This Sunday I'm Grateful for...

"This is the second post  in our "Grateful Sunday" series.
In addition to reading our posts here on the blog, 
follow CCAKids on Twitter and Like CCA on Facebook 
where we will be posting things we are grateful for every Sunday. 

We would love for you to participate!  
Use the hashtag #GratefulSunday **

A few weeks ago Peter had a follow up appointment with his craniofacial surgeon.  The surgeon performed her annual exam, looked at me, and said, “I wouldn’t touch him until he’s 16 and needs a final jaw surgery.”  “Really,” I said?  “Unless, he is unhappy with his appearance and wants something done sooner” was her reply.  She recommended that we consult with Peter’s oral surgeon who, she said, will be the specialist to perform his final jaw distraction/placement.  We haven’t had that appointment yet, but I’m still shaking my head in disbelief.

I guess this next major surgery has been hanging over our heads for so many years, that I’ve just learned to live with the possibility and not dwell on when it will actually happen.  When Peter was 2-3 years old, he had the rib bone graft to his mandible followed by jaw distraction.  The distraction left as many permanent scars on me as it did on Peter.  It was, by far, the worst of his surgeries.  After two weeks of turning the pins three times a day with Peter screaming his head off every time, we ended up back in the hospital due to an infection from the appliance.  That was followed by a week-long stay and discharge with a PICC line for continued I.V. antibiotics at home.  Most patients don’t have such complications from jaw distraction, but, unfortunately, Peter did.  The positive outcome from the surgery is that he was decannulated (trach removed) about six months after the distraction.  The negative is that over seven years later he still has an open stoma (too long of a story for this blog post).

Peter is now 11 and 16 is really not far off, especially when I think of how quickly time is passing.  It seems like just last week I was sitting outside the door of his preschool not leaving for fear that his trach would need suctioned and the staff would not know how to handle it.  We’ve both come a long way from those days; me on learning to trust and let him go and him on becoming more independent and learning responsibility.  As Peter makes the transition to middle school this fall, we will both have to continue growing in those capacities.  This Sunday I’m grateful for Peter’s capable surgeons and wonderful teachers who have influenced our lives in so many positive ways.

Have a safe and happy summer everyone!