Friday, July 7, 2017

Well, to say I'm overdue on a post yet again would be an understatement....yet again!! Nevertheless, hi there! I can't tell you how many times I've wanted to sit down and write a post or give an update and yet time and again I put it off...and keep putting it off. I'm not sure why other than finding the discipline to do it and the initiative to dig deep into the underlying but buried desire to let it all pour out. So, I find myself here again hoping to bring a little insight and to fill you in on this growing little gal.
We are one day short of finishing our Kindergarten curriculum...yay! We didn't follow the typical school schedule but seemed to operate more on a year round one...intermittent breaks throughout the year. We plan to begin our 1st grade curriculum in August. She's done well and I'm thankful Spencer and I have been able to work together this year to complete it!
Selah did have a Craniofacial surgery in March and we were in Seattle a little under a month. It was a helpful surgery and a positive first step in her plan of care. Our focus post surgery has been to stretch and exercise her lower jaw to try to maintain and improve it's mobility. She's been so successful with this and we're so grateful...a lot of tears and hard work have gone into...and prayers1!! We plan to be travelling back to Seattle in the near future for further appointments and CT scans and to hopefully discuss what our next step will be and the timeline for it. She did have about a week long hospital stay post surgery (one day from getting home from Seattle). She was a sick girlie and was treated for bronchitis/pneumonia. Thankfully she's recovered and been feeling well. We do "quarantine," as Spencer calls it. This is where we avoid a crowd or a lot of kiddos, etc in hopes that she doesn't pick anything up. It's not always ideal but it is one way for us to try to be safe rather than sorry...especially prior to appointments or surgery.
On another note, she's growing and showing new interests every day. For the summer she's been taking private music lessons. She was super interested in the Banjo but that didn't work out. We started with learning the Ukulele and I think she's enjoying it. There are some challenges for her due to fine motor and the structure of her wrists and hands but she's not letting that keep her from trying! She's definitely got a love of/interest in music1
And on an even more exciting note, Selah recently asked Jesus to be her friend and to live in her heart...for the first time! We've had Bible as part of our curriculum this year and discussions of salvation and praying have been part of that. In addition to this, what she learns at church, and what we learn in her nightly devotionals, she's had a good understanding of it. She came to me on her own and told me she'd prayed the salvation prayer for the first time and that she is so excited. Her understanding and joy are so genuine and sincere. She's also no longer scared of being Baptized but is excited and ready for it. So, that's something in the works...a creative and cautious way for that to happen! This was such a blessing to my mama heart and an answer to prayers...above and beyond!
So, I'm not sure what else to update on at the moment, ha. We're taking it day by day and trying to be thankful in it all. I won't lie, I'm tired and often battle weariness. Thankfully my Heavenly Father knows me all too well and doesn't give up. I desire to let go of what I'm holding so tightly to...that isn't His best for me. I long to hope in and believe in all things. I pray this for you as well...until next time :)

Sunday, January 8, 2017

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

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 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....:)