Wednesday, October 26, 2011

roll up your window, mom.

I cannot sing a note.  I can't even stand to hear my own voice with my own ears.  But it doesn't stop me from singing -at least when I am by myself or in front of my kids.  I have found that when things are tough I use music as a prayer, and a distraction. Why else would God give someone with such a disturbing singing voice such a desire to sing?  Everyone has had a time where they are driving down the road upset or confused or angry or  depressed and that PERFECT song comes on  that just speaks to you, that fills you with serenity or hope or happiness.

So it may seem that my perfect song lately would be a powerful ballad by Martina McBride or Sarah McLachlan.  I spent a lot of time listening to "Praise You in this Storm" by the Casting Crowns during Adeline's last journey with craniosynostosis. ( Blog Entry: My help comes from the Lord )  I was addicted to christian radio.  But this time the theme song is "I've got the Joy, Joy, Joy, Joy Down in My Heart"!  It's therapy for all of us - but sometimes it drives Nile crazy!  The part that really gets to me (even though it's sung in high-pitched children's voices) is "I've got the peace that passes understanding down in my heart". Because that is truly what I pray for now.

Philippians 4:6-8

6 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.
 8 Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.

(I also found an awesome "adult" song that I found expressing the same message: Aaron Shust - My Hope is In You  But I don't have that in my car!)

Dr. Miller's office called on Friday to let us know that they have Adeline's surgery scheduled for December 9th.  I'm not sure why it only took 2 days to schedule - either the insurance company received all that they needed and approved it extremely fast (which I doubt) or the surgeons made an exception since Adeline is already a patient of theirs and they trust that our insurance will pay.  Either way, it helps having a date.  We can plan where we are staying, make arrangements for Nile, and prepare for the weeks following the hospital stay when Adeline will be at home recovering.  And it helps me to move forward and focus on the great possibility that this will all be over soon.  By this time next year Adeline's hair could be long enough to hide her scars again.  She will be a fun, curious and beautiful  TWO year old - with a rounder head!  And, most likely, with even more attitude!?!  I can't wait!

But until then I will be cranking up the car stereo, rocking out to track #15 on Nile's Sunday School Songs for Kids CD.  So what if I'm already embarrassing my children.

Wednesday, October 19, 2011

Here we go again...

There were a couple of hours of pure denial.  I really impressed myself.  We checked out of the clinic and then listened to Nile tell us how absolutely starving he was as we drove up and down Highway 6 trying to compromise on a place to get lunch.  I have never been a good liar, and I am especially not good at suppressing my feelings in the company of a close friend or loved one. But I was coasting along pretty well.  I wanted the "everything's gonna be alright" phase to last a little longer.  I've already been through the scary, uncertain, out of my control phases of  having a child with a condition that needed surgical repair.  And I remember that I didn't enjoy that.  I'd much rather spend time in the "she's recovering wonderfully, she's very happy and normal, things couldn't be better" phase.

Dr. Puccioni, Adeline's neurosurgeon, consulted with us for at least 45 minutes, but he didn't waste anytime before telling us that she needed further repair. During her first surgery (already almost 10 months ago!), in addition to totally removing, reconstructing and replacing her posterior scalp, the surgeons remove the fused sagittal suture that ran down the top of her head as well as bone on either side to allow for normal growth and expansion of the forehead.  The "normal" growth and expansion occurs in 90% or more of  patients.  But Adeline's forehead didn't "reprogram" itself.  It continues to grow long and narrow and is not increasing in width. As a result she has more pronounced forehead, or "frontal bossing" and lateral pinching of the temples.  It is not going to get better, in fact, it will get worse.  We could wait until it gets worse - we talked about how many parents in this situation wait until their children are 4, 5 or 6 years old.  We think Adeline is a beautiful, healthy baby girl (and of course, the neurosurgeon agrees!)  But by the time she is school aged, and is developing a "sense of self", the birth defect will be very evident. He told us that he firmly believes that a person's pysche is a vital element  of her health and well-being - just as important as any other medical condition that could be caused by craniosynostosis.  So when these kids enter school and realize how different they are and the parents realize how different they are, the parents are more than ready to correct the defect.  It is inevitable.  And he would be more than willing to perform the surgery when she is older.
But there are too many reasons to do the surgery now.  
She is still very young.  Her skull is still somewhat pliable. 
It is easier and safer to remove from her brain right now. The length of surgery will be shorter and blood loss will be less than if we wait.
She most likely will never remember the surgery.
She has a pacifier, a blankie, loves to be cuddled and rocked, sleeps in a crib, and goes to a home daycare.
She won't care that her hair is shaved.
She won't have to be taken out of school or miss out on summer activities.

So this stinks. It's almost worse now that we have been through it and know what to expect.  And I know things could be a lot worse. We are sooo blessed.  I know things will turn out fine - that this has to be done.  But I still despise the fact that it does.  
We have been enjoying our family of four lately. Nile played T-Ball this summer - Aaron coached.  And he started all-day preschool this fall.  We have been busy with school activities and watching Iowa Football and playing outside and spending time with friends and our extended family.  We haven't had much free time to worry about anything.  Adeline and Nile are young and naive and happy and fun and spoiled.  This is what Aaron and I have looked forward to since we first fell in love.
I know that this doesn't take this all away, but it doesn't exactly fit in my perfect plan.

So now we are back to waiting for the insurance preauthorization process.  Dr. Puccioni's (Neurosurgeon) office contacted Dr Miller's (Craniofacial Surgeon) office today.  They will write letters to the insurance company and wait for the insurance company to authorize the surgery before they will schedule it.  Luckily, our insurance is Blue Cross Blue Shield, and since one of the big-wig's sons was born with craniosynostosis, they usually authorize quickly.  I hope I am more patient this time.  It would be nice if she could have it done this year since we have already applied payments to our out of pocket maximum.  But it's not our priority.

My love for her grew so fast during the last surgery and recovery - I can't imagine how I will feel when this is over.

So I'm back to obsessively kissing that (not so perfectly round) head of hers.