Jalen's scope results are not good, but the doctors want him to start food trials anyway. Dr. Banks is considering fruit, rice, chicken, corn and potato. The fruit I am down with, and possible chicken and rice. Corn and potato have always been touchy for Jalen, and I will probably hold off on those until I try some other things first.
Jalen chose watermelon as his fruit of choice to begin with. Unfortunately, he overdid it yesterday and today, and just had a serious case of the runs! Well, at least the constipation is gone. We have not noticed any other symptoms with the watermelon. Next to add will be grapes.
Here is a brief rundown of the path report. Of 8 areas that biopsies were taken from, 3 areas showed modest improvements, three showed drastic increases in the numbers of eos per field, and two stayed about the same. Here are the numbers, from the top of the digestive tract to the bottom:
mid esophagus=130
distal esophagus=140 (up from 80)
stomach=0 (down from 15)
duodenum=44 (up from 0)
terminal ileum=100 (up from 20)
right colon=64
transverse colon=52 (up from 20)
left colon=45 (down from 80)
I have read that the cut-off count for eos in the digestive tract is 20; counts higher than that lead to a diagnosis of EGID. All of Jalen's numbers (with the exception of stomach) are well above 20.
Wednesday, December 9, 2009
Sunday, November 8, 2009
Getting Ready
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.
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.
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!!!
Tuesday, October 20, 2009
Woefully Behind
Ay yi yi! I have not blogged in so long. Here is everything from 2 weeks in a nutshell:
- Jalen went to a dermatologist who put him on 5 different eczema perscriptions (ointment for arms, ointment for butt crack, meds by mouth for itching, cream for face, and a heavy-duty moisturizing cream). She did not listen or let me talk, so we will NOT be seing her again.
- Jalen continues to sneak food, probably daily at this point.
- Jalen pooped on himself a few days ago. I think he was waiting for Jonathan to get out of the bathroom so he could go. One small poop ball came out into his underwear.
- Asthma breakthroughs=one neb this morning, last night and yesterday mroning too. Don't knor what the cause is yet.
Saturday, October 10, 2009
Thursday, October 8, 2009
Recommitment
Today Jalen told me that he has made a committment to not eat food anymore until after his tests. I am so proud of him that he is making such a big and mature step. I told Jalen that he is a very strong boy, and that he has always been strong.
I remember the first time I laid eyes on Jalen. I'd had them squeezed tightly shut throughout the excruciating lower back pain of delivery and for several minutes afterwards. When I finally opened my eyes and searched across the room for my new baby, I saw a big arm and a meaty fist shooting up out of the tiny incubator. My first thought was, "Good grief, he is huge!"
As Jalen grew, I began to call him Bamm-Bamm. He earned his moniker daily too! Jalen would crawl (or later, toddle) up to something, reach out his big, strong fist and "Bamm!" It would never be the same again. It wasn't so funny at the time, but today I can reminisce and chuckle about all the objects Jalen has inadvertently destroyed in his lifetime.
When he was tiny, I also used to call him "Jaylee-Boo, Super Jaylee" after the VeggieTales cartoon star, "Larry Boy, Super Hero." I used to sing along with the opening credits music, substituting Jalen's nickname for Larry's. Little did I know back then that Jalen would truly become my hero!
My prayer is that this health ordeal that Jalen is going through will produce in him a powerful strength of heart, spirit and character that by far surpass the physical strength that he was born with. And that there will be much less brokenness in the process.
I remember the first time I laid eyes on Jalen. I'd had them squeezed tightly shut throughout the excruciating lower back pain of delivery and for several minutes afterwards. When I finally opened my eyes and searched across the room for my new baby, I saw a big arm and a meaty fist shooting up out of the tiny incubator. My first thought was, "Good grief, he is huge!"
As Jalen grew, I began to call him Bamm-Bamm. He earned his moniker daily too! Jalen would crawl (or later, toddle) up to something, reach out his big, strong fist and "Bamm!" It would never be the same again. It wasn't so funny at the time, but today I can reminisce and chuckle about all the objects Jalen has inadvertently destroyed in his lifetime.
When he was tiny, I also used to call him "Jaylee-Boo, Super Jaylee" after the VeggieTales cartoon star, "Larry Boy, Super Hero." I used to sing along with the opening credits music, substituting Jalen's nickname for Larry's. Little did I know back then that Jalen would truly become my hero!
My prayer is that this health ordeal that Jalen is going through will produce in him a powerful strength of heart, spirit and character that by far surpass the physical strength that he was born with. And that there will be much less brokenness in the process.
Tuesday, October 6, 2009
Sickness
I did tell Jalen yesterday that he got sick because his body is fighting so hard against the food he has been ingesting that it couldn't fight off the virus that came in. I hope he takes heed and changes his ways today.
Unfortunately, now I feel sick! Swollen glands, fatigue, and intermittent shut-down of sinuses (it feels like they just slam shut for a few minutes and I get dizzy until I can blow my nose and relieve the pressure). I've been sleeping a lot and drinking grape juice w/vitamin C to stave it off all week. I think I'll be okay, but time will tell.
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