Gracie was a hungry girl through the night. She woke up twice needing to be fed a bottle of soy milk (yes, she's a soy girl....cow's milk/formula has never agreed with her). She woke up this morning with smiles and spasms. I liked the smiles, I wish the spasms would go away. She did better today with the double dose of Vigabatrin. She still looked stoned, but she didn't let it stop her today. She was a busy girl, so busy that I can't leave her for a moment as she pulls herself up on furniture, but then loses her balance and falls backwards. (Needless to say my trips to the bathroom are extremely hurried, I never know where I'll find her.) She also did some solo walking today, which she initiated. She just decided that she didn't want to be by the couch anymore, so walked into the kitchen. Her steps are still very slow and deliberate and she did lose her balance once, but I got her back on track and she made it to her destination. She is so proud of herself when she can walk and pull herself up. She loves for mommy and daddy to tell her what a big girl she is too. She smiles from ear to ear.
Today was an antibiotic day, so her tummy was upset again today and even more so tonight. I'm still keeping an eye on her digestive symptoms, things still aren't working quite right.
Gracie's early education teacher came today to work with Gracie and they had fun with a light up cow and jingle bells. Gracie was very cooperative. I think she was happy to see someone other than mom.
We still had plenty of spasms today. We saw a couple of very strong ones again. The strong ones concern me. We are sick of calling them spasms and seizures so at our house we call them "hoogie boogies", which also makes Gracie smile. Her strength and spirit continue to amaze me, she tries so hard to be happy. When she's not, I know there is truly something wrong or she's not feeling well.
Love to all,
Lisa, Jeff, and Gracie
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