Little Miss Jordie

Im an so sorry it has taken me soooo long to update!!!! Well I guess alot is new, I have months of updates to do.
Well Miss Jordyn is right now as we speak laying in a hospital bed. For those of you I dont talk to on a regular basis heres the scoop. Miss Peanut has been seizuring ALOT and throwing up at night after them. Yea its a load of fun. Im sure its not fun for her either but waking up to someone puking isnt fun!!! Thats been going on for a few months now. I have called Dr. Collins (very good doc @ Akron Childrens) her GI Doc. he had scheduled her for, actually today for an appt for a check up but she is at the clinic so... they are scheduling months ahead which sucks. So now i had to reschedule and it wont be till sometime in Dec. YIKES!!!! Anyways she is at The Cleveland Clinic in the Epilepsy Monitoring Unit. We are here for 3-5 days, video and EEG monitored. Got here yesterday her dad stayed with her last night I guess she showed them how it is and had lots of seizures so he didnt sleep any. I got here this a.m. and he went home. (its his BDAY 2day!) Today has been both bad and good... quite a few seizures although thats why we are here. Now for last couple hours been wonderful!!!! We even went for a walk and she talked the whole way. Been wiggly and cute this afternoon and evening! Prob go for another walk later only supposed to be unhooked for 15 min or so at a time.
Dr Gupta came in a little bit ago. Jordie IS NOT a able to have surgery. The cysts on her brain are not causing seizures the seizures are actually coming from the other side. 2 more meds we can maybe try we will talk about that tomorrow. Also talked to Dietitian today about the KETOGENIC DIET. I think that is the next thing we will do. Did blood work today to send to New York for dr to look at for the Folinic Acid. Also did blood work for med levels. Hoping to go home tomorrow. Since she has been so good and giving them the seizures that they need to see and showing them how we have been at home i think we will get out here before 5 days.
A little about whats been going on with Jordie at home..... SHE IS SPOILED ROTTEN!!!!! Jordie gets a lot of attention from her nurse. Miss Tammy is wonderful with Jordie!!!! And Jordie responds great to her! They are together 8am-4pm mon- fri. she works with the peanut and she goes to therapys with her and she gives her bath which she totally loves especially getting her hair combed that just makes her day!!!!!!! NOT! Tammy gets Jordyn to eat more then anyone else can. which is great! Jordyn just got the Ohio Home Health Waiver so she will now get 16 hrs, 7 days a week nursing!!!! WOW! then they will put a ramp on the house and a lift for the tub and a NEW CAR SEAT!!! WOW! Christmas in October. LOL
Well Im going to go take Miss Jordie for a walk to the big fish tank on this floor they wont let us escape!!! LOL
Well I will try to start updating more often.