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!
Tuesday, February 15, 2011
Monday, February 7, 2011
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!
Saturday, February 5, 2011
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.
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.
Monday, February 22, 2010
Brady is the bomb!!
Gosh, let's just be honest and admit that I'm a sucky blogger. I go months in between posts. It's so sad because so many nights I sit down and want to share so much with whomever it is that reads this. Instead I read articles and read other people's blogs. Most of which seem glossed over with the good stuff omitting the real stuff. Meh, whatever.
So let's talk Brady right now. Brady is doing so darned good. A session or two ago his OT comes out after his session and says to me, "What are you doing differently? Diet? Supplements? Because WOW!" I can't tell you how big I smiled. And ya know what? We aren't doing anything differently right now. That kinda kicks ya in the teeth considering all the money we've spent before and all the things we've tried. The truth is he's doing really really good and it's not really anything *we're* doing. It's all Brady!
He is looking at us so much now. He's got joint attention. He's listening. He's compliant. He's smiley. He's rockin it in school. He has a HUGE list of words he can spell and identify. He's knows the continents and oceans. He's totally not your average kid with autism. Considering the fact he's nonverbal he's awefully mellow. His stims aren't over the top. He's really just an amazing little boy. Diet, eating, and diarrhea are really his big problems right now.
I do feel that some things we've done in the past have gotten Brady to this point though.....
1. Diet was the very first thing we ever tried. We started Brady on a gluten-free, casein-free diet on March 21, 2006. About 10 days into the diet he came to me and pulled my hand to get me to follow him. This was a big deal! He'd never tried to get us to follow him before. Whenever he had an infraction it was obvious in his stools and skin. I have no doubt Brady had a leaky gut. I believe it was the reason he has so many food allergies today.
2. While we never had any big wow moments, I do feel HBOT has been good for Brady. His receptive language greatly increased after we did our first 40 dives in a hard chamber. We've since done 44 dives in a soft chamber. I'd do more if I had the money.
3. Vision therapy has been one of the most amazing therapies we've done. Brady was struggling in school until we started VT. After VT he started flying!! Money well spent by far. He is absolutely awesome about leaving his glasses on. We had a spell of a few weeks he kept taking them off and would not leave them on. I took him in and it turns out his prescription changed. Once he got new lenses he left them on. Smart boy.
Brady is not on many supplements right now. He's taking VitC, Omega 369, Zinc, probiotic, and melatonin. He's got a new diagnosis of Eosinophilic Esophagitis but that's worthy of it's own post. -sigh- He did not need something new.
So let's talk Brady right now. Brady is doing so darned good. A session or two ago his OT comes out after his session and says to me, "What are you doing differently? Diet? Supplements? Because WOW!" I can't tell you how big I smiled. And ya know what? We aren't doing anything differently right now. That kinda kicks ya in the teeth considering all the money we've spent before and all the things we've tried. The truth is he's doing really really good and it's not really anything *we're* doing. It's all Brady!
He is looking at us so much now. He's got joint attention. He's listening. He's compliant. He's smiley. He's rockin it in school. He has a HUGE list of words he can spell and identify. He's knows the continents and oceans. He's totally not your average kid with autism. Considering the fact he's nonverbal he's awefully mellow. His stims aren't over the top. He's really just an amazing little boy. Diet, eating, and diarrhea are really his big problems right now.
I do feel that some things we've done in the past have gotten Brady to this point though.....
1. Diet was the very first thing we ever tried. We started Brady on a gluten-free, casein-free diet on March 21, 2006. About 10 days into the diet he came to me and pulled my hand to get me to follow him. This was a big deal! He'd never tried to get us to follow him before. Whenever he had an infraction it was obvious in his stools and skin. I have no doubt Brady had a leaky gut. I believe it was the reason he has so many food allergies today.
2. While we never had any big wow moments, I do feel HBOT has been good for Brady. His receptive language greatly increased after we did our first 40 dives in a hard chamber. We've since done 44 dives in a soft chamber. I'd do more if I had the money.
3. Vision therapy has been one of the most amazing therapies we've done. Brady was struggling in school until we started VT. After VT he started flying!! Money well spent by far. He is absolutely awesome about leaving his glasses on. We had a spell of a few weeks he kept taking them off and would not leave them on. I took him in and it turns out his prescription changed. Once he got new lenses he left them on. Smart boy.
Brady is not on many supplements right now. He's taking VitC, Omega 369, Zinc, probiotic, and melatonin. He's got a new diagnosis of Eosinophilic Esophagitis but that's worthy of it's own post. -sigh- He did not need something new.
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