Update: More tests. An upper GI where she gets to do a barium swallow and have her small intestine X-rayed along with a DEXA (bone density scan) and another blood draw to determine whether or not she has an enzyme to process one of the medications the doctor is looking at prescribing that is effective with smaller children. The original treatment plan may be altered if this will work for her. The doctor is taking a closer look to rule out the possibility of Crohn’s Disease, a related but much worse disease. For those of you who missed it, I did discuss at more length what this all means on my other blog.
Well, I had intended on posting yesterday. I did not slink away into a cyber-hermitage after receiving my daughter’s diagnosis and actually had a post planned for last night. But not being able to log in to my account put a bit of a damper on my ability to post. For those who have not seen it and are curious, we do have a tentative diagnosis of ulcerative colitis.
I had planned on switching gears today and leaving behind our whaling unit to begin a bit of a study of the diagnosis, whatever it ended up being, to begin to help my daughter learn about the disease and begin to learn to manage it.
We got as far as the definition of “chronic” and it began to dawn on her that this was not going to just go away. That was about all she was emotionally able to handle today, so I read to her a little about how most people are healthy more often than they are sick and that a lot of the time she will not even have to think about the disease. And then we stopped for today.
This study isn’t going to be able to take place like other studies. It will be “here a little, there a little” as she works through her own anxiety of what the future holds.
And now hopefully I really will resume normal posting, barring the technical difficulties which seem to have overtaken this blog over the last couple of days.
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Bless you guys. Hope you are able to use the “not able to post” times for personal reflection somehow. Sometimes, when we are silent, we can think more deeply.
Other times it’s plain ol’ sanity to blog!! Hope your Mouse was able to have a decent meal finally.
I don’t know that she ever enjoyed grilled cheese and tomato soup as much as she did last night. And she has been hungry today. It is nice because she hasn’t had much of an appetite recently.
Grilled cheese and tomato soup: one of my all-time favorite meals! We’re still praying for you guys.
Mine, too.
I was surprised that is what she requested, though…a whole week ago when I asked her what she wanted to eat when she got home from the hospital.
The staff was great and they gave her a little bear now named Heidi that is accompanying her everywhere.
Looks like the technical difficulties have subsided. A lot of trouble was on the server side, some was because of the comment plugin issue. They fixed the server today, the comment stuff is fixed now. Hopefully all will be well with the blog and you can relax and deal with the home stuff without concern for this.
We’re praying that she can continue to be a little girl. I’m glad it’s not worse. I’m sad that it’s chronic. Much love is coming your family’s way.
That’s ok, Heather. I really wasn’t that worried about it.
Kristina, she is still a little girl.
No worries, there. She was running around with her friends at church today like nothing had ever happened…except the hospital band which she doesn’t want to take off for some reason.
Don’t worry… The whole world is with you mam…..
I am praying for your daughter and your family.
I was in the hospital alot as a child (I sent you an email with the whole story) and I loved wearing my hospital bracelets to school. Wide eyes, oohs and aahs. Cool.
We are praying for you all. It doesn’t surprise me a bit that Mouse is running around like no big deal. Kids are like that.
Grilled cheese and tomato soup. I think I might have to have that for breakfast now.
I thought about all of you yesterday. That’s a lot for a child (and her family) to deal with. Poor thing. It sounds like you are doing the right thing for her, letting her process it in little bits, here and there. Good luck to all of you, and I am glad that this is manageable.
I will be praying for your daughter! May the Lord give you wisdom and comfort as you guide here through this valley!
Thanks, everyone! She is pretty much her normal, chipper self. With just enough left over to complain about being asked to do dishes. All five of them.
Dana,
I’m glad you were able to post again - I must admit I got a bit concerned when you weren’t able to post anything yesterday. Sorry to hear your daughter’s diagnosis, but glad it wasn’t something even more serious. You are in my prayers.
My daughter has a thing about hospital bands, too. It must be a girl thing.
We have had to deal with the chronic medical condition issue, as well. It gets better when they realize reality isn’t always as bad as imagination.
Keeping Mouse in our Prayers.
We’re praying here, too!