The all powerful mommy is back to blog. Gracie had a very hard time going to sleep last night as she had to sleep in a crib. Gracie has never liked to be confined and hasn't been in a crib for a while. She finally fell asleep at 10:30 p.m. Only to wake up again at 3:00 a.m. and try as I might, I couldn't get her to go back to sleep in the crib. So I took her and all of her wires and layed with her on the play matt on the floor. There we slept (she comfortably, me not so much) until 7:30 a.m. I was worried because I had not seen any of the full body jerks at nap time or during the night and we were told, that they usually keep you in the hospital until they capture some. The neurology resident said they usually try not to keep kids more than 3-5 days. Ahhhhhhhhhhhhhh - 24 hours was long enough, now they were talking days???
Well, as luck would have it, Gracie had 4 full body jerks while she was sleeping (and while I was sleeping). The epileptolist monitoring the video camera and EEG witnessed them and I'm happy to report that "none of these had any EEG correlate". In plain speak, it is not seizure activity!!!! We were so relieved -- prayers answered once again.
Gracie did not like having the EEG leads removed and cried and screamed the whole time. She still has a head full of glue that will take days, perhaps weeks to remove. I got as much out while shampooing as I possibly could, but there is so much more there that we'll have to deal with. Gracie was so happy to be free, that we let her go for a walk in the hall. While we were on the EEG monitor, I had to keep our room door shut as Gracie constantly wanted to walk in the hallway, but of course her wires didn't allow that. So she was thrilled to be set free.
I packed up while Gracie and daddy walked the halls. Soon afterward, Gracie's nurse came to get me and said "you have to come see this", there was Gracie in the hallway, standing over a Somali baby in a stroller, just enamored with her. It was so sweet.
We arrived home just before noon, had lunch, gave Gracie a bath and a nap, and then Jeff headed to band practice while Gracie and I headed to a friend's graduation party. Gracie was in heaven. She had spent enough time with me over the last 24 hours, so took this opportunity to hang out with honorary Auntie Brenda and make lots of new friends. Gracie also made friends with Chloe, a Yorkshire puppy.
After the party we stopped at Aunt Sheila and Uncle Chris' house as it was time for Gracie's meds. Gracie had a great time playing with cousins Kayla and Jason. They even let her play the piano -- a bit hit. Gracie had such a big day that she fell asleep in the car on the way home. I carried her in the house to bed, and she is still sleeping peacefully.
We are thrilled with the good news today -- it is such a relief. Thanks to all of you who have been praying for Gracie. The power of prayer truly amazes me.
Love,
Lisa, Jeff, and Gracie
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