Thursday, March 30, 2006

Jenelle is Sick!

Jenelle woke up this morning with a fever of 102.9. Before taking her temperature, I had already given Tylenol Cold because she sounded stuffy. After lying her back in bed, I went to call daycare to let them know she was sick. When I returned she had vomited all over her bed.

I called the doctor's office and Roto Virus is going around - last time she had that she was in the hospital for 5 days! Two hours after the Tylenol and after giving Motrin, her fever went down to 101.5. Not good, but better than 102.9. Unfortunately she also threw up all of her seizure meds, so we're going to play the waiting game today with Diastat in hand and hopefully avoid the ER. Hopefully with her G-tube, we can avoid the hospital and keep her hydrated.

Please keep us in your prayers - Thanks!

Tuesday, March 28, 2006

Warning - I'm Begging for Money!

OK - here's your warning… I’m going to turn up the guilt with a sob story and beg for your money! Yes, it’s that time again! Time for the Epilepsy Freedom Walk 2006; Team “Jenelle’s Avocados” needs YOU!

It was in the late afternoon on September 8, 2003 when Epilepsy first touched my life. Actually, it may have been a few months before that, but that was the day our doctor called to inform me that our 11 month old daughter was having “many, many” seizures and that she had Epilepsy.

When I first heard the words Epilepsy, I felt relieved. I knew other people who had Epilepsy. They simply took medication and they were fine. They were “normal.” However, little did I know that would not be the case for our Jenelle. Her “many, many” seizures turned out to be more than 100 seizures a day. We were hearing words like “difficult to control”, “short life expectancy” and “mental retardation.” I had no idea that Epilepsy could be so devastating, and obviously, I really didn’t know as much about it as I thought.

It has been a long fight with as many as 10 different medications, sometimes 4 medications at a time. Our Jenelle finally gained significant, but not complete, seizure control in June of 2005. We could not have survived that time without the resources of the Epilepsy Alliance of Orange County (“EAOC”). Through the EAOC, we gained support from other parents, education and advice from leading doctors from all around the world and advocacy for Jenelle in dealing with her school regarding her seizures. All at no cost to us.

The Epilepsy Freedom Walk is the EAOC’s biggest fund raiser of the year. Over 32,000 people in Orange County have Epilepsy. Approximately 10,000 of that 32,000 do not have seizure control. The EAOC provides more than 25 programs for people affected by Epilepsy in and around Orange County. Please help Team “Jenelle’s Avocados” in supporting the EAOC with your donation or by joining our team for the walk to bring in more donations. You can even be a “virtual walker” which means you can join “Jenelle’s Avocados” as a walker even though you may not be able to attend the walk in person. As a “virtual walker” you can solicit your own donations to help our team and the EAOC.

We should not lose another moment to Epilepsy. Please help us support this worthy cause! Click on the "Step Up" for Epilepsy box below to go to our team page. A box will also remain at the introduction at the top. Thank you for your interest and support!


Monday, March 20, 2006

The Late St. Patrick's Day Update!

I was going to send this update last Friday, but forgot! Here is a quick update on our girl. Jenelle is doing well these days and still amazing us with her progress. She is "fully" sitting up now in the "normal" fashion (not side sitting like before) but she only lasts a few seconds in this position so its been difficult to get a photo. She is also doing better with crawling and overall is very happy.

We had a set back last week. As you know we are weaning Jenelle off of Topamax. Originally she was taking 125 mg a day, and has been taking this drug since January of 2004. I would like to get her off Topamax to see if it would help her development. Also, we think it has been causing her acidosis, so we decided this was the first drug we'd try to wean. Jenelle had been doing well with the wean until last Monday when we reached 25 mg a day. By the evening, I really noticed Jenelle having more seizures than normal (9 just that night at home!) She was lethargic and seemed to be really affected by the sudden increase in seizures. A couple of the seizures were head drops and atonic jerks (where her whole body jerks quickly then goes limp.) We honestly haven't seen seizures like that for about 9 months. The next day I asked her daycare provider if she had noticed any seizures, and she reported that on Monday Jenelle had at least 12, so my suspicion that she was having more than normal was confirmed.

Being that I am now an expert on weaning seizure drugs (ha!) and because Brett and I have plans to go away for a weekend without kids for the first time since before Jenelle's seizure diagnosis, I decided it was best to increase the Topamax back to 50mg a day - a dose where Jenelle's seizures are under control. By Wednesday, Jenelle was back to normal and we haven't seen the seizures we were seeing Monday, and she is happy again. I'm such a Neurologist! ;)
It is sad to me because I was hoping that maybe these seizures had gone away, or that maybe Jenelle had grown out of them or something. But sadly, without her medication, our girl would still be seizing. Once we get back from our weekend away, I'll try to decrease the Topamax again. If she can't handle it, then I'll make a call to the real experts at UCLA to see what they want us to do. If anything, it’s a good feeling to know that she is stable with less than half of the drug she was taking!

That is all for now. I am still waiting for the final word on that last genetic test for Rett. As always thank you for your thoughts and prayers - I'll keep you posted!

Friday, March 03, 2006

Jenelle's Avocado & Genetic Test Results!

Last night, we got home to find a message on our answering machine from UCLA Genetics. Yes, the results we've all been waiting for are finally here. Not sure if this is good news or bad news, but basically we're in the same place as when we started. Jenelle's genetic test for atypical Rett Syndrome was negative (as in she does not have atypical Rett Syndrome.) There is a "follow up" genetic test for the Rett gene that they want to run, and we should have those results in two weeks. This second test however will officially rule out all possibility of Rett, so we are still in a waiting game of sorts.

What does this mean? Well, none of this genetic testing will ever change who Jenelle is, nor will it change her medical problems. It is just a way for us to "find out what happened" to make Jenelle the medically complex child she is today. It is also a way of answering whether or not we might encounter similar problems should we decide to have more children or if Jack has a genetic flaw that he could pass onto his children. In a weird way I'm disappointed, because if Jenelle had Rett Syndrome, it would have been caused by a gene mutation (a "fluke" for lack of better words) and not a genetic flaw in our DNA. So for now, that question about our genetics remains unanswered. Isn't science fascinating?

So, now that the update part of this is over, I want to share with you the special story about "Jenelle's Avocado." Remember the Epilepsy Freedom Walk from 2 years ago? Well its back! Please mark your calendar for June 3 for this year's Epilepsy Freedom Walk in Irvine, California to support the Epilepsy Alliance of Orange County. Both Brett and I are on the planning committee for this year's walk, so expect to hear lots about this in the coming weeks. Brett is in charge of getting corporate sponsors (so if you or your business are interested, please let him know) and I am in charge of marketing. Should be a lot of work, but well worth the effort for this wonderful organization that has been so supportive to our family.

And now, more about Jenelle's Avocado:

Remember me telling you about the little boy in Virginia who held a lemonade stand to raise money for "Team Jenelle" during the last Freedom Walk? Well he has already started to raise money for the next Walk! Here is the message I got from his Mom last night:

Jenelle's avacado has already raised $65 for the Freedom Walk. I let him know the date, and he said he wants to raise $100 at least.

He is planning a lemonade day and has been putting money aside from his allowance and extra money he has earned (walking dogs, watering plants, etc.)

I think that he will always be Jenelle's avacado. Your little beauty has brought out an extremely protective and determined side of him. If 10 year old positive energy and sheer determination could help Jenelle, she would have no medical problems.

Thank you for sharing her with us. You cannot know how she has touched our hearts.

I know many of you feel the same about Jenelle, and it makes me proud to be her Mommy to know that she has made such an impression in so many lives. I know that she has certainly changed my life. Oh, and you're probably wondering how "avocados" fit into this story. The little boy frequently prays for Jenelle and has told his Mommy on numerous occasions that he wants to grow up and be her "avacado" - meaning he wants to be her advocate!

I think we might change our team name this year to "Jenelle's Avocados" instead of "Team Jenelle"… has a nice ring to it don't you think? Thanks for the continued prayers - I'll keep you posted!