October 18th 2008
Cristian is off the sedation in order for him to be able to wake up and the doctors can then try to take out the breathing tube so Cristian can start to breathe on his own. The waiting room was packed with Family, Friends and Loved Ones.
October 17th 2008
Cristian had surgery today. The doctors had trouble with the procedure, the Third Ventriculostomy and had no other choice but to just fix the Shunt. Cristian’s first two surgeries only took approximately one hour.
October 16th 2008
Today Dr Khakoo called me and said that Cristian’s Port doesn’t seem to be working properly. This is the 2nd time that the port wasn’t working properly and the 3rd time Cristian is getting the same surgery.
October 15th 2008
Cristian couldn’t go to his Chiropractor or his Reike appointment today. His mother said he had a headache. I called Cherly at Memorial Sloane Kettering and Cherly said she spoke to Jenelle and that Cristian’s headache went away.
October 11th 2008
Cristian and I had a great day. Cristian’s spirits are good but he isn’t very active. Cristian isn’t walking and isn’t really using his right arm. I am very concerned about this because the operations were supposed to drain the liquids which in turn would stop the pressure and hopefully help Cristian regain usage of his legs and right arm.
October 10th 2008
I took Cristian to his chiropractor appointment. Cristian really likes Dr Bob a lot. Doctor Bob feels that within 3 weeks we should start seeing some improvement. Afterwards I took Cristian to his Reiki session.
October 9th 2008
Jenelle met with Dr.Khakoo about the options and Jenelle chose to go with Etoposide and Depacode. The doctors called me to get my consent and i went along with Jenelle’s wishes. I wanted to keep Cristian just on Protocel along with the Chiropractor, Reiki and Ray for one month, without a trial drug.
October 8th 2008
Dr.Khakoo called us and told us that the Panitumumab trial will no longer be open due to a child having a seizure. The other two options Etoposide,Valproic Acid and Derivatives are available.
October 7th 2008
Jenelle took Cristian to Physical Therapy today. Jenelle said Cristian walked two times with the Physical Therapist. Today we were supposed to hear whether or not the Panitumumab trial drug would be open for Cristian but we didnt hear anything.
October 6th 2008
Today I took Cristian to both his Chiropractor and Reiki appointment . Both went well. Cristian was in good spirits.