Friday, August 23, 2013

New York City in Pictures - Rush Family Version

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.


  1. Sounds like your trip went wonderful and the Bird held up well. So excited about these next couple of months and the infusions. We will be keeping you all in our prayers and wait patiently for the exciting new changes in Lily! God is doing something BIG and we just have to wait for His timing. Pictures were absolutely precious of her..and looks like Daddy is wrapped around her finger! Footrubs...she has it made in the shade! LOL!

    1. She does pretty much rule the roost around here. :)

  2. Looks like a great trip! And your bird using dad as a footstool is hilarious ;)

    1. It did end up being a good trip. And we certainly crammed a lot into our one free day!

  3. I'm with Dani - I loved the "furniture" picture. My second favorite is your commentary on the beer can. So appreciate the update and you sharing the photos with us.

    1. Just wanted to clarify why the beer was in our picture - you can never be too careful. :)

  4. Just curious -- now that you're trying this treatment, are you sticking with the same GF diet? (Do they make GF Apple Jacks?)

    1. Paula - we are still doing paleo (gluten & mostly grain free diet) but the choices of hospital food are so limited that I finally told them to quit worrying about giving Lily gluten free food because they pretty much resorted to bringing her baked chicken for every meal. I thought she was going to start clucking! I just requested a regular diet and then I went through it, making the best of what was offered and supplementing with appropriate food I brought in myself.

      And no, there are no GF Apple Jacks. They are still the horrid, preservative & artificial everything, gluten and sugar filled cereal they've always been. It was a one-time bribe/cheat to help the start of our hospital stay seem a little more "fun".

      Thankfully, Lily has been tested twice now and is actually allergic to nothing (crazy, right??) so I will let her have a gluten treat on rare occasions since I know she doesn't have celiac or an allergy. While not being allergic doesn't mean she doesn't react in some way to wheat, it's not really anything that I've been able to discern as of yet.

      It's funny - your question got me to thinking that really, in all the years we've been doing special diets, the only thing I really think she reacts to is food dyes. Other than that, I'm not really all that sure that the diets have made that much difference for her. I know that doing Paleo has resulted in some weight loss for me and my husband and just a general "feeling better overall" so that's really why we stick with it. We're assuming that if we feel better, maybe Lily does, too.

      We take the diet seriously but we don't believe it's going to "cure" Bird or anything like that.

      OK - wow. That was a long reply to your simple question! But maybe it helped clarify things just a bit. Thanks for the comment!

  5. I'm glad that it all worked out so successfully and will pray for continued health for your Lily. No matter what face she shows she's terribly cute!!

    Oh, and I love New York... great to hear about your trip :-)

    xx Jazzy

    1. Thanks, Jazzy! I love New York, too - but I'm glad I don't live there. :)

  6. I'm so glad you're having this chance! I'm not sure you ever got the email I sent you in response to your "open letter" but I personally have been on IVIG every 2 weeks for over 3 years now and it has been a miracle for me. I went from being functionally blind and in danger of permanently losing my sight to having my eyesight return to being as good as it was in high school. And that's just been the tip of the iceburg for the affect that it has had on my life. I've heard a lot of other miracle stories from other patients about its affect on their lives as well. I firmly believe it's a very powerful medicine! I do sincerely hope that it can be part of the answer for you and your LilyBird. I definitely have been keeping you all in my thoughts and prayers.

    1. Kathryn - I did get your email and so sorry I haven't responded yet. I'm slowly plodding my way through the emails I've gotten over the summer now that Lily has started back to school. I apologize for not getting to yours yet but I remember reading it and being so thankful that you shared your story with me. How wonderful that IVIG has made such an amazing difference in your life - and the lives of those around you, as well. I'm excited to see what happens through all of this with Bird. Thanks so much for your prayers - they are SO appreciated!

    2. Oh I'm not offended in the least :) My life is incredibly busy, and I know yours is too! Respond whenever you finally find time - I'm not going anywhere. Brightest Blessings! =D

  7. Hi Lana,
    I just wanted to tell you how much I am enjoying reading about your beautiful family. I found you a couple weeks ago on Love That Max, and I've been reading (and trying to catch up!) ever since. I'm so glad I found you. :)

    1. Well hello there, Brigid! I'm so glad you found us - and I look forward to "meeting you" on your blog as well. Thanks for the comment. :)


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