Our stress-o-meter

Gracie is our Stress-o-Meter (patent pending). It took us a while to notice the trend, but she used to have a seizure on, during, or after every family holiday or major gathering, at the birth of Ana, etc. She also has clusters of seizures with change in seasons or dramatic changes in weather. She's had remarkably few seizures in the last year since getting the vagal nerve stimulator implanted and turned up. We praise God!

However, last night she had a good long seizure that just wouldn't break so she ended up needing diastat - poor baby! Then we analyzed the situation (we can't help ourselves!). She's been acting stressed out, she clearly knows that something major is on the horizon as we await baby brother. (AND, the weather shifted from one of the hottest summers in a long time to one of the coolest summers in a long time.) Our kiddo is MUCH more aware of life stressors than we give her credit for!

We have been getting extra coaching on using Gracie's Vantage communication device. This is so exciting because she is FINALLY starting to be able to point her index finger in order to access the touch-screen icons. She obviously knows WHERE to touch to get the response that she wants (we have to be really silly to motivate her to work this hard! but that comes naturally to us!) and is able to narrow it down to essentially a four-square area. She still needs prompting to keep her other fingers tucked in and not just claw at the screen - but SO much progress!!

Comments

Josh said…

Our girl is just plan aware. She may not let you know that ... until you understand that wry little smile of hers!

11:55 AM

Family of Three!

We are in Liberia - the electricity goes in and out because the generator is having trouble keeping up these days! So hopefully it will stay on long enough to post and the internet connection will allow me this luxury! We were united with precious Gracie on Thanksgiving day - I will write more about this later. But, oh! is Gracie a joy! She is so beautiful, so joyfilled, and a bit mischievious. Her physical limitations do not permit her to accomplish much mischief, but we can tell that she is trying to push some limits already. If we were not in love with her already, she is irresitable and such a treasure and blessing from God. In our two days together, she has not cried once. She spends most of her days smiling, she loves to snuggle (good match for us!), and has the most contagious laugh! Life takes more effort for her - her cerebral palsy is moderate and every activity is a challenge and is clearly tiring for her. Meal times (which she loves) take a long time and much patience and d

Check out this progress!

A year ago, my friend Rachel http://josiecomehome.blogspot.com/ emailed a photo of her beautiful son standing on his own... I've since dreamed of having a photo to post of Gracie doing the same thing. It was always one of those wild-don't-think-it'll-ever-happen kind of dreams, a romantic, fairy tale type of dream. But this week, Gracie made another leap in development and muscle tone. It started when I leaned her up against the wall and planted her feet a shoulder-width apart. For the first time, she didn't lunge for the safety of my arms or hands, but rather, she allowed herself to stand steadily on her own two feet and she kept her center of gravity centered over her feet instead of wildly in front of her or to one side or the other. She even quickly figured out that she couldn't lurch around in excitement while standing on her own two feet with no support but a wall behind her back, but rather had to express her excitement over this new development with a gentl

Amazing girls!

Gracie and Ana have taken to walking around the church together - Ana pushes Gracie's gait trainer as Gracie walks along. Between the two of them, they make a pretty efficient team (except for the steering part!). They love it and could do it for hours! Gracie has made amazing strides (no pun intended) in standing up - we'll get some video up soon of her standing, supporting herself ONLY with her right hand (her otherwise useless hand) - it's amazing! We didn't dream that we'd see her looking this strong and steady. Plus, now she's smiling and her little heart isn't pounding out of her chest with stress at the thought of standing up without human contact - God is SO good! Gracie went to music camp this summer at the Y which was somewhat fun for her, but definitely good to have her around other kids.

Rattins living Coram Deo

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