4th Birthday Photo Session

4th Birthday Photo Session

Monday, March 21, 2011


We've been readmitted.  The penthouse floor, V.I.P. status.  Bittersweet.  So nice to see many people we know and missed, but sad to have to be here again.  The Bean weighed-in less today, 12 lbs., 10 ounces.  So, she lost a few oz's in the past two weeks.  We been seen by a dozen people already. I've given the monologue several times, some more colorful than others, answered a gazillion questions, and reacquainted with the KP Attending Pediatrician whom we spent a week with last September.  She's been poked for blood, catheterized for a clean urine sample (better than bagging, less contamination possible), x-rayed, her g-tube pouched (to collect the leakage for measurement), checked by our favorite cardiologist, nutrition, visited by many Dr's, students, and our nurse friends.  All are amazed at how good she looks, how active she is, how advanced her cognitive skills have become. Other than her leaky g-tube and her need to put on weight... we wouldn't be here...so... they're on the case. 

Andi and I are in our pj's and winding down a long day.  Her with froggie, and me with some Adele, because they haven't yet implemented the adult beverage cart I suggested long ago.  I swear they could fund a new building if they did offer it up to us overwhelmed and frazzled parents. Can you even imagine a happy hour mixer in the family lounge from 5-7?!  THAT ... would be AWESOME!  I'll bring the disco ball, some Earth, Wind & Fire, and let's paint this place a new shade for a few hours!!?! I know there are parents here going through ten levels of hell.  We've been there, and it would be nice to be there to support others going through tough times.  I've downloaded and will bring Oprah's Moscow Mule recipe!  Now, there's a conversation starter!
Being away from home is going to be weird, so I emailed myself a most-precious picture I shot on my phone the other day:

If you look closely, you will see that Andi is actually holding Maddux's paw.  She loves him, and although he's really sweet with her - I'm sure he will enjoy a few quiet days without her wrecking his nerves.  At the time this photo was shot, she was in the midst of getting an olive oil treatment for her dry / cradle cap. The weather here sucks, but, it's not THAT cold.

Tomorrow will be interesting.  More tests. More visits. More question after question.  Hopefully all will help get us some answers, and a new game plan!


  1. love the lounge idea. sorry you are back, hopefully they will be able to come up with a working plan to get you out soon and on your vacation. rarely do i ask the universe for more weight, but i'm rooting for the bean. i'd gladly share if there was a transplant available.

  2. I can totally see you bartending at a hospital lounge--"So, what're ya in for?" Sounds like they are giving the Bean top notch attention! It must be nice to be there and not have her all drugged up! Is she flirting with all the cute interns already?? Do tell! :)

  3. Oh... such a bummer. So sorry. Been there, with the weight issue... not that it's any consolation or what you want to hear... what you want is an answer to the "why isn't she gaining" and an answer to "how do we beef her up?"

    Again, I LOVE your writing style... you made me smile (the happy hour!) while reading that you and your Bean are in the hospital.

    Fingers crossed for a quick stay that yields answers and solutions.