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Freedom Walk Total & Update on Jenelle

Posted Aug 26 2008 4:19pm
I’m so sorry not to update sooner about the Freedom Walk. Many of you have been asking about the final total and I've just been too busy to update. First of all, thank you to all of you who sent in donations - without you the Freedom Walk would not have been such a success.

Now, the great news - with donations still coming in, the 2007 Freedom Walk has raised over $101,000! The Epilepsy Alliance of Orange County has over 25 programs running for individuals and families dealing with Epilepsy. The funds raised at the Freedom Walk go directly into those services, so that they can continue to be offered "for free" to our individuals and families. These services include support group meetings, education seminars, advocate representation at IEPs, music therapy for the kids and counseling for parents. As for Team Jenelle - we raised $4,850! Combined with donations from my firm and from my firm's team, we raised almost $9,000! Thank you again for your support!



Jenelle had a small cold earlier this week and has now passed it onto me and Jack. Other than that, she is doing wonderful. I haven't mentioned this yet (because our daycare provider gets these updates) but in April, Jenelle's daycare informed me that it was time to find new daycare for Jenelle. It is a bitter sweet milestone we knew would come eventually. Jenelle is getting to big and heavy to lift, and with the other children in the daycare ranging in age from a few months told to ages 2 and 3, Jenelle is getting too big for the other kids. We love our daycare provider, and we know she loves Jenelle dearly, but we understand the situation. We are hoping to find a new place by the end of June, and will need care full time for the month of August when school is not in session for Jenelle. I am mentioning this now as the process of finding daycare for Jenelle is taking longer than I anticipated.



We have been using daycare as a place where Jenelle can be picked up and dropped by her school bus, and for care during school holidays and half days. Rather than find a nurse or nanny to watch Jenelle at home, I would prefer to find a setting such as a before and after school care program so she can be with other children her age. Currently I am working with Regional Center and our school district and there are some possibilities. While seizures have become less a problem for Jenelle, her g-tube feedings remain a medical issue that some facilities are not willing to take on. We are currently looking into the YMCA and Child Development Center programs in our District and waiting for in home nursing to help out as well. If you have any ideas or know of a facility that might be interested, we'd be happy to hear about it!



And it seems Jenelle's 15 minutes of fame are up. We received some great response from our community about the article published both in the Tustin News and Orange County Register about Jenelle. The small website where I keep these updates usually has 30 hits or so a week - on the day of publication, we had 750 hits, and 2,500 the rest of that week! The following week, we had over 1,500 hits totaling over 4,000 in the two week time frame! We've been able to help out some local families to get them in touch with the Epilepsy Alliance, and I know the article generated donations as well. What can I say… Jenelle is just so cute, who wouldn't love her?



So that is all for now. I found out last week from UCLA that we should have results from the Rhett Test at the end of this month. Thank you again for your support, your prayers and as always for keeping us in your positive thoughts! I'll keep you posted!
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