Three Weeks Post Palate Repair

On Monday we had an appointment with the plastic surgeon.  She was obviously irritated that a fistula had opened up.  I asked about the possibility of the 9 days of screaming and barely sleeping causing it and she said yes, absolutely theoretically that would be a possibility.  She also added to not go down the road of "what should we have done differently" because you just can't prevent them from happening.  She said she was surprised because there was nothing that happened during the surgery that made her think Anna's chances of developing a fistula were increased.  The good news...  She thought there was a 50/50 chance that it would close on its own.  So we are praying and asking you to do so as well.  While she may be learning to swallow without having food go up the fistula and into her nasal cavity, yesterday she had less food come out her nose and today she had ZERO.  Today I am also noticing a more nasal sounding voice which (while totally backwards - it should be less nasal after the repair) is what we noticed immediately after the repair and before the fistula opened up.  Its enough to up my hope that this could heal on its own.  However we can still see a hole.  We see the surgeon again next Monday.  We talked about what if it doesn't heal on its own and I really liked her approach.  It is a bit aggressive (involves another incision but this time behind her teeth) so she wants to wait and hear what Anna does with a few words first.  If air leaks up through her fistula she wants to repair.  Otherwise we will wait and repair it when she has the cleft through her gum repaired around age 7. 

So that means we have to hit speech hard and fast to know if she needs this repair or not.  On Wednesday though Anna's SLP (speech language pathologist) was pretty direct and told me that she doesn't know what else to do to get Anna's mouth moving and air blowing out.  What?!?  She said after that she can help but as of now it is up to us to get her to move her mouth on command and blow out air.  Anna is interested and tries and tries but she just can't.  We have some tips and tricks from the SLP and we are going with them as well as stumbling on some of our own.  

Back to Wednesday.  I spent the rest of the day getting the first available speech appointments at CHOP and Theraplay.  First available evaluations are a month and a half out and I didn't even want to know how long until therapy could start after that.  So I made the appointments and then checked out Amazon and ordered a cleft affected speech disorder textbook.  I'm at a complete loss for what else to do.

Fortunately Anna is SUCH A JOY that this is just an undercurrent in our lives right now.  She undresses herself and at nap and bedtime and then repeats "uh oh" over and over until we go in and redress her.  She loves baby dolls and giving them bottles.  She dances and jumps and is experiencing sounds like never before on account of the ear tubes.  She bangs on the piano when her big sister is practicing so she gets chased.  She is just a wonderfully typical 2 1/2 year old with wonderfully age appropriate behaviors.  I never have been so happy to have a child tantrum!

Thank you for your prayers for her fistula to be healed.  If you know of any speech therapy options please pass them onto us.