Skip to main content

Update on neurologist

(Look at me sitting up at Christmas time with NO braces on!)


Gracie has had 12+ seizures in 2 months, but for the first time ever, she has not required the rescue medicine (diastat) each time - in fact, she's only used it 3-4 times. BUT she's been sleepy, cranky, insomniac, floppy... in other words, on the 3 meds (lamictal, keppra, and depakote) her quality of life has not been good.

So I was looking forward to her neurologist appointment:


Gracie's neurologist appointment went well on Thursday - we are stopping lamictal, keeping her on keppra and depakote (at higher dose), potentially starting a brand new medicine that is coming out at the end of January. We also have appointments to learn more about the ketogenic diet and vagal nerve stimulator. I was pleased that he listened to my concerns about Gracie still having seizures and more importantly not being herself on the three meds.

His eyes bugged out when I told him that we plan on moving to rural Honduras... haha!

Comments

Sintari said…
Yeah, my eyes bugged out about the rural Honduras thing too. You should be used to it by now. :)
Congrats on the good neurologist appt. I hope Gracie gets to feeling better soon.
8:49 PM
Post a Comment

Popular posts from this blog

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...
4 comments
Read more

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...
6 comments
Read more

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!
5 comments
Read more