Ian's Spine

I tell you dear friends, God is BIGGER! His will is different from what we expect and ultimately, infinitely more glorious than our wildest imaginings.

Today, I am writing you after going through and personally experiencing His perfect goodness displayed.

At the end of September we met with a brilliant genetics specialists for Ian. Because he was born with several malnormalities (anal atresia, esophageal and trachea atresia, among other things) we were recommended to see her. She spent a long time with us and went over Ian's medical history... which is a very thick stack. She recommended that we have an EKG for his heart and a full spinal X-ray, along with a complete chromosomal mockup.



We completed these tests at Scottish Rite Hospital and Ian had his two sisters there as cheerleaders. It was a long day and we had to end with blood work. ):

Ian is a rock star!

We heard the results from the EKG and X-ray on September 22. The EKG shows a small hole in his heart and a small amount of mixture of blood, but not enough to be operable. The X-ray shows he has 13 ribs, instead of 12 (this makes no difference, only an interesting thing about him). But the big finding was that he has a malformation of his spine at his neck. The pieces of his spine at C3 and C4 are misshapen and not complete, making an opening.

She told us we needed to get a CT scan to see his spine to determine the weakness due to this malformation. We started praying. The CT scan was on Thursday, October 6. Another hospital trip, but Ian left with a giant smile and an orange balloon.

When the CT scan came back it confirmed that the spine was malformed—leaving two openings to his spinal cord. We were referred to a neurosurgeon, but in the mean time we were told to use caution, that if this malformation has caused a weakness it could lead to injury. Her words were actually, "I would be Nervous Nelly until you hear otherwise from the Neurosurgeon." She advised that he not jump on the trampoline with other kids or bouncy houses, or do fair rides, etc.

I was sick at the thought of Ian undergoing more surgeries. He's been through enough! I was truly overwhelmed.  We have been waiting for a call any day of a baby being born, and flying to Japan, and then adding that baby into the mix of our already crazy-at-times lives.  There's a lot of unknowns for me here... even though I'm extremely excited, I am nervous too. BUT I didn't even know how to process the flood of emotions this brought. another surgery.  hospital stay. the regression Ian has had with every surgery.  Even writing this, it makes me want to cry. I wanted to be excited about our new baby. I wanted celebration with our family.

I did a great deal of praying and worrying. And I know worrying is an awful waste of energy. Why should I bother my head with worry if I turned it over to Him??

Tuesday, at 8am (Oct 18) we had our appointment with the neurosurgeon. He came into our room and said that surgery was not necessary. And we got to look at the CT scans with him. As soon as we saw the holes where bone should be we still couldn't believe he had just said, we did not need surgery? I couldn't compute... I'd gone into the appointment knowing we'd hear he would need surgery. Now he doesn't. Didn't I pray this? Didn't I believe my God is BIGGER!? 

The doctor said that he sees tons of kids that have holes like Ian's and they live problem free. Ian should not play tackle football or things of that nature, but that he will be fine. Just yearly check-ups are required. AMAZING!! God is all over it! Thankfully God's love is steadfast, and doesn't change based on our feelings, lack of faith or responses. 

So we are celebrating this day with Chick-fil-A. (: