Monday, March 28, 2011
SEIZURES, SEIZURES & MORE SEIZURES!!!!!
This past week I took Emily to Albany Medical Center for a follow up appointment with her neurologist. He determined that the new medication he put her on (Lamictal) is making the seizures worse. Emmie is now having 20something seizures each day!! Over the next several weeks, we have to wean her off the Lamictal, then wait a week, then start a new medication called Depakene. I am really getting my education on meds! I forgot to add that Aidan had to go with us to the appointment because wouldn't you know it, on the same day as Emmie's appointment, Aidan didn't have to go to school. It was kindergarten screening day at his elementary school so kindergarteners didn't have to go. Lovely! :( I also forgot to add that Eric couldn't go to the appointment because he has only been back to work for 2 months & he didn't have enough time to take off. He used it when we all had the stomach bug. Great! :( So, Aidan & Emmie & I waited in the lobby, thankfully for a very short time. I remembered to bring our portable DVD player & a movie for Aidan. I even remembered headphones! I filled his bookbag with cars, trucks & snacks. Aidan was well behaved during the appointment. He was glued to "Tugger the Jeep", one of his favorite movies about an Army jeep that wants to fly. (Yes, we love vehicles in this house! :)) The doctor also wanted Emmie to get her blood drawn. She will need to do this periodically while she is on the Depakene to get her liver levels checked. After the appointment with the neurologist, I trekked down to the blood lab with Emmie & Aidan. I pushed Emmie in the stroller & Aidan followed, carrying the DVD player. Aidan was in awe of the nurses & all the paraphernalia. Emmie screamed her guts out as the nurse drew her blood. It was not easy for me to see her go through that, but we got through it. After the blood test, the three of us took a walk to the Dunkin' Donuts in the hospital. Mommy needed a latte!! Then we headed over to the gift shop so Aidan could pick out a new vehicle for being such a good boy. He always remembers where the gift shop is. It's kind of sad that he's been there that many times with his little sister. Aidan picked out a school bus & we were on our way. Our journey with Epilepsy has been long & frustrating. We are coming up to a year with Emmie's diagnosis. I feel like we have done everything we can with Emmie's current neurologist & it is time for a second opinion. I took Emmie to her pediatrician a few days ago & she is helping us start the process to go to Children's Hospital Boston. I have heard rave reviews from Emmie's therapists, the Epilepsy foundation & friends in the Down sydrome community.We have no idea how long it will take to get an appointment...weeks? months? Who knows. I am so excited just to get the process started. Roadtrip! Boston, here we come!! Time to get Aidan ready for swimming lessons. He'll go to lessons & Emmie will get therapy in the daycare. Aidan will shower & get in his jammies after lessons, we'll pick up a Happy Meal on the way home, then bedtime for everyone!! I am such a multi-tasker!! :)