Cameron had an appointment today with Dr. Santos and our wonderful nurse Valerie. She had an adjustment to her Vagus Nerve Stimulator to a "rapid cycle". Previously it would go off for 30 seconds with a 5 minute break. Now it goes off for 7 seconds with a 18 second break. Very different but often this rapid cycle works well in children. We are starting yet another new medication Depacokte soon and I am not as hopeful about this as I am the change to her VNS. This really seems to be the only thing that has made an impact on her seizures.
Cameron is doing well at school and is riding the bus which is working out well for me. It was hard to wake up Caroline everyday to pick Cameron up so I don't feel quite as stressed. We have decided that Cameron will stay at her new school for now mainly b/c of her new teacher and her fantastic PCA (personal care assistant) Renee. Hi, Renee.
Cameron did have a seizure yesterday at school and hit her face and cut her eye. She did not need stiches and now just looks a little strange b/c of a slight black eye and swelling. She is such a trooper and Casey has started to call her brewser. This is the second injury near the eye in the last two weeks so we are going to have to get a hard helmet with a face guard. If I ever thought her current helmet was unattractive I thought wrong. Otherwise all is well and we are continuing to find some good food options for Cameron on her diet. I am getting better at understanding lables and what to look for which makes a difference. Now if I could only find some bread that was not the consistency of bricks she would be good to go. Take care. Shelly
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3 comments:
Hope the adjustments to the VNS help.
Glad to hear she's riding the bus--what a relief for you.
Good luck with the continued food searches. It can be hard enough when you're not on a restricted diet!
Hey Shell and Casey,
I wanted to tell you both how much I appreciate the updates! I check Cam’s blog daily and I know this is a much easier way to keep everyone informed.
Shelly, my little sister, you are an amazing woman! Your strength, courage, and faith throughout this has been extraordinary. I admire your ability to handle everything you do and still keep that beautiful smile on you face!
This has been one heck of a year for our families - I am looking forward to 2007 and optimistically anticipate it will be filled with wonderful blessings! Give sweet Cameron and silly Caroline a big hug and a kiss from me! I love all of ya’ll soooo much!
Love and Prayers,
Stacy
Shelly,
What bread ingredient are you trying to avoid? Wheat? Gluten? I might have some ideas.
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