ears, tummy, and more...

Last week Audra had another ENT appointment.  And we finally have a plan for the surgery to repair her ruptured ear drum (called tympanoplasty...which will hopefully improve the hearing in her "bad" ear).  It is scheduled for June 16th and she should be able to go home the same day....but we are talking about Audra, so who knows?!

On Tuesday she got her much-anticipated, very-own, pink-sparkly...hearing aids!!!
Pink glasses...pink hearing aids...she is my Pinkalicious girl :)
On Friday I will take Audra to the Audiologist to have her new hearing aids reprogrammed to "turn up" her world a little bit.  Every little bit counts.  She is talking more each day. 

Heard most often from her is...
"up please"
"stop it"
"I know"
"no way"

She can also say the names of all her family members.
We're getting there :)

Earlier this week I got a phone call from Audra's Immunology doctor.  All of the results from Audra's very extensive blood work has finally come in....and everything is normal.  So, they are no closer to figuring her out, and they remain concerned that Audra does have an underlying immune disorder that they just can't identify or test for yet.  So, for now, we'll keep keeping on.  And time will tell. 

Tomorrow Audra has a big day at CHOP.  First, she will have a breath test to {hopefully} help her GI doctor learn more about the malabsorption she seems to have. 
Then, Audra will see the dietitian, and finally she has an appointment with her GI doctor.  Multiple times over the past year, the topic of tube feeds for Audra has come up.  I have always managed to put it on the back burner...until now.  This is the day we WILL have to talk about it.  And make some difficult decisions. 

I'm ok with the tube,
I'm ok with the pump,
and the equipment,
and the supplies

I'm just worried that with tube feeds Audra will lose interest in eating by mouth,
or worse...
I'm worried she will need a special, very restricted diet, that won't allow her to eat as she is used to...
whatever she wants, whenever she wants....and eating is what she LOVES to do!

I'm praying for direction to know what is best for Audra.