Update and a Vent!

Tuesday we met with Dr. Rehbar, the very well known otolaryngologist who will be permorming Olivia's laryngeal cleft repair in June. It has been decided that it is best to fix the cleft sooner than later. Especially seeing she seems thirsty all the time.  The doctor had previously said that he felt repairing the cleft would not help Olivia's condition when he saw it in the operating room in September.  Dr Rehbar said that the only other reason for Olivia's aspiration would be a neurological disorder and where she is totally developmentally normal, he feels the cleft has to be the reason she aspirates.

All I want is for my daughter to be OK. To be able to drink a cup of water or juice. To be able to eat a popsicle or a slice of watermelon or a bowl of soup when she has a cold.  Whatever it takes to do it, I'm on board.

Now here is my pet peeve.  Olivia has a RARE congenital disease. So no, you don't know "someone" who had that.  you don't know what the surgery is like.  By the way, its 3 hours in the OR under anesthesia, while the doctor performs the whole thing robotically and then a night in Intensive Care.  Anyone with kids can relate to the scariness of the words anesthesia and intensive care.    I appreciate so much everyone who has been there for me every step of the way, even if only through a simple facebook comment or message...it truly means the world to me.  And then there is the "she will be fine".  Can you say with certainty that my daughter will be fine? And the people who are saying it, most of them haven't even met her.  Now, if you know Olivia and you know the whole story a "she will be fine" is OK.  But if you have never met her, have NO IDEA what a laryngeal cleft or it's repair is, do not say that she will "be fine". Its condescending at best. 

My heart goes out to every parent who has ever had the displeasure of sitting in the operating room waitng area while their child is in surgery.  It is a truly heart wrenching experience that cannot be described or understood until you have felt it.   What is even worse is trip after trip after trip to doctor upon doctor, procedure upon procedure just praying at each visit this will finally be the one that they figure her out and FIX HER.  I know that I am actually one of the lucky ones. I walk into Children's Hospital and I thank GOD I have Olivia.  Some are not so lucky. 

I know that Olivia is in the best hospital in the country.  They will fix her eventually.  Its just been a very long road, but we are up for the challenge.