Dentist appt coming up!!

sigh.....it's gonna suck! The last time we went, as soon as he saw the building he threw up all over himself and the car. I had to change his clothes. I'm prepared for these events. I have paper towels, I have  Wet Wipes, clean clothes, socks, etc. I have a bag to put all the soiled clothes in. I have a special spray to help remove the smell from the van. It can't remove the trauma we've both faced but a Xanax can do that.

Anyhow, I'm hopeful he'll do well. He's been twice before and the dentist is awesome. I love her! He's lost 3 teeth now. And I do mean lost. We've never found them. I bet you he swallowed them. Seriously. My life is truly needs to be made into a book. You'd laugh so hard. The new ones coming in are of monstrous proportions. They are teeth meant for a 20 year old man's body. Not a 6 year old that only weights 44pds if even that. They are huge!!!

One way or another I'll convince my son with autism to wear braces. I don't care how many social stories I have to write, don't care how many bribes I make, or souls I sell. It's gonna happen!!!

To take him to the circus or not

I want to let Brady do all the things most kids do, to get the chance to have special memories like they do. The problem is if he's not interested it could be a disaster. Would he like a circus? Do I buy tickets and chance it? What if I get there and he freaks out and wants to leave? But what if he gets there and loves it? The stress created between my husband and I when Brady is not happy in public is pretty intense. Now when Brady is anxious about being somewhere he takes off running and boy is that kid fast. Can you imagine him taking off down a street in DC with me screaming chasing after him? -sigh- I can't tell you how many times we've gone somewhere only to have one of his sit with him in the car while the other one is off with the other kids. I feel like we're always dividing. It's not Brady's fault. His feelings of stress and anxiety are legitimate.

I think what I'll do is make a social story for it. There is a great app called Stories2Learn that we have on his Ipad. When he got new shoes (which he hates doing) he didn't want to wear them. I made a social story and after he read it he readily wore his new shoes. Maybe...just maybe if I do that for the Circus.....

Worms for thought

I'll be going into greater detail soon about our plans to help Brady. Till then here's an article that will provide a clue and information. I'm always moved at the lengths parents will go to help their children!

http://www.the-scientist.com/article/display/57941/

His Ipad is nothing short of amazing for him!

I don't have much time today since I have a million things to do this week and they're all on the top of the priority list but I wanted to share the following. Enjoy!

He hasn't eaten in days.

It's been nearly a year since I last blogged. Brady is struggling and doing well at once. Academically he's awesome. He's learning quickly and enjoys learning most things. Medically the kid is a mess! It's been a year now that he's been diagnosed with eosinophilic esophagitis. It's kicking his butt. The last couple of weeks were really hard for him. He trialed potatoes and he clearly failed. It took several days but it was quite obvious. He was crying in pain. He was irritable and started eating less and less. He hasn't eaten any food orally for at least 3 days now and the four days before that wasn't anything to talk about. He's got full on diarrhea again and eczema. He seems to be feeling better now that he stopped eating. He's getting 1370 calories a day through his feeding tube and some additional calories from his apple juice.

Oh my...I never blogged about him getting his gastrostomy tube! April of last year he had a peg tube placed and three months later had that replaced with a mic-key button. We're so incredibly thankful for his g-tube. We're able to maintain his weight. He's a little guy holding his weight steady at 44pds and 45in tall and turning 7 in May. I mix up all his vitamins and supplements at night and syringe them right into his button. It's been so great. Sometimes a giant pain in the butt as well but overall a blessing.

He's not getting better. His immune system is stupid. It's responding to food as poison. While his EE team is knowledgable, mainstream medicine is just not getting him well. If we continue doing what we're doing now he'll continue to not eat. He'll be scrawny and sickly looking. He'll never have a birthday cake or eat at a restaurant. Can you imagine food hurting you so bad that you'd choose to not eat at all? That's Brady's reality. I'm about to embark on a journey that will hopefully turn that around.