Archive for February, 2010
My Family from WiddlyTinks.com
We were lucky enough to take some time away from Wisconsin last week to take a road trip to Louisiana to see half of James’ family. His Mom was born there, and lived there into her 20’s before meeting James’ dad who was traveling and wrestling (I think I have the story on the right path) they married and lived and wrestled together for a few years, living in Mississippi (I think) for a while, and then moved back to Canada and had Wendy James’ older sister, and then him.
Anyhow, we’d - as a married couple, only been to Louisiana for funerals, in 02 and 05. We were really overdue for ‘our turn’. Though Mary & John have been up 3 times, 2 since J&E were born! and Melba with them the latest time. Evelyn is named after James’ grandmother- Susie’s mom-Evelyn who had a twin (if James is right).
I’ve been busy uploading photos of our trip to our photo site. I have one or two more days to upload, and a day yet to edit the rest of, I only got half way thru. We had a wonderful time though- it was too short! We got to see some of the country, and even if only for a short period it was warmer!
Lil James is doing OK- you can tell he’s different with the wheat, and I look forward to the 17th. We go the week before for his pre-op physical and hopefully he stays healthy. Tuesday, we take the kids for their Preschool Screening, so watch for that update too!
Watch for an update that goes into a bit more detail about our travels. Right now, I get to go restock our fridge, freezer and cupboards.
February 28th, 2010
James will have his endoscopy in mid March. It’s further away than we would have liked, but the only other date (sooner) they had available we had a conflict with.
We’ve had to take James off barley, as he’s gotten a horrible diaper style rash while eating it.
James ate rye once and broke out. Finding things to make that he’d like to eat with rye proved difficult and quite honestly we don’t need that added stress either of him not eating.
Oat (though is considered in some cases safe for celiac) resulted in bad bad diapers. I’m sure we’ll see the allergist at some point on this.
Reluctantly we’ve put him back on wheat. While he is allergic, life at least is less stressful in that we know what (essentially) to expect from wheat and he’s still getting gluten (and in good quantity). It makes for tricky days diaper wise and days when he’s itchy (we had that with oat and barley too) and changes his mood, but we’ll have to push through it. We wish things were different, but it is out of our hands.
I think we’ll be able to give him a combination of wheat/gluten free foods and then like one thing a day that’s full on wheat/gluten to keep the possible damage from the gluten happening.
T minus 35 days till we hopefully have some answers. That’s if they give us answers that day.
For anyone unaware of the procedure;
James will get an IV, and be put under anesthesia and a small tube with space for tools/cameras to pass through will be placed down his throat - it will continue on to his stomach, and then his intestines. They will look at his stomach and check for signs of damage and move on ward to the intestines and the villi where they will take a biopsy and look for damage/signs, the villi should be inflamed if he has celiac. They may also take biopsy from other areas, not sure. From what I’ve gathered, they should be able to tell us some results that day but the biopsy will take a few days to read.
It will take place 2 hours away, the actual procedure itself will take around 20-45 minutes. We’ll need to be there before the procedure and as we learned with E’s brachio/plagio stuff, usually these things aren’t on time. Then he’ll be in recovery for who knows how long. It will be a long day.
We have to take J to his pediatrician to get a pre-op physical done.
Between our upcoming visit to family and keeping the kids not sick for that, and then getting home and needing to keep him healthy for his own procedure, they’ll be stir crazy! Heck, I will!
February 9th, 2010
After a talk with the nurse who finally was returned her call by the dietitian, she said that J doesn’t have to have a specific amount of gluten- just needs to be eating it to show.
So, I made him a gluten free/wheat free 2 cup, and 1 cup rye flour bread.
He ate some of it and was itchy the rest the night, we changed his pjs 3 times, put on lotion, gave him his prescription for itching. He also broke out.
This morning the nurse called and left a message (we were still asleep) and she said the Dr got back to her, and after talking - we are moving ahead with the Endoscopy. Someone will be calling to schedule it with us, ASAP.
February 4th, 2010
though I’m not sure barley loves him.
He’s eaten it the last 4 nights for dinner, just straight up cooked in vegetable broth and a little butter. However, he’s itchy to the point of raw. 
At the same time we started oats/barley and rye, we had to change his miralax and ex-lax use, pretty drastically.
Oat was not successful at all.
Rye James won’t eat, he puts it to his mouth and then hands it back to us.
Barley, he loves but we’ll see the effects - itching raw makes me dislike it.
Hopefully we hear something soon.
He’s scheduled to see the DR in 2 weeks-the 12th of February.
Nothing so far today
February 1st, 2010