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Spina Bifida Links

Utah has a great support group for spina bifida families.  The first activity we went to was when I was pregnant with Davey.  I wanted to see how kids with spina bifida look and acted. The families there were so kind as they shared their support and experience with us.  It's always nice to visit with other moms who "get it".
http://utahspinabifida.org/

I had fetal surgery on Maggie's back when she was 25 weeks in utero.  Children's Memorial Hermann Hospital in Houston performed the surgery.  We were so blessed by this wonderful team.  They will forever be our miracle workers.  This link has a video detailing spina bifida and the fetal surgery.  It was a great resource for us as we tried to decide whether or not to do the surgery...not an easy choice.
http://childrens.memorialhermann.org/texas-fetal-center/spina-bifida-myelomeningocele/

Facebook has a few groups for moms who have had the fetal surgery.  For women who choose the fetal surgery, it can often be a lonely road.  These groups connect you to other families who have been there, done that.
https://www.facebook.com/groups/SpinaBifidaFetalSurgery/
https://www.facebook.com/groups/119828200230/

Kids on the Move is fantastic!  Davey started receiving services when he was just two weeks old.  Now Maggie does too.  These therapists and workers become an integral part of our kids reaching their potential.
http://www.kotm.org/

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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…