Gracie had an absolutely awesome weekend!!! We are finding that the name brand seizure meds are agreeing with her beautifully. We've seen her frustration levels go way down, she is content, happy, cooperative, she is talking even more, she has hardly been grinding her teeth at all (this used to be a VERY common occurence), her biting has pretty much stopped. I think we've only had one bite in 4 days. She is singing more, content to just look at a book or magazine on her own for a while, doesn't need constant attention, and after years of trying to get her interested in blocks (with no success), she took her blocks and began building towers, then knocking them down, laughing, and starting over again. I talked with Gracie's neurologist yesterday and asked her if this was just a fluke or could the name brand meds really make that big of a difference. She indicated she was not surprised that they made a difference for Gracie. Gracie just seems to be very sensitive to many things.
I was trying to figure out why we didn't notice a dramatic difference when we switched her from name brand Topamax to generic a couple of years ago...and then I realized this switch took place when she was on major steroids -- which made her majorly grumpy...so we really didn't notice a dramatic effect at that time. They say things happen for a reason and I'm now so glad that she had a major reaction to the new batch of generics. It helped us to realize she really does need the namebrand.
On Friday night, Gracie was just a hoot, so funny and full of energy! On Saturday she had a great day too. She was happy to play by herself for periods of time, read books, build block towers, and loved attention from mom and dad too. Aunt Sheila and cousin Kayla came to visit for a while on Saturday afternoon. Gracie loved all of the attention and was very sad to see them leave.
On Sunday we had a fairly lazy day and Gracie continued to be such a good girl. She helped us vacuum the carpet and loved it. This is the girl who used to scream in terror whenever we would bring out the vacuum cleaner. When we were done, she insisted she wanted to do more. Jeff left around 3:00 p.m. for play rehearsal at his church, so Gracie and I took a nice nap, ate a fairly early supper, and then headed to the neighborhood school playground. Gracie didn't want to swing, just slide. Then she had a great time chasing robins. She ran and ran and ran. She would get so close and then they would fly away. She started yelling at them "nice, nice, nice" with sort of a sad look. Then I realized that is what we say when we pet puppies and kitties. Gracie wanted to pet the robins. When we got home, we went to visit neighbor Diane's flowers. Diane let Gracie pick a daffodil and take it home. She is SO proud of her flower. We put it in a vase and when daddy came home and asked her where she got the flower, she proudly announced "From Diane".
Gracie's nights have been a little more restless. Last night as she was trying to fall asleep she was so restless and she had her shirt up and kept rubbing her tummy and scratching. I asked her, "Gracie, what can mommy do to make you feel better?" She responded in a desperate voice "LOTION". So we put lotion on her tummy and that seemed to do the trick. I just love that she can tell me what she needs.
Gracie had a good day at school and at daycare yesterday. Her daycare mom said she was very verbal and just so much fun yesterday. When I got to daycare to pick her up she was crying very loudly and was very sad. She and another little girl knocked into each other and she fell down. She really didn't seem to be hurt, but we think her feelings were. Once we got in the car, she recovered quickly and she was in a great mood all last night. Her latest thing that cracks me up is that she wants to feed her food to the kids on TV.
Stay safe and warm...we're supposed to get between 4 and 6 inches of snow today. Hmmm, I thought it was April...and springtime.
Love,
Lisa, Jeff, and Gracie
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