Drs, drs, and more drs.

Yesterday, Lillian saw her pediatrician for her 13 year well child appointment.  I really had no concerns, yet I left and cried most of the way home.  Basically, we discussed lots of STUFF.  Feedings, puberty, rashes...STUFF. ** shout out for a 6% BMI**    Basically, what got my tears a rolling was a "let's talk to ENT and see if there's anything that can be done in her mouth to help her swallow".  Maybe nothing can be done, but maybe something can.  Well, the history of her life started rolling in and all those mouth surgeries and the difficulties of them flooded me.  Even though I knew this was just a "let's see", the past overwhelmed me. Add to that the gentle yet glaring reminders of her developmental delay in ALL ways, and the way she's choosing to cope when she's hurt or sick....TOO MUCH for my Mom heart and mind.  I am trying to make this brief here...give you the highlight reel (terrible attempt at humor much?) and is that high light, highlight, or highlite??? I digress...By about 4:15 I was getting a call for an appointment for today for an ENT and she already had her appointment scheduled for her pulmonologist down there this afternoon. They want me to come at 830 am, I eventually tell them I cannot do that. so they put us in for an appointment at 1130 nearby Dr. Lungs.  I was totally dreading the whole entire thing.  So, after arriving early and waiting nearly an hour and a half past our appointed time, we were taken to a room.  Let me set the mood, it's almost one oclock, I've had nothing to eat, so I'm hangry, and I'm about to be late for her next appointment in an unfamiliar area, AND I already have stress mounting up.  THEN, they come in asking what her difficulty breathing issue is...UM HELLO, that is not why we're here.  They ask again, and then I express to them that I'm not sure why the insisted we be there today when they clearly don't have time for us.  I really have no idea where the miscommunication came from, certainly not me and I'm not even sure the ENT had a clue what I was talking about.  Her "assessment" was that her mouth looked like it should for all the work that's been done in there and we could ask her plastic surgeon to see if he thought a scar retraction surgery would be beneficial...  and then somehow she rolled into her needing a sleep study and a speech eval from the ST that works with them OH and do we want a hearing test and gosh those tubes maybe should come out that have been in her ears for 12 YEARS.....and all mind you in a rush rush rush bc she knew we had another appointment right around the corner. She (DR ENT) did perform a scope while we were there, which I wasn't anticipating and couldn't prepare Lillian for....basically, I'm supposed to get back with her when and with what I want to do to proceed...and NONE of these things could turn out to help and could actually make things worse, the scar retraction surgery for speech and swallowig.  

So, head over to DR Lungs, of course I have to write down her new tests and we've now had  a head CT and a scope up the nose.  ( which by the way the scope showed everything wide open, whatever that means)  I finally start to cry, but reined it in.  (I had ugly breakdown at church with some friends before I left last night and they all prayed with me)  He didn't feel a sleep study would be beneficial or necessary....and I'm over here like how did this whole day turn into a breathing issue?  I guess the only real outcome of this day is that we are going back to her gentamycin year round because she's had a rough winter with having sinus problems which then lead to asthma problems.  She's also suffering from some perioral dermatitis and DR PEDS ordered a cream for that

Her eye is STILL bruised.  Her glasses were reordered and came quickly.

I'm tired.  It's been an emotional and exhausting two days.  Thanks for reading this book if you're still hanging in there.