Jenelle's Journey: October 2013

Friday, October 25, 2013

Updates from UCLA for Mommy & Jenelle

Yesterday, Jenelle and I made the trip to UCLA for follow up appointments. Jenelle's appointment was first at 11:00, where we met with Dr. Shields nurse Sue Yudovin. Of late, Jenelle has been very quiet and to herself. Sue noticed immediately that she was not her usual happy self and wondered if it was due to seizure activity. After a lot of discussion about recent events including our trip to CHOC via ambulance, we decided we need more information rather than simply increase medication.

So, right now, Dr. Shields is going to order a 24 hour Video EEG to be done at UCLA so we can see if Jenelle is having sub clinical seizures that we are simply not seeing, or of there is any new seizure activity. Her last Video EEG was approximately 3 years ago, so it's time. We are hoping to get that done before Thanksgiving, but of course it all depends on insurance ... and the availability of hospital beds. We also talked about the possibility of implanting a VNS (Vagus Nerve Stimulator) which could be used to stop cluster seizures instead of relying on Diastat and other meds. I think we approached the idea of the VNS a few years back, but it was put on the back burner in light of my cancer. Of course, a Video EEG will be necessary to determine if she can be a canidate for the VNS, so we'll kill two birds with one EEG, hopefully! We are going to keep her medication levels on hold for now in case we need major changes after we get more information from the EEG. Please send some positive thoughts that this gets approved quickly.

As for me... my labs were perfect! We still don't know about the results of my cancer screening as that takes a week or more, but most likely in light of my recent numbers, it will be clear - knock on wood! As you may recall, I've been having bleeding and clotting issues recently that they were trying to stay on top of. All of my clotting numbers were normal as were my platelets, so things are good! I go back in 4 - 6 months for another follow up and am poised to hit my 5 year cancer free anniversary without a hitch! Wahoo!

That is all for now - I'll post more as we get a date for the EEG.

Tuesday, October 22, 2013

11 Years Old!

I know this is going to be a fantastic year for our Jenelle; after all, 11 is my lucky number so it has to be hers as well! Wow, 11 years old! 8 years ago, I could never possibly imagine this day, yet here we are.

So, what's new for our girl? Well, since our infamous ambulance ride to CHOC in early September for the 35+ minute seizure, we've still been battling too many cluster seizures (absence seizures). So much so, Dr. Shield's Head Nurse Sue has decided to see us before our scheduled appointment in late December. We will travel to UCLA on Thursday for that follow up. As of now, Jenelle is completely off Felbatol, and on a fairly strong dose of Onfi at 15mg twice a day. Since that status seizure in early September, we've used Diastat twice more, which is 3 times too many in the last 6 weeks!

THANK YOU to all who made donations towards Jenelle's goal for the CHOC Walk. We woke up early last weekend and walked a 3K through the park... however, the best part of the walk was when Jenelle got excited to ride the tram... her favorite ride at Disneyland. In all, she raised $685, and our team raised almost $2,000! It was a wonderful day - here is a photo of our team:

Team Stradling Yocca Carlson & Rauth at 6:15 AM!

On Sunday the 20th, we celebrated Jenelle's early birthday with family. We had tacos... Jenelle's favorite... and an ice cream cake from Cold Stone Creamery! It was a perfect! Here are some photos for you to enjoy!