Thank you for all the encouragement, prayers and advice. We really do appreciate all of it! It's been about six weeks since the diagnosis and we've found our footing again. Please keep the prayers coming, though. We all need as much help from the Big Guy as we can get.
Although it was tough to hear, the diagnosis has already had a positive impact on our lives. We have begun some behavioral therapy and have seen some positive results. Kate is attempting two and three word sentences with a LOT of prompting, but is more verbal overall. She is feeding herself, following more complex directions, and we are able to have a conversation of sorts. We are also waiting on an appointment with one of the country's leading autism researcher / DAN! (Defeat Autism Now!) physician, who just happens to be located about 15 miles away! I am playing phone tag with his intake nurse right now, but we are in line for an appointment within the next six weeks.
Kate and I are at Arnold Palmer Hospital right now for her 48-hour video and audio EEG. The EEG is to determine if she is actually having seizures or just some "extra" electrical activity. She has been a real trooper today -- especially through the gluing of the electrodes which was done in part with a little machine that blows air on her head and vibrates against her scalp. She was upset, but not as bad as I would have predicted.
Unfortunately, part of this was because she spiked a 103 fever after we got here, which made her a bit more complacent. About five hours later, though, the fever was gone. :) Truthfully, I'm grateful she's a little under the weather or else this being tethered to an 8-foot "leash" might be more difficult than it already is.
For your viewing pleasure, some pics of Kate with headgear. Even with headgear she's cute:
This is a pic of the monitor. The techs tell me the "ALARM" "ALARM" "ALARM" button that keeps flashing is not a problem. Good to know. And the cutie in the corner? That's Kate, my girl of the gauze....
I'll update you when we know any results.
Until later -- and with much love from our home to yours,
The Lucky Ones
6 comments:
Poor little Kate! Please give her a big hug and tell her it is from her Uncle Russ.
Love you all!
Cindy
Wow, you guys are taking huge strides in finding the options that are available to help Kate be the Best Kate :) You're such a good mama, Melissa!! Thanks so much for keeping us updated, we'll keep you guys in our prayers!
P.S. She IS darling, even in all that gauze ;)
Melissa - lately I have been thinking of you guys all the time. Glad to hear that you are getting some comfort - there are no guarantees things will be easy, but comfort will come - KKKKatie (Melissa's favorite song)is such a cutie even in the gauze and what a trooper! She must just be getting used to all this medical stuff. Here's hoping the results are clear and the way is made clear as well. Always, Stacy
What a trooper! And an adorable one at that...with & without the gauze! So happy to hear that Kate has made some major strides...that's wonderful!! My prayers continue to be with all of you...
HUGS!!
Patricia
What fashionable headgear! You should add some Easter bunny ears! Please hug and kiss Kate for us, and for my mom, who's peering over my shoulder at your blog. She says Kate got the family she was meant to have, and that Kate's such a loveable little girl. Y'all are wonderful! Love, Caroline and Joan (my mom--who says CONGRATS on Addison!!). He can come play with David anyday at Mom's house. :)
Sorry to read y'all are tethered at the moment. Glad to hear you'll be getting more answers here shortly, though. Kate could not be any cuter! How awesome to hear such remarkable results with language issues in such a short time! Thank you for the update. I'm looking forward to hearing how the appointment with the local autism specialist goes.
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