BIG, BIG, SIGH.

So we had our meeting with the feeding team at Children's last week.  The feeding team is comprised of speech pathologists who intently stare at your child while they eat/drink.  Olivia decided she would give them something to stare at and continuously said "my mum" while pointing at me, and saying "NO" when they told her to take a drink.   My daughter for sure.    

We had reduced the thickness of her drinks by 50% when Olivia started showing signs of aspiration again.  At that point, it seemed even at 50% was too thin, So here we are again, at "nectar thick" liquids, which to me, look disgusting and I can't imagine ever drinking them, but Olivia doesn't really know much better.

My heart is broken for Olivia.  She begs me for water.   And if I give her even the smallest sip, she starts coughing and choking.  Yet she continues to try again and again, because she doesn't give up.  She is determined.  She's been through hell and back in 20 months and not once has she stopped smiling.  Not once has she slowed down.  And when the whole world seemed to crash around me, I saw the sparkle in my little girl's eyes that told me she would be OK.  I just never had any idea it would take this long.     You won't meet a happier child than Olivia.  There is just something about her that lights up a room.  

I'm not sure where people get the idea that they should try to diagnose Olivia or suggest treatment for her.   In the past 20 months, I've done more research on laryngeal clefts and their repairs as well as dysphagia and aspiration than I probably did in my 4 years of college.  And because of it's rarity there isn't all that much research, but I found what there is!  To argue with me incenses me, and by the way, it's rude.

This is what my past 20 months has been about:

Now, do you want to try to tell me I don't know what I'm talking about? 

If I could go through all of this for Olivia, I would in a second.  It literally hurts my heart to have to put her through all that she has gone through.  I know it could be much worse, and I'm thankful that it isn't.  It doesn't make it any easier though.  It doesn't take away the sting that there is something wrong with your baby.   I think back to when I was pregnant, I did everything I was supposed to.  I took my vitamins every day. I didn't drink, I didn't smoke, I didn't even take Motrin.  I can't help but wonder, what did I do to cause this? Maybe nothing.  But it will always be in the back of my mind. 

So now I wait to hear what Dr. Rahbar wants to do next.  It's been mentioned another surgery is possible.  I can't even describe the anxiety I felt the last time she had this surgery, but if it will fix her, so be it.  Ill go to the ends of the Earth for this little angel, I just want her to be healthy!

As always, the support I have received from friends  is overwhelming. I can't say thank you enough to those who have called, texted, facebooked, or sent a card  or gift.  I would lie and say I'm fine, but I don't like to lie.  I can't ever thank everyone enough, except maybe by treating others as compassionatelyy as my friends have treated me.   :)