Gracie's busy weeks

Gracie has a sleep study tomorrow - that should be interesting seeing as she doesn't really sleep well lately (most likely due to mega doses of meds)! But I'm eager to get the results and see what's going on at night and this is the next step to getting an MRI which is A step toward possible epilepsy surgery which I'm now actually HOPING that she'll qualify for. The thought of neurosurgery (even for a doctor) is terrifying, but as it could cure her, it would certainly improve her quality of life!

She's now up to double the max recommended dose of Keppra and a high dose of lamictal and still had a seizure on Friday. We're starting Vitamin B6 which has some effect for the mood swings that come with keppra and also has some anti-seizure effect. We also put most of her lamictal dose in the morning to help with her insomnia... next week is her long term monitoring video EEG!

Comments

Anonymous said…

Great pics ;)

7:39 AM

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...

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...

Ana Gail Rattin

Ana Gail Rattin (pronounced Ah-nah) Born December 5th, 2007 at 5:35pm at 42 weeks weighing 7lb 8oz, 21 3/4 inches long Some adventures at birth, but everyone's doing great now! Read Luke 2:36-38!

Rattins living Coram Deo

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