Armand’s had such a decline and such a tough time over the past 6 months that we’re going ahead with plans to put him on a feeding tube. The medicines he is on, and the episodes he’s been having since March have taken their toll on him. He’s just not strong enough to sit in his high chair and eat “people food”. For the time being, he gets (soy) yogurt, he gets applesauce, he gets fruit, and if we can get him a few bites here and there, he gets some protein. We’ve also actually started going back to “old school” baby food, so that it’s properly ground up into small enough bites for him to swallow, and he’ll get some added fats and proteins. He might drink one or two drinks a day, of about 5-6 oz. each. He’s just not strong enough to chew or enjoy his food like he used to.
Compare that with this paragraph just after he started on the zavesca just about a year ago:
“.We’ve had zero emesis since then, and the child now eats like a MAN. Sometimes four meals in a day, or double helping at breakfast. Multiple eggs, sausage patties, burgers (2 at a time!!), steaks, blueberries, strawberries, asparagus, celery, now even some shrimp! And I found some lactose-free low-sugar ice cream bars he can have after dinner. The boy throws down on some food, is unrelenting, and has a fit when he’s hungry. I love it — except for the fact now that our lazy mornings have turned into him kicking me until I’m up and awake and making breakfast NOW DAD NOW I’M HUNGRY PLEASE FILL MY TINY BOTTOMLESS BELLY OR I WILL WAKE THE NEIGHBORS!!! It’s like I’m living with the dog from the Beggin’ Strips commercial…” (from this entry)
At this point, three full meals would be a dream.
So, after some deliberation and speaking with doctors, we’ve decided to go ahead with a feeding tube. We don’t see this (or I should say, I don’t see this) as directly giving in to the disease — I try to see this as being proactive, so that he can get the nutrition he needs, and the medicine he needs to fight this and bounce back strong as ever. It’s taken us almost a year to get barely to 2/3 of the dose he needs to be one. We don’t have the luxury of time anymore.
We’re in the process of scheduling it, so hopefully we’ll have it done next week, and he’ll be back to my big strong Bear in no time.
We’re also in the process of beginning to get set up for another Day For Armand restaurant fundraiser, should have a post of that up soon with locations that will be participating this year. Last year we raised almost $800 for Armand, this year we hope to increase that expontentially.