Monday, June 9, 2014

Daniel's Adventures in Philadelphia

It's been a busy few days. Daniel is doing well, G-tube and all, and he has had a great time. There were a few worried calls to the doctor, but Daniel is fine. Tomorrow we head to the GI doctor for his check-up and Daniel has an occupational therapy evaluation later in the day. Now on to the fun stuff!

Daniel in the cockpit with his pilot's hat from Karl.
We were in Philadelphia that last few days visiting family and checking off some of Daniel's bucket list items: watching planes, playing on firetrucks (take 2), the Please Touch Museum, and the Philadelphia Zoo. A lot of amazing people made these trips possible and made them extra special for Daniel. I can assure you that Daniel ate up every minute of it. When we left the hotel this morning, Daniel frantically pointed to anywhere but the car as we were leaving. He did not want to go home! Every time we went back to the hotel, even when Daniel was exhausted, it was clear he wanted to go back out.

Karl with the FAA set up a special visit to the control tower at the Philadelphia Airport, a chance to ride with the Philadelphia Fire Department, and an extra special visit to the jet of Ed Snider, the owner of the Flyers. Ed is battling his own illness, cancer, but from news reports, he is doing well. Sadly, we didn't get pictures in the control tower, but Ashley and Kendra have some posted.

The jet

With Ed Snider's pilot who gave us the tour.
Everyone together.

Daniel riding in style with Ashley.

With Philadelphia's fire fighters.

On the runway.

Daniel decided he looked cooler in the fire department's gear :-)

Daniel's favorite place, behind the wheel.

In the fire truck with Daddy.
Us with Koca who gave a great tour!
Joe Costello, the Vice President of External Relations and Business Development at the Please Touch Museum, set up an extra special visit for Daniel after he was contacted by Fox News. Daniel had a great time and even had a personal tour guide, Koca. Daniel absolutely loved the bus, "shopping" in the grocery store, and his personal visit from a monkey puppet. He even left with a goody bag.

Daniel in the bus. He asked to come back at least five times.

There were lots of other things to ride too!

Daniel loved shopping.

The supermarket was a hit.

And his own visit from a monkey.

And the trip was still not done! We visited Grandma and Daniel picked cherries and strawberries for the first time. I have to admit that the cherries went over better.

Asleep on the way back.
Picking his first cherries.

Not thrilled about strawberries.

With Grandmom.

And last but not least, one of my best friends, Eileen Duffy, took us around the Philadelphia Zoo. She is a keeper there and not only had Daniel pet the snakes and other reptiles in the children's section, but she set up for Daniel to go behind the scenes for an alligator and crocodile feeding. Daniel loves crocs and alligators. He absolutely squealed in delight. I totally wish I had video but it was chaotic! Eileen has the photos of Daniel's reaction, which she already posted to Facebook. Daniel also took a draft horse ride, a pony ride, a train ride, and got to feed ducks! (Bucket list item checked!)
He loved the snakes and would make mommy pet them too.

No fear!

Eileen in a cool action shot.

On a draft horse.
Feeding the ducks.

Us with Eileen on the train.

Dan thought the train was super cool and looked up the cost :-) I wonder if there is going to be one outside soon! Ha. Actually no place to ride it here.



  1. What a wonderful day, Daniel looks so strong and seems to be doing well with the g-tube. If you have friends in Philadelphia, please have them come out to our Cal's Cupcake Challenge on September 20th. It's a really fun day and we hope to launch our research program soon. Have a great summer and what a beautiful family you have. I know how hard this is, and you are doing the right cherish the good days as much as you can. Wishing you all the best, and sending love and strength and support.

    1. We will share Cal's Cupcake Challenge with our friends and family in Philly and we should be able to attend as well. I admire your efforts to strengthen pediatric neurology and your fortitude in the face of your daughter's disease. Let me know if there is anything we can do to assist you as another family dealing with MLD.