summer, in fact, we only have one week left to enjoy!  I met with Carla's school yesterday to try to iron out an IEP.  I feel pretty good about how receptive the school was and will grit my teeth and hope for the best once again.  They are putting a hand sanitizer dispenser by the door in her room, so that makes me happy.

On August 4th, Carla and I headed back to Seattle.  She had appointments on Friday, the 5th (with pulmonary); Monday the 8th with her heart docs; Tuesday for speech to watch her eat; and Wednesday the 10th for a swallow study.  The good news is that the swallow study showed no signs of aspirating, which doesn't surprise me but it was good to rule out. The docs are trying to figure out why she is having such a difficult time getting rid of the Pseudomonas bacteria, so ruling out aspirating is a good step. On Friday, the lung doc ordered a CT Scan of Carla's lungs to see what kind of damage we are dealing with. It actually turned out better than he had hoped, so that was good news. He said that with her having had plastic bronchitis, a paralyzed vocal chord as well as being on immunosuppression drugs, that she is kind of hit with a triple whammy that is making it difficult to get rid of the lung issues. We are really amping up her treatment regimen, so I am hoping that that will help. As far as her heart goes, everything looks the stable. We will do a follow up in Missoula on September 20th and then see Seattle in November and then back again to Seattle for biopsy in January.  I'm feeling like these trips are getting to be a little bit much, but of course understand that it is important.

School starts on the 23rd, and I am super nervous and not looking forward to waking Carla up at the crack of dawn so that we have time to give her a breathing treatment before school.  But, once again, we will just do what we have to do. I'm feeling glad to have her on an inhaled antibiotic the first month of school though, because it makes me hopeful she won't get pneumonia this upcoming month... here's to hoping anyway!

Thank you for the continued prayers! Sorry for not updating very often... I've been running around like a chicken with my head off lately!

Love, Jen

7/21/16

Summer is over half over!

Summer is almost half over and it has been a fun one!  We did Disneyland (which I posted about). After Disneyland we drove south a little more and spent a day at Lego land before driving up to Sacramento and spending a week with my family there.  Carla had so much fun playing with her cousins and so did I!  After returning home we had a couple of weeks before it was time to drive to Seattle so that Carla could attend Camp Korey.  She attended the "Solid Organ Transplant Week" and it was super cool because it's a camp designed especially for children like Carla, equipped with nurses and fabulous counselors. She got a tiny bit homesick, but I think it was actually harder on us than it was on her.  They did all kinds of fun stuff! We have never been away from her, unless she was with family, so it was really hard not knowing how she was doing. From what I heard, they did horseback riding, rock wall climbing, had a planned sneak out, did campfire, had a talent show (which she totally crushed with a singing solo), had a paint/food fight, went swimming, had a tea party, did crafts... I'm sure there was more but I can't think of it all! All I can really say is that it was a fabulous experience for her!

In a couple of weeks we will head back to Seattle so that she can have an array of doctor appointments... She will see the lung doc, heart docs and swallow study docs.  We will have to be there for about a week.  Carla has mentioned a number of times that we should just move to Seattle because all of the travel is such a hassle.  I'll admit I've thought the same thing... and it may happen eventually, but not right now. Oh, I forgot to mention that July 6th we had a cardio appointment in Missoula.  That went really well and the doc said that her heart function looked a little better than it did in May. Also, she had grown an inch and gained 5 lbs since May, so that was good news too! I'm thinking the beta blocker must be helping at least with her heart function, although her heart rate is still sitting in the 130s at rest, and the doctors can't figure out why.

LEGO LAND...

Carla with a robot she named "Josh Bot" 

We programmed Josh Bot to do some work on this heart.  It was a really neat exhibit. 

On a boat ride.

We made it over to the water park section of Lego land... We enjoyed the heck out of this part of the park. 
 BEING SUPER SILLY...






Carla with her cousin, Heather. 

Cousins, cousins, cousins!

Doing a craft with Heather.

Abby, Carla, Madison, Heather, Adam & little Julie in the front.  All of her CA cousins except Dean. 
WE FINALLY HAD THE OPPORTUNITY TO MEET THE GARIBAY FAMILY WHILE IN CA... THEY ARE A FELLOW HEART FAMILY AND HAVE BEEN VERY SUPPORTIVE FRIENDS.
At an outdoor store in CA that I can't remember the name of.

Look! Danger!

Carla with the Garibay sisters.

Sabrina and I, Mama Bears...

Carla and Ali, playing with snapchat.


Carla and Dean :)


Madison, Carla and Abbby... after trying some sour gummy candies...

So silly...


Eating flavored shaved ice. 


A little bouncy house action...

Hanging in the ball pit...

All the kids swimming...

Chillin at the very relaxed Sacramento airport on our way home.

Chilling at the not so relaxed SeaTac...

Of course, we had to get some Ivars!
THE 4TH OF JULY!!!
This was actually the 3rd of July, when we drove to Helena to buy fireworks from our favorite friends with a firework stand. Carla is with Drew, one of my dearest friends' son. 

Cody up to bat, playing in a 4th of July softball tournament

Carla and Ryder, watching the game.

Cheese!

Ryder will someday look back and wonder why he was making this face in every picture we tried to take of him...

The Krafts...


An Action shot...

Sparklers!
 BACK TO SEA TOWN...

Carla and I had the opportunity to visit another cousin of mine, Amy, and her husband, Jason, and son Ethan, while we were in the Seattle area this time.  I haven't seen Amy in way too many years, so this was a lot of fun. We went blueberry picking and out to dinner. They just recently moved back to the Pacific Northwest, so we also got a tour of their beautiful new home. It was so nice to see them!
Carla, picking blueberries with Jason and her cousin, Ethan.

Picking blueberries.


Getting ready for bed, Carla was really nervous about heading to camp the next day...
Chillin for a few while we waited to go to Camp Korey. They staggered check in times because it takes a long time for the nurses to get everyone's meds checked in, etc.

On the little bus from the parking lot to the camp

Carla's "Cabin" 

Her cabin was called the "Cascade Lodge"  

Walking to the medical check in building with one of the counselors.  There was about a 1 to 1 ratio between campers and counselors.  





The grounds were absolutely gorgeous

Medical checkin...

I took this picture as we left... Carla was very comfortable....
 BEV AND I SPENT THE WEEK TOGETHER WHILE CARLA WAS AT CAMP. IT WAS HER BIRTHDAY WEEK...
Cheering to successfully making blueberry pastries for Bev's birthday! 


We had our toes done...
WE CELEBRATED BOTH OF OUR BIRTHDAYS WITH LUNCH AT THE CHEESECAKE FACTORY...
Bev, with her mac & cheese burger

Me, with my Orange Chicken dish...
It has been a very fun summer so far!  

Love, Jen