Update time!

Hello all, Steve here again! What a beautiful Sunday morning it is today! Starting the day slowly so figured I'd send out a little update. Continue to wait for the call. Health is holding steady right now, am up early during the week to take the kids to school, up in the afternoon to pick them up, take them to jiu jitsu, etc. Basically back to my normal duties as dad :) Now if I can just get back into the flow of doing laundry, dishes, and other household chores I think Renee would be super impressed, haha. 

These are happy, although a bit nerve wracking, days in the Lilly house. The kids are so excited for daddy to get new lungs. Overheard Anna telling Liam that when I get them I will be able to play tag, run around, jump in the trampoline, have so much fun with them. Fun I am unable to have in my current state. It made me so happy to hear the joy this new life will bring to the kids. They need it, my family needs it, Renee needs it, I need it!

So, the transplant. I figured I had several months to prepare, maybe even a year. That all changed when I received an email this week from my nurse coordinator up at USC. Am looking into double listing with Stanford, so sent her an email asking her to send my chart up north. She replied that it wouldn't be a problem. It was what she wrote after that put me into a little bit of shock, haha. She basically said that they have already received a lot of match offers for me, but that they are just waiting for that perfect set. Whoa. She is leaving the program at USC on Dec. 3rd and is hoping I get the call before she moves on. Whoa again. Of course, the wait could still end up being months, but to know that call has already been close a few times already is intense. 

So we continue to wait, continue to be awed by the love and generosity from all of you! Please keep on believing in the Steve ;)

Love, 

Steve Lilly

Here is a pic of Liam and I from yesterday, taken by my sister! The fam and I went up to Anthony's(Jessica's man) Folk Revival Festival in Long Beach. What an amazing success it was! Seriously! Liam loved it, was rocking out to all the music, jamming on his craft banjo, stomping his foot along to the beat(I call it the Strummer stomp, after the great Joe) taking bows after every song. It was so great! Even got his sister to join in towards the end. What a great family day!

A busted rib ain't gonna stop me...

...from making it up north to visit the Searles family! Yes, several days ago I woke up, began to cough, and broke a rib. Definitely one of the most painful moments in my life. A trip to the ER, a ton of pain meds, and an X-ray and CT scan later, it was confirmed. Non-displaced fracture of the 6th rib on my left side. A rib break and CF is one of natures cruelest jokes ever. Yeah, tell me not to cough, haha. So went home and tried to get comfortable, didn't really happen. Still painful to cough, but at least I can move and sit in a car. 

And sit in a car I did. We had planned a trip up north to visit family and I was devastated I wasn't going to be able to make it after this setback. So Friday morning comes and lucky for me Renee slept through her 4am departure time. Since I woke up at 7 and they were still home I had the opportunity to decide to tough it out and so happy I did. I love it up here so much, always go home feeling so recharged. We love it so much up here that we are actually considering a move. 

So the 7 hour car ride was a little intense. Waiting for each bump in the road to cause excruciating pain...and if you've ever driven with Renee you know there are a few extra bumps thrown in for good measure, all with an evil little smile on her face ;) 

Got here late Friday afternoon and took it easy. Yesterday we were able to get out with Jeff and Missy and check out some of the areas where we may be able to find a home, mainly driving through Livermore and Pleasanton. As is the market we barely saw a single for sale/rent sign. May make things tough, eh? After our little adult time it was time to grab the kids for a little outing, a drive up to the old little steam train at the top of Grizzly Peak in Berkely. The good pics of the kids and the train are on the good camera, but we did stop at one view point along the road for a couple pics, what a beautiful day!

And yes, we even got caught taking the picture by Missy. Sneaky...

So now it's Sunday morning, Renee is out with her sister at the Alameda swap meet, and I am just rubbing the sleep from my eyes. Oh how I, how we, needed this!

Still waiting for the call, obviously, and even with this rib break I am keeping it all positive. I have had a lot of tests thrown my way in life and this is just one more...and I will pass it. 

Thanks all for your continued support through this journey to a new life, much love. 

Steve