So we just got back from New York on Tuesday.
The purpose of this trip was for Lily to get five days in a row of IVIG treatments.
Which meant a five day stay in the hospital.
I can't tell you how many times I contemplated sneaking her off in the elevator just to take a little stroll outside. But since I've pretty much always been a goody-two-shoes who follows the rules, we stayed put.
But I can promise you this - there isn't a single inch of the 9th floor of the NYU Langone Medical Center that we have not personally explored.
On the first day, Lily didn't think it was all that bad, as checking into the hospital typically means getting a few treats that we never eat at home. Like Apple Jacks, for example:
After the glamour of the forbidden snacks had worn off, we started to see a lot of this face:
Translation - I AM BORED.
And our girl became a little more demanding, requiring foot rubs...
trips to the playroom...
endless cups of ice with unlimited usage of electronics...
the use of parents as furniture...
and much lounging in the family waiting area.
After five days of the same old, same old, we were finally released with one full day to spend in the city before heading back home to Austin.
And did we have some fun!
First on the agenda was a trip on the East River Ferry...
to Dumbo, Brooklyn, which stands for Down Under the Manhattan Bridge Overpass.
There, Lily rode the historic Jane's Carousel not once, but twice. She loved the ride but took it very seriously. It was quite a hoot.
Then we walked across the Brooklyn Bridge...
and jumped on the subway.
This picture totally cracks me up because not only is Ryan's thumb over the camera, the "bigger than my head" beer ad was the first thing I noticed when I saw the picture. Plus, you can't even tell we're on the subway. But we are. And I am not drinking beer.
We got off the subway and proceeded to Chelsea Market, a pretty indoor space with lots of fun restaurants and unique shops.
For those who might be interested, Chelsea Market used to be the home of the National Biscuit Company, i.e. Nabisco. The Oreo cookie was invented here. Currently, the studios of the Food Network are on the upper floors.
At the Market, we ate some Italian food and visited the bookstore. Then we picked up some dessert and hoofed it back to the hotel to get rested up for traveling back to the ATX.
All in all, Lily was a champ and made quite an impression on the doctors, nurses, and techs who took care of her during our stay.
In case you're wondering what might be next medically for The Bird, she will receive an IVIG infusion once every two weeks for the next two months. These will be done by a home healthcare company right here in Austin, and right in the comfort of our own home.
And everyone said... "Amen".
We'll have a conference call with Dr. Najjar after the first at-home infusion so he can hear how things are going and give us more advice on what to look out for and that kind of thing.
Then we'll go back to New York in November for an appointment with Dr. Najjar. At that time, we'll discuss how we think the treatment plan is working and find out if there are any next steps we need to take. We had already decided to fly up to Virginia to spend Thanksgiving with my family so hopefully, we can combine the New York trip with that one since we'll be halfway there.
As always, we would be so grateful if you would continue to remember us in prayer. We feel confident that God is going to do something BIG through all of this - we just don't know what that big thing is. But we do know it's even better than we can imagine.
"Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen." Ephesians 3:20-21 (NIV)
Have a marvelous weekend, dear ones.
