Hematochezia
ESR Raised
Anemia
Anorexia
Ulcerative Colitis
Fatigue
Hypoalbuminemia
Yea - don't worry I had to google most of it too. They're just a bunch of fancy words that mean she felt like total poop (haha - get it).
Can you believe it's been almost 2 months since she was in the hospital?
I am happy to report that she is feeling MUCH better. MUCH, MUCH BETTER. She started kindergarten last month and has just loved every moment. She has gained 5lbs and happily tells me every day that her tummy does NOT hurt.
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| The Girls with their awesome principal - 1st Day of School |
I would love to tell you that she is in remission but we currently STILL have her on steroids although we are trying to taper her off of them. She is also taking Azathioprine (ay za thye' oh preen) as her maintenance medication. The good news is that her hemoglobin is back up to 13 so no more Super Sleepy Sophie!
We go back to see her doctor next week and I hope to be able take her down another notch on the steroids and work towards getting her totally off within the next couple of weeks.
I want to thank everyone for all of your continued prayers, good thoughts and kind words. We feel so blessed to have so many people loving and praying for Ms. Sophie.
I also want to thank everyone that reached out to us, sent us emails, found support groups and got me in touch with other parents living with Crohn's and Ulcerative Colitis. You people are amazing!
Although many, many people have suggested eliminating food from her diet (gluten, dairy, refined sugar) or keeping her on a restricted diet (specific carbohydrate diet, anti-inflammatory diet) we have decided that at this time to just let her be a kid and eat what she likes. There are certainly foods that we avoid but she is usually the one now to eliminate them if they make her feel bad. We keep a food and poop journal (thanks to another Crohn's mom) --- don't be jealous! :)
We tried several things and for Sophie nothing has really helped except for medication. It was a hard decision but she is feeling better, has more energy and is back to her super sweet little self. In the end that is what is important to us right now.
Keeping calm and carrying on . . .
