post ohio

We have been home for several days now and let's just say the transition back to reality has not been easy.  An awful stomach bug has ravaged our household and everyone but Cash has been subject to the pukies. The "high" of finding answers in Ohio wore off the second the stress of finding a qualified surgeon to perform Cale's surgery set in.  To top it off, Cale has been refusing food ever since we returned home and the sight of his frail, weak body literally makes my eyes squirm.  The stress mounted on my shoulders right now seems unmanageable and once again I feel like I'm drowning in the uncertainty of everything.  I feel almost guilty admitting that things are not all sugar and spice after finding such a huge answer to prayer in Ohio but I am quickly learning that our trip there was just a tip off the iceberg.

Alex and I have been talking to as many resources as we possibly can in attempts of picking the best surgeon for Cale's surgery.  Everyone seems to have a different opinion and the responsibility of making this decision is horrendously overwhelming.  Part of picking the surgeon also involves deciding whether or not we need to travel.  From what we know, the recovery time is three to five days in the hospital once the surgery is complete and ideally I would like to stay in Missoula.  There is one surgeon here who is qualified and has been recommended to us by several people and with Cale's nutrition in danger I think we will choose to have it done in Missoula, for time's sake if not for anything else.  We are waiting for the doctors in Ohio to complete their report so that they we can get the referral to schedule the surgery as soon as possible.  With Christmas drawing near I am really hoping we get the referral soon so that we don't have to spend Christmas in the hospital.

The stress of getting his surgery scheduled and the stress of watching his little body get weaker and weaker by the day has almost kept me from tapping into the whole emotional side of everything that has happened in the past couple of weeks.  My head understands that he will have surgery to fix the hiatal hernia and a g-tube placed in his abdomen so that he can get nutrition directly delivered into his stomach, but a little bit of my heart is breaking knowing that all of our hard work for the past five years has basically been for not.  My persona as a calorie-counting nazi was achieved by watching every calorie consumed, even being forceful at times, and being a regular at the weight-check station in our pediatrician's office.  I've worked my tail off and gained several worry lines on my face by monitoring Cale's nutrition, and all of that work was done to avoid having a g-tube placed in my Cale.  A g-tube was an option we had from the very beginning and I've fought with all of my being to keep it from being our solution.  This new reality of Cale getting fed through a tube is heartbreaking and I know I'm just in the beginning stages of coming to terms with that.  What kind of mom fails at being able to provide adequate nutrition for their own child?

Cale has been sedated more times than any adult will be in their entire lifetime.  This surgery will just be another hashmark we can put in his records.  I feel like I'm on such a roller coaster; either I'm feeling overwhelmed by God's goodness and His perfect provision for our lives, or I'm questioning His sovereignty and playing the timeless game of "why me".  I wish I could believe and live out God's promises for me and trust that those same promises apply to Cale's life, but sometimes it's hard to believe God's goodness when our circumstances have been brought into our lives by God.  Faith is impossible to perfect and I hate when I start doubting God's provision over our lives.

I hope to update again soon with a surgery date.  Thank you again for all of the prayers.  Even though God's goodness seems foggy to me at times, I want to believe that all of this will bring us out on a better side.