Saturday - Hanging with Mommy

Gracie had a good night, but it was a little too short. She awoke at 4:30 a.m. and then fell back to sleep but was restless. She awoke for the morning at 5:30 a.m. I must have forgot to tell her that today was Saturday and we could sleep in. She wasn't sweet snuggly like she usually is, she instead insisted upon pulling my hair. She knows she is not supposed to do this and when I tell her "no" she gets into this thing where she grabs it with both hands and hold on and pulls for dear life. Needless to say, this is not tolerated.

Jeff had to work today, so Gracie and I played and worked on skills. She even did a purposeful release on command, but only one. The way I see it, that is a start. We did alot of singing and dancing today too. Gracie was in a good mood and for the first time in a really long time didn't have a perpetual runny nose.

Today we decreased Gracie's Vigabatrin again. She is now only taking 1/2 pill once a day and this is the last week she will take it. Unfortunately, I'm seeing more jerking movements in her sleep. I think we may end up having to do another increase in her permanent epilepsy med --Topamax. I'll need to talk with Gracie's neurologist about this.

Gracie took a 30 minute nap this morning and Gracie and I took a 2 hour nap this afternoon. We both needed that. After nap I made apple cinnamon muffins and we were enjoying them for a mid afternoon snack. Gracie had milk with hers. I left her in her high chair while I ran downstairs to check the laundry. I came back upstairs to find my kitchen walls, my kitchen floor, and my Gracie covered in milk. She loves to shake her sippy cup even though she knows she gets it taken away if she does this. The cup was empty and she was proud of her deed. She was smiles from ear to ear.

Gracie was a little moody late afternoon and evening. I'm not sure what the cause was, perhaps being stuck in the house all day with just mommy. Hopefully it will be nice out tomorrow and we can get outdoors for some fresh air. She did enjoy her bath tonight - splish! splash!

Gracie went to bed about 8:30 - 8:45 p.m. and had a lot of twitching and some jerking. Hopefully the rest of her night will be restful.

Love,
Lisa, Jeff, and Gracie