So Special.

This is our latest family portrait. Can you feel the love?

Simply the Vest

Just a quick update, the vest went well! We used it last night and this morning and I'm happy to report there was minimal crying.. such a huge improvement from the hospital trial! We're trialing this brand for 30 days and will then try a different brand after this one is up. So far, so good!

An Update on J

As I was browsing back through my most "recent" posts (I'm not sure April is considered recent anymore...), I realized I never gave much of an update on J. Here are a few things of major or minor importance for those of you who want to know how he's doing.

Since April...
- J beat C. Diff! It lasted for 4 months and only went away after a total of 57 days of antibiotics (first Flagyl, then a course of Vancomycin, then a 40 day.. YES... 40 day course of Vanco), a strict regimen of Saccharomyces Boulardii  (probiotic yeast) and daily bleaching every surface in our home for about 2 weeks straight! I was convinced we weren't going to beat it... ever. When things like that strike, it's pretty hard to see the forest for the trees. We are so grateful we beat it, and are super aware now of his diapers and his "normal" so we can catch it quickly if it ever strikes again. (Interesting note... we had J on a quadruple dose of the yeast to try to give his little gut some extra help. After he was off of the Vanco, I neglected to wean his yeast intake. Yup, that led to an overgrowth quickly! Poor little guy. Just shows that too much of a good thing can be a bad thing). Oh yeah, and that 40 day period? I'll likely be blogging about that... quite the interesting little spiritual journey God took me on.

- C Diff almost always causes weight loss, and we have been "yellow lighted" by our clinic a few times since his bout with it. The discouraging part is that he's eating really well and getting lots of calories. He is active on an entirely new level, though... so I'm sure that has something to do with it. Working with our clinic on his weight gain is definitely difficult because I feel like we are constantly trying to push J beyond his normal limits when it comes to eating and to his size. I know this is a very common struggle in the CF community, so I know there is a lot of support and some great ideas out there... I just always prefer the easy path (don't we all!?), so I'm sad I don't have a butterball.

- We are soon getting our vest! We are trialing two separate types of vests and then making a decision after the trials. I am nervous/excited/sad/happy that this time has come. Yes, I am a tangled cord of emotion! I am happy it means we can possibly streamline some of his treatment time, but sad this phase is over.  Like with breastfeeding/pumping. I couldn't wait until it was over, but once it was I cried for about a week just at the fact that he didn't "need" me anymore. This is the same feeling, he is becoming less dependent on me for small things.
I am nervous because he loved hated his appointment at the clinic when he tried on the vest. He laughed and giggled screamed bloody murder as long as it was shaking. So.. we'll see. Here is a video of a cute little girl trying her vest for the first time... I can dream, right?
 

-He has still decided not to talk, so we are seeking help through speech therapists. However, he is making great strides! He can sign about 10 words now and has a few words that we think are actually words to him.  He has no problem communicating, so we are just trying to build his confidence in his abilities and hope that (just like walking!) he decides it's worth something to him. I'll keep you updated!

He is such a funny boy with a great personality. He loves to throw, loves to laugh when things are silly, loves being outside, and loves the zoo (!!!!!).  He is also so good and obedient... he is a great listener, which I'm so thankful for! Here are a few new pics of our sweet little man.

A sneak peek of the floors! ;)

Yes, I know he has food on his face... mom of the year!

Laundry Room!

One of the many projects we've been working on this summer is the spider haven laundry room. We moved out of our home for 3 weeks to have our carpet ripped out and the hardwood floors re-finished. Although I love the floors now (don't worry, you'll see pics as soon as I find a rug and the baseboards are in their rightful place), it was a pretty tough feat. Moving out of your house and back in in 3 weeks with a toddler is not at the top of my "Favorite Things" list, but I am so glad we did it. Just wait until you see the pictures.

But, while we were gone, my sweet dad decided to build us a laundry room. Our laundry room "before" looked close to this, even though this is a "progress" shot, believe it or not.

There used to be a furnace here too, with a crooked washer and a dryer.. creepy!

Okay, I'm about to get all Pinterest on you. I found some fun ideas on there for decorating, although I don't love the idea of everything being super funky and unique in our entire home. So, this was a fun place to "play" and I think it turned out great!

Shelves were found in the crawl space and painted white. Then, we cut down the old laundry room door and made it into the counter!

There's a wall where there used to be peep holes through to the crawl space! I have a fear that there is someone living in there and he watches me do laundry. Yes, irrational but a fear nonetheless.. now, the fear is gone!

The floor still needs some TLC but that's the least of my worries now! And, the crawl space door looks deceivingly cheery. My dad even turned the knob around so that we can lock it from the outside (I told you it was a real fear...).

I painted this last night to cover the electrical box. One of my life verses I've adopted. :)

Thanks Dad for taking away my excuse to hate the laundry! Well, actually... I still don't like it, but I do feel happy when I get to walk into this cheery little room!

Mayday!

Well, it's been awhile!
There has been a lot going on in our household (and in my heart) and so I purposely took a break from blogging for a while. But, it's finally time to write some of the blog posts I've drafted in my mind, hopefully I can remember all that's happened since April!
There are a bunch of things I want to post about, but let's start small. I usually post a marathon post every few months, but here's to trying something new and breaking that up a bit.
Let's start with May.
May 21st was Salt Lake Great Strides 2012.
Our team, Jason's Journey, raised $7,525!!! That's $4,000 more than we raised last year. I'm still in shock over that. We also had over 100 walkers on the day of the walk (We had 130 sign up!). I am not sure if I will ever be able to put into words how it feels to see over 100 people wearing a shirt with your child's name on it and stepping out to support your family and the life of your child and many others like him. It is humbling, emotional, inspiring, _________. (Fill in the blank with your best warm and fuzzy word). We even had friends from California come out for the walk and a sweet friend from small group (who currently lives in Nashville) plan her visit so she could be here for it.
I have been trying to gather pictures together over the past month or so and have been somewhat successful. Here are a few shots from Alex Gallivan, one of the event photographers who generously donated his time and talent to this event!

Most of our team!

Matt got to cut the ribbon with a little boy who has CF

p.s. I'm sending out the thank-you postcards in the next few weeks, once I get a few more pictures ready! So, expect one by August 1st if you donated to our team!

That great friend I told you about? She spent a full day at my place hanging out with mutual friends, eating Cafe Rio and watching tractors with J from our front porch. (Oh yeah, we had a water main bust in our cul-de-sac, thankfully it ended up on the city's tab!). We all got together the night of the walk and celebrated her return visit. There is nothing like getting together with some of your closest girlfriends at a great restaurant (Trio) and laughing, reminiscing, and catching up. We had a great night and made a late-night run to SmartCookie for some mighty delicious cream cheese frosting smothered almond cookies. Kalyn, you are dearly loved.

We also had a small group barbecue for Memorial Day which was great! Here's just one pic of J from the picnic... he decided to "parade" around the park the whole time pushing an older boy's scooter... complete with his American flag pinwheel! Such a sweet boy.