Wednesday, November 29, 2006

Appointment at Baptist

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

Thursday, November 23, 2006

Visit to Baton Rouge

Hello, We had a visit to Casey's sister and brother-in-law last week and it was wonderful. Casey got to go to an LSU game and Cameron and Caroline got to spend some QT with their four cousins Thomas, Annie, Claire and Daniel. While we were there we went to see a Dr. Stephani Cave. She has put Cameron on a gluten and casien free diet. This is wheat and dairy product free. The diet has it's challenges but we are more then willing to try this. Many children bodies do not breakdown these proteins which get into the bloodstream that eventually end up in the brain as a form of morphine. These morphines interfere with the transmittion of nerve impulses which effect behavior and development. She also has Cameron on alot of supplements to help cleanse her system. Like I said we are willing to try anything but what she talks about makes a lot of sense. She has written a book that links vaccinations to auto-immune disorders as well as autism that I am currently reading and find very fasinating.

As Casey said we got the approval for Cap-C yesterday. This was great news as we were not expecting to hear anything until after Christmas. Cameron will have a CNA everyday from 2:30 to 5:30 to help with her care. This covers just about everything and will be very helpful to me. We have to now choose an agency and interview CNA's to find a good fit. Addtionally, this will allow Cameron to get much needed speech thearpy four days a week. It would also cover cost for equipment that Cameron may need which will also be helpful. We are excited and truly appreciate all of the prays for this matter. Much love and Happy Turkey Day--Shelly

Great news!!

Yesterday Cameron was officially approved for Cap-C services!!! This is a Medicaid sponsored program that will primarily provide us with Respite Care (official definition--A service that gives someone temporary time away from the continual care of the person they are responsible for. It could be in the form of an adult day care center, occasional in-home nursing care, "trade-off" afternoons with another caregiver or service from a community volunteer)--a much needed break for Shelly. I think the hours are 2-5 daily for them to come to our home during the week but Shelly will post soon with all the details on this and the other things going on now. I am so fortunate to have these blessings of a thoughtful wife & mother and 2 beautiful & super sweet daughters. Thank you God!! Happy Thanksgiving to you all!!!!

take care, Casey

Friday, November 17, 2006

Update on School

Hello everyone. I know it has been a while so I will be updating on several topics over the next few days. Cameron has moved to Pilot Elementary to the Lifeskills class. They have a full time nurse in this class and Cameron is able to keep her personal care assistant. I was honestly very heartbroken about the move for several reasons but as Casey and I see it this is a trial. If it is not a good fit as much as we would hate to do it we would move her back to Jamestown. Cameron and I went to visit the classroom last week and I had a complete breakdown. I don't do this often but Cameron had a bad seizure in the car and then I had to go into the classroom and tell her story all over again. This is the third time as we had originally started out at Florence Elementary. The teacher, assistant and nurse that we met with were very compassionate and we felt good about giving this a try. This classroom is not as acedemic but the teacher grew up with a twin sister that had seizures as well and feels comfortable with the situation.

I did find out on Cameron's first day that they do not have a speech teacher at this time and we are trying to work through this with the school system. This is Cameron' s greatest need at this time to we will pursue the issue until we have resolution. Cameron is also riding the bus which is a great source of joy for her. She is so proud when she gets home and it makes my life so much easier as I do not have to wake up sweet Caroline everyday to pick up Cam's. Next week Cameron will start to ride the bus to school as well. I am a little nervous about this as she will be at school during a the time of day when her seizures can be more active. Please pray for her saftey next week and pray that her caregivers are prepared to handle her needs. Love you all Shelly.