At 22 weeks gestation, our family was pleased to hear that we were expecting another little girl. However, our hearts dropped when we heard she was diagnosed with Spina Bifida. They told us she had a lot of fluid in her head, called hydrocephalus. We were horrified to hear our little girl would never walk and would be facing possible brain damage.
Our hearts knew there was no way we could not continue the pregnancy. She was closely monitored to make sure the fluid wasn't getting to be too much and that she wasn't under any stress. 37 weeks Addyson was delivered at John's Hopkins Hospital.
At only 3 hours old she faced her first surgery, which was needed to repair her spine and to have a shunt placed in her head to relieve her head from the pressure of hydrocephalus, which often accompanies spina bifida. After a few days she was safe to lie on her back and began cereal casting to correct her bilateral clubbed feet. That first year was especially tough for our family, which was booked full of doctor's appointments. Addy went through 6 months of soft casting which ended with another surgery; heel tendon release. Then at a year and a half she again had surgery to repair a hernia.
Every day is a struggle. We had to adopt a strict regimen of catheterizing, medications, doctors' visits, and physical therapy. We had to move out of our 2 story condo because it was just too small. We are currently bouncing from rental house to rental house, unable to afford a home of our own yet. Any home we do get will need certain features like a walk in tub or a shower lift, wheelchair ramp, doorways widened and possibly other modifications.
Any and all help will be greatly appreciated. Lots of love! KCCO
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