Skip to main content

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





Labels:

Comments

  1. EmilyOctober 3, 2012 at 2:25 PM

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

    ReplyDelete
  2. ChristinaOctober 3, 2012 at 4:15 PM

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

    ReplyDelete
  3. angeeOctober 3, 2012 at 7:58 PM

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

    ReplyDelete
  4. The Houston FamilyOctober 4, 2012 at 10:18 AM

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

    ReplyDelete
  5. Sarah-rahOctober 4, 2012 at 2:10 PM

    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

    ReplyDelete

Post a Comment

Popular posts from this blog

Curve Ball

Maggie is out of surgery. Things did not go as planned. As the doctor put it, "she threw us for several curve balls." We could not do the ETV. Once in her brain, he discovered that it would be too risky to proceed because of her anatomy. From what we remember, her pituitary was too close to an artery. As they were pulling out, a blood vessel burst. They had to get that bleeding under control before sewing up that side of her head and cutting open the opposite side for a shunt. That's when the neurosurgeon called us to tell us the disappointing news that the ETV wouldn't work. He said he'd come back to visit us in 45 minutes once the shunt was placed. We always knew this was a possibility, but were told her anatomy was "perfect" for the ETV. Guess you can't judge a book by its cover, even with an MRI. Shunt surgeries are common, and it is rare to have serious complications. But two agonizing hours later, we were told what happened. Duri
24 comments
Read more

She's Here!

The c-section went beautifully, Maggie was delivered at 10:17. She's 6 lbs 13 oz and has a smattering of Davey's hair, my chin, Millie's voice, Kate's ears, and Josie's temperament. Her lungs seem pretty immature so she's in the Newborn ICU for now. Millie is back in her pre-op room and has not yet been able to really see Maggie. Immediately after delivering her the doctors whisked Maggie into the NICU in the adjoining room. I've been able to see her in there and have shown Millie the pictures. The lesion on her back looks good--it looks like a patch of skin covering what used to be the hole that was there. Her feet don't have any noticeable clubbing and she definitely has more sensation there than Davey did. We are so grateful that she is here.     Posted with Blogsy
27 comments
Read more

Shunt Happens

On Thursday night, I couldn't get rid of a nagging concern.  Maggie's eyes were sunsetting.  This is where the  eyes turn downward with the white showing above.  It wasn't constant, and she wasn't showing the typical signs associated with brain swelling.  But the Spirit just kept working at me, and I decided to call the neurosurgeon at Primary Childrens.  He wasn't too concerned and told me to come on Friday for spina bifida clinic.  Once there, the doctor thought it was nothing because Maggie's fontanelle (soft spot) was still soft and of course Maggie wasn't sunsetting for him.  But I didn't want to go to Houston next week until I knew for sure she was okay.  So he ordered a head ultrasound.  Sure enough, the ultrasound showed significant swelling in the ventricles of  her brain.  A shunt is needed. Poor Maggie. I hate to see her go through another surgery.  When I'm at the docs office and get bad news,  I try to act brave and wait until the car r
17 comments
Read more