Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged walker

Walking!

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As of last week, Leeza is officially a walker! We got her new outside walker that allows her to maneuver pretty easily on uneven ground and moves so quickly that she can almost jog in it when she really gets going. After a short conversation with her physical therapist we decided if we were going to expect her to walk as an adult now was the time to enforce that she’s a walker…not a scooter. Except for quiet time each afternoon she uses a walker all the time and it’s been amazing how much stronger she’s getting with all that practice. Her core muscles are so much sturdier (no more falling over all the time) and she’s suddenly become aware of her feet and where they are some of the time. Because she can’t feel them and hasn’t used them most of her life, this is a pretty big deal! She is not always aware of where her WALKER is so our walls and shins are taking quite a beating, but hopefully that will get better with practice. All this walking means she has to wear her Theratogs (hideous velcro therapy torture to position her legs) almost all the time. I used to cry every time we had to put those things on because they are so confusing, but I’ve gotten to were I can get them on her about 5 minutes. Thankfully, Leeza doesn’t really seem to mind them. At our last PT appointment her therapist was amazed at how much progress she’d made in the last month and we rejoiced when we realized the contractures in her leg muscles had stretched out enough that she is in the ‘normal’ range for someone in her condition, which allows her to stand up straighter.

After a couple days of enforced walking Leeza did finally ask me why she couldn’t scoot anymore. I asked her if she wanted to scoot when she was a mama and she got a horrified look on her face and told me she wanted to cook when she was a mama. I told her she had to stand up to cook and she informed me, ‘I stand and I COOK!’ The kid is motivated.

We have friends who are going back to Leeza’s orphanage to adopt a second child in just a few days and we’re hoping to get a video together to show the doctor and therapist who worked so hard with her to keep her healthy. They had told her she had to stay strong so she could learn to walk some day and she apparently believed them because she’s never really doubted that she would. I wonder how often they ever get to hear what happens to the kids they work with and Philip and I both wish we could see their faces when they get to see Leeza running around her front yard like everyone else.

Please check out our friends’ blog at http://hebrewselevevone.blogspot.com. They are a truly remarkable family and are adopting Gage, who we blogged about months ago, and just brought home Madeline a few months ago. They are a wonderful example of trusting Jesus and I’m sure they would appreciate your prayers as they go through the process of bringing Gage home.

Changes

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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!