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