Gracie had a fantastic morning and into midafternoon. She smiled, she jabbered, she walked a bit, but most of all she was happy to play and move around and even get into a little mischief. At one point I just sat back and watched her as she was happy go lucky and acted like a normal 16 month old (whatever normal is).
We started a low dose of Vigabatrin today and will stay on this dose for a week before we slowly start to increase it week by week. We were told that it would probably have a sleepy or sedated type effect on Gracie as she is pretty sensitive to these types of seizure medications. She actually seemed more hyper through mid afternoon and then she sort of crashed. She was very tired this afternoon, but wouldn't sleep unless I was holding her and rocking. She also became quite irritable at times, yet rewarded us with smiles as well. She seems to be able to go from happy to unhappy and back to happy again within seconds. It will be interesting to see what tomorrow brings. We also seemed to have less spasms today.
We have an ENT appointment to check Gracie's ear tubes tomorrow. With all that is going on, I sort of forgot about the tube surgery...that was the day she had her first of many seizures. On a good note, we haven't had an ear infection since!
Please keep us in your prayers for the Vigabatrin to be a success. We know many of you are hurting or have prayer needs as well. Please know that you are also in our prayers.
Love,
Lisa, Jeff, and Gracie
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1 comment:
I hope this medicine works well for Gracie.
And I agree: what is normal behavior?
Red is by far different than Blondie was.
I still sometimes call him the energizer bunny on meth.
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