Over due update

First to start off. Jordan was taken off all medication Saturday July 10th. She is still seizure free and off medication.

We were down at UCLA for 5 days. Jordan was attached/tethered to an EEG machine and video camera for the whole time for 5 days. It was not easy & we had to get very creative to keep her busy but it was a success. We were admitted on July 8th (Thursday) she was on her full normal meds. The instructions were to push a button and log down anything we thought was seizure activity. The Dr.s came in the next morning & said all that we marked was in fact NOT seizures. They have three checks (spot check, my push button spots are checked & the system notes any seizures) There were no seizures thus far. Friday night all but one pill of Jordan's meds were removed & same deal push the button & mark the log. Saturday morning we again were told no seizures. Saturday was the 1st full day Jordan hasn't taken any meds since March 18th 2009. Again push the button & mark the log. Again Sunday morning told still no seizures. At this point they said we needed 48hrs clear of no seizures to send us home off meds. Monday morning again told no seizures and discharged with only a Rx for emeregancies (grand mal seizure only)

We took pictures and video all of which I hope to get loaded on here soon.

The nurse staff was great. Of all Jordan's toys & such her biggest hit was her Chuggington DVD & Train they sent. No matter how upset she was or frustrated being attached to EVERYTHING her train and DVD always cheered her up. All the toys, DVD's, stuffed animals were AWESOME they helped keep her entertained and happy. Jordan even had a visitor from a VERY large white doggie. He at one point even climbed into her bed and tried to lay down with her. By the 3rd day we started to get creative. Attached to Jordan's head were a ton of EEG leads and the cords were attached to a 2lbs box and the box was attached to a computer & video camera. We put Jordan's backpack on her & put the box in it so it could be easier for her to carry & we chased her around the room with the other cords. We still couldn't move far due to the fact we needed to keep her on camera as much as possible.

It was such a blessing to have Jordan's Tetah & Papa (Kelly's parents) with us to help. Twice Kelly was able to go back to the Tiverton House for a shower and a 3hr nap.

Well back home now. Jordan is so much more alert, active and happy. She is doing GREAT. She is starting to sleep at night better but seems to want to give up her naps. Mommy isn't ready for that & is still trying to catchup on so much lost sleep. Mommy dreams of either a Hawaii vacation or a spa getaway. Both will have to wait but mommy will keep dreaming.

Thanks for all the support, prayer & encouragement we couldn't do this with out prayer!

Blessings & thank you!
The Harvey Family

Tsukihoshi shoes are amazing

Jordan has been wearing a pair of Tsukihoshi shoes for the last 5 months or so. They are a great shoe. They have great arch & ankle support. Jordan always seems to walk better in these shoes. As she has out grown her shoes I decided to write the company inquiring about discounted cosmetically damaged shoes. We got a few emails back from different people in the company who had received my email & read our blog. Two days later the following arrived.

We can't express how awesome this is for Jordan. They fit her perfectly & she is already doing SO much better being back in her Tsukihoshi shoes. Yesterday she walked a rope balance beam at the park for the first time. We are excited to watch her gross motor skills grow as she has the physical confidence & stability thanks to her new shoes!

Tsukihoshi shoes, Gabriel, Takako & Brandon of Badorf Shoe Co.

Thanks Sprout!

We were blessed to receive a package in the mail last week from Sprout. A special thanks to Rebecca a publicist at Sprout for sending us a care package for Jordan's UCLA stay. All of this will really help to past the time & keep Jordy busy.