Monday, December 23, 2013

When You Just Don't Know

I was sitting in the conference room at work just last week and we were preparing for an ARD meeting.  There was me, a speech therapist and also a physical therapist, both ladies who I've come to love and admire.  I had just gotten off the phone, setting up Addyson's first Occupational Therapy appointment.  The physical therapist I work with just so happens to have a daughter who has struggled similarly to Addyson.  Again--God ordained.  The speech therapist there has a daughter who is expecting who has had a miscarriage before and just telling us how she prays all the time for this baby to be okay and healthy.  I knew what she meant.  All of us want healthy children.  I don't think anyone hopes that they will have a baby who will have developmental delays.  And then she said something that has just stuck with me.  I guess you just "rise to the occasion."





Rise to the occasion.  More like sink to your knees before God.  There is nothing more humbling that not knowing what the future holds for your child.  I mean, I know none of us know what the future holds for our kids.  But most of us know our kids will learn to sit up, walk, talk, play.  It was just last night when someone talked about how Addyson would have to fight the boys off when she gets older, suggesting that she might one day date.  That's nothing out of the ordinary, right?  Why wouldn't she date when she's older?  I don't mean this to be a downer of a post, but it just really got to me last night.


We just had Addyson's 6 month neurology appointment and received great news confirming that the MRI had shown no signs of brain damage!  But the doctor couldn't tell me why Addyson still presents with hypertonia.  Why are her muscles still so stiff?  I know that I should celebrate all of the amazing progress she has made.  And I do, every day I thank God for how far she's come.  For the fact that she's doing things that I was downright told she wouldn't be doing by now.  She's rolling over, she's sitting up, she's starting to eat solid foods.  She's using her little hands to grab toys and chew on them.  It's such a blessing.

But the other part of me is so terrified.  I am so grateful, yet at the same time, so scared because I don't have any answers.  I am left to my faith in God.  And to be honest, sometimes my faith is so small at times.  When the person talked about Addyson dating in the future, it was if the world stopped spinning for a moment.  I just stared at her and tried not to tear up, wondering if we will get to share those special mother-daughter moments.


The neurologist thankfully didn't just send us home, saying, well she doesn't have cerebral palsy, good luck!  Thank goodness because I might have come unglued.  He is committed to finding out what exactly is going on with my sweet girl.  He did offer a hypothesis.  Dopa-Responsive Dystonia.  Dopa-responsive dystonia is a disorder that involves involuntary muscle contractions, tremors, and other uncontrolled movements (dystonia). The features of this condition range from mild to severe. This form of dystonia is called dopa-responsive dystonia because the signs and symptoms typically improve with sustained use of a medication known as L-Dopa.  There's a great video on YouTube you can watch about it, here.  However, I don't feel like this really fits Addyson for many reasons, but mainly because everything the research says tells me that its a progressive condition.  Addyson is improving vastly in her therapies.  However, we will do some testing right before her 1st birthday to see if this might be the answer.  The doctor wasn't pushing for testing now because she is doing so well.  She's my miracle baby.

I guess I just want everyone out there to know I am human; I don't have some super-powerful faith.  I know I should be celebrating her accomplishments, and I am.  I do every day.  In fact, she blew some raspberries for the first time today and of course I thought it was the greatest thing!  I just wish I had more answers.  I wish I knew if she really did have a stroke in-utero and her sweet little infant brain regenerated.  It's crazy, but that does happen.  I wish I knew if me or my husband carried this genetic mutation that causes Dopa-Responsive Dystonia.  We will get an answer on the latter part sooner rather than later.  The fact of the matter is, despite trusting God, sometimes (a lot of times) I yearn for worldly answers, too.


So what do you do when you just don't know?  Rise to the occasion or sink to your knees before God?  I know my answer.  I pray for strength for another day.  I pray for more miracles.  I offer thanksgiving to God for all the things he's already done in my sweet family's life.  And I repeat this scripture to myself when I don't know what else to do.


Do not be anxious about anything, 
but in everything, by prayer and petition, 
with thanksgiving, present your requests to God. 
And the peace of God, which transcends all understanding,
 will guard your hearts and your minds in Christ Jesus. 
(Philippians 4:6-7)


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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