Get used to the Stairs

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...

The evidence is too compelling to ignore any longer.  Maggie’s number of destiny is 17.  Consider the following: ·          If you add up the number of letters in Maggie’s full name it equals 17 (if you do the same thing with Millie’s full married name it also equals 17) ·          Maggie is the 17 th grandchild on her father’s side (Thanks T!) ·          Maggie was born on the 17 th of July ·          Her birth occurred at the 17 th minute (10:17) ·          Millie’s recovery room after giving birth was room 2721.  Take the numbers in that room and (2 x 7) + 2 + 1 = 17. ·          Maggie’s first surgery took place on 7/26/12.  (7 x 2) + 6 – 1 – 2 = 17 ·          Ma...

This weekend will go down as one of the most meaningful and monumental times for our little family. Kate was baptized on Saturday.  She radiated joy!  Kate is the rock of our family.  She is always wanting to do what's right.  Later that night, my parents took some grandkids to McDonalds.  Davey was playing in the area sectioned off for kids three and under.  This concerned Kate because Davey is four, and she did not feel good about crossing the invisible line to help with Davey.  Her desire to follow Christ's example with exactness makes me want to do better...and roll my eyes at times.   Maggie was blessed on Sunday.  She cried the whole time.  Matt said many wonderful things.  Here are a few phrases my cousin wrote down afterward, "Your birth and arrival was made possible because of the love and care of many, both on this side of the veil and the other side."  Also summarizing, "You've been given the gift of charity.....

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. ...