Saturday, October 2, 2010


October already? It seems impossible. Emily will be SEVEN on the 16th. That is incredible! How many times have we been told she wouldn't be with us long. Here she is, and THRIVING! :)

Her seizures have been a ton better this week. She's had quite a few drop seizures when she's sitting on the floor. She just drops straight over, often times forward onto her face. It happens SO fast, in a split second! We have seen a bit of absence seizures and lots of small myoclonics, but that's about it. No tonic clonics at all! We go to UCLA Epilepsy Center this Thursday finally! We've been waiting months for this appointment. I am leaving at 6am for a 9am appointment, as it's in the far end of Los Angeles. Traffic from here to there for a 9am appt will SUCK. It's going to be a long drive, it better be worth it! ;)

I got the formal results of the EEG Emily had two weeks ago after her first ambulance ride of the week. It showed constant seizure activity in the left temporal region. She had them when she was awake and they increased in activity when she fell asleep. The office results read "Sleep-activated left hemispheric sharp waves, encompassing the C3 electrode. Profound background slowing. The above findings are consistent with the patient's clinical diagnosis of symptomatic focal epilepsy, and appeard as Lennox-Gaustat Syndrome".

This EEG just proves what I have thought for a long time now. She is seizing during the day a lot, but as soon as she falls asleep it's almost non-stop! I hope that UCLA takes this seriously. We are getting beyond exhausted in this house.

Emily's IEP is this Tuesday also, so this will be a busy week. I hope YOU are all doing well!


Sarah said...

I'm so sorry that she is seizing so much! We too will be going to UCLA sometime to see the Mito doctor there. and yes, traffic does suck! and it's so bad at that time of day. yikes! I hope you get some answers at the appointment. Poor lil booger. I HATE seizures... and bad motility. i can't figure out which one i hate the worse.... i think seizures though because of how evil the seizures can look.

Alison said...

I really hope the epilepsy clinic can help - that sounds like a lot of seizures. And a lot of traffic. Hopefully it will be a worthwhile trip.


A very busy week! You are in our prayers!

Jenny said...

I can't even does she make it through a day? She must be so exhausted from constant seizing! You're in my prayers. Hope the appointment goes well.

Elizabeth said...

If I can do anything for you when you're up this way, please let me know. And don't forget to tell whoever sees you that I am on the board of the Epilepsy Foundation, so be nice!

Zoey's mom said...

And we come from the opposite direction and that drive,does indeed suck!!

So glad you are finally getting there.Hoping and praying that they will have some tricks up their sleeve.They truly do have some of the best in the "business" there.I just have to believe they will have answers.

All of our experiences there have been stellar and I just know sweet Emily will be in good hands!

Seven?Wow.Amazing how these children defy the odds.We have so much to learn from them.

Michelle and Sean said...

I'm glad that things have settled a little bit this week. I really hope they are able to help you guys out!! I can't wait to hear what they have to say!

Yay for Emily's birthday!! How exciting!!

Good luck with everything this week. I will be thinking of you guys!

HennHouse said...

We'll be praying hard at the HennHouse on Thursday... for some answers and for some relief.

Bugg's mama said...

Oh, my. Seizures. Grrrrr.

Those costumes are the cutest thing I've ever seen! Ooooooh! I want a kiss!

The VW's said...

Seizures STINK!!!

Praying your appointment goes well on Thursday! Hope you get some answers and solutions!

SEVEN?! What a great thing to celebrate! HUGS!!!

TMI Tara said...

Oye, I hope they get some real answers for you soon and help for sweet Emily.

Will you send me an email to I want to send you the details on kidz krew, but if I just reply to your comment, I'm not sure if it will get to you or not ;)

Thinking of you guys as you have a busy week!

Eric said...

I'm glad you joined the "extreme multi complex handicapped children" page. Looking forward to communicating.