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.

Emotionally and Physically Preparing for UCLA

Well looks like everything is set for UCLA. We will be admitted there on July 8th for a Video EEG study for min. 24hrs up to 4 days. Nick & my folks are going to be staying at the Triverton House kind of like a Ronald McDonald house I think. We are still waiting for all the paper work from the hospital to arrive, need to get a hold of the social worker @ UCLA to make sure all pre approval is done and ready. I'm getting a bit more nervous as I've done research about what a Video EEG will be like, look like & what to expect. Originally I had understood that Jordan can move around the room freely, however come to find out she will need to stay with in view of stationary camera. I have a feeling that means near or on the bed for up to 4 days. We have gathered books, coloring books, paints, stickers, DVD's and CD's. We are blessed to have received a care package from Sprout TV with 2 DVD's, a Wiggles CD, coloring book, stickers & crayon. SUPER blessed. We also received an email from Big Idea's AKA Veggie Tales and they are sending Jordan 3 DVD's, a plush Bob & Larry, and a Veggie Tale coloring book. We got an email from Chuggington saying they too are sending a care package. Jordan would love to have a few Trainies with her, but if not at the hospital then we might buy her a few when we get home. Next I have to work on gathering supplies for crafts while we are there. I'm not the most crafty person but Jordan loves ALL kinds of art work stuff so I'm going to try. ANY ideas or suggestions are greatly appreciated, many people have already sent me a few ideas & thank you for those.

Recently I read an article going over how to prepare Jordan for this. With her having so much Dr & hospital contact so far I think the day before might be best. But I'm concerned how she will react to ALL of this.

A few things we have noticed and hope for explanations to

1) She is licking, bitting, and chewing EVERYTHING.
2) What kind of Seizures are these if Dr. Lerner things she was misdiagnosed.
3) She often has hiccups is that anything to be of concern as " Hiccups are also a kind of myoclonic jerk specifically affecting the diaphragm." from Wikipedia
4) She has trouble sleeping & wakes up often during the night. Fights going to sleep by screaming, crying & saying she is scared. Which makes me think of SUDEP .
5) She will often go from being fine and playing to in a corner crying saying she is scared. From there it can often take up to an 1hr to calm her down. Once the "episode" is over she is fine like nothing ever happened.
6) She zones out sometimes during an "episode" or upon waking & often while watching TV. Other times she is talking and interactive with whatever show she is watching.

As the journey continues with prayers for more answers, improved health, reduced seizures, reduced medication and less questions.

Blessing & we can't thank you all enough for ALL your prayers & support.

Kelly

Dr. Appointment today for Jordan

Please pray for us today! Jordy has preschool 8 to 10, then a Dr appointment (she has been chewing, licking and biting stuff plus having really bad screaming episodes more then just tantrums. They come and go quickly and at times she just stares off), then back up for PT. We are going to see her Ped but also called into UCLA. Her video EEG isn't until July 8th.

May & June Photos (1st day of School and more)

I had to wake her up on her 1st day of school.....my sleepy head, just like her mommy

Rise and shine! It's your first day of school

Just waking up for 1st day of school


Jordan's first day of school



Kai the birthday girl

Jordan enjoying the Land Shark for Kai's 3rd Birthday party










She just LOVES the beach.

She is ready to go on an adventure exploring the great outdoors.


Jordan practicing for her 1st day of school....NOT her 1st day just pretending :D



Jordan and I walked with Stephanie & Lily for the Arthritis Walk.
Jordan's eye rash from allergies

Home sick

Well Thursday night Jordan started running a fever of 101. With so many meds recalled there wasn't much we could give her. By early Friday morning still running fever of 101. She had no other symptoms going on. Nick went to CVS first thing in the morning to see what he could find to reduce her fever. We called her in sick to school on Friday. She started with a cold by Saturday, runny nose, itchy eyes, cough and fever off n on.

This morning Jordan is feeling better but not yet ready to go back to school. We've called in sick yet again to school. Praying she is ready tomorrow. Hope this is building that immune system so we don't have this too often. She doesn't seem to have a runny nose, eyes look better, and she doesn't sound too congested. Thanks for the prayers. During nap time today I hope to update the blog regarding her UCLA appointment & pictures from May & June.

Blessings!