Rejection Score

We received a couple of emails from Children's yesterday. First of all, Carla's rejection score was a 1R, which means there was some mild inflammation but nothing that they would try to treat. Her rejection score has always been 1R. They spoke about her at their weekly meeting and have decided a couple of things. First of all, we don't have to see a cardiologist for 3 months! Which means we don't go back to Seattle until February!!!  We have literally been to Seattle every month for the last three months, so it will feel foreign to be away for so long. Secondly, they want us to do a sleep study for her, because her oxygen saturations drop while she sleeps. Thirdly, they want us to collaborate with an Endocrine or Adolescent Medicine specialist, because her anti-rejection meds can interact with the statin she takes and cause side effects related to hormonal regulation. We will talk to Carla's Pediatrician and find out if she has any suggestions, or if we will have to go back to Seattle for these things.  Fourthly, they want us to make sure that Carla eats a regular diet that includes healthy saturated or cholesterol rich foods, since she is not using the statin to manage high lipids... "She should strive for healthy, lipid intake" ... I guess  I'm not exactly sure what a healthy lipid intake would be... but maybe bacon and eggs for breakfast? I'll do some research, I'm sure this will not be a problem.

We could not be happier about the results that we got this year for Carla's biopsy/cath! What a huge relief.

School starts Monday for Bobby and Tuesday for Carla. We are still in the middle of building our "apartment" and our whole house needs to be packed. I'm sure it will all get done eventually...

Love, Jen


Heart Cath/Biopsy day

Carla's heart cath/biopsy was scheduled this morning at 11:45. We had an amazingly smooth check in and couldn't believe how fast everything was rolling.  I almost made a comment about it, but then thought it might be bad luck, so didn't. Unfortunately, even though I didn't say anything, the Nurse Practitioner came in and advised us that there was an emergency and that our doctor needed to do a cath on another patient. We could either wait, or reschedule for another day. At this point it was about 12:15 and in preparation for the procedure, none of us had eaten. And, it would be at least another 2 hours before they could do Carla's procedure. I entertained the idea of rescheduling, but Carla was like NO - WE ARE HERE AND WE WILL WAIT! She was already gowned up and settled in.  She wasn't about to repeat this day. So, I gave her the ipad and she started watching a show. It was about this time that I received a message from a fellow heart mom that I had met on Facebook. She and her son had just arrived for their surgery check in. So, I left Bobby and Carla in the Blue Zone and walked back into the check in area to meet Kasha and Mitchell. Mitchell is also a heart transplant recipient and suffered from some of the same complications Carla had. They both have seemed to take the most difficult medical road, but are both miracle children.  It was such a pleasure to visit with them and I am so glad that we were finally able to meet.

At 2:20 we were finally able to head off to the cath lab. Carla giggled as she breathed in the bubble gum laughing gas and was out like a light. After an hour and a half, the heart cath doctor paged us and we met him to find out how things went. He said that things went well and that Carla was doing good. He was a little bit surprised that her coronary disease actually looked a bit better this year than it had last December. Her heart pressures looked good and her lungs didn't seem to have a problem oxygenating the blood properly. There has been question about her lungs because of her extensive history with lung issues after the Fontan. As we were talking to the cath doctor, the other doctors were preparing her for a stress echo test. We were told that after that was finished we would be re-paged.

We were paged about an hour and a half later and I was able to go back to the recovery area where Carla was waking up. While I was in the recovery area Dr. Law called.  He had left the hospital and wasn't sure if he would be back before we were discharged, but wanted us to know that he had just looked at Carla's echo. They were able to get her heart rate all the way up to 180 beats per minute without her having any heart abnormalities. Dr. Law was very pleased. As are we!  We are now back on a schedule where we will be seeing the heart docs every 2 months, instead of every month!  This literally cuts our doctor visits in half!  We were happy and finally released from Children's at 8:00 this evening. We are flying high and feeling so incredibly blessed.

Love, Jen


Busy Busy!

We have been super busy with getting the house ready for the new buyers as well as building our new digs!  I am a little stressed out, because if we are not done in time we will not have a place to move all of our stuff... but excited about the change and what it means for our family.  This weekend we were forced to take a little break from construction so that Bobby's band could play Rockin The Rivers (a rock festival in the middle of nowhere).  We spent two nights camping, drinking, listening to bands and enjoying the good company of some local band friends. It was a lot of fun, but now we are home and have to hit the ground running.  Bobby and Roger are doing some framing today and later this week we  hope to get the rest of everything ready so that we can have the drywall hung and then tape and textured (hopefully next week..) Our carpet should come in the last week of August, so if everything goes as planned we will be right on track for the September 3rd closing date. Next weekend we will be headed back to Seattle for Carla's 3rd annual biopsy (her new heart anniversary is actually in November, but we moved the date to August so that we know she will be well enough for the procedure.) Last time they found the beginnings of coronary disease and she has been on a statin since December.  So, we are hoping that the narrowing has gotten better (but especially not worse). And also hoping for no rejection. As far as Carla goes in general, she is doing really well and I can't see any reason for concern.  She has a lot of energy (when she wants to) and has been enjoying summertime life. She will be headed into 2nd grade this year, and I cannot wait to see what she is going to accomplish.  The teacher she has this year is new to Cascade, but from what I've heard she is fabulous! I will plan a meeting with her and the Principal after we get back from Seattle, just to make sure we are all on the same page. Last year Carla had some physical education limitations, so we need to know if that is still the case. Also, I like to make the new teacher aware of Carla's limitations with regard to catching and hanging on to colds as well as the fact that she misses a lot of school for medical appointments and blood draws. AND, that she HAS to have water AT HER DESK, in her cubby is not good enough. I have to admit that I am NOT looking forward to the rushing around that Carla and Bobby starting school again is going to create. But with them at school I know that I will have some time to get settled into the new place.  It will be lonesome though with the two of them gone all day again.

I will make sure and update after Carla's procedure next Monday!

Love, Jen


The Winds of Change...

Little known fact, our house has been on the market for about a year. It is a specialty house and we figured it would take a long time to sell, and we were not wrong.  But, it's crazy how fast everything can change! Last Friday I received a call from our real estate agent, Robin, saying that there were some people who wanted to see our house Saturday morning. Bobby was out of town for a gig, so his folks kept Carla late that night while I hurried about getting the house ready to show. Showing a house is different than cleaning a house.  You have to REALLY clean it and then make it seem as though nobody lives there. The whole process usually takes 3 to 5 hours, and this time was no exception. Saturday morning I put the finishing touches on the house and went to Roger and Tammy's to chill out, have breakfast and take a shower. Our house was to show at 11:00, and at about 11:03 I looked at Roger (my father in law) and said "Do you want to go for a drive?"  So we, being the small town folks we are, did a drive by to see if we could find out anything about the people looking at the house. We found out that they were from out of state, which we thought was promising. At about 11:15, we saw the prospective buyers and their agent drive past Roger and Tammy's and about an hour later I got a call from Robin. "The showing went really well..." They had some questions about the amount of our taxes and utility bills and I spent some time gathering all of the pertinent information. By around 5:00 or so, we were made an offer on our house! We countered, they offered and then we made a deal! Our sale is contingent on the sale of their house, which is set for September 1st, so our closing date is set for September 3rd. It's crazy how everything can change so fast, and then you have to really make decisions about what you're going to do.

We are currently beginning construction on an apartment in Bobby's folks' basement, essentially turning their home into a duplex. It is really exciting because we will still have about 2500 square feet, but we will still be downsizing quite a bit. Having to relocate to Seattle for a year and a half for Carla's heart really made us realize how quickly everything could change for us - and that having to drop everything and move can easily become a reality. Dropping everything and moving is hard to do when you own a house. So, this will be a good solution.  

Monday, Carla and I will be going back to Seattle to see Dr. Inglis (her vocal cord doc) on Tuesday and Dr. Albers (a transplant doc) on Wednesday. She also has an upcoming biopsy/heart cath set for August 17th. We are hoping that the heart cath will show improvement to the coronary arteries, since she has been on a statin since December when they noticed the narrowing. 

Love, Jen


Summer time...

We have been having such an amazing and blessed summer!  On the 4th of July, we had a gathering at my Dad and Sue's house!  My Uncle Norm and Aunt Donna were visiting from Las Vegas and brought their grandson, Ethan.  Ethan is also 8, and the son of one of my favorite cousins (in case you haven't figured it out... all of my cousins are one of my favorites).  As you can see in the pictures, Carla LOVED her cousin Ethan!  In fact, she smothered him with so much love it was hilarious...

After lunch at Dad & Sue's house, we picked up my friend Jenny and came home for the 4th of July festivities in Cascade.  Bobby's parents and Aunty came over to watch the fireworks and it was such a beautiful night! I really didn't get a lot of pictures because I was "enjoying the moment" instead of documenting it.  But I promise, we had a terrific time! We found out that our dog, Mario, is not afraid of the fireworks and it was fun that he got to enjoy the festivities as well.  Who has ever known a dog that's not afraid of the 4th of July!?  Pretty amazing!

Monday, the 6th, Carla got a much needed haircut!  She has such thick hair!  It is pretty much the same length, but much easier to get a comb through.  Which was very needed!
This, she may someday kill me for... We were going through Carla's closet as well as old dress up clothes... Of course, she HAD to get all dressed up!  What a little darling!!!

We also celebrated Cody's 22nd birthday this past week!  I can't believe how the years have flown by!  I also cannot believe how much joy our sweet sunny son has brought this family :)  





Continuing with our vacation post... Thursday night after dinner we walked down to the ocean... here are a couple of pictures of Carla, loving the ocean... 

Friday we made our way further down the coast... We intended on making it all the way to Eureka, CA, but realized on the way that a) Eureka was WAY TOO FAR and b) if we went all the way to Eureka we would miss the Trees of Mystery in the Redwood forest, and the Gondola ride that we were planning on taking. So, we ended up stopping in Brookings, OR. Unfortunately, our good luck with finding a Comfort Inn ran out, the Best Western was booked and the only other place with a pool ended up being somewhat of a flea bag. But, we survived!  Carla swam, met friends and had a fun time.  And we had no reason to linger in the morning, so got an early-ish start Friday morning. Here are the pics from Friday and Saturday... 

A lighthouse that claims to be "the most photographed" lighthouse in the world.  

Carla and I with the lighthouse.

As we made our way down the coast we found this... it was pretty cool.

Most of the Sea Lions had made their way south, but there were a couple...

Say Cheese!

Carla, reading the information to us...
Around 10:00 a.m. Saturday morning, we made it to the Trees of Mystery in Klamath, California. We loved this place and spent a couple of hours hiking around, taking the Gondola and finally having some lunch.  It was a lot of fun!
Carla with Paul Bunyan and Babe. 

Carla and I, with Paul & Babe.

Even better!  Family Selfie with Paul & Babe!

Hiking to the Gondola.

Posing with trees.

Bobby and I, Carla wanted us to pose like we were getting married, because people get married in that spot. 

In front of the alter at the Cathedral Trees (where people get married).

Look at that huge tree behind us!

Getting on the Gondola 

Taking a ride!

First time any of us have ever been on a Gondola family selfie!

We were way up there!

At the top of the gondola ride. 

Carla is becoming quite the budding photographer

Carla and Bobby with some cool carvings on the way down... 

Our tired Toot with the "Pooped Logger"


And she's spent....
We left the Trees of Mystery around 12:30, and we were all pretty tired. We would have stopped around 4:30 or 5:00, but we found ourselves in the middle of Wine Country on a Saturday and there were no nice places to stay.  So, we made it to Sacramento around 9:00 or so.  Rina and the twins (Abby & Madison) came over to Auntie Jeannette's house to welcome our arrival. 
Carla and her cousins, getting their Minecraft on.

Sunday morning (Father's Day) we had a family breakfast with the Yims!  Carla got to meet the rest of her California cousins. 
From left to right Dean, Adam, Madison, Carla, Abby & Heather.  

Digging for worms.
After Breakfast we decided to go to Old Sacramento and check out the train museum.
Everybody hold hands!  

Carla and Abby

cousins at the Museum...
After the train museum we got some lunch and then met up at an Ice Cream shop called Gunther's...
Carla and Madison, with ice cream faces...

Now Abby joins in, with her ice cream face! 

And then we got Heather in the shot too, even though she seems to know how to not get ice cream all over her mug :)  
Monday morning, Heather, Madison and Abby had art classes. We took Carla to the doctor because she had been complaining of ear pain - turned out she had swimmer's ear!  She had been swimming almost every day before we left for Seattle and then Wednesday, Thursday and Friday at hotels. We got her started on some antibiotic ear drops.  Later in the day the girls came over to Jeannette's house for a visit and we all ended up going to see Inside Out and having dinner together too.  
Singing and dancing with YouTube.

Heather is such a little darling.

Cousin Wayne

Madison and Carla...

Auntie Jeannette playing while Carla sang.
Tuesday we were going to go to San Francisco but decided against it because Carla's ear was still hurting.  We thought we would give the ear drops another day before we took her out on the more than likely windy bay.  We did, however, buy tickets to take a five hour tour around San Francisco on Wednesday. And, we got some long overdue visiting in with Beth. 

Wednesday we got up ready for adventure!  To be safe, we gave ourselves two and a half hours, even though two hours should have been ample.   But, we didn't want to be stressed or rushed, so figured earlier was better.  Unfortunately, there must have been some kind of traffic disaster, because traffic was backed up starting around Berkley and we spent about an hour waiting in line to pay our toll to cross the Bay Bridge. It was evident that we were going to miss our tour... and that all the money we spent on it was going to be lost, because the tickets clearly said "no refunds for missed tours"  Luckily, the tour company called while we were stuck at the toll. I explained that we had been stuck in line at the toll station for over an hour, and they offered to reschedule us for the next day instead. We were super relieved! We thought about turning around and going back to Sacramento, but then decided that since we were there anyway, we would do some of the stuff that our tour wasn't going to have us doing...  Mainly, we hit Fisherman's Wharf and had lunch at Bubba Gumps.  It was pretty cool :) 

At the end of the wharf, with Alcatraz 

Also with Alcatraz

Carla, taking a picture of Bobby and I.

At Bubba Gumps 

Look what we found!  A giant heart for our little heart baby. 
After lunch at Bubba Gumps.

Thursday morning we were more prepared!  Wednesday, after getting stuck in the toll "cash" lanes, we figured out that we needed a Fastrak to get through there in a timely manner.  After some investigating, we figured out that we could purchase one at Costco in Sacramento. Auntie Jeannette took me there and I was able to purchase what we needed! Woot Woot!  As I as setting up the account Rina came over, she said that she actually needed to buy a Fastrak, and since we didn't need it after Thursday, we just signed up all of her information to the device and then gave it to her after we were done with it! Thursday we left the house an hour early than we had on Wednesday, and we had the Fastrak. We passed through the toll station, in the HOV lane like a boss!  There were no lines and no waiting!  We were stoked! We ended up at the Ferry Building an hour and forty-five minutes early for our tour, but it was cool because it gave us time to wander around, eat some dairy free pastries and be calm and ready for the day!  And the day was FABULOUS!

dairy free pastries  
Carla and I in front of the Ferry Building

Bobby and I with the city behind us.

Bobby and I with the Ferry Building in the background

Carla and Bobby with the city behind them. 

The first part of our tour was to take a ferry over to Sausalito and have lunch.
Bobby and Carla on the Ferry
We found a fabulous place to have lunch called Napa Valley Burgers
Trying out a local beer (one of my favorite past-times).

With,  literally,  the BEST burger I have EVER eaten in my entire life!  

At Napa Valley Burgers (they have the same look on their faces).
After lunch we met up with the rest of the group at this fountain, and boarded a shuttle bus, which took us over the Golden Gate Bridge, and to the Golden Gate Bridge Park.

Silly on our bus.

Oh happy days...

Golden Gate Bridge Park

Bobby :)

Carla and I at the Golden Gate Bridge Park

After the Golden Gate Bridge Park, we continued our adventures... this is the Palace of Fine Arts, it was built for the 1915 World's Fair, and restored in the 1950s.  You may recognize it from a bunch of different movies.
Our little Wright Family,  minus one.

Two of my favorite people.

After taking photos at the Palace of Fine Arts, we headed over to Alamo Square Park to see the Seven Sisters (Seven Victorian Homes built side by side on Steiner Street). These seven Painted Ladies were built in the 1890's and have appeared in many movies and TV shows, you may remember them from the beginning of Full House.

After seeing the Seven Sisters, we headed over to an Episcopal Cathedral called, Grace Cathedral.
In front of the Doors of Paradise, these doors are replicas of the famous doors by the Florentine Renaissance Master, Lorenzo Ghiberti (1378-1455)

From the Grace Cathedral we drove over to the Cable Car Museum and walked through China Town and to a fortune cookie factory.
In front of an old cable car.

Walking in China Town

Eating a little fortune cookie pancake. 

After walking through China Town, we headed over to walk Lombard Street, also known as The Crooked Street.  It was a difficult trek, so Bobby stayed with Carla while I took the beautiful walk.
One of the turns...
A picture of me at the bottom of Lombard Street.

Friday morning we got a late start for Boise to see Adam and Jennifer. We had stayed up visiting with Beth until all hours of the morning, so we needed the extra sleep. Our time with the Yims was so much fun and we are very happy that we finally had a chance to visit. Since we made it to Boise pretty late, Jennifer was already in bed, but we stayed up visiting  with Adam until we couldn't keep our eyes open any longer, he is such an awesome big brother and I am so blessed that he is mine. Saturday morning they took us to check out their gym, Bronco Crossfit, and then out for brunch, ice cream, and meandering in Boise. Fun was had by all!!!   

Jennifer & Adam

Carla and I with Adam & Jennifer at Bronco Crossfit

Eating ice cream at Goodies, in Boise.
Carla with Aunt Jennifer & Uncle Adam, at Goodies .
Sunday morning we started our way home... Carla had to say goodbye to her new doggie friends, Jill & Olga...
Love you Jillie :)

Saying goodbye to Jill & Olga

We had a short but sweet visit with Adam & Jennifer...

It was such a treat to spend these last two weeks with family and seeing the sights together.  All that being said, it is wonderful to be home. Home Sweet Home.

Love, Jen