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.
4 comments:
I just found your blog in my search for EE which I myself suffer from. I'm almost 30 and was diagnosed a yr ago but I've been dealing with it my whole life. It hurts and really is miserable. Im glad I found your blog. How old is Brady?
Brady will be 7 in May. When you eat a food that you react to where exactly do you feel your pain? Could you articulate how you feel to me? My son is unable to speak and I often wonder just how he feels when he's hurting.
Hi, Angela, we spoke a year or more ago. I am a friend of Tracy and Michelle's and also have a 7 year old son with autism. I found your blog through Tracy's website and just wanted to let you know that I am thinking of your family and glad to keep up with his journey. You are one awesome, devoted momma!!
Angela yes, email me and we can chat. I can for sure explain. I understand the lack of communication with your child. Its SO hard. I can't find where to privately email you....I think you can on either my blog or my name. Let me know, I'd love to help. I've got stomach issues and alot of reflux with mine, also the EGD and dilation stories, its WAY painful and the drs will tell you its not biggie. I don't understand how they put children through it and they can't tell you how bad it hurts. I'd even be willing to talk to you on the phone if thats easier. my blog is matthewrachelstarch.blogspot.com
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