Our three long, grueling months of Elecare only is almost up! Jalen will begin his Miralax regimen this afternoon in preparation for his colonoscopy on Tuesday. Fortunately, we can skip the laxative this time, since he has not been eating very many solids. I think he is ready. Yesterday he exclaimed happily, "Two more days!"
Jalen has not needed a nebulizer for two weeks. We hope his breathing stays good so that he can go through with the procedure, and we won't have to reschedule. Our hospital trips are always pleasant. Jalen looks forward to playing video games in the surgery waiting room and watching cartoons on his personal tv. I am looking forward to getting hot chocolate, soup and a sandwich at the hospital cafe during the procedure, plus a bag full of Snickerdoodles from the cookie kiosk. We have been to the hospital so many times that we know all the places to go. I remember loving the cafeteria food at Childrens Hospital when Jalen was being treated there. Brendan, Jalen and I always looked forward to going there before leaving for home.
I will try to remember to weigh Jalen one last time and post an update here before Tuesday.
Sunday, November 8, 2009
Monday, November 2, 2009
Random thoughts
It has been two weeks since my last blog. Why? Because I've pretty much given up on this elemental diet. Jalen refuses to comply now with the Elecare-only. He is sneaking food, candy and medicine (yes... medicine...again...15 Chloraseptic lozenges). He is blatantly lying about his sneaking, and everything else, because he doesn't believe that he is that sick. He said, "So what if I eat food? I just cough a little, and maybe get some eczema. That's not so bad." He doesn't believe the results of his scopes. Yet he weeps and proclaims that no one understands and no one is helping him. I have done everything I can to help him, short of quitting my job and homeschooling him through this treatment. So what is left to do?
Jalen's endo-and colonoscopy are scheduled for next Tuesday. Depending on the outcome of the scopes, we may start food trials after that. But Chris and I both agree that there is no point of trialing foods if he is going to sneak other foods at the same time, as we will have no way of knowing what foods he reacts to. It should be a scientific, information-gathering process. So if we are unsuccessful at food trials, then what? Go back to eating whatever he wants while he coughs, barfs, has belly pain and slowly destroys his GI tract? Receiving the Elecare was an answer to prayers, but it seems that Jalen has thrown God's gift back in His face.
For 11 years, we have been praying for healing, for Jalen to be well, for Jalen to be able to eat without being sick. But maybe we have been praying for the wrong thing. Maybe I should pray for Jalen to get worse (God help me, that sounds so horrible!!!!) before he gets better so that he can truly know how sick he really is. He doesn't remember the time when he was a baby, toddler, preschooler (before the steroids) when he had so many horrible, painful symptoms. The steroids that he was taking for five years masked many of those symptoms, and he hasn't been feeling that sick, so therefore he believes he is okay. He may have to feel the pain of EGID in order for his mind to accept this treatment, which is truly the last hope for Jalen. God help us...we don't know what to do!!!
Jalen's endo-and colonoscopy are scheduled for next Tuesday. Depending on the outcome of the scopes, we may start food trials after that. But Chris and I both agree that there is no point of trialing foods if he is going to sneak other foods at the same time, as we will have no way of knowing what foods he reacts to. It should be a scientific, information-gathering process. So if we are unsuccessful at food trials, then what? Go back to eating whatever he wants while he coughs, barfs, has belly pain and slowly destroys his GI tract? Receiving the Elecare was an answer to prayers, but it seems that Jalen has thrown God's gift back in His face.
For 11 years, we have been praying for healing, for Jalen to be well, for Jalen to be able to eat without being sick. But maybe we have been praying for the wrong thing. Maybe I should pray for Jalen to get worse (God help me, that sounds so horrible!!!!) before he gets better so that he can truly know how sick he really is. He doesn't remember the time when he was a baby, toddler, preschooler (before the steroids) when he had so many horrible, painful symptoms. The steroids that he was taking for five years masked many of those symptoms, and he hasn't been feeling that sick, so therefore he believes he is okay. He may have to feel the pain of EGID in order for his mind to accept this treatment, which is truly the last hope for Jalen. God help us...we don't know what to do!!!
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