Formed By God: December 2016

It is so hard to believe it's almost Christmas time!! This is by far our most favorite time of the year! We have completely enjoyed the Thanksgiving holiday, and are well into our family traditions that come around Christmas time. It is very exciting this year for the kids to be a part of a school system that recognizes that this holiday is truly about the incredible gift of Jesus, and takes time to establish that foundation with them. The school Landry was at last year actually taught a lesson on Halloween about the "Day of the Dead," but when Christmas rolls around it's just about the "holiday party." What a difference a year makes!

Robert has started basketball, and although the team is pretty young, they really are a great group of high schoolers. I am hopeful he can get more wins then he is expecting this year, and that they develop a good bond. They have had 4 coaches in 4 years, so there is definitely some trust that needs to be earned and Robert is doing an amazing job of trying to show them with his actions, the kind of coach he is. Landry and Gracie are both loving their new school. Landry is in 2nd grade, and if I remember correctly he is reading at a 4th grade level and spelling at a 5th grade level. His biggest struggles are handwriting and just socially figuring out how to transition from "tattling," to handling issues with other kids one on one. He has an amazing teacher who truly connects everything back to God, and uses Landry's relationship with God to encourage him in the areas he's experiencing "growing pains." He has his first school strings recital coming up soon and I am so stinkin excited to go watch him! I played viola pretty seriously as a kid, and I can remember how fun these concerts were. I don't think he's quite as into it as I was, but my goodness am I excited to be a MOM this time around and experience it that way.

Gracie is doing great! She has adjusted to her new school and schedule very well. It is crazy to me how much she is growing up. I have even seen some big improvement in her behavior. I noticed she seemed to have some younger habits when responding to conflict, frustration, disappointment and anger. It's like she would turn in to a 2 year old. I don't know when it clicked for me, but at some point I realized she never really had the chance to learn to deal with more "normal" stuff. She would go into full "fit" mode over the smallest things. We started dealing with biting, hitting and throwing things. We have worked hard on teaching her how to handle those issues and use her words to express how she's feeling. It has helped a ton. Not having surgery for just under a year has helped as well. In reality, from 16 months old, until after 4, her little body and mind had to focus on recovery, learning to walk and do other things over and over again, heal and work on processing the trauma of surgery. It's like it took every bit of her and left no room to learn age appropriate social skills. Now that we've been on our longest break ever, she has had a chance to really grow emotionally and it's been incredible! She is still strong willed~my goodness this girl could literally change the world~but that's just the way God made her.

About a month ago, we received an unexpected letter from Gracie's insurance company, notifying us that as of January 2017, they will not only be tripling her rates, but they will no longer be covering out of state care. That is really concerning for us since really everything connected to her leg, (except for routine x-rays), is done in Baltimore, MD. In researching possibilities to replace her insurance we found that all but one other company dropped out and those are now the only two private companies to acquire private insurance through. Neither allow for out of state coverage. Both have outrageous monthly rates, and one also has a $23,000 combined deductible and max-out-of-pocket. Obviously those won't work for our family. Insurance through Robert's employer is just under $800 a month when the kids are added on. My employer is currently changing what they offer and the cost of it, so we aren't sure exactly what that is going to look like yet, but are praying it covers out of state care and is affordable for us.

All of the insurance issues just so happened to come up at the same time her latest x-ray was due. Between what I was seeing her go through symptomatically and the look of her legs/x-rays, I thought she was looking like the 8-plates needed to come back in. Her surgeon however, would like to wait until we do a lengthening and combine those surgeries. That lead to me inquiring about what kind of time frame we were looking at for lengthening. Due to the combination of losing out of state coverage, and the fact that we haven't been seen in the office for almost a year (YAY!), Dr. Standard thought it would be a good idea to get a quick visit in. So....Gracie and I are scheduled to go out to Baltimore next week. Dr. Standard is going to do a full clinical evaluation, and a new updated long-term care plan. This will help us if we need to end up taking Gracie somewhere else, which is an entirely scary subject for me. Once you have a level of trust with a Dr., the thought of handing your baby over to a different surgeon is something I can't quite put into words yet. There may be a quick surgery while we are there, but that's only if her lengthening ends up being farther down the road. If he's thinking of doing the lengthening sooner, we will hold off on any surgeries. But, if it's a ways off (like I was thinking it was), I'm not sure her leg can wait that long without any correction. Right now she is back to turning her foot in. This time it is coming from the hip or knee which is concerning. She wears an AFO so I know the foot turning is not from her actual foot area. She is also talking to us more and more about lower back pain. All in all, I think this will be a very productive, last minute trip. As always, I will keep everyone posted more frequently while we're gone on her facebook page at See Gracie Run.

It's so amazing to think we haven't had a surgery in almost a year. This is the longest break from surgeries that Gracie has ever had. She "averaged" a surgery every 6 months. At one point a couple were even within 3 months of each other. Being able to enjoy watching her just be a girl has been so nice. She swam all summer, just finished with swim lessons, and is about to start dance lessons. She has run and played like crazy and it has been amazing! We are slowly getting the typical symptoms of aches, lower back pain and some unusual swelling....but overall it has been a pure JOY to watch her just be a 5 year old little girl! She has such a love for life!

This verse really spoke to me because we have been, and somewhat still continue to be in in a season of struggle. It has been such a challenging 4 years for our family in general, but I am overcome with such gratitude to have had this season of peace with her medically. I am so grateful God has shown me how to recognize and navigate these seasons, and that I didn't miss the realization that this was a blessed season with her. I know not every season will be this calm, but we ALL have truly enjoyed our season of rest where her leg is concerned. Now if we could only have a season of rest with life itself...lol...but we are immensely blessed regardless of the season God places us in, and I pray you are as well.

Prayer Requests:
-that we are able to find good, affordable health coverage that allows for out of state care.

-that the cost of her new insurance does not take away from our ability to move in to a new rental that will be better for our family.

-that this appointment, even though last minute, is productive and successful.

-that Gracie's symptoms are easily addressed and alleviated.