Houston, we have Zinging!
It is with a happy heart that I'm sharing this post...Josie felt her first real "zing" yesterday in school. For about 2-3 weeks we have been trying to decipher whether Josie's self described "tickles" were actually "zings". Her pain tolerance is so high we questioned what her definition of a "zing" actually is. We've been emailing back and forth with her doctors trying to decide. I had even emailed her doctors this video of myself tapping along her facial nerve to try to help us dissect what was happening.
Well yesterday, cool little Josephine gave us our definitive answer...
She came home from school; she played in the yard, helped me plant garden and then, nonchalantly while she was helping me with dinner told me about her day....
Josie:
"Mom, today in school I was reading at my desk and I reached up to scratch my ear (points to her left ear) and it hurt (points to her right cheek). Like I kinda wanted to yell "ouch", but I didn't. It was a weird feeling. Do you think that's normal?"
Me:
attempting to keep cool but stopping what I'm working on says, "Well, wait, what do you mean? What hurt? Where did it hurt?"
Josie:
continuing to prep the cauliflower I'd given her to work on for dinner, casually repeats her story
Me:
pausing to soak in her words and then gradually smiling as I respond...."Yes, I'm pretty sure that's normal. I think that's your zing."
Josie:
big smile, flatly responds "Well good, I can finally have my surgery." Then we went to tell dad.
And just like that, we're off. I confirmed her "zing" with her doctor this morning and we are officially in their books for surgery on August 16th (which is later than we expected but were assured is an acceptable time-frame). I was told to expect a 9-12 hour surgery, 3-5 days in the hospital, and then another 3-4 weeks recovery time (part of that being at home). I'm feeling so much relief, joy, gratitude and at the same time kind of completely sick to my stomach. The joys of parenthood!
Well yesterday, cool little Josephine gave us our definitive answer...
She came home from school; she played in the yard, helped me plant garden and then, nonchalantly while she was helping me with dinner told me about her day....
Josie:
"Mom, today in school I was reading at my desk and I reached up to scratch my ear (points to her left ear) and it hurt (points to her right cheek). Like I kinda wanted to yell "ouch", but I didn't. It was a weird feeling. Do you think that's normal?"
Me:
attempting to keep cool but stopping what I'm working on says, "Well, wait, what do you mean? What hurt? Where did it hurt?"
Josie:
continuing to prep the cauliflower I'd given her to work on for dinner, casually repeats her story
Me:
pausing to soak in her words and then gradually smiling as I respond...."Yes, I'm pretty sure that's normal. I think that's your zing."
Josie:
big smile, flatly responds "Well good, I can finally have my surgery." Then we went to tell dad.
And just like that, we're off. I confirmed her "zing" with her doctor this morning and we are officially in their books for surgery on August 16th (which is later than we expected but were assured is an acceptable time-frame). I was told to expect a 9-12 hour surgery, 3-5 days in the hospital, and then another 3-4 weeks recovery time (part of that being at home). I'm feeling so much relief, joy, gratitude and at the same time kind of completely sick to my stomach. The joys of parenthood!
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| This graphic pretty much sums up her next surgery. |
I never thought hearing about a zing would make me teary, so happy for you guys!
ReplyDeleteHaha, I know! So much hinging on that little zing :) Thank you, Daphne ❤️
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ReplyDeleteHi Josie, I wanted to contact you, but couldn't find any email address. In short: I'm 22 and this year I did a second opinion where they came up with the term Facial Infiltrating Lipomatosis. As you wrote there are almost no hits on Google, but luckily I found this page. I have a blog (wilmawestenberg.nl) in Dutch since I was 12 (about 10 years now) and will switch to English soon so you can read about my life. Love from Holland.
ReplyDeleteHello Wilma, I am Josie's mom, Erin. So great to hear from you, thank you for reaching out! I am the one who typically updates her blog. I have been thinking for awhile that I needed to add a contact section to Josie's blog and actually sat down at the computer tonight to try and figure it out when I noticed your message. I love that you've kept a blog from such a young age, Josie and I will definitely be reading about your story. It does appear that I've succeeded in adding a contact section to this blog, however I'm not confident that its working. If you have Facebook and would like to connect that way, my profile name is Erin Beavers Paugh. I'd love to hear from you.
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