Hello My Friends

Hello, I know it's been a while since my last post, and for that I apologize. But I wanted to wait until I had some really good news to share with you. Our holidays were great! Santa was good to the boys and why not they have been so good.
As some of you know Alec had some adrenalin issues and his endocrinologist wanted to keep him on cortisol for a couple of months, and he was also placed on the hydrocortisole for swelling in the brain and some "radiation effects" well; I took him off it ALL! It was not helping him, so ultimately it must be hurting him.
He has been on his organic diet, gluten, wheat, dairy,and sugar free with wholistic supplements prescribed to him from his wholistic Dr. we started seeing in Plainview. And what a difference! His adrenalin gland is now producing cortisol all on it's own, thats right, no drugs! Imagine all those unnecessary steroids he was on that was just tearing him apart, ripping down muscle walls, it's disgusting. I just kept researching and researching and today he is upbeat, smiling again, laughing, real belly laughs. All this with just a 1000 anc, which is really low, and 40 on platelets, we get transfused at 20, most likely next week at clinic we'll need platelets.
He has finished his 1st round of chemo, Tomador and celebrex, which went extremely well! No vomiting :0) We start retnoiac acid and cyclophosimide tomorrow, he takes it 2x a day for 21 days and then starts a new cycle.
Alec is still unable to walk by himself, his balance is a big issue. It's hard because he wants to go and can't. He is so strong willed it isn't even funny, I am always finding him scooting across the kitchen on his rear end or off the couch getting something form the coffee table or crawling toward something, which is a big deal that he wants too. It took a long time to get here. His memory appears to be back, he doesn't seem to be so confused. His speech is still slow and it does take him longer to process things, but so much better.
Alec's walker has arrived, they are coming to the house actually tomorrow to exchange it for one that rolls, it's to heavy for him to pick it up and walk with it, he tried. He is very excited about it, it will be a hand toward his independence.
His hearing aids are ordered, A BIG THANK YOU JOEY'S FRIENDS, he was excited he got to pick out any color he wanted, he chose red of course, Darth Vader's lightsaber :0) He has to have special hearing aids to attach the fm system to it for school. The teacher will be wearing a small microphone that will be connected to his hearing aids so when the class is noisy he can still understand instruction clearly.
He still cannot goto school of course, possibly spring, he gets his home tutoring 5 days a week for an hr. He gets occupational therapy 2x a week, physical therapy 3x a week and will be starting speech 2-3x a week. Then to squeeze in Dr's in all those, whew!!
Regarding his eating, Alec is still a very slow chewer. He is weighing in at 37 lbs, down from 39. But I know he is getting everything he needs. He is on a special protein shake 2x a day and green supplements and berry supplements. Dr. Stills, his wholistic Dr., is monitoring him very closely and working with his chemo protocol. His next MRI is scheduled for Feb. 28 and 29th.
Alec is getting excited for his Make a Wish Disney trip in a couple of weeks, he is going to train to be a Jedi, what a surprise and he wants to shoot Zurg. Kevin is really excited too, maybe more that he will be missing school. I got information already for the children's hospital in Orlando, "just in case" and it's great because where we will be staying there is a medical staff on hand 24/7.
Well I think I have it all covered for now. I'll let you know how his next round of chemo goes. I'm a little nervous we got really spoiled this round.
xoxo
-Amy