Get used to the Stairs

Written by Matt. We've had lots of appointments this week. Thursday:  Millie and Maggie went to the Primary Children's in Riverton for an ultrasound on the kidneys and brain for Maggie.  Everything looked good.  Friday:  Maggie's first follow up since her shunt surgery.  To us, she seems to be doing quite well except for her eyes crossing.  But as soon as the neurosurgeons saw Maggie, they said she needed to get an MRI.  He felt that it was urgent enough to do the scan that same day, but Millie was too sick to stay at the hospital and was lucky to drive home without crashing.  If you’ve never heard Millie crow up,  you’re missing out (it’s a mix between coughing and throwing up).  And we did an ultrasound on Davey's kidneys that day.   Saturday:  The MRI.  Millie was still too sick to go to the hospital, so just Maggie and I went.  Maggie was charming as usual even on the required empty stomach...

Fair Warning :  This post will not interest 99% of the people who click on it.  It's mainly for me to remember, and for the grandparents in Texas.  It has nothing to do with spina bifida. Josie --Celebrated her 6th birthday!  Breakfast with Nana and Pa.  Elementary Christmas Sing.  Dinner at JCWs with the Rileys.  Thanksgiving Point lights.  Loved her Brave bow and arrow, red wig, make-up, 12 pack of Fresca, and fur vest. Josie lost her first two teeth in one night.  Oh man! Christmas Parties --Grandma Killpack's party, Grandma Peterson's party, Ward Party, Adult-only Rindy party.  We were so sad to miss our party with old neighborhood friends.  Darn sick kids.   Rindlisbacher Party/Talent Show Christmas Eve --The most magical night of the year! The beautiful angel declaring tidings of great joy. And the beautiful narrator.    The shepherd, Mary, Joseph and Baby Jesus. The...

Last night was our Spina Bifida Support Group Party at Boondocks.  Here's a few highlights: Learned the Mele Kalikimaka spina bifida style...no stepping or hip motions. Just hands. Saw old friends and new families.  There's an instant connection others.  You can dive right into the questions.  Why is she crossed-eyed?  Do you like doctor ____?  What's your insurance covering?  What size catheters do you buy?  We always come home feeling boosted by these great people. Volunteers.  This group is run by dedicated parent volunteers who give so much of their time and talents.   Coloplast...the group that sponsored the event.  They make catheters.  When was the last time you went to a party sponsored by catheters?  They even handed out free samples and showed the latest inventions...prelubricated and self-contained.  Fascinating!   Watch out for the wheelchairs...lots of kids doing wheelies as we maneuvered ...

The highlights for November: NEW FRIENDS - -A group of Utah moms who had the fetal surgery gathered for lunch.  We showed off scars, talked shunts and shared surgery stories over bowls of yummy soup. I finally got to meet baby Cullen.  His mom, Amanda, also had the fetal surgery at Children's Memorial Hermann Hospital in Houston.  They live in Amarillo, Texas...just a few minutes from my home town.  It's amazing how we instantly share a bond. VCMG --Davey and Maggie had a test done on their bladders. Maggie's bladder is healthy looking for the most part, but we will continue to cath once a day to make sure she is able to fully empty.  Davey's bladder isn't as sparkly.  We will cath him 4 times a day, and in a couple months he'll start on a medication.  It will allow his bladder to hold the urine instead of constantly leaking.  Super fun! WEDDING --My little bro, Taylor got married this past week to Kim Brown in the Lubbock Temple...

For the first time since March, life is "normal".  Maggie is finally becoming the baby she was born to be.  Her wounds have healed.  We love tickling her toes, blowing zerberts on her stomach, and helping Davey give her piggy back rides.  She sleeps through the night and smiles when she wakes up.  Sometimes I am asked if Maggie has been "cured" because of the fetal surgery.  Nope, she still has spina bifida, but for now her scars are the only indicators of spina bifida.  And her cathing.  And her sunset eyes.  And her big head.  And...okay, the list goes on.  But life is still normal and having a little baby in the family is wonderful! For the first time since April, I feel pain free.  The recovery from the fetal surgery and c-section took longer than I expected, but I no longer get shooting pains.  I remember laying on the couch during bed rest and reading my friends Facebook posts about running marathons.  Well, t...

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...