So excited, Laurie my sister has volunteered to be a shaver at a St.Baldricks event taking place on March 20th at Celtic Crossings in Kings Park. So many locals have volunteered their time, heads and yummy pizza for the event =) You can Facebook me if you need more information. (Amy Carlin Mardjani)

Also, don't forget Comedy night for The Guardian Brain Foundation only $20 a ticket on April 18th. I will get some tickets and have them on the day of the St. Baldricks event. They are a big supporter on brain research and neurology. It will be so much fun I can't wait =)

Kevin even volunteered to have his head shaved =O I'm so proud of him. I was telling him about the event and he was all cool about it and said, I'll do it. I was shocked. He said its to raise money so Dr.s can find a cure for Alec and kids like him. Sometimes he just amazes me. I'm going to see if I can send a flyer home from the school.
St. Baldricks funds the most research for childhood cancers more than any other, with the exception of the Government. As you know I am big on research hence the reason I am a supporter of Kidsvcancer. I think it's great that St. Baldricks does this amazing research but brain and spinal tumors is where my heart lies for selfish reasons.
Alec has been really sleepy lately. Mark thinks he is coming down with something. Sleepiness is his pattern, but we will just keep a close eye on him. We have an oncologist appt. tomorrow and an orthopedic appt coming up also. We continue to be concerned with his head drop and rolling to the left. He picks it up when prompted but when not prompted he just lets it drop. Mark wants an extra support added on his wheelchair. which we will discus with the Dr.'s
He is handling his liquids a bit better. We have to have another swallow test preformed which I will discus at his oncologist tomorrow. He is not coughing as much. Still coughing but doing really well. But overall he doesn't take in as much liquids or calories that need to meet his needs. He just doesn't want to eat. His portions are next to nothing and then he wimpers he is full. It's hard to gage if he is just tired or truly full. We still drop an ng tube for hydration and have bumped up his tube feed now with PediaSure. He gets about 2-3 can a day which is about 500-750 calories added. He is just looking to skinny to me. Mark says he's fine but agrees on the supplements.
They of course are enjoying some time off from school. Kevin welcomes it.. LOL It's nice to have them home. I am going to get Kevin back into his DodgeBall playing through the Community Center. Center Moriches is just amazing, I can't imagine ever leaving here. It's just such a close town filled with caring people.
I'm still going through my own issues with my migraines and ear pain. It has gotten really bad and truly unbearable. The queasiness and well, I can't really put in words but just not fun. Mark is so supportive though. Kind of suffocating at times though. He pushes me to go to the Dr. but it's hard to find time for me to be able to do so. I am sure you parents can relate.
Well on that note I gotta run.
Take care.