One Republic and Sara Bareilles

What an awesome concert! We had great seats, the weather was perfect, and the music was awesome. Oh and of course we love anything we can do with Chad and Annie. It was such a fun night.

Eden Trach Update

When we were in Denver this last spring, Dr. Prager said Eden's airway had grown and seemed to be doing pretty well. The hope is she will have a good winter, her airway will keep growing, and this spring we will be able to start the decannulation process. It's weird to think of life without a trach - I can't really wrap my mind around it. I guess I haven't thought too much about it happening either just in case it doesn't happen. We will see what this spring brings and hope for the best!

It used to be that Eden couldn't breath at all without the trach. Each week when we would do trach changes we would have to be super fast to reduce the time she had to hold her breath. Now, we can take our sweet time, and she can go without the trach for a bit. She thinks its fun to leave it out for a little before we put a new one in. It's pretty cute to see the huge tan lines she has around the back of her neck from the trach collar too.

The other day when Brad was changing her trach he took a couple pictures. For some reason it seems a little red and irritated right now, but that happens a lot more as the weather starts to change. You can also see above the stoma (the hole) is the horizontal scar from the reconstruction surgery. Pretty interesting looking for sure!

We look forward to possible big changes coming soon!

Bentley + Fudgsicle = Big Mess and Happy Boy

Rio Grande Network Down Syndrome Buddy Walk

This year we were able to participate in the Down Syndrome Buddy Walk to support Lydia and the resources and programs available for her. It was so much fun to walk among friends for such a great cause. Having Lydia in our lives has been such a blessing. She is so amazing and sweet. I'm so grateful for the friendships we have with the Picketts and selfishly, I'm so grateful for Eden's sake that she will grow up having a close friend with special needs. I think there are invaluable lessons to be learned for children and adults alike to have someone with special needs in our lives. Because of Lydia, Eden will learn a different kind of tolerance, love, acceptance, and so much more by learning to love her for who she is and what makes her special. I believe this in turn will help Eden to love herself more for her differences and challenges that make her special and unlike most kids. I'm so grateful we have Lydia in our lives.

At the end of the walk, Eden went to the face painters and was transformed into a fishbowl. She got lots of comments and attention for this and I think she loved it.

Then we noticed later that Eden got a hold of the camera and got a few "selfies." When I say a few, it really means about 20 pictures all with variations of these same two expressions. ha ha

Aquarium

We have an annual pass that lets us attend the Zoo, Aquarium, and Botanical Gardens so when we have a free morning, we are often at one of these places. The kids really like discovering new things. At the aquarium, Eden loves the pool where she can touch the sting rays. She is quite brave!

Turtle Play!

The Color Run

Last year, some of my family was able to do the Color Run and had an absolute blast. This year, we made sure we registered and made it to the run. Unfortunately, nobody else could go, but we had so much fun! When we got there, the music was playing loud and there were tons of people dancing and running around and the kids were just staring and totally baffled as to what we were doing. We tried to give the kids a head's up as to what was about to happen, but they didn't really get what was going on and were way too distracted with people watching.

Every kilometer we went through a color station where we would be dusted with colored powdered. Bentley was very surprised going through the first one and didn't like it too much. In between the color stations Eden just couldn't resist herself and kept trying to clean Bentley off, which of course was driving him nuts.

With each color station, Eden got more and more excited and Bentley got more and more upset. As we would start approaching the archway of another color dusting, Bentley would turn and reach for me saying, "Mommy...mommy..." so I ended up carrying him and trying to shield him a bit through the last couple - and he would still cry. ha ha

We made it to the end though and it was way fun. Everyone was celebrating and dancing and throwing more powder at the finish line and it was fun to hang out for a bit. By this time Bentley was totally happy because he was no longer being completely dusted.

Somewhere in the crowd, Eden ended up finding a packet of hot pink powder and was so excited to throw it around. I think Bentley got the worst of it, but he was totally cool with Eden doing it.

That pink ended up being the hardest to get out. Eden's bangs had a nice tint for a few days, and Bentley's scalp looked extra pink for a while. It was all worth it though. I'm so glad we did this and look forward to doing more things like this in the future.