Tuesday, January 27, 2009

Settling into a routine at Children's

We are settling into a routine. The Milrinone is making her feel much better. Her lungs are clearing up and her energy level is back to where she was several months ago. However, we are realizing that she should probabl stay on the Milrinone, and the attached pump and IV line, until the transplant. Hopefully that won't be too long.

We are starting to develop a life in the hospital, as opposed to suspending our lives while here. Emily is starting physical therapy, a tutor is coming every day for two hours, and she has "activities" in the activity room. They are bringing a dog in to play with her "pet therapy" and she has charmed all the staff. They still wake her up a few times a night (and her mother) and the PICC line continues to be a hassle (sometimes clogging).

We had some great visits: Lynn, Steve, and Courtney Roberts, Kathie Gow, and John Ogden. Kathie took some pictures that I will try to attach.

Emily qualifies for a "make a wish" and she is thinking of things to wish for her. If anybody has any novel ideas let us know. She has thought of doing a segment on HCM or heart transplants on the Today Show. John Ogden is trying to get olympic gold medalist Ryan Lochte to call. I have suggested that she ask for a new airplane for her family, but that hasn't really gone over well. So comment on the blog if you know her and think of things that might be impossible for her to do otherwise.

We're hanging in and appreciate everybody's support.


Coach Kristi said...

I think Emily should ask to be able to drive a car - or even a race car. I know her vision makes driving impossible, there are places where the vision impaired can go and be able to actually operate a car on a closed track. Should she not like that idea, I would really like to have a pool put in my backyard. Maybe she could get me one :)
Love you Em!
Coach Kristi

Unknown said...

How about being cast in your favorite TV show or movie, or publishing a book that you authored? If the event can wait until after you are fully recovered, how about dancing in a Twyla Tharp performance on Broadway ?
If you can't come up with anything, your favorite uncle Jeff would enjoy a complete set of post-war Lionel trains/track in original boxes. No pressure.
:-) We love you, Emilyorange
Aunt Anne

Kate Lusenhop said...

I really like the Today show idea--it's a great show and it would be fun to go to New York, too! You could see some Broadway shows, maybe shop...or if you're handing out wishes, we in Ohio could use a snowblower just now!

McHugh Family said...

We are keeping Emily and all of you in our thoughts and prayers.
Bob-I like your idea of a new airplane for Dad (Gulf Stream II?) though we will put our Thinking Caps on to try and come up with a couple of other creative ideas.
Love Tom, Wendy & Family

The Saras said...

Forget about the Today Show, GO ON OPRAH!!! We used to talk about Oprah everyday on the way to practice. Perhaps, you could invite me along and I could meet her!!!hahahaha Maybe you could ask to host the show for a week! That would be awesome.
I miss you Emily!


How about lunch with John Cleese?

i miss you emily!


Kinney Family said...

So Mackenzie was thinking you should wish to be a princess for the day at Walt Disney World. That way you could show off your ballroom dancing skills with Prince Charming. We think of you EVERY day. Keep smiling!!!!
The Kinney Family

ellen knapp said...

the knapps are praying for a great outcome.

we will work on creative wishes for you. i have a few children that are VERY creative thinkers!!