So much has happened in the last few weeks.  Some good and some bad. Charlee did get her tubes put in and has been doing fine.  She did well with anesthesia and was a trooper for not eating for almost ten hours.  Within about 30 minutes after surgery, she was back to her normal, happy self.  I wasn't nervous for the procedure, but I will say, as I handed her over to the anesthesiologist, I got a glimpse of our future.  This was a short procedure and I knew she would be back in my arms within minutes with no real recovery.  But, when her palate surgery happens, I know it'll be an entirely different scenario.  there will be hours of waiting and weeks of recovery.  I try not to think about it, but it is in the back of my mind because I know time flies and December will be here before we know it.

In addition, we had a few appointments this week.  One was with the pulmonary specialist to finally go over her sleep study that was done over a month ago and one was with the geneticist to go over the testing done in the NICU.  It's amazing how long it takes to get results especially when it involves an infant, but I won't go there.  Basically, Charlee was finally discharged from her apnea monitor.  The monitor she's been on since birth and the one I've been trying to get her off of for three months, but I kept getting the run around from the cleft team...again...I won't go there.  He did say her sleep study was ok, but that she had 16 central apneas, the longest one being 5 seconds.  He began talking about needing an MRI and how the brainstorm could be pushing on the spine causing the apnea...I interjected.  I began telling him how the sleep study was a total nightmare and how she cried throughout the entire night, had an ear infection, hardly slept etc etc...with that information he automatically said that was probably the reason for the apneas and didn't seem that concerned.  All I could think to myself was...MRI??Really?? Another test, another doctor, more waiting, more worrying.  Am I being too laid back? I don't know.  I can only go off of my motherly instincts and what I see with my daughter every day 24-7.  So, he discharged her from the monitor and cleared her for surgery.  I follow up with him in 6 months and I feel good about that.   

As for the Geneticist, she really rained on my parade.  I had already been told that her genetic test was normal, but didn't know the details.  Her chromosomes are normal and they were specifically looking at chromosome 22 for a craniofacial abnormality, which Charlee doesn't have.  However, when the dr examined her, she noticed Charlee's sunken chest.  I've never mentioned this, but Charlee has pectus excavatum.  It's a dip in her chest.  We noticed it when she was born, but never thought much of it.  The geneticist told me that it's a symptom of Sticklers Syndrome.  Here we go again...Sticklers.  I heard of this in the NICU, but thought Charlee was clear of it when they examined her eyes.  Apparently, Sticklers can effect the eyes, but can also effect other things.  It's a connective tissue disorder that can cause pectus excavatum AND Pierre Robin.  Ultimately, we decided to follow up in 6 months and see if we need to do that testing.  In a way, I want to know, but then again ignorance is bliss.  I know that if she does have the syndrome, we will deal with it, but I just don't want her having any more challenges than she already has.  She will go through more at the age of 10 months than most people will go through their entire childhood or even entire adulthood.  It doesn't seem fair.  I have googled the hell out of Sticklers on the internet and have decided to take all that information with a grain of salt.  I can't process any more "what ifs" right now.  

When you have a "sick" child or a child with special needs, it can seem like your whole world is crashing.  It can also feel like the end of the world.  I hate that I've been to the doctor more in the last 6 months than I have my entire life.  I hate that I already have 6 appointments lined up on my calendar from Sept till January, and that doesn't even include the cleft team or surgery.  I hate that she was born with the cleft palate, with Pierre Robin, and possibly with Stickers.  I hate it, but I know I have a choice...I can choose to dwell on her imperfections and her daunting surgery or I can cherish each and every "normal" day I have with her.  

I love her smile.  I love her eyes.  I love how she looks at me.  I love her laugh and even her powty face. I love how she plays with her feet and how she lets me kiss her mouth. I love how she makes TJ and I laugh out loud and how she brings a new joy to our lives everyday.  She is a perfect addition to our family and I feel lucky to be her mom.