Monday, December 23, 2013

Laryn-go What?

So it's been a while.  We have been busy with Addyson's therapies, Thanksgiving, preparing for Christmas, and enjoying being a family of four.  Evenings are kind of chaotic around here; attempting to take care of the baby and get the other one fed dinner and bathed and all of those things with the nighttime routine (some nights with more finesse than other nights).  The difficulty level of this is definitely multiplied by 10 when John is at the fire station!  Not to mention the failing efforts to take care of my own health and well-being. Going to the gym has slowly fallen to the wayside lately.  These last 15 pounds of baby weight will just have to wait, or I'll have to find a little more will-power after 8:00pm when the kids are in bed!

We had Addyson's 6 month pediatric check-up as well as her neurology check up in the last week.  More on those in the next post.  But before that, we went to see an ENT in late October and pulmonologist in early November.  We've also started seeing a chiropractor weekly and began using some essential oils.  We've definitely been busy!

I guess it was about at 4 months that I decided that I was still very concerned about Addyson's breathing.  Remember, when she was born, the NICU nurse came to check on her because she had such a weak cry.  Well, ever since she was born she's just sounded "congested."  It just never went away.  Her opthamologist thought it could have been something with narrow nasal passages.  So, I took Addyson in to the pediatrician's office because she was beginning to cough.  I knew that it wasn't just a cold--I explained to the doctor that she always sounded this way and basically demanded a referral to an ENT.  I've learned that if I don't fight for Addyson, no one else is going to.  She's not your average baby and let's face it, that's what pediatricians normally see, average kids.  So I went with my intuition, knowing that her breathing wasn't right.

We met with the ENT and we got a suspected diagnosis of Laryngomalacia.  It was funny, John was with me and he looked at me and said, "don't cry."  But I suppose I am past that--to me it was just something else to add to what makes my little girl who she is.  I knew that something wasn't right and I was happy to have someone tell me I wasn't crazy.  Let's face it--sometimes I feel a little crazy when it comes to Addyson.  I try not to be paranoid, but she's got quite a few little quirks.  He referred us to a pulmonologist and we met with him about a week later.  He confirmed the Laryngomalacia.  Basically it's (literally, "soft larynx") is the most common cause of stridor (or congested-like breathing) in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction.  He let us know that we could have a bronchoscopy done and potentially have surgery but that she didn't sound severe and that since she was eating well, to just give it time.  He told us that swallowing could make eating solid foods difficult.  But the great news is that most babies outgrow this condition by the time they are 18 months old.  So in the grand scheme of things, it's not a big deal.  We just have to take extra precautions with food.

Some days I just look at her and marvel that she's mine.  I think about how honored I am to get to fight for her.  I praise God for planning things for her before she was even thought of.  Who would have imagined that I would become a diagnostician working with severe special needs children giving me access and knowledge that would enable me to care for her in just the right way.  I'll be honest, I was terrified when I was told my assigned job.  I had never worked with kids who had high needs before.  At most, I worked with some kids who had high-functioning autism.  My mom worked with adults who had disabilities and lived in group homes.  My sister works with high needs kids through ECI.  But me--I had just been a 6th grade math teacher.  What did I know?  What a crash course it's been for me--getting to learn so much from "my kids" at work and learning from my own daughter.  How can people call that coincidence or not believe in God?  What a wonderful God we serve.  I can not wait to tell her the story of how she was so fearfully and wonderfully made.  What a glorious new insight this scripture

is to me.

Psalm 139: 13-16

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

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