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

Curse Educators Mutual Insurance

Went to the hospital this morning to check in for surgery. Bottom line, we were sent home after hours of battling with the insurance company. Our insurance has denied our claims and all of our efforts thus far. We are not alone though. All day we've been surrounded by amazing doctors and staff. They spent the majority of their day right next to us battling it out with insurance. We are exhausting all our resources, and I'm hopeful that things will still work out. We also have an attorney who wrote a letter and called the insurance on our behalf. The hospital will not do the surgery without medical coverage. Bottom line, the expenses could be more than we could imagine or ever hope to pay off if there are complications. And remember, only 20% do NOT have complications. I just don't believe that we've come this far only to walk away. We are spent and deflated. How much longer can this go on until we fly back to Utah and fight this battle from home? Our absol...
6 comments
Read more

Flippidy Floo Flah Folic

Last time I was at Shriners, one of the doctors asked if I had checked my folic acid levels after having Davey.  I responded that I'd never heard of anything like that and had not checked them.  The doctor then proceeded to say she had spoken with a geneticist about our family...two kids with spina bifida.  The geneticist said that I most likely don't metabolize folic acid properly, so that's why my last two children have spina bifida.  In summary, they thought that if I had checked my folic acid levels after Davey, I would have seen that something was wrong and could have prevented Maggie from having spina bifida.  As I listened to these burning words, I thought, "Do you know what you're saying?"  I turned away, bounced with Maggie, and wiped my tears. I'm often asked about folic acid.  It's an integral part of spina bifida prevention , and I should lecture about how everyone should take their folic pills.   But I'm not in t...
20 comments
Read more

At The Moment

Josie was reluctant to go to school today.  Friday was her "worstest day ever" of kindergarten.  According to her account, nobody would play with her at recess.  "I would ask different girls but they said they wanted to play with somebody else."  Then on the bus ride home, a girl kept pulling her pigtails, sang a mean song making fun of her and yanked her backpack.  I asked Josie how she reacted.  Her response, "I just sat in the corner."   When Matt heard the story he said, "Nobody puts Josie in a corner."  Just like Patrick Swayze.  I think it's easier to say goodbye to a daughter being wheeled into an operating room than watch her venture into the great unknown of kindergarten. Speaking of surgery, we are still in limbo for Maggie's surgery... ETV-CVF .  We are scheduled for this Thursday, but I'll meet with the neurosurgeon on Wednesday and reevaluate whether or not we should proceed.  We don't know what to do...
7 comments
Read more