Doctor Called...

on Monday, April 12


Hi Friends,
Tonight we got some heartbreaking news. We have been waiting for the last couple of weeks for our spinal specialist from Shriners and the neurosurgeon at OHSU to connect about Josiah's recent CT Scan and urodynamic study. This evening our Spinal Specialist called and he feels that Josiah's back is at a place where we have no more margin, things have not changed (improved) and he is not comfortable waiting until we have a crisis to address the problems in Josiah's back.

He is planning to meet and discuss an intervention and care plan with our neurosurgeon as well as with two of his other colleagues that specialize in spinal abnormalities. He told us to prepare for a surgery in 3-4 months. The basic plan is to do what's called a "internal fixation" of his lower spine area to correct his sacrum which is not normal (nerve roots exposed, no proper bone coverage there), as well as address the abnormal flexation in his pelvis which could potentially cause his back to collapse and pinch the nerve endings of his spinal cord. This plan is tentative and our doctor is planning multiple consults with other specialists before the care plan is finalized because Josiah's abnormalities are so rare. We will meet with our doctors sometime in the next month once they have determined a course of action.

So... as you can imagine, we feel like we got the wind knocked out of us tonight. It feels like the direction is certain, and yet nothing is completely certain about this. What's uncomfortable about this process is that its not like having your appendix out where the procedure has been done countless times with proven outcomes - these surgeries are more rare and the abnormalities tend to be specific to the child which makes it hard to compare one case to another. On one hand I am glad we know about it and that this isn't being generated by an emergency because of some symptom we are witnessing from Josiah-- on the other hand I look ahead at our summer and the anxiety of waiting and thinking about this for four months and it just sits in my stomach like a rock. I hate it that Josiah has to go through anything like this at all. Its really hard to think about our little guy having any kind of potentially life altering surgery.

We had a family meeting tonight to talk about this and to pray. We all shed some tears together. We are still believing God for a miracle in Josiah's body. Thank you for your continued prayers and support during this time. Our trust is in the Lord, Maker of heaven and earth, and Maker of our precious Josiah. We will post more as we know more.
Shawn & Dana

10 comments:

Jenifer Johnston said...

Will be sending prayers your way as always. Please let me know if you guys need anything at all. Miss you all and hope to see you soon. xoxo

McLain's said...

Shawn and family: just saw an email from Dara to Tina regarding prayers for Josiah. My heart aches for you all. We will add Josiah and the family to our nightly prayers.

It was a delight to see you all at PVC weeks back. Sorry for not being in touch over spring break. Having medical issues of our own, but nothing compared to yours! Let's do get together soon.

Annette
Marketing, AMC

Anonymous said...

for some reason I am crying while reading through your email. I am so sorry that your family must endure this! I pray that God give you the grace and strength and peace as you continue this journey! I love the pic of Josiah on your blog page, he is SO cute!!
love ya'll! Robyn

Anonymous said...

Wow, our hearts go out to you guys!! And are also heavy from the news. This wasn't what you/we were expecting to hear. Please know we're praying, praying, praying!! Love you so much!
~Danelle and the family

Nancy said...

kAY220KAyOh, Shawn! Thanks for the update. I've never met your little guy, but I will be praying that God will direct every step you take, fill every decision you make, and bring healing and wholeness to your little one. It is good to know it is GOD who is holding him...and you! My love to all your family!

Lori said...

Father God,
This little guy is one of your own. We do not know what your plan is for this family but we are confident in your perfect will. Lord comfort this family as they battle this disease.
We ask your Spirit to drench them with you passion and never ending love. Guide the doctors to do your will and give this family the strength of Sampson.
We ask in the name of your beloved son Jesus that you show us your Miraculous Glory. Your will be done Lord, in Jesus' name. Amen.

Nikki Stauber said...

I don't know your family personally, but I will carry you in my prayers for the next few months. I know the Jason Klinkner family :) May you feel His arms around you and may you have some sense of His peace that surpasses all understanding as you await the next steps.

Ruth said...

Praying for the miraculous!! and for peace for all!

Valerie said...

Love you guys and we will be praying too.

The Dream Merchant said...

Wow. I just stumbled onto this by jumping from on blog to another. He looks like a beautiful boy, and I pray he grows up healthy and happy into the young man god put him on this earth to be.
You sound like awesome parents.
This must be hard for you.