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