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...

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 a...

She's Here!

The c-section went beautifully, Maggie was delivered at 10:17. She's 6 lbs 13 oz and has a smattering of Davey's hair, my chin, Millie's voice, Kate's ears, and Josie's temperament. Her lungs seem pretty immature so she's in the Newborn ICU for now. Millie is back in her pre-op room and has not yet been able to really see Maggie. Immediately after delivering her the doctors whisked Maggie into the NICU in the adjoining room. I've been able to see her in there and have shown Millie the pictures. The lesion on her back looks good--it looks like a patch of skin covering what used to be the hole that was there. Her feet don't have any noticeable clubbing and she definitely has more sensation there than Davey did. We are so grateful that she is here. Posted with Blogsy

Get used to the Stairs

Search This Blog