Thursday, August 22, 2013

A day in the life

 Jensen is now 18 months old!! That seems so unreal to me, where has the time gone?! So I thought I would do a photoblog to show you what its like being a super cute superhero!

We do this almost every day. He loves to walk laps around the yard while pushing his toy (which he totally doesn't need to walk, but he insists on pushing it everywhere!)

I love that fluffy cloth diaper butt of his!

I wasn't kidding, he LOVES to push this thing around every day!

Any time he hears a car (or lawn mower or airplane) he starts waving! He's the neighborhood greeter!

He thinks mommy is hilarious =)

We read...all.the.time. His favorite book is Me & My Dad, closely followed by the Llama Llama books

Jensen is busy being ridiculously gorgeous most of the day.
Yes...he loves to play with my phone. Elmo Calls is his favorite app. He signs "juice" to ask to play Elmo. How that association happened I have no idea??

This is his mad face bc I took something away from him! He's got his daddy's temper ;)
He's cheating! He puts the sign for "eat" and the sign for "more" together and this is what he does! Little stinker always finds shortcuts!

This big smile is because I fed him roast and potatoes. He seriously love to eat!! 
He's such a daredevil and loves to climb around on things

Snackin' with Elmo

While I'm cooking he likes to busy himself in the kitchen too. He gets out our boxes of K-Cups and throws them everywhere! We find coffee in odd places these days.
Working on his ride =)

Showing me his scary face! hehe, I love it!
Oh how he loves snacks

This is the look I get when I tell him no! He puffs his chest up like he's some kind of wild animal. Haha...there's only a certain amount of ferocity when you are wearing nothing but a Charlie Banana.

Its been so rainy this summer he's been sporting his rain gear a lot!

Rainy day ensemble #2
And he also love the iPad. What can I say he's an Apple fan! His favorite app is Mr. Potato Head

I have to give him millions of kisses bc he's so darn irresistible!He likes to give kisses back, but he doesn't actually kiss you, he just makes the sound...its adorable.

This is his "Bat-Mobile" that he loves to ride! He is also showing me his silly face haha!

He crawls all over me! I'm his personal jungle gym!

He love getting dirty! It makes me cringe but he has so much fun!

Getting some practice in...

Monday, August 5, 2013


Our Philly trip was so exhausting! I had all these plans of getting to relax and sight-see and shop. Not so much. It was a great trip but it took us a few days to recover from it! We stayed at the Sheraton in University City, which is where we always stay. I can't say enough good things about the staff there. They have gone above and beyond to make our stays as easy as possible.
Jensen hanging out in the hotel lobby

 After a very long day at the airport on Friday, we got up early on Saturday for Heart & Mind Education Day at CHOP. Jensen stayed with my mom and I walked to CHOP I realized on my walk that was the first time I had been away from Jensen in months...MONTHS!! I was like Mary Freakin' Poppins singing and skipping along on my baby-free was glorious! (Yes I do love my child, but this mama needs a break! Thanks Mom!!)

There was so much I learned at this education day that I couldn't possibly summarize it all here. So here's a few of the most important things I learned:
1. CHOP is the most amazing children's hospital in the world (literally) and every time I am there, our decision to go there is reaffirmed a million times over. 
2. The Single Ventricle Survivorship Program (headed up by our very own cardio Dr. Rychik) is pioneering the way for lifelong treatment of post-Fontan patients. They are setting screening protocols for follow up care to help catch any post-Fontan complications early. 
This is one-of-a-kind stuff, people. 
3. The future of kids like Jensen is more promising than ever before. This is a hard concept for me to grasp when I'm overwhelmed looking at all of the things that current post-Fontan patients in their 20s are dealing with. However, by the time Jensen reaches that stage, the CHD world will be so much further along because changes are happening now. Basically, it was a resounding message of HOPE. 
He decided to take up climbing as a new skill while we were in Philly
On Sunday we had a lovely brunch at White Dog Cafe, which is our absolute favorite restaurant! Jensen pigged out on a crab frittata, brioche toast, stuffed french toast & house made sausage. All of their food is locally grown and organic (my inner hippie approves of their menu).
What can I say, my boy has grown-up taste?
Having a blast in the hotel, he didn't even need toys!

On Monday Jensen had his sedated echo. They used a gas to put him to sleep. The mask had to be held over his face and it was so heartbreaking to watch. He was fighting against them so hard, but thankfully he drifted off to sleep pretty quickly. The echo looked great! Dr. Fuller even looked at it herself and was pleased with his heart function. Jensen won't need to have another cath until he's ready for the Fontan, which will be spring/summer 2014.Shew! What a relief!
Sweet baby snuggles as he was waking up from the echo

Jensen was unbelievably well-behaved on this trip. There were no incidents of crazy toddler tantrums or that familiar high-pitched scream that I always here when we are at Harris Teeter. He was so brave and dealt with all of the exams, poking, and tests that were required of him. He had a long day of developmental testing on Tuesday as part of a follow-up to a research study we are in. There were a lot of activities he was asked to do and certain toys he was supposed to play with & figure out. He was pretty cooperative and this mama was impressed!
Mouth full of Bobby's Burger Palace. 'Merica.

The developmental psychologist scored his global developmental age was 12 months. I thought this was pretty darn good considering all that this guy has been through. Let's recap: Jensen spent about 3 months in the hospital, mostly flat on his back, many weeks on sternal precautions after each surgery, suffered massive brain damage from Stage I & II surgeries, & is likely developmentally delayed just from having a heart defect in the first place. Can I get an "amen" for how amazing my boy is?!

FYI: Jensen was NOT a fan of the pool!

He's such a cool kid.

Last but certainly not least, the best part of our trip...seeing Dr. Fuller! We got to meet up with her at Heart & Mind Day. Jensen was sporting a graphic tee specially made for her. The front said "Dr. Fuller's Future Husband" and the back said "She fixed my heart. I stole hers.". I thought it was just a cute idea and I knew she would love it. I had no idea how much of an impact this shirt would make! Dr. Fuller laughed because Jensen turned into a celebrity! Everyone was taking his picture and talking to him, the press people from CHOP had the photographer come down and snap the pic below, and everyone was amazed at how awesome he is doing! One cardiologist that saw his shirt cried (she had never even met him, she had just heard about him!)!!

 I am the luckiest mom in the world to call him mine. He's done amazing things in his 17 months on this earth and I can't wait to see what his future holds. We are incredibly blessed to have such an amazing team in Philly, they have become our second family! 
And seriously, who else thinks that Dr. Fuller and I could be sisters?!