Archive for September, 2009
This morning I got the results of the tests the Pediatrician ran on James.
His levels didn’t show any signs of infection. The Celiac test appears negative, but one of the antibodies is low. Normal being 14, his was 8. This could indicate a false negative, or perhaps another type of autoimmune disease, or nothing at all.
So, we will see the GI Specialist Dorota Walkiewicz, MD in November at a more local clinic where she visits once a month, otherwise we’d end up traveling to Madison to see her.
Please keep us in your thoughts, we need to keep James on gluten foods thru the visit, in case of any further tests. This means we’ll still be on the roller coaster of ups and downs minimally for another 2 months. They need to be eating gluten (if he’s got an intolerance to it/Celiac) to see the damage, and have the results be correct.
Also, while Celiac isn’t a life or death type of disease, it’s a huge lifestyle change. The next step if the celiac is suspected, but we can’t get a positive on the blood tests likely will be a biopsy of James’ intestines. This isn’t something we’d like, to put 2 year old James under anesthesia, and a tube down into his intestines, ect…. though he’s only been eating these foods, if that’s even the cause, for a year or so, so perhaps the DR won’t want to do such a test on him, that there might not be damage enough yet. I don’t know.
I myself have had many tests in my youth checking for ulcers, and gastro type issues that it makes me wonder! I remember waking up in the middle of my tonsil removal. It’s all a scary thought, and we feel so bad already for the little guy. He shouldn’t have to feel this way, and hopefully we’ll get some answers soon.
ETA: Photos
New train. Daddy was with J&E on Saturday (Momma was doing a bridal shower for friend Silvia) and so he took them to the zoo, got them pink lemonade (a real treat), and then to the store for a treat- this train set, before ending with McDonalds (another treat). However, Thomas, the engine who is motorized, has been missing since that day.
See my muscles? ! ? ! ?
One of the best fathers I know;
Have a lot of great other ones, but James’ll be home from drum lessons soon and we’ll be watching some Dexter-OMG, loving the show.
But, if you need to know how to see photos-until I figure out how to put it back, if it even can be- click on “Betterley Photos” on the right hand side.
September 14th, 2009
So we were back at the Drs for James today.
They drew some blood, during which our little boy was just a rockstar. There was no crying, no even understanding I think. He just watched, curious, as one woman held his arm down that was being poked, and the other did the poking. Momma was in charge of holding him and his other arm whilst on her lap.
They are testing him for a variety of things.
To check the current status of your kidneys, blood sugar, and electrolyte and acid/base balance. For any sort of issues with those, that might be underlying the cause for all his troubles. They are checking for Celiac Disease. And a few other things to help give a baseline if nothing else, and also to hope to rule out a horrible IBS issue, we’re to monitor each thing he eats in a journal, and the reaction.
It sounds as though, regardless of these results, we’ll likely end up being bounced back to the allergist and/or a GI Specialist. He had his the test today, and it’s a holiday weekend with everyone off on Monday, so the results at earliest, if even then, will be gotten Tuesday.
We just want James to feel better. He should feel this way every few weeks.
Just hoping and praying that we get some answers.
On a fun topic.
James, not Evelyn was the first to go POTTY on the potty!! I almost fell straight over!
He’s been really good the last few days with understanding he’s going potty, and so hopefully we’ll see some progress on that! And, Evelyn’s been telling me before she goes #2, but she hasn’t quite gotten the timing right to do it on the potty, but instead 2 seconds after her diaper is on.
We’ll get there!
September 4th, 2009
The time for Grandma to visit came to an end, we got some photos before we headed out.
And then made our way to Chicago. It was a long, long trip. Taking around 11 hours round trip, stopping twice for food (Burger King & Taco Bell/Pizza Hut) and for about a half hour to drop Susie off. Traffic was not on our side.
We ended up just getting Susie there in time, despite having left 4 1/1 hours before she had to be there, it took us 5. She didn’t miss her train, and was there 50 mins before departure, but you have to be there an hour before to get assistance with your bags, thankfully she didn’t miss that either.
We hit up the park the day or so before Susie left, here are a few shots from then.
Another time, Daddy let the kids into his work car/our ‘no-kids’ travel alone car.
And lastly,
James played the drums (practice pad) with Daddy, he’s a musical boy!
Enjoy!!
Evelyn is cranky pants with her molars coming in.
James seems to be having an issue again with his intestinal things, hoping that straightens out, as we lean even more towards wheat free.
September 1st, 2009