Sunny Sunday

Gracie slept from 8:00 p.m. last night to 7:00 a.m. this morning. Once again her sleep was very restful and she woke up in a great mood. I'm not quite sure what to credit these restful nights to -- perhaps the decrease in Prednisolone -- but I'm so relieved that she is finally getting restful sleep.

This morning we gave Gracie her LAST dose of Prednisolone! It was very exciting to know we are done with it. Again, we thank God for it being our miracle drug to stop the I.S., and we thank God that we can hopefully close that chapter of worry and continue our journey to making sure Gracie is as healthy as she possibly can be. We will continue the Zantac and the Bactrim (antibiotic) for one more week and then that will be the end of both of those. She continues to take Topamax twice a day and more than likely will for her whole life to manage her epilepsy. She is also still taking Vigabatrin twice a day...we'll touch base with our neurologist soon to get a plan to wean Gracie off of that.

Gracie played hard this morning and was a very happy, but tired girl. At 9:45 a.m. she fell asleep and didn't wake up until Noon. After lunch we went outside to enjoy the beautiful day. We walked on the sidewalk and Gracie tried out her new shoes and her orthotics outside. Rather than walk, she would bend down toward the ground and watch the puddles of water. I had my work cut out for me in keeping her from touching them. Maybe I'll let her have that experience as soon as she doesn't have to suck her thumb every few minutes. Then we took a stroller ride. Gracie was in heaven. She sat straight up and kicked her feet in happiness.

Daddy got home from his band duties at church around 2:00 p.m. and Gracie was happy to see him, but was winding down. She fell back to sleep at 3:00 p.m. and took a 45 minute nap. When she woke up, Gracie and daddy took another stroller ride and I'm told she was grins from ear to ear.

She was such a smiley girl all day. I bought her a new hat today and when Jeff put it on her head she gave a big grin and left it on. She's always been good about wearing hats. With her Topamax we have to be extra careful with her in the sun and heat. She isn't able to perspire normally, so we'll have to have a spray bottle with us when it gets too warm and when we start to perspire, we'll have to keep her moist as well. She also needs to stay well hydrated.

She is now tucked into bed and is a sleeping beauty.

Love,
Lisa, Jeff, and Gracie