Sneezing Noodles

Lily sneezes noodles.  That's right.  You read correctly.  She literally sneezes noodles.  Sometimes we get a surprise and she sneezes CheeseIts.  So...yeah....we need to get that fixed.  If you haven't already read on a prior post...Lily has Cleft Palate.  She was born with cleft lip too but it fortunately got fixed when she was 4 months old.  She actually does an excellent job at eating.  Many of these cases result in food coming out of the mouth and nose.  But, Lily keeps it down really well.  The first time we witnessed the noodle sneezing was in China.  I wish I had a picture because honestly...it was so stinkin' funny!  It was an entire long noodle that shot out of Lily's nose with the tail end just hanging on inside of her nose and the rest just hanging.   For the first several seconds...Dale and I were in "shock & awe."  We just stared at this seeming phenomenon.  It was.....for lack of better words... so cool!  Cute now...but later Lily may find it "socially unacceptable."
Lily's cleft palate is a good 1.5cm wide and goes from the front to the back of the mouth.  It's like a long trench.  This makes everything out of whack.  Hence, she can't form words because think of how much you use the roof of your mouth (i.e.: DaDa).  You use your tongue on the roof to say those words.  She will need speech therapy to help her engage those muscles and catch up.  She will need orthodontia for sure.  Her teeth are way off because her gum lines are so off from the cleft.  She will need additional surgery when her adult teeth come in which entails taking bone from her hip to build in the mouth.  And she may need more surgery when she is 14/15 years of age because her nostrils may need adjustments to be more in balance with each other.  Since her cleft lip surgery, her left nostril is quite smaller than her right.

Lily did fantastic during our consults!  The first appointment on Thursday lasted 3 hours.  She was perfect!  She had many looking and prodding in her mouth and even had a fun hearing test inside a booth.

And Friday's appointment went great as well and we took in a lot of excellent information!  We loved the surgeon too!

We had a lot of time ...so we looked in the mirror... and found that Lily loves herself too! :))

Yep... double the fun!!!

But for now, we are setting up surgery for mid-May to close up that cleft palate.  We met with two different surgeons at two different hospitals.  Both surgeons are excellent and we know that we could not go wrong with either.  But, there was a difference in old school philosophy vs modern thinking.  And based on that...we are headed down the modern path that we believe is best for Lily.
Lily will also need tubes for her ears.  Based on her hearing test, she has hearing loss but should get it back with the tubes in place.

Recovery will not be fun for Lily.  Based on swelling of the mouth, she could be in the hospital anywhere from 24 hours to 72 hours.  Eating and drinking will be tough for her for about 10 days.  She is supposed to wear splints for her arms (for a week) so she does not damage her mouth.  I don't think Lily will have anything to do with that!  Scabbing should be much better by 2 weeks.  And by 3 weeks, she should be back to eating and drinking normally.

Thank you for the prayers!  We get to enjoy 6 more weeks of sneezing noodles and quite frankly...we love it!  We will keep you posted.  I have a very interesting story to write and hope to get to that in next few days.  Let's just say... it all comes down to God working in amazing ways.  We have complete peace of mind with Lily and her pending surgeries.  We are so thankful!

Happy sneezing!  And God Bless you!  Love, D&N