Friday, May 19, 2006


All I can say is WOW! Thank you all so very much for the donations this week - we are almost half way to our goal! With my last Jenelle update, we were barely over $2,500 as a team, and now we are at $4,700. Thank you so much for the support - please keep it coming! And if you haven't had a chance to donate to Team Jenelle's Avocados, please check it out when you can! The Walk is the weekend after Memorial Day.

Today I got a message from Jase on the East Coast that I wanted to share with everyone. Remember, Jase is the little boy who coined the phrase "Jenelle's Avocado" two years ago when he told his Mommy he wanted to be her "Avocado" (Advocate.) He could use some donations as well - he is really speaking from his heart!

Mom said it was ok if I wrote this so here goes. Please support Jenelles
Avocados. This is important to all kids. I have a picture of Jenelle from the
walk when she was sick and in the hospital. I don't want her to be sick like
that again ever. I don't want any kid to be sick like that. I have $110 raised
here in Stafford and Miss Terri and Miss Geri gave money. I am very happy about
that. I don't like girls yet but I know girls like to dance. I want Jenelle to
dance. Thank you and I am giving the computer back to my Mom now.

Click here to donate! Thanks again! I'll keep you posted!

Monday, May 15, 2006

Jenelle & Freedom Walk!

I realize its been quite a while since our last update, and now that we are getting closer to the big fundraiser "Freedom Walk" for the Epilepsy Alliance of Orange County on June 3, I really need to keep everyone in the loop. In addition to being on the Freedom Walk Committee with Brett, I’m also preparing my boss for a jury trial to start in Los Angeles the Monday before the Freedom Walk! Talk about burning the candle at both ends ... but enough about me and my excuse for not any recent updates.

Jenelle is doing well, although lately she has bouts of crying. As you know, Jenelle usually does not cry unless she is upset. My biggest fear is that she has hurt herself somewhere, and we just can't tell where… and the other idea is that maybe she has learned that crying is a way to get attention, and thus she is acting like a typical 3 year old. Either way, stress at work, stress about the Freedom Walk and a crying child make life hectic. In addition to sitting up, Jenelle is also trying to stand up and walk on her knees! Its really great to see her so interested in mobility, however she has way too many bruises from the many falls she is taking. I'm starting to be concerned that maybe we are dealing with a movement disorder because it has been difficult to keep her still - even during diaper changes and baths. Her seizure control has been good, and we are scheduled to see Dr. Shields and hopefully Genetics on the same day in late July, so I plan to bring up a possible movement disorder at that time. I've been playing phone tag with CHOC regarding her upcoming swallow study. Hopefully we can fit that in somewhere with our busy schedule soon. Recently, we adopted a new kitten who is absolutely adorable, but he thinks Jenelle is a big play toy! She smiles and giggles when he rubs his fur on her feet or face, and does not seem to be allergic like her Mother. ;)

Finally… the Freedom Walk is quickly approaching! For those of you who have already donated or joined our team - THANK YOU! I wanted to remind everyone that if they plan to walk with us that day, they need to be registered on-line in order to get a free t-shirt. If you just want to show up that day and are not concerned about the walk t-shirt, that is fine too, just let me know so I know to look for you that day! I set our team goal fairly high this year to $10,000 based on our making $7,000 for the last walk, but sadly we are just above $3,000. We realize that gas prices are horrible, and that with last summer's Hurricanes - charity giving can be tight these days. Both Brett and I are very committed to this organization because they have done so much for our family in the way of support - the biggest being the free advocate that attended Jenelle's three IEP meetings with her school district earlier this year. This is their biggest fund raiser and we hope to help them keep the services free to all families affected by Epilepsy. We hope you can help us! Here is the link to our team page:

Jenelle's Avocados

That is all for now! Thanks for your support and continued prayers - I'll keep you posted (when I can!) ;)

Wednesday, May 10, 2006

This day... a year ago...

I never felt so helpless in my life. The first one was three minutes long. The next almost 5 minutes. Then the next, only a short two minutes. After each one, she would look at me and scream, then cry until she had another. It was as if she was begging me to make them stop, and there was nothing I could do. I looked up at the doctor who was on the other side of the bed. We both had been watching the clock above; timing them. This had gone on for 20 minutes without a break. She was a young attending, and she looked uncomfortable and was biting her lip. She then looked at me and asked , "Well Mom, what do you want to do? Can she take another dose of Ativan?"

Twenty-five minutes earlier, I had called Brett (who was getting food) to tell him that it looked like they were going to send her home! And next thing I know, her seizures were out of control and instead of going home, we were in the tunnel that leads from the emergency room in the main hospital to the children's hospital across the street. It took two more doses of Ativan to stop the seizures and knock her out for the night. She was on oxygen and there was a crash cart at the end of her bed as we transported her. We were escorted by the doctor and three ER nurses to the Pediatric Intensive Care Unit (PICU), where we stayed for 5 days.

This was the first time I realized that she could die from a seizure. I felt so helpless. We've come a long way in this past year. What a difference a year makes!


I drafted the post above 10 days ago, because I've been anxiously waiting for this day to come... And pass. It is such a weird thing, I remember the exact date and time of each and every one of Jenelle's hospital admissions. This was the worst point of last year. The next date we need to pass is June 21. After that day, it will have been a year since Jenelle was last hospitalized. Knock on wood!


Just a reminder... The 2006 Epilepsy Freedom Walk is coming June 3, and we are walking as "Jenelle's Avocados" to help raise funds. 100% of the funds raised at this walk will go directly to services that benefit families like ours in Orange County, including a free advocate to work with Jenelle's school, free seminars, free therapy sessions, and free education regarding new treatments in Epilepsy. Please help us with your donation if you can - click on the button above to access our team website and make a donation.

Thank you!

Monday, May 01, 2006

Blogging against Disablism!

Forward: Today, blogs all across the internet are posting stories about "disablism", which is discrimination against those with disabilities. I was moved to participate, and because I feel this issue is so important, I am posting it at the top of the page this week, above my usual introduction about Jenelle with the funny date in the future. Please click here to visit the website that organized this effort to check out other stories about this most important cause. And now, our story...


I will never forget the first time my daughter was discriminated against because of her disability. She was only 18 months old. I remember feeling stunned and shocked and in disbelief at such ignorance. But sadly, I also realized that this was just the beginning, and that she would have to face and overcome various forms of discrimination for the rest of her life.

Jenelle is 3 now, and officially remains “un-diagnosed.” When people ask “what’s wrong” with her, my first answer is “She has Epilepsy.” We say Epilepsy because most people have heard of Epilepsy. They think they know what Epilepsy is, but unless your life has been touched by it, few truly understand what it is and is not. After Epilepsy first came into our lives, I quickly learned that the name “Epilepsy” also brings out fear, stigma and ignorance.

We believe that Jenelle first started having seizures when she was approximately 6 months old. We aren’t really sure when they started because they can be so subtle in an infant. Upon confirmation of her seizures, we began seeing different neurologists and trying different medications in an effort to stop her seizures. When she was 18 months old, we spent the night at Mattel Children’s Hospital at UCLA while they tested to see if Jenelle was a candidate for brain surgery. Sadly, she was not and we were given the news we feared most – Jenelle had Lennox Gastaut Syndrome, a rare and devastating form of Epilepsy. We were told to expect a difficult battle in controlling her seizures, that she would be severely mental retarded, and that it was possible that one seizure could kill her (SUDEP - Sudden Unexplained Death in Epilepsy). We were told she may have a short life, and that she may not live past age 5 if we could not get the seizures under control. The news was devastating.

At the time, Jenelle was enrolled in a school for the blind, as she also suffers from cortical blindness. I have always been quite open in discussing all of Jenelle’s medical problems with anyone who will listen (this blog is a perfect example of that!) The main reason for this is that her “undiagnosed” condition is so rare; it may not even be a diagnosis yet. Also, I sincerely hope that her story brings inspiration to other families that have a child similar to Jenelle. So upon returning Jenelle to school, I gave her teacher all of the “gory” details of her “new” diagnosis. This was my biggest mistake.

The next day when I was dropping off Jenelle at school, I was met in the parking lot by the school administrative director. The school board had decided that Jenelle’s condition was too severe, and that she could no longer come to school. I was shocked and at the same time felt as if the wind had been taken out of my lungs. This school catered specifically to students with disabilities, and Jenelle was not their first child with Epilepsy. Yet, as I later learned, the fear about seizures, and the possibility that Jenelle could die from one was the main reason she was immediately pulled from the school. What shocked me most was their ignorance, in spite of their catering to disabled children. Jenelle was no different the day after her visit to UCLA, than she was the day before. And sadly I realized that this “disability” would always work against her for the rest of her life.

Seizures are not pleasant to watch. They are sometimes loud, violent and are always frightening. If a seizure goes too long, it is a medical emergency. Not many people know what to do when someone has a seizure. Because of this, the word “Epilepsy” carries with it a huge stigma, and lot of misconceptions. When I first heard the word Epilepsy, I was immediately relieved because I ignorantly thought it could be easily treated with medication. Obviously, in the last three years I’ve learned more than ever imagined and I witness first hand at how devastating Epilepsy can be.

It was not too long ago that people with disabilities were treated poorly. I’m not saying that they way they are treated today is any better, but it was so much worse just a few short years ago. Patients with mental incapacities were often sterilized by the government, children confined to wheelchairs were kept in separate class rooms, students with learning disabilities were labeled as simply being “slow”, and Epileptics were labeled as having “fits” not seizures. I won’t even begin to describe the abusive language associated with disabilities. You know the names; you know the hurtful things people can say. We’ve come a long way, but we have so much farther to go.

When I see programs in schools like “full inclusion”, I realize that it is a step in the right direction. Children in school now have more exposure to children who are “different” than I ever had growing up. However, I realize “full inclusion” is not for every child with a disability, especially my Jenelle. Is it too much to ask that society treat her differently because of her disability, but that they accept her equally because of it as well?

After our first taste of discrimination, when my disabled daughter was removed from school because of her disability, I realized the harsh truth that life would be difficult for her. Six weeks later, after battling the school board, and threatening legal action – Jenelle was allowed to return to a modified school schedule. They refused to keep her in after school daycare because the care giver was not comfortable with her. I still resent their actions, mainly because it came from the very place I least expected to find it. But perhaps I needed that rude awakening, so that I could be a stronger advocate for my Jenelle.

As eloquently stated by Lady Bracknell in her “One in Seven” piece; disabilities affect all ages, all races, all religions and all political views. And sadly, those with disables are the most repressed minority in the entire world. This country fought to free our black slaves, for women’s rights and today for gays and lesbians. Why do we continue to overlook the disabled?

I hope that our story helps you realize that even the smallest and youngest one with a disability can be discriminated against. We need to open our minds and our hearts, and we need to make life better for everyone, even those who appear to be a little different.