Pinny is doing great. So are we. Yesterday marked seven months of no seizure/spasm activity and we are beyond thrilled. She is on the least amount of medication that she has ever been on and even that med we reduced to half of the initial dose. Pin is getting stronger, steadier, faster and growing more into her fun personality. We have a LONG way to go to catch her up to age level, but we are SO grateful for her progress so far. Little by little we will get there.
Our weekly schedule looks like this:
Monday: Developmental Therapy
Tuesday: Aquatic Therapy
Wednesday: Speech Therapy (focus: rib cage molding) and Chiropractor
Thursday: Physical Therapy
Friday: Speech Therapy (focus: speech production and feeding)
We have a full schedule but are so blessed by the amazing people we have met and for their love they have shown to Pin and us.
We met with Pin's neurologist last Friday and he was so excited for us. He said again, based on Pin's initial EEG (7 days old), the way that she is faring is abnormal. She is doing better than they ever expected and said it is again, very possible that she is completely outgrowing her seizures. Dr. M explained that after a person is seizure-free for two years, the seizures will typically never return. We are praying toward that end.
As of today, Pin has "graduated" from helmet school. She is finished and now I don't have to schlep that thing around everywhere. One milestone down.
Jeremy & I
Ahhh. Life is becoming more normal and so is my heart rate. I no longer pass a "landmark" where Pin had a seizure in the car and break down crying remembering 'when'. I still get a little nervous when she falls asleep in the car but I'm doing better. I am working out again and trying to lose the stress weight that I put on. Jer is doing great and has some exciting adventures ahead (work related) for him. He continues to be an amazing husband, father and provider for both Pin and me. Pin smiles so big when her dad walks through the door at the end of the day.
Thanks for caring...We love you all.