December Adventures...

This month is getting away from me, and even though I have found the time to update about some of the bigger things, I haven't updated about some of the fun stuff we have been up to.  So, here are 26 pictures from the month of December...

The other day on her way to school, Carla asked if she could have pink lemon-aid with whip cream on top after school.  It was her way of making an Italian Soda out of pink lemon-aid.  I agreed that if she drank all of her water bottle at school, that I would make her pink lemon-aid with whip cream when she got home.  She drank up all of her water and this is what she got in return.  :) 

On Saturday, December 6th, we went to the "Breakfast With Santa" fundraiser for the Cascade pool. We had breakfast, did some crafts, and Carla got to sit on Santa's lap.  She hadn't seen Santa since before her heart transplant, so it was fun to see her sit up there with the Jolly Old Elf.

 Thursday, December 11th was Carla's Christmas Program at school.  She got all ready and then snuggled up with the dog for some photos :)

I can't believe how big she is getting!  She looks like such a little lady to me.  

With all but one of the girls in her 1st grade class.  
 On Friday, the 12th of December, the Cascade after school program had a field trip to the ice skating rink in Great Falls (and I got to go too!).
With McKenzie on the bus ride. 

I needed to help another little girl who had fallen and was stranded on the ice.  When I got back to Carla these older kids were skating with her.  Everyone  helps take care of Carla...  we are so blessed to live in such a community.  
Carla with one of her classmates.  Who knew, chairs are very helpful when ice skating. 

I forgot to post this super cute picture of Carla with cousin Dusty in WA.  He is a gem.  

Eating a frosty at the airport :)

December 18th was Grandma Morgan's 91st Birthday.  We all met at Hunters Point and had a birthday lunch with her.  There are  not enough words in the world to express my love for Grandma. She has always been a source of happiness and inspiration in  my life.  I feel very blessed that we have had her all of these years.  

Through the years we have always celebrated Bobby and Grandma's birthdays together.  Grandma's is the 18th and Bobby's is the 19th.  

Carla with Grandma Sue. 

In front of the Christmas tree at Hunter's Point. 

After singing Happy Birthday :)  I sure do love these people, and am so blessed to call them my family :)


Rejection Score

Monday night Cody and Shelby drove up from Portland to see us.  They came with us to Children's yesterday for Carla's ENT appointment and afterwards we had lunch and then went back to Kerry Park in Seattle for an updated "family" picture.  After Kerry Park we came back to Bev's house and in the evening we went to Shakey's for pizza, fried chicken, video games and a little family fun before the kids had to go back to Portland.  While we were at Shakey's I got a call from our transplant team about Carla's biopsy results.   Carla's rejection score was a ZERO!!!  Which means, she is having no rejection whatsoever.  This is fabulous news, and we needed fabulous news after the not so fabulous news that we got on Monday about her narrowing arteries.  Tonight the doctors will discuss Carla's case and figure out what they want to do as far as med levels go.  So, we will know more about that plan tomorrow.  Today will be a low key day, followed by an evening flight home.  We will do labs next week and see Dr. Hardy, in Missoula on the 22nd of January.

Here are some cute pictures from yesterday :)

Love, Jen

Selfie at the doctor appointment. 

Carla with Shelby and Cody at Kerry Park

Our kids :)

Our little Wright Family


Blind Sided

Today was in short, disappointing. Carla had her two year biopsy and even though her heart has always looked great, and we have had no sign of rejection, her coronary arteries are beginning to narrow. Which, is a sign of rejection. We are on a new regimen, which adds a new immunosuppressant, a daily statin, and a daily baby aspirin. We have to see a cardiologist every month (every other month in Seattle) and Carla is not to run or sprint. The coranary arteries bring oxygen to the heart, so if she were to run, and not get enough oxygen to the heart, it could cause heart pain or even a heart attack. So, needless to say, there were a few tears involved with today's findings. But, we kept it together for Carla, and down played our sorrow. She hates running anyway, and we focused on visiting Seattle and friends more often as a good thing. What we are dealing with is mostly a precautionary form of treatment, so that's what we have to focus on. We can hopefully keep her arteries from getting any worse with the new drugs. So, it's good we caught the problem. 

Love, Jen

Here are some pictures from the day. 

Two-Year Biopsy

We are in Seattle and Carla is in recovery for the next couple of hours.  Her biopsy went well and her heart pressures looked good.  We won't know about the biopsy results until probably Wednesday, but we do know that she does have a mild narrowing of the left arterial descending (LAD) artery.  We haven't spoken to the transplant team yet, but I'm assuming they will start her on a statin.  We will know more about what the "plan" is after we talk to the team.  For now, I am just happy that we are with Carla, in recovery and that she is in good spirits. Such a big, brave, sweet girl.  We are very blessed.

Love, Jen


The Thanksgiving Holiday

Well, Carla is getting better and we had a very nice Thanksgiving Holiday!  We had the Krafts over as well as Bobby's folks. We all did a little bit of cooking, so that was nice.  Cody had his Thanksgiving with Shelby and her family in Portland and both Thomas and Mandy had to work. So our family was a little smaller this year.  But, I guess that is the way it goes.  We haven't had Cody for Christmas since.... I think 2011, because they all came to Seattle to celebrate.  In 2012, he and Tom were in Bozeman, last year he was in Portland and this year will be there as well.  So, I guess that goes to show that you give and give to your children and then they just grow up and leave you.  ;) Hee hee.  I'm glad he is independent and well and also cherish the time that he is able to visit. This year he and Shelby came up for my birthday, and that was pretty special. 

Bobby's first semester of college is coming to an end  and I am proud to report that as of this date, my hubby is a straight A student!  I can't believe that the first semester has gone by so fast! He has been working so hard with school and work.  I am so very proud of him. It will be nice to have him around a little more during the break, and then we will get used to the second semester schedule in the middle of January. 

Carla enjoyed her five day holiday from school so much!  She is not a busy body and truly enjoys just snuggling in. Friday, we actually had a busy day with her Grandma Sue though!  We met for lunch, took in a movie, did some shopping and then went and visited her Great Grandma Morgan.  It was a good day!  We don't get to see nearly enough of my side of the family, so it's always a treat.  Speaking of my family, I can't wait for Christmas Eve!  It's nice this year because it falls on a Wednesday, which is Bobby's day off, so we can go up early to visit, have Christmas chili with my Grandpa Harrington in the evening and then drive home for Christmas morning. We'll keep our fingers crossed that the weather and the roads cooperate and don't interfere with our plans!

Carla's two year biopsy is looming in our near future and we will be traveling to Seattle on the 14th of December for the heart cath on the 15th.  We will also be seeing the ENT for her "chronic sinusitis" on the 16th.  The ENT is the same doc who did the vocal cord procedure, so I am looking forward to him assessing his work.  I do think her voice is louder, although the procedure did not "cure" the cough the way the temporary procedure did.  So, I'm curious if the vocal cord is as plumped up as it needs to be.  She was sick when they did the procedure, so it makes me wonder if that made any kind of difference.  

Love and Blessings,

Carla, on her Heartiversary wearing her Doc McStuffins scrubs from Uncle Tom & Mandy.

Snuggled up on my lap the other day.  

During a break in her fevers the last week, we built this race car from Papa.  She was super proud of herself. 

Friday, being silly at Target. 

Carla and Great Grandma Morgan.  I am so glad we were able to see Grandma! It's been way too long and we love her so, so, so much!  I can't even begin to say how blessed I was growing up with such an awesome Grandma.  She loves wholeheartedly, and has no favorites. All fifteen of her Grandchildren are her "wugzy twugs", and she would kiss us all over our cheeks (as only a Grandma would).   


Down with a Sickness

Sunday at 6:00 a.m., Carla woke up with a fever and feeling super poopy.  Most recently, after catching a cold at the beginning of September, she has never been able to kick the cough that went along with it. Eventually it keeps leading to her developing another infection, and she has to be prescribed antibiotics.  I took her to the doctor yesterday and we did some brain storming.  We put her on an antibiotic she has never taken before, did blood work to find out if she has any food allergies that might point to the reoccurring cough, took a sample of her phlegm and did a total workup on her. We found out that her magnesium level is better (it was low last week); she does not have strep; she does not have an infection in her blood; she does have a bacterial infection and she is somewhat dehydrated.  I emailed with Children's and they have decided to decrease her immunosuppresent drugs until she feels better.  So, we have cut her cellcept dose in half and come down on the cyclosporine 25 mls a day.  I am just thrilled that they are "hearing" me and that instead of just continuing to throw antibiotics at this problem they are actually looking for a solution.  In all honestly, this problem has been going on since March of 2013, when she caught a bad cold that lead to a never ending cough.  It has been one never ending cough after another and Carla has taken more antibiotics than most people take in their whole lives.  It really is getting ridiculous.  We thought that the vocal cord procedure in October would "fix" the problem, but no such luck.  Today Carla's pediatrician called to let me know that her phlegm culture showed a bacterial infection and Children's e-mailed in the hopes that we could get an appointment with the ENT specialist at Children's when we are there in December due to "reoccurring sinusitis".  I am glad that they are actually starting to search for the root of the problem, instead of just treating the symptoms.  I am hoping that our efforts will get her well, and that she can be a happy healthy little girl.  Right now she is a sweet, happy girl, who suffers strongly through one illness after another.  She has no reserves for her colds and continues to suffer one infection after another.  I am sure that her continuous feeling of shitty is the normal for her, but I am hoping that one day it will not be the norm.  She deserves so much more than constant illness.

Love, Jen


Two-Year Heartiversary

This year we thought that we would do a random act of kindness, to honor Justin and the generous act of kindness his family extended to ours.  So, Carla and I baked cookies, which we delivered to the older folks home here in Cascade.  They turned out to be absolutely delicious, and we enjoyed rolling them out, cutting, baking, decorating and delivering them. 

We like to treat Carla's Heartiversary like a birthday (or as I like to call it, a re-birthday), mixed in with gratitude.  So, she received some gifts, wrote a thank you note to Justin in Heaven, and then released balloons carrying the note.  It has been a good day, and so much better than two years ago.  We are so happy to be home, enjoying family and what is our new normal.  We can't help but to feel extremely blessed.  

Rolling out the dough 

Decorating cookies

Pretending she's going to eat them all. 

Still decorating.

Opening a present from us.

She was SO HAPPY!!


Opening a present from Tom & Mandy

Doc McStuffins!

Getting ready to release her thank you note to Justin.

Watching the balloons take the note away.

Making sure Mario doesn't disappear into thin air (her biggest fear = losing the dog).

Love, Jen