Check out the below links to learn more about Cystic Fibrosis, organ transplants and how to become and organ donor! 

Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Hodgepodge

Hodgepodge

It's pretty strange for us to not be posting as much as we use to. Back in Colorado or when we first got to Minneapolis we posted almost everyday. We've pulled a 180 since then. You can only write about the same version of a day so many times before you drive yourself into the twilight zone. Our brother Paul is coming to visit us for a few days starting Friday so I'm sure we will have more to post about then.

The update on how Rima is doing is similar to the last post. She is very close to the top of the transplant list in her blood group and size, so the call could come any day now. We hope it comes before 2017. At the end of the month it will have been three months on the transplant list. That was the long end of the wait time that was estimated for us by the transplant team. We are coming up on the three months and fast so we better get a call soon! Rima and I don't want to turn this waiting game into say another two to three months, especially since she can't leave the hospital till she get's new lungs!

Rima's appetite is getting better, which is great! Monday she she ate a whole burger, that is unheard of. She also ate it pretty quickly and then said she was not as stuffed as she thought she would be. Her stomach has graduated from a grape size to and egg size, his name is Egbert, respectively so. I'm going to try my damndest to make sure Egbert does not concede the thrown to Gilbert the grape, who's had quite the long rein on Rima's stomach. 

 bye bye burger 

bye bye burger 

Rima has been very dedicated to her pedometer on her phone lately. On her nightly walks she has been clocking about 1 to 1.5 miles. She has also been doing PT (reluctantly) three times a week for the past couple weeks. She has even found some new floors and wings to explore. With winter break coming up this week, many of the hallways and floors could be closed till next semester. A majority of the area Rima creeps around in, is technically the University. So we are assuming that bowling and pool might be off the table for when Paul comes, since it's located in the student union in one of the University buildings. 

Rima's main doctor has been doing the rounds this week. He mentioned something that I forgot and I think Rima had also. Once Rima and I are able to go back to Denver post transplant, she will have to come back every two months for a checkup. That's every two months for the first year and then every three months after the first year. It didn't hit me till I was driving home what that meant. That means Rima and I (because I'm her caregiver) will have to either drive or fly to Minneapolis every sixty days or so for a year and then every ninety days after that.  Just let that sit and marinate for a second. That's a 14 hour drive if you don't stop much at all. That's dirty airports and flying round trip six times in one year. For someone who get's sick every time they fly, this is concerning. 

Some people may suggest moving here permanently due to what I just explained. For too many reasons we will not be doing that. Sorry, but we consider Colorado our home and would miss it too much. It's just a lot to have sink in after I guess blocking that out or over looking that part since some other stuff took precedence. But now, with us just having all this "time" and waiting it's sunk in. Ugghhhhhh, is the feeling that hit me across the face. Whatever job I get in Colorado have better be okay with this and my standard (if not more) vacation time for actual vacation. I would really like to meet people who have to do this for other hospitals, the traveling to and from every couple or few months. I guess it's time to sign up for credit card with great frequent flyer points! 

IMG_0225.jpg
 Ginger house from Trader Joes

Ginger house from Trader Joes

 Gingerbread house we made the other week

Gingerbread house we made the other week

Lucky 2017

Lucky 2017

It's almost like groundhog day...

It's almost like groundhog day...

0