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.


Tuesday, June 3, 2014

A wonderful ice hockey game and the aftermath of surgery

It's four days post G-tube and we're still trying to figure out this new normal. There are definitely pluses to the feeding tube. We don't have to worry if Daniel is hydrated anymore and giving him meds is...easier in a way. While Dan has this all down, I am continually forgetting to clamp or unclamp or messing something up.

The was hard enough before the surgery trying to determine if Daniel was being fussy, in pain, had a fever, or was having a new symptom. Now with the recovery from the G-tube, there is whole new category of things to add. Is it pain from the surgery? Is there an infection? Does he have air in his stomach from the tube?

Earlier today, Dan rushed down from upstairs because Daniel was screaming up a storm. He thought it was muscle spasms. Daniel was actually having a fit because I wouldn't let him play with the house phone. It's not easy figuring out what is going on with a two-year old.

In other medical developments, Frederick County Infants and Toddlers program evaluated Daniel today for speech. He is around 24 months for all the cognitive and speech categories. Since he is 34 months right now, it's almost 10 months behind the average. While that's not good for a child developing without complications, for a child with MLD, it's great. We are starting weekly speech therapy to maintain as many skills we have and to begin building new forms of communication for when his speech deteriorates further.

I won't go into the details of the hellish weekend spent in the hospital recovering from surgery. What I want to share is how much the ice hockey game with the Frederick Freeze and Jr Freeze picked us up. To say that we were not in good place Sunday morning was an understatement. We couldn't move or hold Daniel without him crying with pain. There was also an incident with the Hopkins pharmacy to get discharge meds...there may or may not have been a breakdown and tears.

 At the game, he was enthralled.


Afterwards, he didn't want to leave the BBQ and was all giggles playing hockey. It was awesome to see him laugh again. Everyone was amazing. Thank you!