Wednesday, April 27, 2011

Breathing Easy...

...for Josie.  When Josie was hospitalized in August, we learned to amend any encouraging news with the statement "for Josie".  In other words, "Her lungs sound clear...for Josie" (i.e. not compared to a healthy person's lungs, but good in relation to the mysterious health anomaly that is our Josie). 

Today Josie had a check up with her pediatric pulmonologist and overall, it was quite encouraging.  Her lung function appears to be improving, granted she still doesn't have healthy lungs.  Her pulmonologist ordered a 3 night trend without oxygen in which he receives a reading from her pulse oximeter that tells him how well she's breathing throughout the night.  If she can maintain her saturations in the 90's with minimal desaturations, then she may be able to ditch the oxygen!  WOO HOO!  Now here's the "...for Josie" qualifier: we have to keep the oxygen around because should she get a respiratory infection in the future, she would immediately become oxygen dependent until she was well again. 

But overall, today's visit was a great one!  One of the PICU nurses came in and couldn't believe how much she's grown and how healthy she looks. I said "Please tell everyone upstairs(*ahem* especially Dr. Doom & Gloom) how well she's doing!"

In true Josie fashion, she enjoyed her outing and turned on the charm for the medical staff.  She couldn't stop doing her new signature move: the two-armed wave that looks like she's stranded on a desert island trying to flag down a rescue plane.   
She can do the traditional wave with one arm but most of the time she finds that it isn't sufficient enough to denote the level of enthusiasm she is feeling so she frantically waves both arms.
It's definitely a crowd pleaser and it sets her apart from the rest of us boring folks who settle for that passe one-armed wave.
She also saw the nurse practitioner for a quick check of her Mic-Key button.  He wrote a prescription for an ointment to help stave off the granulation tissue that appears to be forming around the site.  We're looking forward to going to the Down Syndrome Clinic in a couple of weeks to meet with the feeding therapy team and gain some insight on how we can help Josie ditch that Mic-Key button once and for all! 

Our sweet girl is making progress and that makes for a good day!


  1. Our girls are so similar!!! Addy's originally pediatrician was so negative about her when we first adopted her. How she would always be sick and her lungs would always be awful. Yes Addy just had pneumonia but it's the first time since February 2009! You go Josie girl, you rock! We love you!

  2. It's always nice to come home from the doctors with good news or even no new news. So glad to hear that your little Josie is doing well.

  3. She's so bright and cheery. Love it!

  4. Hooray for progress! I love that she waves with two arms...that means she is twice as excited to tell everyone hello than the rest of us! I hope Dr. Doom and Gloom gets the message loud and clear that Josie is one tough cookie!

  5. Yeah for such great news! Oh my goodness as she grows she just keeps getting CUTER! Love the wave Josie girl!