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Showing posts from 2014

Close to You

We bought our home in 2007 prior to the market crash and before the diagnosis of spina bifida blessed our family.  Our home has seventeen stairs with all the bedrooms on the second level.  Davey has conquered the flight, but it's tiring for him to go up and down several times.  Maggie has yet to climb one step of the stair mountain.  Her little world is the floor of our home, and the stairs cut her independent exploration in half.  The thick carpet, small kitchen, narrow door jams, and stairs make it difficult for a walker or wheelchair to be used.  As a Realtor, I'm always studying floor plans and looking for homes without stairs, but we live in Utah where basements are king and almost every home has multiple levels.  My list for "someday" is long.  There are many families who have the same accessibility challenges, so we focus on what we love about our home and get used to the stairs . Yesterday I transferred all the pics and videos from my phone to the computer.

Space Time Continuum Paradoxes

Two years ago today we were in Houston, TEXAS! embarking on a new chapter in our lives.    (Yes, I know I capitalized and exclamation pointed the word in the previous sentence but as we all know, everything associated with that word is bigger, bolder, and begs to be shouted from the rooftops).    At that time our little Maggie was still developing in the womb, Davey had an awkward buzz haircut that showed just a little too much forehead, Josie was enthusiastically enjoying life as a hog-caller-in-training, and Kate reveled in her newly acquired ability to read simple chapter books.    We had experienced a surreal week of preparation, heartache, and joy as everything fell into place for us to move forward with Maggie’s fetal surgery at Children’s Memorial Hermann Hospital .    Two years ago today that surgery was completed by an amazing and awe-inspiring group of miracle workers.    Millie recuperated, Maggie was born, and here we are.   In some ways, not a lot has changed—Maggie

Surgery and Nursery

Can't sleep.  Spina bifida does that sometimes!  On Tuesday Davey will have surgery at Shriners Hospital.  Some call the surgery a bilateral tibial rotational osteotomy.   I refer to it as fixing the feet forward.  Here's how he walks now.  See how he trips on his feet because they turn inward.  That's a result of being born with clubbed feet.  Hopefully in two months after his casts have been removed, his feet will face forward.   This is Davey's 8th surgery (I think).  It's difficult to know how he processes the thoughts of surgery.   He is most excited to have a slumber party with his dad at the hospital, and for his Papa from Texas to come and sword fight with him.  It's been a long time since Matt and I had one of our kiddos in an operating room...over a year.  I've appreciated the break and pray the doctors will have skill, wisdom, compassion and clarity as they care for my little boy.   My heart is really heavy concerning Maggie.  Spina bifida does