Tuesday, September 6, 2011
Super Sweet Sophie Update
July was a tough month for Super Sweet Sophie. It was by far the sickest she has ever been. Here's what we were/are dealing with ---
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.
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 . . .
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.
 |
| 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 . . .
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14 comments:
I'm so happy to hear Sweet Sophie is doing better! I pray for awesome numbers, her continued improvement, and less need for steriods.
You my friend are AN AMAZING MAMA.
Love you love you!!
PS Blog post! ;)
Oh. And its Lexi. Blogger kicked me off :(
So glad she's feeling better :) Hope she continues on that road and she can eventually be in remission! It's so hard to see your little ones suffering. Seeing those pics of her so worn down broke my heart...I can only imagine how you must have been feeling!
Yay! So glad she is feeling better! You are such an awesome advocate for your kiddos...I don't know how you do it all! So happy to see that smile on her sweet face. :)
That back to school smile is a blessing for sure! SO LOVE HER!! And you mama! You and your daughters amazing spirit will get you through!
What a relief for her to be feeling back to her own self!
I'm smiling after reading this. Such good news!!!
Okay, so I've always thought that Sophie was super cute. But, seeing her in pig tails and sunglasses? OMG!!! She could not be cuter! Seriously!!!!
Good to hear Sophie is feeling better - long may it continue!
Laura-thanks for the update. I am (IMHO) still of the opinion that this disease, like diabetes, doesn't play by any "rules" and what works for one may not work for another - what worked for a while may not the next time...so I think you're doing so incredibly well taking all advice as it comes and sifting through it to see what fits right now for your little girl. My friend who has this also believes that for him growth caused a lot of trouble, he never got a definitive answer but believes that growth hormones had something to do with it for him...no way to prove his theory, but I find that many people dealing with these diseases know more than the doctors treating them. Anyhooo....thanks for sharing that she's feeling better. It's always wonderful when our kiddos are feeling better :)
What a wonderful update Laura. I am so glad that she is feeling better and the 5# weight gain is stellar girl!!! Sending you and the fam lots of love and well wishes. xo
LOVE Sweet Sophie!
LOVE that she is feeling better and her tummy doesn't hurt!
LOVE that she has gained 5 pounds!
I'll keep praying for you both. You are an amazing mom, Laura.
Thank goodness. I'm so happy for you all that she is feeling better.
I'm so glad she's feeling better! I am praying for remission and reduced meds... and for all you to continue to deal with this with the amazing grace and strength that you are showing. You are an inspiration! LOVE YOU!
First of all, Woo-T-The-Hoo for Sophie feeling better and having more energy!!!
I am confused on the anorexia front. Unfortunately, I know way too much about that disease (my mother's health issues and death were all related back to that) but I do not understand why Sophie is afflicted with it?. Is it related to refusing or not wanting to eat due to the aweful side effects of the Chron's? Ach. Too much for such a little precious girl :(
I have been reading, just not any time to comment, lately. I am sorry to hear about Mr. Mator and his mouth . . . but was giggling like a school girl over your fantastic picture-proof documentation! I love a lady who will grab a camera in ANY event. :)
Love you, Laura!!!!! ::muah::
Oh Sophie is back to her old self, that's all I had to hear sweetie! We all do what we need to do to help our kiddos. You are an amazing Momma. And I'm not even jealous of the poop journalm not one little bit :0)
Thats amazing your are dealing with so much. Glad to hear that your daughter is responding to the medication and feeling better.