Thursday, April 20, 2017

Major Surgery Ahead......

I'm a planner. When I can't make a to-do list with neat little boxes to figure out how to tackle what's ahead because I don't know what's ahead...I get nervous. I don't like to write about uncertainties because what if they don't happen? What if they do?!

Anyway...that's not an excuse for my lack of blogging, but now that the next few months are (a little) clearer, I'm hoping that I'll be writing here more often.

There have been a lot of changes in my life lately, but for now I'll narrow my focus to the change that most directly relates to CP. :)

If you've been reading my blog for a while (thank you!), maybe you remember that my orthopedic surgeon mentioned the possibility of future surgeries when I had the pins removed from my leg last June. He told me that we could continue the conversation in February, and I could make a decision then.

Well...I've made a decision. I'm having a spinal cord surgery called selective dorsal rhizotomy (SDR) this July, in St. Louis, Missouri. If all goes well, the SDR will eliminate or significantly reduce the spasticity (muscle tightness) in my legs. I know there's a whole lot of controversy surrounding SDR, especially in adults. It's not a good option for everybody, but I really feel that this is the right choice for me at this point in my life, and my orthopedic surgeon here (and the neurosurgeon in St. Louis, of course) thinks it's a good move too. My spasticity is hard for me to deal with, and it's only getting harder as I get older. The surgeon in St. Louis and my surgeons here said they're actually surprised by how well I'm doing, given the amount of tightness and spasticity I've got.

But here's the thing: nobody tells you that CP gets harder as you get older. When I was younger, all my doctors said that I'd stay the same because my brain damage will never get worse. That last part is true, but our muscles, bones, and joints age faster than somebody without CP. With SDR, they're hoping (we're hoping) that I'll be able to slow that deterioration and maintain my independence for a longer period of time. :) My orthopedic surgeon here said that I need to do it now though, because every year I wait means a more difficult recovery.

I can't say that I'm excited about another surgery and another hospital stay, and I know that the recovery is going to be hard. Really, really hard. Months and months of intense rehab and relearning how to walk...

I'm definitely afraid. I think it'd be weird if I wasn't.

But I'm looking forward to experiencing what it's like to move without spasticity. I can't even imagine what it might be like to take a step without my legs fighting back.

And...let me just pause and embrace my inner-five-year-old for a second...I'M GOING ON AN AIRPLANE! The last time I was on a plane, I was six years old, clutching a letter that I'd written to the tooth fairy because I'd lost a tooth a couple hours before we boarded. My family's not big on traveling, so we don't usually go anywhere farther than a four-hour drive. The end result of this is that I'm 23 and I'm ridiculously excited about flying, already wondering if I will get a window seat. :)

I'm going on the trip with just my mom, so it will be an adventure for the two of us. We're both excited-nervous, and it comes up a lot in conversation. I can say that I'm already ten times more comfortable talking to my mom about CP than I was before all these surgery plans happened, so that's been a nice little side effect of this whole situation.

Anyway, I will keep you guys updated on how everything unfolds. If you've got any SDR-related questions (about my situation specifically or because you're maybe considering SDR for yourself or your child), feel free to send me an email at transcendingcp@gmail.com. Same goes for if you just want to chat! I miss you guys.

Will post more soon! Thanks for sticking with me. :) It'd make my day if you could leave a comment to let me know that you've stopped by!

21 comments:

  1. Congratulations and good luck!!

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    1. Thank you, Laura!! Hope you and your son are doing well!

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  2. Wow, I'm so excited for you! I've never had SDR, but all the people I know who have were amazed at how much it helped :) I know what it's like to have to make big surgery decisions, though, so I'll be rooting for you!

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    1. Thank you Natalie!! I appreciate all the positive thoughts...you're awesome! :)

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  3. Wow! It must have been challenging to make that big decision, but I wish you the best of luck, a smooth surgery, and a successful recovery! And, joining you in embracing your inner 6-year old, YAY, AIRPLANES!!! (Seriously, though, they're fun to ride!)

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    1. Thank you! :) I'm glad to know I'm not the only one with such enthusiasm for airplanes, hahaha :)

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  4. YAAAAAAAY YOU'RE BACK ! :D
    I'm so, so, so happy for you ! I know it's scary and it probably won't be the best summer you'll ever have, but it's such an amazing opportunity... AND you get to go on an airplane ! Isn't that wonderful, seriously ? :)
    I'll keep you in my thoughts, and I'm always here for a virtual hug from across the ocean if needed ! <3

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    1. :) :) I've missed youuuu!! Thank you for all the encouragement and support, today and always! <3 Sending a hug across the ocean right back to you! xo

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  5. Best of luck with surgery! I know Andi who blogs at Bringing The Sunshine 's daughter Sarah Kate had the SDR when she was younger and I am pretty sure there are some posts about it. So that may be a helpful resource for you.

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    1. Thank you Kathryn -- for the luck and the advice! I've been reading Bringing the Sunshine for a while but it's been a long time since I've read their SDR posts, so I'll be sure to check them out again! :) Hope you're doing well!

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    2. Thank you. I am-almost done with my 1st year of college and I got to write a paper and present about disability for one of my classes.

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    3. That is so awesome! :)

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  6. Hi K!

    Ah so this is where you have been, I MISSED YOU SO MUCH!! SDR,wow! I was offered that at 2 years old but it wasn't best for me for various reasons and frankly I am glad I kept the spasticity. That's just me. I know somebody with CP named Nico who made a documentary called "The Nerves of Us" about SDR. Check that out! I am always here if you want to discuss surgery fears! Will email later...

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    1. Hey Margot!! I missed you too -- and I've been meaning to tell you that I watched Enter the Faun!! LOVED IT (and really enjoyed seeing you on my TV haha).

      I totally get what you mean -- my parents considered SDR when I was around that age, too. It's not the best option for everybody and it's definitely a personal decision...but at this point, I think it's the right course of action for me. Will definitely check out that documentary, thank you! I'm a huge documentary fan in general, but CP documentaries?! Even cooler.

      Looking forward to your email, and would love to talk with you some more. :)

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    2. YAY!!! So glad you finally watched "Enter The Faun"!!! I figured you would love it!! (yes I look adorable on TV in my opinion!) Yes CP documentaries rule! I wish there were a lot more CP documentaries. I just got your email and replied back.
      btw Elena of the blog "Life Less Ordinary" had SDR as you probably already know so please read her mom's old posts about it.

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    3. Yesss -- actually I DVR'ed it and watched it the day after it aired, but I'm not the best at keeping up with my inbox (as you know...lol) so I hadn't written you back yet! I just replied to your last email though! :)

      Thanks for the heads up re: SDR info on that blog. I follow her blog and have read those posts too!

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    4. Awesome! Thanks so much! Yeah I just noticed you follow that blog too. You're welcome!

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  7. Wow, girl. This has been a lot to consider and I'm so glad you've made a decision. I think you're making the right choice, based on what you've said... and WHA-HOOO to the airplane travel! Please keep me updated, here or on email?

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    1. Thank you Kristi! I miss you tons and I've got plans to binge-read your latest posts soon! ;) And I will definitely keep you updated...thank you for being here and for caring. xo

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  8. You know we've got your back, friend. Let us know if you need to talk. <3

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  9. Here for you, K! Always your backup! If you need/want to talk any of this through, we are here!

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