Hello everyone and thank you all so much for showing interest in Cameron's progress and continuing issues. I truly believe that this last IVIG treatment provided Cameron with some improvements in her speech and use of her left hand which has been wonderful. She does however still continue to have about five seizures a day and they are very unpredictable and vary in type. This has made it hard for Cameron to remain at school for any lengthy period of time but we are working through it daily. Her school, teachers and resourse teachers are fantastic and they want the best for her. She was assigned a personal aide and they are now wanting to upgrade that person to an actual nurse that can determine when Cameron needs immediate medications and when an ambulance would need to be called. When she has a seizure at school there is certain rules they must follow, but with her seizures changing so frequently it is hard for them and for us for that matter to make a decision about when to use the diastat.
Diastat is a rectal sedative that must be given when a seizure does not stop which happens about three times a week. Even after the medication is given the seizure will usually last for another 15 minutes which can be very upsetting in a classroom setting.
We have added a new medication Kepra recently and we are hoping that it will provide some relief for her. She is also scheduled to due her next IVIG on the 16th on November. My mom will come again to help which worked out perfectly last time. Cameron has stared private Speech, OT and PT which is also wonderful. I truly believe that this new place is where we are supposed to be and I have a lot of confidence in all of her thearpist.
Please continue to share this blog with anyone who may ask about Cameron. It has really made life easier for me but I still would be glad to talk anytime and appreciate the genuine concern form everyone. We also thank all of you who continue to pray for Cameron. I know that God is with her and will protect her from harm. I also know that God can provide a miracle for Cameron and we are still hopeful. In the meantime we are doing all we can to help her to have a normal and happy life.
You may see Cameron around sporting her new pink helmet. It has been wonderful and allows us to relax a little more on a daily basis. Casey's Aunt Gay form Denver was here recently and painted beautiful flowers and butterflies on it-which Cameron loves. Thanks Gay. Take care all. Shelly
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2 comments:
Thanks for the update, Shelly. Hope things start settling down with her seizures so she can stay at school for a while. Glad to hear the helmet turned out cute. Can't wait to see it. :)
Shelly, it is great to hear that you are getting so much support from the school personnel. That helps, I'm sure.
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