Here's the Deal

timanneI write about The Kid’s neck saga here often, but in the interest of providing you with real details to pray for/think about/send non-religiously-specific love and light on behalf of, here’s the email update I sent out earlier this week. Your encouragement and support mean the world to our family–thank you for being a part of this story with us.

 

 

Dear Friends,
With our family preparing for some major developments with James, we wanted to update you about what’s coming next. We value your thoughts and prayers and all the support you’ve provided in countless ways.
After exhausting every possible (and less invasive) avenue to correct James’s neck tilt (including PT, outpatient surgery, therapy collars, and Botox injections), our neurosurgeon recommended an inpatient surgical procedure that will involve the following:
–another release of the left side neck muscles by the same craniofacial surgeon who performed the last one a year ago, since without correction of his bony anomaly the muscles have tightened back up;
–shaving off the outer part of the first bone in the spinal column (C1 vertebra)–specifically, the part that is tilted upward and pressing against the skull and possibly some nerves in that area;
–placement of a device called a halo. The halo consists of a ring that encircles James’s head at the eyebrow line, and some (7-12) pins will project inward from the ring and through his skin just up to his skull, providing torque that will keep his head in an upright, centralized position. Metal “uprights” will come down from the ring and insert into a vest around James’s torso that render his head/neck essentially immobile, thereby maintaining the head position and allowing for healing of the shaved vertebra. He will wear the halo for a number of weeks, possibly up to 3-4 months.
The surgery will take place next Wednesday, January 8, at an estimated start time of 12:30 pm (we’ll get a call the day before with the definite start time) at Children’s Hospital of Atlanta, Scottish Rite. Two doctors (the craniofacial surgeon, Dr. Williams and the neurosurgeon, Dr. Brahma) and an orthotic specialist (Richard Welling) will be in the OR performing the release, C1 adjustment, and halo placement, respectively. The procedure should take two and a half hours and be followed by a possible night in the ICU or direct movement to the hospital floor with a 2 day (or longer–up to a week) stay.
Okay. So those are all the names and technical details. Here are the issues really weighing on our hearts and minds, for which we’d love more of your thoughts, prayers, and support:
James can’t go to daycare while wearing the halo, so I will be staying at home with him. He requires constant one-on-one supervision as the halo cannot be taken off. It weighs about 5 lbs and will affect his balance-essentially, he’ll have to reorient his movement, walking, sleeping, eating, playing, EVERYTHING–according to his new head position. Mr. Welling told me that it will feel like walking down a flight of stairs while looking straight ahead. James will not be able to bend at the neck, only at the pelvis. So you can imagine the adjustments in daily life this will require: feeding him, playtime, walking, getting him in/out of his crib, changing him, dressing him–all these daily activities will be different, and a lot of that we’ll figure out as we go. Which is NOT our preferred method of doing things, by the way–we are planners, and we are definitely not in a plan-friendly season of life right now.
So Jason and I need prayers for patience, strength, and all that good stuff as we enter what will undoubtedly be a physically, emotionally, and mentally trying time. We are especially not looking forward to adjustments in sleeping, since James likes to move around a lot during the night and sleep on his stomach, neither of which he will be able to do–and neither of us particularly enjoyed sleep training the first time around. (Read: WE HATED EVERY SECOND OF IT AND NEITHER OF US DOES WELL WITHOUT SLEEP AND PLEASE GOD SAVE OUR MARRIAGE.)
Please pray for James’s protection from falls, which can be damaging and just need to not happen–and that’s a huge burden of responsibility that falls upon whomever is watching him. (Read: James is two and two-year-olds can basically fall down while standing still so this is scary.)
Please pray for the surgery itself: safety, no complications, doctors’ wisdom, etc. And for the annoying little detail about the late start time meaning we will have to deny him food and milk from the time he wakes up on the 8th until the surgery is over, meaning we will have a hungry toddler on our hands who doesn’t understand why he can’t eat. Then we will take that toddler to the hospital and wait for two hours in the surgery center before they call him back. Good times. (Note to self: check on CHOA’s BYOB policy.)
Some of these concerns are small and some huge. I have no problem telling you that I am not up to this assignment; I am imperfect and weak and impatient and prefer to be in control of every little detail. But there is good news for all that, and all of the above:
None of this is an accident, or an aberration from the plan specifically designed for us and James. I know everyone reading this represents a variety of beliefs, but here is ours: this upcoming season is in many ways where we have been headed all along, even though we had hoped to avoid it. But since we haven’t, we know that we are being led and held through it by a love that is stronger than our (my) need for order and control and predictable outcomes. And since that love is ALWAYS with us, it means that we don’t have to wait until this is all over to be joyful about it and thankful for it. Even though it sucks that James has to endure what hardly seems fair, we know that there will be beauty and redemption in it far beyond anything we could have manufactured for him on our own. So though there will be plenty of tears and frustration, there will be so much more–and that is where we hang our hats. Or halos, as it were.
Please feel free to forward this to whomever you think may want to be involved in praying for/thinking about James, and we’ll update you on how the surgery goes. Now I will get to work installing a wine bottle donation center by our mailbox–we especially like reds and champagne.
Love,
Stephanie, Jason, and James
11 comments on “Here's the Deal
  1. Marjorie says:

    Steph: Our entire Sunday school class prayed for the three of you by name on Sunday. And we will do so again this Sunday. And I will be praying lots before, after and in-between! Many love and prayers to you and your family. We’ll anxiously be awaiting good news post-surgery. XO, Marjorie

  2. Beth says:

    You can do this. Thinking ahead about all of this can be mind-boggling and seem just TOO MUCH. I’ll be praying for you every day and of course, that includes The Husband and the Kid. And when things get to be too much, just think: this, too, shall pass. (And think about the summer when all of this is over?)

  3. Beth says:

    P.S. Don’t ask for patience, God will give you the opportunity to practice it! LOL!

  4. Christy says:

    Oh Stephanie, I am so sorry that James has to go through this. I will say this, as hard as it may seem for James, he will have very little memory of it one day. I know going through it won’t be easy for any of you, but take some comfort in that. Our love and prayers will be streaming your way.

  5. Susan Kolander says:

    Stephanie, I have known your Mom since we were little girls. I am so sorry to read about the problems you and your sweet little boy are having. I will send a prayer request to Frazer Church and to “Walk to Emmaus”. I have been requesting prayer from my prayer warriors for many years now and I can feel each and every one of them. Please know that God is the great healer of EVERYTHING. My son, was murdered almost 5 yrs ago and without MY God to keep his arms firmly around me and my family I would now be here now. Your faith will keep you sustained and YOUR loving Father in Heaven will keep you and your beautiful little boy in His care.

  6. Elizabeth says:

    Stephanie, I will be praying for all of you beginning right now! I will also pass this on to other prayer warriors. Let God carry you through this. God bless you!

  7. Amy says:

    Stephanie, thinking and praying for James and for you and Jason.

  8. Bob ginn says:

    Stephanie and Jason – Claudia and I pray for you two, handsome James and Elizabeth everyday. God will “balance the scales for James” and the future will be bright. We will also remember red and champaign in our prayers going forth! God Bless you all.

  9. Danielle says:

    I’ll be thinking of you all and praying for all you asked. Be gentle with yourself and each other. If we were neighbors, i’d be dropping off a rather large case of wine right now.

  10. Jessica Ginn Boehm says:

    Stephanie, Jason, and James I dreamed of y’all last night and woke up praying for you. Today is a big day. I carry each of you in my heart and will be praying for all the names and circumstances you mentioned in your post. You are loved.

  11. Caroline Kocher Dana says:

    Stephanie,
    I just saw your story posted on Facebook and stopped everything to pray for you and your family. I will continue to pray for the doctors and hospital staff taking care of James, for an easy transition for James as he gets used to his new life and that there will be no falls, and well and peace, patience, wisdom, and rest for you and your husband! I will keep praying and I will get my small prayer group to pray too! God Bless!
    Caroline

Leave a Reply

Your email address will not be published. Required fields are marked *

*