Sunday, January 8, 2017

Whoa....Has It Been That Long???

Hey!!
Over a year since my last post...that's got to be a record??:( I don't even know where to begin other than letting an update just all spill out in hopes that it makes some sense. If there's even any readers still, ha!?
Selah is now a sassy and energetic five year old...six in April. SO crazy that she's that old!! We began our homeschool curriculum (Kindergarten) in the fall. We're plugging along and I'm so grateful for the opportunity and time we've had together. Some days there's more motivation than others, on her part and mine. Some days I'm full of doubts and feel ill equipped but that's just part of it. We're just trying to take it day by day and it's been an overall positive experience!
As far as health care and surgeries go, we've completely gone in an unexpected direction. Things seemed to fall out of place in Boston. There was a consistent breakdown in communication with our doctor and nurse and it led to us discontinuing any further care there. We began to pause and scratch our heads and look at what was next...discouraged to say the least. Unexpectedly and by what seemed to be by chance, we ended up seeking possible care in Seattle. We've made a few trips there to meet with a team and it seems like such a good fit and a location where we'd like to pursue ongoing care.  
We're planning on beginning Craniofacial surgeries for her instead. We planned to go in December to begin the first part of the surgeries but she came down with pneumonia again and it was postponed. As of now we're looking at rescheduling for March. The goal of this first part of the surgeries would be to hopefully get that lower jaw moving a little...and to allow some of those bottom teeth to come out as well. I will try to go into a little more detail and all a little closer to then.
As of now, any further hand surgeries have been put on hold. She's still not able to really utilize her left thumb for any fine motor activities or opposing but she sure tries hard. We've just let her right hand stay and she does the best she can at adapting. So, we'll just wait and see on that end.
Selah is still just like any other kiddo for the most part and she definitely wants to be. That's what hurts so much sometimes. She's so smart and intuitive and she picks up on when others notice her differences or point them out. Unfortunately it's a routine and heartbreaking occurrence. She's resilient, more than her mama, but my heart aches to know what she's really thinking and feeling in that sweet heart of hers. I just have to try to open my hands and envision God lifting it all up into His hands...His healing and loving hands.
That said though, she's also been blessed with a handful of super accepting and caring and just fabulous friends! They see the beautiful and fun loving Selah and appreciate the girlie she is. I can't tell you how much that means to me...how thankful I am God has placed them in her story.
So, that was a whirlwind of an update I feel like...but I do intend to be back with more. This was way overdue...but until next time....:)

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