Skip to main content

Fingers Crossed

Maggie is a candidate for the alternative surgery...ETV/CPC.  That's great.  It is a rather new procedure for Primary Childrens.  The one doc who does it is out of town until tomorrow (Monday).  His schedule is full until Thursday but there is a chance a spot will open up tomorrow.  So Maggie will start fasting tonight and get prepped for surgery in the hopes it will happen.  The docs give it a 50/50 chance.  Please, please please let it happen.

Matt, Maggie, and I attended sacrament meeting at the hospital today.  It is a humbling experience to be surrounded by families who are filled with such faith.  We look around and see children suffering from so many afflictions and parents with heavy hearts.  But we are all united by the power of the atonement and the knowledge that families are forever.  There is a feeling in that room of  "come as you are".  It doesn't matter what you wear, Sunday clothes or hospital robes...it is all Sunday best.  The music is often Primary songs and the one talk is always simple and full of pure doctrine.  The partaking of the sacrament pierces my heart, and I yearn to recommit.  I'm sure not having the other kids to wrestle with contributes to my reverence :)  It was also a rare treat to sit next to Matt and watch him hold Maggie.

Tomorrow will be a full blown spina bifida day for us.  In the morning, Davey gets casts on his feet/legs at Shriners Hospital.  It's been almost a year since his last set.  Every Halloween he's had casts to help correct his club feet or realign his hips.  It makes for a fun costume.  Plus, we were supposed to have our first big appointment with Kids On The Move.  I need to remember to cancel that.  Sometimes I think, "Is this really all happening?"  In a good way, of course.

Now I've got to shower and return to the hospital.  I know I could stay home and sleep in my own bed, but it's too hard to leave the Mags.  She has a "Mag"netic force on me.  My poor roommate has to listen to Maggie grunt, push and snort all night.  Oh well, I have to listen to her snore.

MRI

Cool headband to cover her IV.  I want one of those next time I get an IV.

Aunt Lesa and Maggie.





Comments

  1. Praying for y'all Millie! And I am SO glad I got to see you and hold that sweet girl last week!

    ReplyDelete
  2. Wow. What a week. Good luck with the casting (ugh, no fun!) and the (hopeful!) surgery for Maggie.

    ReplyDelete
  3. My girl, also a sb/fetal surgery baby, had the ETV surgery at 10 months old, and she is currently 25 months and has never needed another surgery. <3

    ReplyDelete
  4. And I thought I had a hectic Monday.....

    Oh I hope I hope I hope she gets what she needs.

    ReplyDelete
  5. You guys are Rock Stars! We so missed you the other night. Praying all will go well today for you.

    ReplyDelete
  6. Thinking of you, as always! Good luck with it all- you are Super Woman!

    ReplyDelete

Post a Comment

Popular posts from this blog

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...

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...

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...