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 :)



12/19/14

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 :)