I’ve been slow getting updates here, but we’ve been pretty busy. Leeza has continued her weekly PT sessions, along with some speech and occupational therapy,  and we’re still working on getting a wheelchair ordered. She uses a walker, her ankle/foot braces and a velcro contraption called a Theratog to help her walk when she’s at church or other open places, but most of the time she scoots to move. She got to try some crutches a couple weeks ago and she doesn’t have the core body strength to use those at this time. We hope in the future they would be an option for her. We have had a few people ask if she’s expected to ever walk independently and the answer to that is no. Both of her hips are dislocated (and there’s no way to fix that) and she’s never expected to gain control of anything below her knees. It doesn’t mean she won’t be independently mobile, just that she’ll need some sort of equipment to support her.

We’ve also been spending a bit of time at the University checking out her brain. Her shunt had been adjusted to a lower level last time I wrote, but when we went back in a couple weeks ago the new MRI showed that almost 1/3 of her head was water. The shunt was allowing the ventricles in her brain to decrease, but her brain wasn’t growing fast enough to fill in the space so her body was filling it with fluid. Not good. The shunt was put back to a higher pressure and we go back in this coming Wednesday for more MRIs to see if it looks any better. We knew that Leeza was acting more confused than usual and was just totally lost when we deviated from our normal schedule. In the past couple of weeks we’ve noticed several other changes in her, but it’s difficult to know whether they’re because of all the changes going on in her brain or because she’s growing and her spine is still tethered. The symptoms of both are very similar and very frustrating at this point because we’re watching her decline and there’s nothing we can do to stop it until her brain is stable. The spinal surgery will release the nerves that have attached to the bony part of her spine and will stop any further damage, but until that surgery can be done damage is continuing to happen and she is  losing function that may or may not be regained. At this point we just ask for prayers that her brain would stabilize so we can keep our surgery appointment in May and for patience and understanding for all of us as we learn to live with this uncertainty.

On a happier note, we got to go visit my family in Texas last week for the first time since Leeza has been home. She finally got to meet her Memama, had her first chips ‘n salsa, met her first horse (she was terrified!), met 2 more of her cousins and was in her first race. Philip and the kids, my mom, one brother and his girlfriend all participated in a race while we were there and we had a great time. Despite our fears that she wouldn’t do well on a long car ride, she did great! We spent almost 16 hours in the car on the way home and with the exception of 1 food fight in the back seat, it was pretty uneventful. Thank goodness for DVDs!

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