Zadie turned 2!

Zadie turned 2 on Friday!  She had a fun day, spent some time at Jonathan's preschool, then we went to Chuck E. Cheese and then out to dinner.  For the first night in over a week, she didn't need oxygen while sleeping.  Yesterday, Grandpa and Uncle Sammy came over.  I made cupcakes and we attempted to sing happy birthday, but it was confirmed that she really doesn't like people singing happy birthday to her.  She gets very upset!

Just an update on her progress...she is talking a lot. She still gets speech therapy once a week, and is saying all sorts of words, including uh-oh, oh no, water, wow, mouse, and the old favorites mama, dada, baba and baby.  She's getting big, too.  She went to see her pulmonologist the other day and she's now 24 pounds, which is great.  She's moved up in percentiles.  She's eating more and more.  She's also getting very fresh, scuffling with Jonathan and throwing toys.  Typical 2 year old, I guess!

Fresh out of the oven May 31, 2011

May 31, 2013

You can really see the difference in Zadie's chin from her newborn picture to her current picture.  One of the things about Pierre Robin Sequence that made it difficult for Zadie to eat and breathe was the recessed chin (micrognathia).  If she was born at another hospital, she probably would have had a jaw distraction, but St. Barnabas doesn't really do them and they opted to let her chin grow out on its own.  A plastic surgeon at CHOP wanted to do the distraction later on in order for her to lose the trach, but we decided to wait and see what happened.  So far, I think we made the right decision.  Her chin has grown out a lot and her trach is capped all day long, meaning she's breathing through her mouth and nose.  We're hoping she is decannulated (loses the trach) this summer!

Plastic surgeon follow up

Zadie had another follow up with the surgeon who repaired her palate. It's hard to believe that it's been more than 8 months since she had the surgery!  He said she looks great, and in particular, he remarked on how good her lower jaw is looking. He said that he's glad we never did anything surgically to it.  Her lower jaw was recessed when she was born (a hallmark of Pierre Robin Sequence), and it was a major reason she had trouble eating and breathing. If she had been born in another hospital, she might have had jaw distraction right away, and she might have avoided the trach. But, she was born where she was and they don't really do jaw distractions at St. Barnabas. So, she ended up with the trach. A plastic surgeon at CHOP later suggested a jaw distraction in order to get rid of the trach, but we weren't positive that it was completely necessary, and we decided to wait and see what her jaw did on its own.

It's possible that she will still need some kind of jaw surgery in the future, but right now, she's looking good! We're hoping to get rid of the trach in a few months and just keep moving forward.