About Get Used to the Stairs

My Life and Family:
I am a wife and a mother to four kids. Our son and our youngest daughter have spina bifida. When we found out in March 2008 that our son had spina bifida, we reached out to other families who had kids with SB. A mom shared with me something she was told, "Get used to the stairs/stares." Over the years, we have come to understand what that means. It's an interesting process, and our hope is that by writing our experiences, we can connect with other families and share our spina bifida journey.

The Media Coverage:
We never expected to have the media follow our story. But because of their influence, we were able to get the fetal surgery covered by our insurance. There are many aspects about the news stories that make me cringe: my voice, comparisons between Davey and Maggie, my plump face, blood, referring to spina bifida as a "disease", summing up our lives in 2 minutes, BUT my hope is that the coverage will do some good.

Insurance Battle Part 1--ABC4

Insurance Battle Part 2--ABC4

Insurance Fight Good News--KUTV2

Insurance Fight Good News--ABC4

Del Taco Fund Raiser--KUTV2

Fetal Surgery--KUTV2

Maggie's Birth--KUTV2

YouTube link to Maggie's Birth: http://www.youtube.com/watch?v=0sn4VoQ3_X8

Miracle League Follow-up http://www.youtube.com/watch?v=ZCktCPWxveg&feature=youtu.be

ABC4 One Year Follow-Up: http://www.youtube.com/watch?v=eI3wHHvQ98E&feature=youtu.be

KUTV2 One Year Follow-Up: http://www.youtube.com/watch?v=v-yMi5p0oUE&feature=youtu.be

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! This little Ma…

Building a Utah Valley Parade of Home

Our home is complete (mostly), and we are thrilled! It makes my heart flutter every time we pull up. This home is the fulfillment of a dream, full of beauty and accommodation. Davey zooms up and down the ramps with freedom. We all have our "favorite parts" of the home, and I can't narrow mine down to one.

The Parade of Homes is happening now, and every day I get questions from friends, family and strangers asking about the parade process and where we purchased things. I'll answer some of them on the blog. Keep in mind, this is just our experience. I'm sure it is different for everyone.

Why did we build a parade home? ·Some of the subcontractors offered a discount price because their products or work would be featured. It doesn’t necessarily mean it is cheaper to build a parade home, but it is possible to get more for your money. For example, appliances. We wouldn’t normally buy Bosch appliances, but with parade discounts the fancier appliances were the …

Shunt Happens

On Thursday night, I couldn't get rid of a nagging concern. Maggie's eyes were sunsetting. This is where the eyes turn downward with the white showing above. It wasn't constant, and she wasn't showing the typical signs associated with brain swelling. But the Spirit just kept working at me, and I decided to call the neurosurgeon at Primary Childrens. He wasn't too concerned and told me to come on Friday for spina bifida clinic. Once there, the doctor thought it was nothing because Maggie's fontanelle (soft spot) was still soft and of course Maggie wasn't sunsetting for him. But I didn't want to go to Houston next week until I knew for sure she was okay. So he ordered a head ultrasound. Sure enough, the ultrasound showed significant swelling in the ventricles of her brain. A shunt is needed.

Poor Maggie. I hate to see her go through another surgery. When I'm at the docs office and get bad news, I try to act brave and wait until the car ri…

Get used to the Stairs

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