Update on Zadie

Zadie (on the right) with her brother,

Jonathan, and sister, Beatrix

It's close to a year since Zadie had surgery to close her trach stoma.  She's doing great!  She's in kindergarten now, and is in gymnastics and dance classes.  She loves to draw and play with her brother and sister.  Overall, she's a typical 5 year old.  Most people who just met her recently have no idea of everything she's been through, and I couldn't ask for more than that. 

In the fall, we started noticing that she wasn't hearing very well.  At first, we thought it was a "listening" problem, but then we realized it was more likely a hearing problem.  We took her to the doctor and found out that she had a terrible ear infection along with lots of fluid in her ears.  Interestingly enough, even with a raging ear infection, she never once complained about her ear.  She failed a hearing test and was put on some meds to help clear up the infection and fluid.  After a few more visits to the ENT, and the fluid wasn't clearing up very well, as well as another failed hearing test, we were able to get her an appointment with one of the pediatric ENTs from CHOP, but at their satellite office in Princeton.  Princeton is a whole lot closer than Philly! 

We were basically expecting to hear that the fluid was still there and that she'd need tubes again.  She's only had tubes put in once, at the same time as her palate repair at 11 months.  Kids with Pierre Robin Sequence often need tubes throughout their life.  Because of the way their anatomy is, they're more likely to have fluid buildup.  Zadie's been pretty lucky in that she has only had tubes put in once. 

The ENT looked in her ears and right away said they looked great.  He didn't see any fluid.  After we saw him, she was given a hearing test.  The test went great!  There were slight issues, but nothing of major concern, and the issues could have been just because she was on the tail end of an infection/fluid problem.   

Next up, some dental issues, but nothing major yet.  And she has a follow up appointment with her pulmonologist in a few weeks.  I'm going to ask him about a sleep study for her.  She hasn't had one since before she was decannulated and she does snore sometimes, so I want to make sure she's sleeping ok. 

Morphine is good!

Today was a long day! Up before 5, anxiously waiting and waiting and waiting, and then seeing Zadie post op, swollen and bleeding. Not how you ever want to see your little baby girl, but she was a rockstar. The nurse in the recovery room said she sees kids who have had less done who are much more miserable than she was. Thanks to my PRS mommy friends, Angela and Kris, we had an idea of what to expect. I don't think you can ever be fully prepared to see blood practically pouring out of your baby's nose, mouth and trach! Uncle Geoffrey, Aunt RayAnne, Emma and Grace came for a visit and brought Zadie a balloon. How did they know she loves balloons??? Zadie was standing up and playing a bit in her crib tonight. She might have done a little too much, because she was pretty uncomfortable a little later, and they ended up giving her morphine. No need to be a hero, Zadie! Daddy's home with the doggies, and I'm camping out with Z. Oh, and it's St. Joseph the Worker Day, and we're at St. Joseph's Hospital, so maybe it's a good sign? On that note, good night!