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

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 …

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 …

Cross-eyed Cuteness

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 and made instant friends with all the nurses and technicians. I stayed wi…

Get used to the Stairs

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