Playing Catch-Up

So much has happened since my last post and so I have a lot to share!  And since a picture is worth a thousand words, I thought I would share a bunch of those too (and hopefully they will fill in whatever I might leave out). After the wedding we went to last weekend, we packed up and headed to Birmingham for Tyler's Monday appointment. This appointment wasn't too long so we also got the chance to hang out a little (which is a luxury during tax season)!

Remember those kid games you play on long car rides?  Well I think Tyler wins for finding this truck! Also, things are much funnier when you always seem to be on a road trip!

Once we got to Birmingham we stopped for a yummy dinner! 

It was an early morning, but we made it!  Getting ready to do his lung function test-- which was 107%! They still can't quite believe it :)

More sweat chloride tests....

 Can you tell he hates wearing this around? But they make him when he leaves his room.
I personally think he is cute either way!

But apparently, a big breakfast is worth wearing the mask for!

So far, all of our appointments at UAB have been great! Tyler results look awesome to me, although we still don't know whether or not he is on the real thing or just a placebo. I cannot say enough times how incredible the staff is there! Well, after his appointment, we headed home and back to work on Tuesday. Oh, and we also had to geared up for another wedding weekend!

At the reception

Since Tyler had to be at the wedding early for pictures, Tyler's mom and I had a chance to go look at a few houses. Like I have said before, apartment living has.... let's just say... been ever so exciting. So every free chance we get to go look at a house, we go!  Tyler jokingly said to me as he walked out the door on his way to the wedding, "Go find our dream house."  And honestly, I think I did! Nothing is for sure yet, but here are a few pictures of the house!

The front of the house

The living room

 The kitchen

Formal Dining (currently a music room)

Bedroom #1

Bathroom #1

Bedroom #2 (currently a play room)

Long Hallway 

Bathroom #2

Bedroom #3 (Tyler's office)

Master Bedroom

Master Bath (there is another sink on the other side of the bathroom-- I am just not a great photographer!)

Tyler got the chance to check out the house before we left for this last Birmingham trip. I was so glad I got to go with Tyler again because this appointment was a LONG one!  On  Monday we were at the hospital from 7 a.m. until 9:00 p.m.! And for a guy like my husband, sitting this long in one very square room causes stir craziness! Since this post has been terribly long, I will sum up his appointment quickly: Tyler's lung function continues to get stronger and better (and now no one on the research team is denying it). And the other big highlight of the trip is that he starts his new pill this week the XX-770 (which I explained what we hope it will do in an earlier post).  We hope that his results continue to improve and that the drug can get FDA approval soon!! We have been so blessed by precious friends who continue to pray for an awesome overall outcome, for our safety as we travel, and for strength to get through the busy weeks. We love you all!

"For the Lord is good; His lovingkindess is everlasting and His faithfulness to all generations."

Psalms 100:5

It's Wedding Season!

This month will probably be the busiest month Tyler and I have ever experienced as a married couple.  With two weddings, a visit from my parents, a weekly trip to Birmingham, and tax season… there is just not a lot of free time. Luckily, Tyler knows how to make just about every situation into a good time.  This weekend was wedding #1. Everything was beautiful and we had a great time!  Here are a few pictures of the evening and a great video (you may have to turn off my Kari Jobe music to get the full effect) of one of our friends, who is quite the talented dancer…  David, I think you were that lady's best dance partner....ever.

At the reception. Tyler was pretty excited about the food!

The boys sporting their best poses. They always make taking pictures so difficult. So, I decided I would still post their nonsense!

Dose #1

Since I couldn’t make it to Birmingham with Tyler this time around, we were lucky that he could rope in a friend to sit with him in the hospital and keep him occupied (since he cannot leave his room all day while the researchers check everything out and we all know that Tyler would never make it in a room by himself all day!). I hated that I couldn’t be there, but Tyler (who I would bet on as being the best husband ever!) did an awesome job of keeping me posted on every aspect of his trip. Here are just a few of the MANY pictures his friend took of him. It was like I was almost there!

Tyler all packed up and walking to the car.... such pep in his step!

Dinner and....

Dessert! He had to rub this in.... he knows I love ice cream!

He made it to to the hospital!  And took a picture with Colonel Sanders... his room at the hospital is located in the "chicken wing"

His awesome study coordinator.  She is a blast! And a trooper to hop in on some of Tyler's pictures.

Getting the results of his PFT.... which have been amazing!  His highest was 106%! The study coordinators almost don't believe the results.

Sweat tests. He has to have his sweat chloride levels checked every appointment.

Taking the 1st Dose! YAY! Cross your fingers its the real thing!

Well, that was his first trip! I get to tag along with him next time and enjoy all the fun, so more posts then!

House Hunters

I think Tyler and I have just about enjoyed apartment living to its fullest.  And while Tyler and I have begun to talk about the idea of moving, I can't get too excited just yet because I would risk scaring Tyler into his non-commitment cycle where his mind becomes crowded with fears of mowing the lawn, fixing a broken toilet, etc. and so we have to ease him into the idea of being a home owner. To be clear, neither of us are "do it yourselfers" -- which is why apartment living sounded awesome. But our recent mishaps at the apartment have proven otherwise! Since time is scarce around our house with tax season and now the recent clinical trial, we have only gotten to look at houses seriously one time. But here are three houses we liked:

House #1

Our favorite part of this house! 

The BONUS room!

Too small of a kitchen!

House #2

My favorite...so far!

The deal breaker on this house for Tyler....the toilet does not have its own door....so sad.

House #3

Tyler's favorite... so far!

We had so much fun looking at different houses and what I loved about it is that it allowed me to get to learn new things about Tyler. For example, some might think a "make it or break it" part of a house for a guy would be a "man cave" or an awesome backyard for grilling (all of which my husband would love!) but what has surprised me the most is his deep need for a door in between the toilet and the vanity in our master bathroom and the important fact that the TV absolutely should not be placed over the fireplace. His designer taste have given me the best laugh! Gotta' love that guy!  We have made no final decisions on buying a "premade home" (as Tyler would call it) or building...but I hope we do soon!  We will keep you updated!

We're In!

Tyler and I just got back from Birmingham and he made into the trial!  We couldn't be more excited!  We actually found out some more interesting details (some that are revisions to what we previously thought):

First of all, this is a worldwide trial. So Tyler is one of 50 throughout the entire world in this particular cohort. Crazy!

Secondly, Tyler actually made it into Cohort One which, was definitely surprising since we had first thought he would be in Cohort Three, then we were told there was an opening in Cohort Two. But the researcher cleared up the details for us when we got there.  Apparently, since the trial is worldwide, some of the current events had delayed its' start.  As a result, Cohort One did not start on time and a few people were unable to be apart of it (which is where Tyler's spot comes in).  So He made it into the first group and the second group is, in fact, full but it has just been delayed until after the completion of Tyler's group. Again, we are pretty excited!!

We also learned more details about what the medications themselves.  This may be completely unscientific, but here is how I understand it...  Tyler will be put on two medicines.  The first one, known as VX-809, will draw Tyler's CF gene, known as Delta f508, to the surface of the cell.  Then he will take a second pill, VX-770 which will begin to help the cell work properly.  The research article I posted a few days ago shows the results of how just the VX-770 pill worked in patients with the CF gene G551D and since their gene is already located on the surface of the cell they didn't have to take the VX-809.  But they had a drastic improvement in lung function.  So we hope the combination of the two will have the same impact on Tyler's gene!

Thanks again for your prayers!  We have a busy month ahead of us and I am sure by the end of it Tyler will be tired of my serenades on the long drives! Luckily for him, a friend is going with his this week since I need to be at work. This should give his ears time to recover :) 

So Faithful

"How great is the love the Father has lavished on us, the we should be called children of God!
And that is what we are!"

1 John 3:1a

When I met Tyler, it didn't take me long to figure out how much I loved this guy.  And now, almost six years later, I am so happy to be his wife and I honestly couldn't imagine my life any different. Which is why when the phone rang the other day, I could't have been more thrilled!

A few months ago, I had found out about a breakthrough clinical research study for Cystic Fibrosis patients and called Tyler's doctor and our local CF Foundation to see what the buzz was all about.  After hearing the exciting reports, Tyler and I began to plan and pray that the Lord would open up doors for him to be a part of the trial.

At first, we found out that our local hospital was not involved and since the trial requires weekly trips to the research facility at the hospital, it seemed like it might not be practical for him to be a part of it. But we felt so pulled to be a part of that we continued to see what "close" hospitals were involved. After a few phone calls, I found out that the University of Alabama Hospital was offering the trial and we immediately made an appointment. At our appointment, we were told that Cohort One  (or group one) of the trial had already started and that Cohort Two was full. However, they planned to open up the last and final Cohort Three in several months and that at that time Tyler could be considered to fill one of only 50 spots.  And so the wait began!

As we left our appointment, the research team said that we could call back in a few weeks and check in on the status of the phases so we could better prepare ourselves for how long the wait would be. And if you know me.... I need a schedule! So as soon as I felt like it was socially acceptable to begin pestering them....we did. (Luckily the staff there is amazing!) When we called, they notified us that they were just starting Cohort Two and so it would be several months before they even opened Cohort Three.  But that was okay, because they reassured us that Tyler was still a strong candidate!  In this moment, I pulled out my calendar (an obvious safety net) and began to mark the day when I felt like it would be appropriate to make another inquiring phone call. But I love God... He knows I'm a planner and so it wasn't but two days later that Tyler's phone rang....and it was someone from the research team.  One of the CF patients had dropped out of the trial and there was one spot available in Phase Two.  And they offered it to him!

So Tyler and I head to Birmingham this week so that he can be screened, which is the last step in the consideration process. If he meets all the requirements for the trial, he will be in and we will start our weekly drives to Birmingham for about 5-6 weeks. It has been awesome for me to see how God has worked out each part of the process. And while Tyler can't understand my knack for being so Type-A (control issues anyone?), I am reminded that the love God has for Tyler is so great and while I may not be able to piece every part of this together, I serve a God who "causes all things to work together for good to those who love [Him], to those who are called according to His purpose." So I guess that is reason enough to give up a little control!

 If you think about us over the next several weeks, we covet your prayers!!  My most selfish prayer is for him to get the actual pill and not the sugar pill (but we won't know....so I am definitely going to have to let God take care of this one!)

P.S. In case you were wondering about the trial.... the results of a similar trial (for CF patients with a different gene mutations) were released and we are excited about them so far! Tyler's trial will be just a little different but check them out the details for yourself here:

http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/2-23-Phase-3-Study-VX-770-Shows-Positive-Results.cfm. 

Isn't it Ironic?

Living in an apartment has definitely been interesting!  Not that I am complaining, considering Tyler and I lived in about a 300 square foot house prior to moving into our two bedroom "mansion" apartment, its just that others continue to tell me that the biggest perk of living in an apartment is the worry free maintenance.  Well that sure hasn't been a luxury around here and when our most recent adventure occurred, I couldn't help but share....

So our dish washer has been leaking and even though we didn't have one of these things in our last place, I think I can put two and two together to know that water all over the kitchen floor is not the norm (although it has made mopping the floor much easier!).  Nevertheless, the lady at our apartment complex found it necessary to walk me through the steps of how to run a dish washer, turns out my original thoughts of put soap in, lock door, and turn dial to on, were all necessary steps in the process.  Anyways, after she ruled out the idea that I may not be the cause of leak, she decided to send out a "technician". The first visit of our handy "technician" ended in him saying that their was not significant evidence of a leak and that the cause was unfound.  Nice...so I let it continue leak for awhile... not wanting to deal with the issue or take another lesson in how to turn on your dishwasher. I was afraid a user manual might be involved the second time around.  But eventually the flood waters became too much and I called once again to report the incident.  This time around, the "technician" left a polite note on our door reading: "Please call the front office and tell them where the leak is coming from and what you think is causing it. I could not find a leak."  Frustrated, I unlocked my door and headed into the kitchen only to find the result of a "non-leaking" dishwasher.  Apparently the water covering my kitchen floor was still confusing to the technician? Oh ironies!

But all this happens for a reason! And I am glad I have a husband who can make me laugh through all the silliness. (Plus, it has pushed us to look for a house but more to come on some of our findings next time!)