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Kelly Patient Expert

San Francisco, California
Jenelle is 5 and suffers from a rare form of Epilepsy called Lennox Gastaut Syndrome. Please feel... Full Bio
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I have a confession... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures (I wrote this 5 years ago for my Aunt Onie) I have a confession. I'm 35, 36, 37, 38, 39 years old, and I've never cooked a turkey. It looks like I'm not going to start this ye ... Read on »
Anniversaries and Thanksgiving by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Type the word "Anniversary" into the search engine for this blog and you will find many posts from the last 6 years about Jenelle. The first anniversary of the day w ... Read on »
Photos to Share & Updates by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Lots of you have been asking and wondering why I haven't updated recently. Well, life is getting busy for us in a good way. I have more energy each day, and the kids are as bu ... Read on »
Talk About It! NEAM 2009 by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures November is National Epilepsy Awareness Month!Purple is the color for Epilepsy. According to most recent estimates, seizures and epilepsy will develop in 200,000 otherwise hea ... Read on »
Happy 7th Birthday Jenelle! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures As I was uploading the video below to share for Jenelle's Birthday today, I heard a huge "thud" in the hallway. Apparently, Jenelle fell into the door in the hall, a ... Read on »
Busy days and a Follow Up by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Life has been extremely busy lately. Illness, sports for Jack, surgery for Brett, and a trip to UCLA for Jenelle... not to mention increasing hours at work for me. Last Tues ... Read on »
Seven by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Recently, I was playing around with the settings on this blog, and decided to change the Archives on the right side to a "hierarchy" setting (a setting that shows th ... Read on »
Another visit to UCLA by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I had a follow up appointment today with my oncologist at UCLA. Jack did not have school today and decided to tag along for the ride. He wore his UCLA sweatshirt and was hop ... Read on »
New Normal, New Habits by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures With Jenelle, we've always been adjusting to our "new normal" as we like to call it. Whenever Jenelle meets a new milestone, or has a set back, it changes our norma ... Read on »
Full Circle by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Brett and I took the old familiar drive up the 405 today for a follow up appointment with my oncologist. Prior to seeing her, I had to have a blood draw. Today for some reason ... Read on »
No piggy in our house! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Finally this afternoon we got the results from Jenelle's test for Swine Flu and it was negative! Jenelle held her fever for most of the weekend and has been fever free since ... Read on »
Because we don't do things half way in this family... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures So, when I got Jenelle from daycare yesterday, her caregiver mentioned that she had been lethargic all day. I dismissed it thinking it was this heat, but took her temperature ... Read on »
Light the Night by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures A very good friend of mine from many years working together is participating this weekend in the "Light the Night" fundraiser for the Leukemia & Lymphoma Society ... Read on »
And we begin... again... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I started the chemo pills last night and am weaning off Predisone. Other than a slight headache today (which could be something else entirely) all is good so far! I am to ha ... Read on »
Just waiting by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Well, we think my rash may have been caused by the phlebotomist. It mainly stayed in the crease of my elbow where they had drawn blood. I forgot to tell him that I was aller ... Read on »
hang on a second... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures So, we're now on hold to start the chemo meds. On the morning of my appointment on Thursday, I woke with some itching on the inside of my arm. I mentioned it to the doctor, ... Read on »
And we begin... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I had another follow up yesterday at UCLA with my oncologist. Things are going well with the rash, so she has started me on my chemo maintenance drugs. The course is so conf ... Read on »
School and Summer Fun by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Anyone who has been around Jenelle in person knows that she gravitates to anyone with food. She may stumble and walk slow when we try to change her diaper, but if it's meal ti ... Read on »
Follow Up at UCLA by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures We made it safely to UCLA and back today without any celebrity deaths! Thank Goodness! I had a follow up with my oncologist today and things are going well. She finally gave ... Read on »
More Hair by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I was waiting to update on Monday, but realized it had been a while since my last update. Things are going well for all of us and we had a wonderful 4th of July. I rested most ... Read on »