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Golden Year

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Well, that sleep study was a bust,   I thought as I unpacked Avery’s overnight bag. 

Avery was only able to tolerate her cap (a piece of plastic that completely occludes her trach to give the doctors an idea of how well she might be able to breathe without a trach) for a few hours. And the small, clear nasal cannula that sat under her nose all night detected no air flow. 

She’s not ready to be without her trach. Her nose is no more open than it was last year (Avery’s nose is mostly blocked by bone due to a shallow midface, which is the reason she has the trach in the first place). 2019 probably won’t be our decannulation year. 

I truly wasn’t upset by the news. The results were as I expected. I had agreed to the sleep study, not in anticipation that Avery would pass a capped sleep study, but with the expectation that the sleep study would give us new data as to what the right, next step would be in Avery’s care. It feels good to be proactive, so removing her tonsils and adenoids will likely happen this spring per our ENT doctor’s recommendation and as a way to make her airway a little larger. Moving forward means taking stock of the current situation and in Avery’s case, that meant a time-consuming commute and an exhausting overnight at the hospital. 

Wait, that means it WASN’T actually a bust. If we have a clearer vision of where we are headed, then it was all worth it, I reminded myself. 

Maybe the result wasn’t the best case scenario that I had hoped for. Maybe Avery’s progress and physical growth wasn’t happening as quickly as I would have liked. Maybe we are stuck with that trach for five more years. All I know is that knowing the next, right move is priceless. Sometimes it hurts and disheartens us to take stock and see exactly what progress has or has not happened, but it is essential to know in order to move forward. 

The sleep study was not a bust. The truth about where we stand is never wasted. The effort to collect data to improve our lives is always worthwhile.  

If you’re reading this and feeling like you didn’t achieve the results or experience the growth that you were expecting in 2018, take heart. This year was not wasted. If you are walking into this coming year with any more clarity on where you stand and what you want in life, then you made progress! Decannulation is the goal, but the journey of growth and grit and resilience and resolution is where we are being refined. (Hebrews 12:11 - well, really that whole passage.) 

The refining process is where you reveal an element’s worth. A pearl is the result of sustained irritation. I am intensely grateful for God’s persistence in the cutting away and refining in my life. 

Here’s to a golden New Year, my friends!  

Dear Special Needs Mom

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