Something Special

This is my letter the day of Zephie’s surgery. This process has taken so much more than I could ever imagine to process. I have tears when I read this. I am amazed at how articulate I was in a time of such deep stress. I am incredibly thankful that my husband encouraged me to write this during that time even if it took me 6 months to publish it. I also think this is the perfect spot to thank everyone in our community that loved on us, supported us, prayed for us, donated to our Go Fund Me, brought us meals, made her cards, Brought Lux and Lylah gifts, and sent us good healing vibes. It all was seen and felt, and we are incredibly grateful for it! thank you! Life has been speeding by since her surgery and there is still so much to reflect on. I hope you enjoy this little piece. I will continue to share more as it gets processed!

April 17th, 2019

The Day her spine would become straight…

Each and every time I share this sweet girls story I am humbled to think I am her mother. It is such a gift in life, that I never forget it. 

A few things have changed since our last big update. Miss Z is currently in the operating room, and things are going well. She woke up early this morning in amazing spirits and a motivation that appeared she knew she was ready to climb the mountain in front of her. I woke up this morning with this incredible sensation of strength, and calmness. It confused me to be quite honest. I have to take a moment to thank everyone for all the love, support, prayers, good vibes, energy of love, and messages we have received. Every one of them has helped tremendously. I know it has helped to give us the strength Zephie was feeling this morning. 

Let’s  rewind a bit…

I received a call late last week from her surgeon that they were changing their approach to her surgery. After a group of surgeons and the Medical Director discussed her case and reviewed her images they decided that she would need her thoracic spine corrected now as well. The nature of progression from the short amount of time they have seen her did not look compensatory like they originally diagnosed. Instead it is structural. A structural curve therefore will not straighten out by fixing only her lumbar spine. Since she was beginning to have set backs with breathing, they decided she should have both curves fixed at once. Last measured a few months ago her lumbar spine was at a curve of 100 degrees, the thoracic measured at 80 degrees. Which was a large increase from the first measurement of the thoracic being 60 degrees. We are grateful they were so thorough with her case and really took all the possibilities into account. The prognosis long term will be so much better for her this way, avoiding the second fusion. It will make the recovery period a bit harder, but we know she is ready to work through that. With the support of all of you, we are too!

Zephie is this magical soul, that is so well loved. There truly is something unique about her that I just don’t have the words to describe. She gives love so freely. To think that her spine is curved so much in two spots and she doesn’t complain of daily pain, just sounds “off” in my mind. I believe she has lived with daily pain for quite some time, and just didn’t know how to express it. Having that nature of not wanting others to be concerned about her for anything.  This is definitely where the tricky part of her expressive language comes into play. She understands completely everything going on around her, but the way she expresses it is unique and requires our very consistent attention to be aware. We didn’t start this spinal journey because she was complaining of pain or diagnosed by a doctor for needing it. It was our advocacy as parents that demanded the referral for her to be assessed. Grateful every day for her voice and ours. Up until yesterday she showed no signs of fear or nerves in any way. Yesterday it was starting to settle in and she was handling it like this amazing wise soul. I’m so proud of her. I want her to know today when I see her that its ok not to be strong sometimes. We can lean onto others. Love is definitely surrounding us! We are always there for her that sweet gem. She continues to sprinkle magic in whatever she does! 

She has been in surgery for 9 hours now and we are anxiously awaiting the call that they are finished. I reminded the Surgeon this morning that we appreciate her taking her time, and are so grateful for a meticulous Surgeon taking care of her! We have heard that she is doing well, and everything is going fine. It will be a long night with lots of snuggles and love!

We will give updates here as we can throughout her journey. We appreciate everyones support, love, prayers and well wishes! We have immense gratitude for you!