It's been nearly a year and a half since Munchkin's last two surgeries (a cryo and laser in April 2010 and a vitrectomy in May 2010). We have an eye exam coming up towards the end of the month. And already, the dread is starting to build. Why? Because we've never gone so long without surgery ever since his condition was diagnosed back in July 2007. He's nine now (tenth birthday coming up in Jan) and the doctor has said that there is a possibility of the disease stabilizing as a child grows older. Coats invariably tends to throw up 'side-effects' like cataracts (that's what the vitrectomy was for - a thin film had formed over his retina, creating 'macular pucker').
And he positively hates the thought of going through another round of laser - he says he hates having to be hungry for so long, gets scared of 'falling asleep' and hates the smell of the anesthesia. What's worse, he surfaces from the anesthesia rather badly, usually kicking and screaming, literally. When he was little, I would scoop him up and try to calm him down. Last year, I realized I could no longer do this.
His mid-term vacation begins on the 24th. We have a mom-and-son holiday lined up at the beach for 4 days. The 'practical' person that I am, I figure he can still have the laser and get back to school in time even after the holiday. I've lost count of the number of holidays I've planned for us and then not made reservations because we had an eye exam coming up and what if he needed cryo and laser... well, no more. I want nothing more than for this disease to have stabilized and get another four-month breather. Please pray for my little munchkin!
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My nine-year-old son is the center of my universe. This is the story of his childhood as it unfolds. Please read the first post, "Why I started this blog," to know more.
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2 comments:
Hello,
My name is Jeremy Hillstrand. I am currently 27, and was diagnosed with stage 4 coats at the age of 3. It sounds like my surgical history is similar to your sons', although by age 8 I had undergone a total of 9 surgeries, with my last being at the age of 16. I would love to talk to you guys about my experience of growing up with only having sight in one eye, because let me tell you, I played Varsity Baseball and Golf in High School, and still play to a scratch handicap, all when my doctors said otherwise. My life has been anything but normal, and I'd love to shed some light and hope on what you guys are going through.
It doesn't seem like you have been on here for awhile, so shoot me an email when you get this.
Much Love,
Jeremy Hillstrand
Denver, CO
Hillstrand.Jeremy@gmail.com
First of all, thank you.
Thank you for investing in parents by blogging about your experiences on My Son & I, and sharing your faith openly.
Please know how incredible this is. And be encouraged to keep going.
I hope and pray that even more Christian parents (as well as non-Christian parents looking for answers) will find your blog and will be inspired by your experiences, solutions and struggles.
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Reply to: connect (at) tornadotwins (dot) com
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