Get used to the Stairs

Thanks to many of you who have written sweet comments and shown your support for us.  I still have not figured out how to reply on my blog.  So when I push "reply" next to a comment, I type a comment to that person, but then it comes back with a message saying it cannot be posted.  Hmmm...  I hope you know how much we love our friends and family! Maggie returned home from the hospital this afternoon.  Since she doesn't need an IV, oxygen or morphine, they let us go.  She looks pretty bad.  From head to toe she is stitched and bruised.   For a shunt, they make incisions in her stomach and behind her ear to thread the catheter through.  Too many cuts for my liking.  When Davey saw her at the hospital, he did a loooong, high pitched, sympathetic, "oooowwwwwwwie...Baby Maggie.  I'm getting a tear in my eye." Now we are enjoying General Conference weekend.  It's a privilege to cradle our girl and attempt to softe...

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...

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. ...

Happy Birthday Mom!  Thanks for being my example and rock.  So glad you were born and that you are my momma.  I long to live closer and celebrate this happy day with you! Happy Anniversary to Maggie and me.  Six months ago today we had our fetal surgery.  I remember saying before surgery, "I just wish it was six months from now."  My hope then was that everything would be 'normal' six months later.  Well that day is here, and I'm so glad to be at  home listening to Maggie sigh and grunt as she swings, rather than laying in a hospital in Houston hoping for a miracle.  Thank you my dear family, friends, reporters, doctors, nurses and strangers who showed amazing care and support.  It seems so long ago.  Good thing we had a great news crew who documented way too much, so I'll never be able to forget :)  This line makes me cringe, "It's something every parent does for their kid, no matter what the kid."  What??? ...

No surgery today.  Same old story.  I cancelled Maggie's appt. with the neurosurgeon yesterday.  Instead, we visited on the phone and decided postponing the surgery would be a good thing.  Nothing has changed with Maggie's head size, eyes, and other clinical signs of hydrocephalus.  Next week we will get a head ultrasound and take it from there.  I hope we are making the right decision, but it's sure nice not to be in the hospital this weekend.  Matt is sick, and I can feel it creeping in on me. A friend sent me this video.  I concur with it all, except for the sign that says, "Praying to the same God/Savior who put you in this position is kind of futile, no?"  False.  Praying to my Heavenly Father is the most important and meaningful part of my life. I don't know how anybody can make it through their day without the eternal perspective and peace that prayer provides.  Anyway, enjoy the video.  Love you all!

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...

We went to Shriners yesterday for Davey's new set of casts...blue and orange this time.  While there, we registered Maggie as a new patient at Shriners.  It felt surreal putting a patient sticker on her too.  I've been apprehensive about this appt. for a couple weeks wondering if Maggie would need orthopedic care.  The doctor checked her out, head to toe, and everything looks perfect.  AMAZING!  While Davey was getting his new casts on, there was a newborn baby right next to us getting her first set of casts.  I remembered how hard it was four years ago to hold my new baby with casts.  I wanted to tell that sweet mom, "It gets easier."  But honestly, that's not true.  So instead I said, "Doesn't it just stink to have your baby in casts.  Good thing she is so cute."  Then I gave her tips on how to keep pee from stinking up the casts. On the way home, Davey and I heard, "Just The Way You Are" on the radio.  He learns all s...