|Our Little Lady Liberty this past Halloween|
Where We Left Off...
My last update was post-op last August. Josie had just finished the first step in the facial reanimation procedure, which was grafting a nerve from her ankle and placing it strategically into her cheek. When we were sent home it was with the instruction to wait for her nerve to start "zinging". This "zinging" would indicate that it was time to begin the next phase of reanimation. We were told the window for this happening was anywhere from 4-6 months all the way up to a year after surgery (so anywhere between mid-December all the way up to August 2017).
Since last August's surgery, Josie has bounced back without missing a beat. She has been enjoying the 3rd grade, she has continued to be active on her swim team and has been a reluctant cheerleader for her brother's basketball team. As you can tell by her Halloween costume this past fall, New York is never far from her heart. She has a love for Lady Liberty (and all things New York).
Since August Dave and I have done a pretty good job of continuing on with our every day life and not thinking too much about the if's and the when that the "zinging" will happen. Lately though, I can feel the dark shadow of nerves and the uncertainty creeping up on us. It happens almost unconsciously. At any time within the next six months Josie's nerve will begin firing signals and we will have a small window of time to return to New York for surgery (about 4-6 weeks). It all feels very daunting and at the same time so very exciting.
Facial Reanimation Part 2...
The second phase will consist of her doctors grafting an 8-inch length of her inner-thigh muscle and placing it into her affected cheek. This grafted muscle will be connected to her newly functioning grafted nerve and will help her to gain back her facial movements; such as smiling, puckering, and expressions as well as giving her more facial symmetry. The way I understand it, there will also be a nerve in the grafted muscle that will be "plugged in" to her existing facial nerve (which will be near her left ear). This will serve as an insurance plan of sorts, helping her gain even more facial mobility. This next surgery will not be as easy of a recovery for Josie as was the first. She will have a sizable incision in her leg. Her doctors also hope to shave/shape her cheek bone as well as remove excess tissue inside her cheek and on her tongue. I am so thankful that she has come to this point, but in the same breath I'm also dreading this for her.
Call it mother's intuition or God whispering in my ear, but I feel like things are probably going to happen sooner than later for Josie. She has told me that her face feels funny sometimes, sort of like a hand going to sleep. She tells me her face feels numb and tingly at times. It isn't all of the time, but I'm guessing this is the start. Also, so many people have been inquiring about her, praying for her, and offering to help in anyway they can. It's like all of you know that it's near, too.
I have to share this final story with you before I sign off, it's just one more sign that Josie's journey has not been in vain. Last week I connected with a mother of a child who has a diagnosis similar to Josie. She had sent an email through the Children's Craniofacial Association's list serv. This list serv is a way for parents to connect with other parents who have children with like diagnosis'. I have been a part of this group since Josie was 4 years old. I usually ALWAYS delete the emails before I even open them because they are typically from parents of kids with diagnosis' very different from ours, but this time the subject line caught my eye, "Infiltrating Lipomatosis". Now believe me, you do not see that term everyday. In fact, Infiltrating Lipomatosis is so uncommon that spell check thinks I'm spelling it wrong and once upon a time if you googled it, Josie's blog was one of the few things that popped up. Trust me, it's just not common.
Anyway, I immediately emailed the mom back. I learned that she is a mother to a sweet faced 9-month old baby girl in Norway (who in so many ways looks a lot like Josie at that age). She is just beginning her journey and I vividly remember everything about those early days. I remember feeling so completely alone in our diagnosis and being so frustrated with doctors and all the unanswered questions. Now here we are 9 years later, able to share our experiences and maybe even be a comfort to someone else.
After emailing with this mom she started a Facebook group and our small group quickly grew to 6 mother's across the globe with children that have this common diagnosis. We have been sharing and learning so much from each other these past 5 days. A mother of a sweet girl from Denmark shared with me that she has been reading Josie's blog for some time now, which felt like another full circle moment. Over the years this blog has evolved from a way to keep family updated after surgeries, to friends of friends that started following Josie's journey. Never did I grasp that it could reach so many. I have struggled at times with the spotlight that the blog puts Josie and our family in. By nature, I'm a private person and much prefer to be a wallflower so this has never fully been a comfortable place for me. But, in retrospect I'm so thankful that Dave started this blog all those years ago. It has been an outlet, helped us to connect to others that we may have never had the opportunity to otherwise, and in a way given our struggles purpose. I've always felt that there is a grander plan beyond that we were dealt a rough hand. The grand plan is still unraveling, but I find comfort in knowing there is one.