Wednesday, August 5, 2009

The results are in...now what?

Today has been a busy day. As far as I can remember, Reagan slept well last night. Sometimes my days and nights just run together and I can't remember which was which, today is one of those days. We've had a busy day today (with no naps to speak of). We started off with a visit to the ophthalmologist who confirmed that yes, Reagan still needs cataract surgery on her left eye (her 4th and hopefully last cataract surgery), so that is planned for next Tuesday August 11th. Then we headed over to feeding therapy where she had one of her best sessions yet! She was munching away on veggie straws! Big bites and real chewing! Very exciting. She took a few sips of apple juice from a cup! Baby steps. Then we were able to squeeze in a session with Reagan's favorite OT. With all the insurance issues we've been having we had to stop sessions with her for a while (which was so depressing because she worked so well with Reagan), but we've worked out an agreement with the center for a discounted rate and she'll now be able to see Reagan twice a month. That's great news! She did mention she that Reagan's tone felt a little better than before. I think it's the Clobazam. It's not helping too much with her seizures, but it is allowing her to finally sleep and loosening her up a little. While Reagan was in OT her GI doc finally called with the results of her colonoscopy/endoscopy. I have to admit, I was expecting everything to come back normal (since all of her tests come back that way) and because after initial inspection everything appeared normal. But they did find something. The biopsies showed a diffuse inflammation throughout her intestinal tract and the presence of Eosinophils , a white blood cell that could indicate an allergic reaction or infection, in every biopsy taken. Obviously inflammation and allergy could be causing the abdominal pain Reagan has been suffering with all this time. Reagan's doctor wants her to see an allergist to check for potential allergens before doing something more drastic like changing her diet or giving her a course of steroids. So that's the plan. Unfortunately, the doctor she recommended has no openings until Feb 2010!!! Insane! Hopefully her GI doc can call and get us in sooner. We'll see. I'm not waiting 6 months! So that's it. A busy day. New information, although I'm still not sure what to do with it.

6 comments:

Heather said...

I for one am SO glad there is an answer.It is about time.Yeah ...2010. Ain't gonna happen and that's because I know you.Wow,great feeding too and a cup,another wow.All despite the seizures.Tells a bigger story though and that is if these seizures could just be controlled and better yet stopped,Reagan will take off.I know should would.I KNOW SHE WILL.

blogzilly said...

How does any doctor get off saying wait until 2-2010? That is just crazy and unacceptable.

Holly said...

We are in the same boat with Caleigh. We finally have our appointment with the allergist on Tuesday and I can't wait! The appointment was for 2 months from now, but I literally called three times a week to see if there were cancellations. As if you have nothing better to do, but sit on the phone, but it worked for us.

I hope the allergist gives you an easy answer and Reagan's tummy trouble goes far far away!

Lacey said...

I know I've seen your blog before, but for some reason didn't add it to my friends. Then my good friend Heather introduced me. My Jaxson has tons of siezures that we have never been able to control. In Jan. 2008 he actually went into status and we had to put him into a medically induced coma to stop then. We almost lost him then. He is currently on the ketogenic diet and three siezure meds, still having siezures. Yikes.

Kamden said...

we pray for regan every nite
kamden

jocalyn said...

oh my goodness...Kamden is my son. He's taken to this blogging thing. (guess its better than video games?!?!) He just came in my office to give me the update on Reagan!

Like Kamden said, you guys are always in our prayers.

Glad you have some answers. Hopefully seizure and tummy relief are in your near future!