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Awareness Month

The month of October is Spina Bifida Awareness Month.  In honor of this grand event, our family has decided to more fully engage in our devotion to spina bifida.  So far, we've been successful.  I think I need to reassess my goals to fit my life.  Instead of becoming thinner, cleaner, or nicer, I should set the following goals:
  • Drive to the hospital daily
  • Give to the pharmacy weekly
  • Attend surgery monthly
  • Lift weights (Davey) thirty times a day
  • Raise blood pressure
  • Call insurance every other day
  • Forget to pick up kids Mon., Thurs.
  • Listen to talk radio 2 hrs/day
  • Cath, enema, and bath children as little as possible
  • Sleep less
Success, I accomplished my goals!

Maggie will have the ETV-CPC surgery tomorrow.  Her ventricles are continuing to grow.  We are hopeful this surgery will work like a shunt but will prevent the need for a shunt.  It's amazing how quickly the treatment for hydrocephalus has changed since Davey was born.  He had a shunt placed just days after being born.  This procedure wasn't an option back then.  Primary Children's is one of a few hospitals in the United States that perform the surgery.  I complain about driving back and forth to Shriners and Primarys, but we are so blessed to live near accomplished and cutting-edge medical care.  

This is Davey a few days after his shunt surgery.  You can see the bump with stitches.  I think Maggie's incision will be in the same spot, but she won't have the large bump and tube down the side of her head.  We took this pic the day Davey was blessed.  We will bless Maggie on October 14th, so she'll be sporting some nice stitches too.  Better find a bow or something.  Although, I'm not sure we want to add weight to an already huge head.  Seriously, she's got a giant head...a virtual planetoid.  Reminds me of this clip from "So I Married an Axe Murderer".  http://www.youtube.com/watch?v=SJ8Rc98Xs20





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Comments

  1. I think you need to get t-shirts made to be completely devoted to the cause. And a bumper sticker.

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  2. I LOVE that movie! Good luck with the surgery. Sweet, little Maggie will be in our prayers.

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  3. Davey looks so sweet! Love you! Good luck tomorrow!

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  4. Prayers for all of you today! I sure hope you have a great case manager at your insurance!

    ReplyDelete

  5. Praying for Maggie today!

    ** I think we all should be more realistic about our goals and applaud ourselves for not being perfect, but perfectly trying! You're amazing! Love ya! ~Sarah

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