It's been a while...

I just want to say that we have a great God. I just love him. I can’t believe how he knows everything we need, from what we need to eat to how much money we need to what encouragement we need. And he has been so faithful to supply us so greatly with these and so much more. Jonathan and I received a letter from a friend of a friend yesterday. I just stood in the kitchen and cried as Jonathan read it to me. Along with the letter were gifts from her and several of her friends and family members. This girl said that she had been following our blog and praying for us. She said that she had been strengthened by our story. That is what I pray for. For so many years my sister and I have lived with CF and although most people know about it, they can’t see what this is really like. John 9 has always been such a meaningful passage to my sister and I…the disciples were questioning why a man was born blind. They ask if it was the man or his parent’s short comings that had lead to it. Jesus said that it wasn’t either of their faults, but that it had happened that way “so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me.” That is what I pray for. That makes all of this worth it. If God is working in other people because of this transplant, if this is the life that God has designed for me to have, than that is what I want. So, Carrie, thank you for the letter. God is so great : )

Here is a little update on my health:

Things have been pretty calm around here. I finished up 2 weeks of IVs right before Christmas. I had been feeling really tight and getting short of breath just by walking around our apartment. Normally I would go up on my steroids, but right now that isn’t an option. Because steroids really limit healing abilities, the transplant team won’t let me take any more. So, IVs were the only option. My follow up visit was kind of confusing…ok, it was very confusing. My lung function went up even more, but I am still so tight. Dr. Boyle said we are not going to pay attention to the numbers any more. They just don’t match up with my body. So, I’m still plugging along, trying to stay out of the cold, and doing everything I can to stay healthy.

Here is a little update on us: 

We had an amazing Christmas! We are now through the 3^rd  of 4 dates that we prayed I would not have the transplant on…Thanksgiving, the Stair Climb, Christmas, and Mary’s wedding. One more to go, but I’m just trusting God to take care of it…I know he will : ) We went to a very special Christmas Eve service up in PA, then went home and put out all of the presents! We both had a hard time sleeping…we were so excited for our first Christmas morning together! We woke up, ate a lovely breakfast of chipped beef gravy and toast (YUM!!!), Mountain Dew for me (part of my normal morning routine!) and coffee for Jonathan. After therapy we opened presents! We got ready and headed out to the Slick’s for a family open-house, and then to my parents' for the evening. I really don’t think I’ve had a better Christmas…it was perfect. We started laughing so hard with my family that I fell off the couch and all of us were crying! Needless to say, that is a pretty good workout and my sister and I both ended up in huge coughing fits! That is how you know when something is really funny : D Now we are getting back into our “normal” routine. Only 11 days till the wedding!!!

Our Christmas tree!

Jonathan making breakfast...Yummy!

Sam, Gabby, Bethany and Jonathan getting ready for the open-house.

Mom with a very sleepy little Blizzie : )

Mary and her future husband Peter <3

Dad and Blizzie after a long Christmas day!

I Got 2nd!

This past Saturday was the stair climbing race that I've been getting ready for for over 3 months now. The event was put on by the Western PA CFF chapter and was held in the Gulf Tower in Pittsburgh, PA. Rachel and I drove up Friday evening and stopped in New Stanton, PA to spend the night. The next morning she did her therapy vest and inhaled medicines, then we left. We were talking about how awesome it is going to be when we get to go on vacation and not have to pack the vest and nebulizer with us, or do therapy first thing in the morning and last thing at night.
We got to Pittsburgh with no problems and headed into the Gulf Tower. We were greeted by the directors of the CFF chapter and warned about 3 other CF patients that were there, so we could all keep our space and prevent things getting passed between them. I had no idea how sort of popular our story was with the group until everyone kept coming up and saying "Oh you must be Jonny and Rachel!" haha. The "Lungs for Rachel Slick" shirt I was wearing probably helped.
After registering, I decided to warm up by walking up the staircase. Along the way, I met a nurse named Peggy on the 19th floor. We got to talking and she told me that she had met Rachel downstairs and then wrote a $50 donation check to the CFF in Rach's honor! It was pretty awesome. The support I received for doing this fundraiser was incredible. My friends (both old and new) and family donated almost $1500 to the Cystic Fibrosis Foundation and the event brought in over $10,000!
The actual race was 38 floors up (722 stairs) in a pretty dusty stairwell. I did the course in 5:03, just 2 seconds behind the winner! I was honestly a little disappointed after training so hard for this, but I couldn't have lost to a more formidable racer. He is a hardcore mountain biker who's used to steep hill climbs and grueling courses...better yet, he has cystic fibrosis. I am amazed at this guy's athleticism and strength in overcoming CF in this way. I had to stop twice during the course to catch my breath, and could hear myself wheezing as I approached the finish. It was probably close to the furthest I've ever pushed myself physically for that period of time. The winner and I averaged around 7.9 seconds per floor and finished over 45 seconds before the next racers.
After the race there was a "survivors party"/awards ceremony. After talking with a few of the people we met, Rachel and I packed up and headed out on our 3 1/2 hour drive home to Hagerstown. The entire race and ride home I was thinking about Rachel. I was struggling to breathe for 5 measly minutes, not 23 years. I admire her strength so much, and I know she makes me stronger.

Thank you to everyone at the Western PA CFF chapter for putting the race on. I can't wait to do it next year...in under 5 minutes. Thanks also to everyone who donated! You all were a great encouragement to me and Rachel both. And thanks to Rachel. She didn't mind me coming home drenched after training in that hotel stairwell, she put up with my incessant talk about stair climbing, she supported me the entire way, and she always calls me her winner in everything. I love you, babe.

- Jonny