2/20/15

Seattle Doctor Visits...

Tuesday morning Carla and I flew to Seattle for a couple of appointments. Bev picked us up at the airport and we spent the day with her. We went for a walk and took Carla to Applebee's for dinner. Bev was sweet enough to let us use her car this time, so we didn't have to rent a car, which was super nice of her and saved us a ton of money. 

Carla and I left Bev's Wednesday morning by 6:30 and reported for her echo at 7:30. After the echo we did labs and a visit with Dr. Law.  Carla was not very happy with me for forgetting her numbing cream, but luckily the phlebotomists at Children's are super experienced so it was one poke and no digging.

Dr. Law was his usual thoughtful self and talked me in to switching Carla from cyclosporine to tacrolimus. Tacro was the culprit drug that caused Carla's PRES Syndrome (PRES was when she had the brain swell and turned into a zombie like shell of herself after transplant). That was one of the scariest and heart wrenching times of our lives. But, the circumstances are different and he is convinced that she will have less side effects on Tacro than Cyclosporine. And, we will not be in a hurry to get her up to a high level, so over dosing her would be so much less likely of a thing to ever happen. The plan was to start her and three days later check levels.  So, we just started her today (Friday) and will check levels Monday morning. Fingers crossed, here we go!

Thursday morning we had an appointment with Dr. Inglis, Carla's vocal cord doctor. We talked for a little while and then he wanted to scope her and see what he could see about her vocal cords. He thinks that we could have a little better success if we plump the right one up just a little more. She was sick when they did the procedure back in October and I have never felt that it was quite as successful as her trial procedure. Her voice has still been quiet and I feel like I have to strain to hear her when she is not trying to yell. 

This means a trip back to Seattle for another vocal cord procedure on April 20th, and then a trip back in May for cardiology as well as a checkup with Dr. Inglis.  I am actually trying to get the May trip moved to the first week of June though, because Carla's last day of school is May 29th. I will find out about that today. 

We flew home last night and it was so very nice to be home and with Bobby again.  There really is no place like home.

Love, Jen

Carla and I shared a croissant for breakfast on the plane Tuesday morning.  

Going for a walk with Grandma Bev.

Enjoying Grandma's onion ring.

Being a stinker... Yes, sometimes Carla is a stinker. 

Lunch while we waited for the pharmacy to fill Carla's new medicine.

This one we took special for Cody, because he is not a fan of selfies... So, every so often, I can't resist but to send him a nerdy platypus face selfie. That's just the kind of parent I am...

Bev wasn't feeling very well Thursday night, so we took a taxi to the airport.  Here's a picture of Carla on her very first taxi cab ride.
And finally, upon returning home I found that Bobby had an honorable mention in the local paper!  He has been working his bummy off to get the best grades possible.  Obviously his efforts are paying off!  Good job honey!!


2/15/15

February is half over!

Well, February is half over and I am happy to report that it has been a much better month than January!  Carla has not had any raging fevers or extended illnesses.  We had a Superbowl party and the wrong team won, but at least we got to hang out with some great friends and eat a bunch of food :)  At the end of January Carla was able to attend Ryder's 3rd birthday party at the carousel in Helena. Carla is absolutely terrified of riding the horses on a carousel, but did face her fear and rode on one. Jeff stood with her and she was still scared, but did make it through the ride. She felt very brave to have faced that fear.

I have been attending "Listening Parents" in Carla's class, the past couple of weeks. They do it Monday through Thursday for about 20 to 30 minutes per day. I love going and listening to the kids read, they really enjoy it and the more they get to read, the better they get. Carla is actually a very strong reader, I think because we have always read to her before bed. Also, she loves her technology, so I'm sure that has helped her learn to read. This past Friday I attended her class Valentine Party. The kids were all hopped up on sugar and it was pretty funny to watch them all sugared up. After the party we went to town because Bobby and Carla both had eye doctor appointments. Bobby's eyes stayed the same but Carla has a slight prescription. She can see well with her left eye, but her right eye is a tiny bit blurry.  So, we ordered her the cutest pair of lavender glasses and she will get them in a week or two. She is excited. I am happy that she is excited, but have a feeling the excitement will wain after a period of time. At this point she only needs to wear them for school.

Carla and I will be headed back to Seattle Tuesday morning for a heart checkup Wednesday at 7:30 a.m. She also has an appointment with her vocal cord doctor on Thursday. We will come home Thursday night. As luck my have it, she doesn't have school  on Friday, so we don't need to be rushing around to get her to school on Friday.

Carla and Ryder at the carousal. 

Carla and I, taking a ride on the bench. 

Standing by the horse she was riding. (This one didn't go up and down, and she rode it a couple of times)

Excited about her bubblegum ice cream.

Uncle Jeff holding her tight so that she doesn't fall off the horse.  This one went up and down. 

She's so cute. 

Yes, more ice cream... this flavor was cotton candy.

Getting ready for the Superbowl. 

Our little Wright family (minus one).

Having a patriotic moment with Russell Wilson...

The Krafts

After getting my second MMR vaccination.  The measles scare has everyone on high alert, apparently in the 90's the CDC changed the recommendations regarding the vaccination. When I was a kid they recommended one MMR, now to be fully covered they recommend two MMRs.  So, I went and got my second shot, and now everyone in our home is fully vaccinated.  

1/30/15

The End of January Ramblings...

This month for me has been unsettling and full of anxiety.  I guess part of me is still recovering from the shock that we got at Carla's two year biopsy.  When you go into a procedure thinking everything is great and then the doctors tell you that everything is not great it can be a shocker.  I'm not sure why I let myself get so optimistic. Carla's heart has not been damaged, but her having been diagnosed with the coronary disease was certainly upsetting.  It can definitely be managed, it just means more appointments and more meds.  But, the lurking possibility that it could lead to damaging her new perfect heart and eventually lead to her needing another transplant is what really made my head spin. I guess I was in too fragile of a mindset to hear those words... the world started spinning and all I could think was... I can't do this again...

So, after that shocker in December, Carla starting school again and then getting really sick right off the bat was not helpful to my state of mind.  She has had three blood draws this month, and will have another next Friday.  Then, we will be off to Seattle again on February 17th and back to Missoula on the 16th of March.  Monthly cardiologist visits is a lot. I wish that we just lived in Seattle. Today we will go to the pediatrician's office so that Carla can have a chest x-ray. I told Children's that her oxygen levels have been lower while she sleeps, so they want to get an x-ray to make sure there isn't a quiet lurking pneumonia.  I'm sure she doesn't have pneumonia, but we have to jump through their hoops so that they can figure out what the problem is. I personally think that she just needs an iron supplement, but they won't do that until they do labs on her iron next Friday. The whole system is frustrating, and I guess me not having any control over any of it is a big part of the problem. I like having control. I actually think that part of my journey through all of this is to learn that I actually have no control and to somehow be alright with that.

Tomorrow is the final day of this month, which means that tomorrow will be the anniversary of  my Mom's death. Twenty-seven years ago, I was a twelve year old girl  who lost the most important person in my life.  I miss my Mom so much and will always wonder what my life would have been like had she lived. The world was such a better place with my Mom in it. She was something special, and not just because she was my Mom. She had a way about her that made people feel important and loved.  Her smile would light up the room and her laughter was contagious. As a child I couldn't help but to think she was the most beautiful person I had ever seen. And I felt so incredibly lucky that she was mine.

So, here's to my MOM...
One of my favorite pictures - she was probably around 19, but I can't be sure.                                             
Here she is, being her usual silly self. 

This was a picture was taken when I was 12. 

So now I say, good riddance January, I wash my hands of you!  Here's to a fabulous February!!!

Love, Jen

1/23/15

After starting an antibiotic last Monday, Carla was feeling much better!  She had labs on Thursday and then Friday we were able to go to Helena for my Dad's gig at the Staggering Ox. Carla and I spent the night with our besties and then we had a Wildtree Tasting party Saturday afternoon with our other besties! Sunday was a perfect afternoon of football and relaxation.  It was a great weekend!  Wednesday afternoon Carla had a dentist appointment in Helena and directly after we hopped in the car to try to make to to Missoula before it got dark.  I can't see so well in the dark, so the last half an hour was a little nerve wracking, but we made it safe and sound.  We were lucky enough to spend the night at the Ronald McDonald House in Missoula and then attended Carla's cardiologist appointment first thing Thursday morning. Because of her coronary disease we have to keep a close eye on her heart, to make sure it isn't being damaged in any way.  The good news is that her heart still looks great!  After the appointment we rushed back to Cascade so that Carla could attend the "Disco Party" her class was having.  They had accumulated 30 class points for doing great, so they were rewarded with a party, and they voted to have a disco party.  When I went to pick her up the party was still in full swing and it was fabulous!  The kids (and Mrs. Cobb) looked like they were having a blast! This morning around 3:00 a.m. Carla cried out and when I went to her room I found her freezing cold with a fever of 100.3.  NOT AGAIN!!!  I gave her some Tylenol and after an hour her fever had risen a degree to 101.3, but she wasn't shivering anymore.  Around 4:15 she started to feel more normal and then she was awake by 5:30.  She seems alright right now, but I don't dare send her to school because she has a tendency to get fevers on and off sometimes. So, I guess we'll wait and see what happens.  A bunch of kids in the school were sick last week with a virus that involved a fever and I can't help but think that must be what she caught. So, we will just take it easy and pray that she feels great throughout the weekend (but I'm not holding my breath).  

When we got Carla's labs back on Tuesday, we realized that the lab had only tested her med levels, instead of the full panel like usual.  I have to admit that I was a tiny bit pissed off, because she had to get two pokes and then they messed it up and didn't check some of her very important levels, like her CBC, WBC, magnesium levels, kidney function, heart density.  All of that stuff gets jacked around when she is sick and those levels needed to be checked.  So, we will go back on Monday for more levels.  

Love, Jen

Last Thursday morning before labs. 


Dancing with Ryder at Dad's gig. 

Jenny, Jess, Katy and I.  My very best friends :) 

Carla and Morgan :)

Jenny and I, being silly. 

Best Friends.  We stayed up too late and Carla was pooped.  

Go Seahawks!  Carla received this cool shirt from Grandma Bev. 

At the dentist, Carla was a big girl and was able to get great x-rays this time!  

Carla and I at Dr. Hardy's office with Gabriela, the new dolly the Ronald McDonald House gave Carla. 

1/15/15

Back in the Swing

School started back up for Carla on the 5th and I am sad to say that on Thursday the 8th, when I picked her up from school she was crying and said that she felt so weak.  When I got her home I found that she had a temperature of 101.2.  I took her to the pediatrician on Friday, they did a nose swab and when it came back negative for the flu, it was decided that she probably just had a virus that needed to run its course. Carla had fevers all weekend and was nothing short of miserable! I took her back to the doctor on Monday and we were prescribed an antibiotic. She had some blood work, which showed that she is in fact fighting some kind of infection.  After that first dose of the antibiotic she was already getting better. I personally feel that we are battling the same bacterial infection that she was diagnosed with in December (or was it November or October).  I don't think it has ever fully cleared up and when they started her on a third immunosuppresant I think it gave the bacteria a chance to flare back up.  It has been so hard watching Carla suffer so much. I wish we could get her back to a good baseline and that she could feel better.  The doctors did discontinue her statin while she was having fevers, because it can cause weakness and muscle pain during fevers.  That explained why she felt so horribly on Thursday. Yesterday the docs in Seattle told us to discontinue Carla's Cellcept (which is one of her three immunosuppresants) until she is feeling better. I told them that her fevers were better but that she was still battling the cough.  They said to discontinue and that they would discuss her during their weekly meeting and call me today with a "plan".  I have yet to hear from them, so I am yet to know what the plan is.  I am hoping that it involves not starting her back up on Cellcept. In my opinion, it is ridiculous to have her on three immunosuppressants when she had a rejection score of ZERO. Yes, she has been diagnosed with coronary disease, but still, three drugs to knock out her immune system during flu season is a recipe for disaster!  

Here are some pictures from the past couple of weeks :)  

Love, Jen

Mario, before his haircut. 

Carla, playing with play dough 

Stacking...

She's pretty proud of herself. 

New Years Eve!

Dancing to Train during the New Years Eve tv program

Labs on January 2nd - she sat all alone for the first time ever :)

Snuggling up her puppy.

I mustache you a question (being silly at the doctor's office)

Snuggling :)

Burrr!!!

Mario, comforting his girl...
This morning before labs.  

12/26/14

Christmas Adventures!

We had an absolutely merry Christmas!  On Christmas Eve we went to Helena, visited my Grandpa Harrington for a while and then went to my Dad & Sue's house for an early dinner and presents.  Before dessert Carla decided that her loose front tooth needed to go, because she wanted the Santa and the Tooth-fairy to meet. After several minutes of wiggling and pulling, she had successfully removed her tooth. Shortly after we did pictures and presents, then we quickly packed up and headed home. The weather had taken a turn for the worse and we didn't want to be driving home on a sheet of ice.  Luckily, it was just a sheet of slush and snow, which is easier to maneuver than ice, but still kind of nerve wracking and scary (at least for me).  Thankfully Bobby drove.  After returning to Cascade we were able to make the late dinner and presents with Bobby's family! So, yes, two dinners and present opening adventures in one day... (can't complain here). Christmas morning Carla awoke at 6:00, so we called Bobby's family over to watch Carla open her presents from Santa and from Bobby and I.  I served up the coffee and we all enjoyed watching Carla open more presents. Tom and Amanda had to take off early, but Bobby's folks stayed for breakfast, which was nice. Later Christmas Day Jeff, Jess & Ryder came over and we cooked Christmas dinner.  After Bobby's folks finished their portion of dinner, they came over too, and we all had a nice dinner and visit. When everyone left I laid on the couch, recuperating from all the shopping, baking, visiting and cooking of the week. :)  We had such a lovely Christmas though, and I enjoyed every last second!

Love, Jen

Success!  Carla and her removed tooth.

Dad & Sue, Grandma & Aunt Diane

Opening presents!

Bill & Tristan with their dog, Bella.

This little girl was not lacking in the present department.
 Later that night... at the Grandma & Papa Wrights...

Tom & Amanda

More presents!

Socks!!!  

i-tunes!!  

You can't really see him (because he is black) but Mario is playing tug a war with Ranger in this picture.  

Tom got Mandy a laptop :)
 Christmas Morning...
Carla had asked Santa for Minecraft toys.  He delivered.


Ryder, trying to figure how to attack his gift.  

I took this photo of Mario this morning.  He was begging me to throw one of the MANY new toys he got for Christmas. Yes, even the dog gets spoiled in our family :)