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
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
Jordan's eye rash from allergies
