Okay Kiddies... We were up at 630am...is it only 4....gosh....Im beat!! Well we were up at what I consider the ass crack of dawn and I was just too anxious to sleep! After madie had her predictable 7am seizure she was back to bed with a full tummy... I beagn to get her bag together and eat my cereal and read my paper... By oh...915 we had to wake her up to go...the ride was an eternity...I hate long car rides and I already have to sike myslef for the ride to N.C NEXT WEEKEND....gah(30 minute rides are like my limit anything longer seems like an eternity! 40....60...let alone 10 hours.! ) ANYHoooo we found the place pretty well...I mean its only humugous we parked in the garage...2 bucks an HOUR! dang! Childrens in hartford is a buck.. So we park and load up madie...its about 10am and we had a 30 minute gap till the apt enough time to "find the place" Well finding the place was easy weasy...so when we got there madie beagn to cry...and cry...and cry....Oh gawd...So I took her over to the bathroom so I could change her and mix a bottle in the bathroom...some old lady compleatly "zoinked" the bathroom right out from under me! (its a single ) When I say "zoinked" I mean like when you are RIGHT there and someone speedly...yet casually comes and takes your spot right from under you. like "oh! Sorry toooo slow!! Zoink!" Gah!!! I am also with a beast of a stroller that I hATE.. So I recline the stroller and change her right in the hallway in her stroller giving anyone who looks funny at me a "look" Madie continues to cry.... I bring her to Miles and go back to mix a bottle and come back and we are already ready to go in! SO QUICK! I have never waited less time in my life!! I sit with her in the chair in the exam room and feed her while we wait...."ahhhh madie is alllll better...." But she is ready to sleep...doh. SO some other doc comes in and I breif him on the beginning of time when this whole battle with seizures began...Now I can never talk about madie with an actual person without welling up and crying....ladies, LASH EXACT mascara CHANGED my life!! Fully intact! thru tears!! (Good ol Oprah) So anyhoo I am going on and on with Miles butting in here and there with more acurate times of when things were began and ended...we go into how she is on THREE medications now and is just way to drugged.. We go into how she is just beginning to flip herlself over and roll and how she is when seizure free even for a few hours is a different kid! Yet she is so drugged...sometimes fighting the effects...and then the waterworks come when I tell them that I just want her better and want her to someday STAND on her feet and play and giggle and be a kid! Okay so a kid that will always need extra help in her life but A KID... He finally says Ok and goes to talk to the actual doc who will be dealing with Madie...we wait....madie springs to life and begans to try to roll off the exam table...maybe one of us should sit with her miles says...lol...So as Miles entertains her on the exam table I read some Home and garden mags and wait... When the doc comes in he goes into how he would like to try to wein her off her Topamax....Topamax?? Oh gosh we have been with our second child Topamax since the beginning of time (when seizures began!) and increase the new drug she has been on for about a month and a half..and then wein her off the Clonopin that is making her hazy as hell...(is hell hazy?) and keep monitoring her new drug...if activity increases then we know that they were somehow working if not then we are able to take a sigh of relif and get her off some of these drugs... ONE down..two to go....gah I Tell ya she has been 1 or 2 a DAY.....may sound oh so bad but this is the best controll we have had yet! Now this big decrease comming with her new drug...BUT what if the new drug is just working WITH the other drugs? is it soley the new drug or is the Topamax and Clonopin actually not working at all....? ugh. Before her new drug I told him it was getting up to 5 a day...so something is working...maybe not a high enough dose?? gosh. SO confusing...so scary....spesh when its your bay-be you are talking about! Any other little random brat...SURE "keep em in that rat cage for a few weeks and see what happens" "is he foaming at the mouth yet?" Okay that is mean....All I.S (Infantile Spasm) kids are just heartbreaking...each one is differnt...some bad outcomes, all face delays, all are just kids...kids tryinng so hard to beat these damn seizures and be kids...Some grow out of their seizures and lead great lives...some are on meds all their lives to help them not have seizures..if it turns into some other form of seizures.... I felt today like I finally had a doc on my page...YES get her off some meds! YES I agree with the Drug from Canada...(that is not FDA aproved in US..) he is going to call the Neuro in hartford and let me know the things he thinks...and they are going to get back to me... In the meantime I have a almost 26 pounder on my hands! madie gained 3 pounds! OOOOF!! So for now....we look forward to our vactaion and its another quiet night when I can get madie to sleep I think I deserve a glass of wine tonight. Cheers. me. | 
