Get used to the Stairs

A year ago today I announced our pregnancy to some of you with this facebook post, " Our 4th is expected to arrive in August. The ultrasound showed a perfect spine, brain and feet. Relief! And, it's a girl!" I vividly recall my 17 week ultrasound.  I was nervous, yet confident everything was fine.  The tech confirmed my feeling, the baby looked perfect...no spina bifida.  Once I got in the car, I cried tears of joy and thanked Heavenly Father for sending me a healthy baby and for the opportunity to heal and have a normal pregnancy.  On my drive home, I called Matt, my mom and sister to share the news.  I didn't realize how much anxiety and worry I'd been carrying.  The unsaid gloom had been lifted.  I felt healing and peace for three weeks. 

I've been working long hours lately which means I do less around the house and everyone else does more. Matt is awesome at household chores, homework and dinner.  When he gets home from work, he takes over and does it beautifully. Kate changed both Maggie and Davey's diaper while I was on the phone with a client.  Then she said, "Mom you need to teach me how to do the catheter, so I can do that too."  Wow! Josie's job around the house is to make it beautiful.  Her decorations have a paper theme and are hung with tape throughout the house.  It's a process that starts from the time she wakes up and continues late into the night.  All of the cutting and coloring gives her plenty of opportunities to clean up after herself.  She also loves to wash dishes. Davey's responsibilities are tough.  Even small tasks take incredible effort and energy for him to complete.   This morning as I was dressing him,  I wondere...

Maggie's a little perplexed with her new accessory.  She does not like them and has cried a lot today.  Luckily, her developmental delay means she doesn't grab at objects, so the glasses stay put...bonus!  After picking up the glasses, we ran some errands.  Davey with his wheel chair, Josie with her bright lipstick that she's not supposed to wear in public, and now Maggie with her goggles. Get used to the stares.

I just saw a Subaru commercial.  Reminds me, I should write about the Urabus (Subaru backwards).  It's pronounced, "Your-a-bus", and that's what Matt and I call Subarus.  Before I dive into this topic, I should just say that Matt and I drive boring, cheap, frumpy cars.  Nothing cool about our Caravan and Mitsubishi.  I've never had a sweet car.  Even in high school I drove my parents purple minivan.  So yes, I wonder what it would be like to drive a hip car.  But that's not going to happen.  Have you ever seen the vans made for wheelchairs...not hip. When Davey was born, Matt and I became frequent drivers of Foothill Drive, otherwise known as Subaru Drive.  This stretch of road is the path to the University of Utah, Red Butte Gardens, Hogle Zoo, Stein Mart, and Primary Children's Hospital.  We are always amused by the number of Subarus on this road.  It's rare to see a white Honda Odyssey (Utah's state car).  Instead, do...

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 ...