Well it seems I am only updating on Crohn's disease as of late, and unfortunately this post isn't gonna be any different.
Good News:
Nora is doing great!! She has gained 2 lbs and now weighs over 15lbs. Still not on the charts, but getting closer. She has started walking a tiny bit, taking a few steps here and there and seems to love her new skill. Dr. Heiman down in San Francisco confirmed the Crohn's diagnosis, and we learned last month that Nora is the only baby in Washington with the disease. There is one other in CA (the other one that Dr. Pickens helped diagnose), but that's all that we know of on the west coast. I wasn't kidding when I said it was rare.
Not So Good News:
Harper went in for her preliminary blood work and it looks worse then Nora's did. She is anemic and her inflammatory markers are very high. She goes in on Wednesday for a colonoscopy and endoscopy - I know it seems a little extreme to do just based on some iffy blood work, but after what we went through with Nora we aren't messing around. If Harper has Crohn's we need to know now so we can start on treatment right away.
I was able to connect with a woman who used to be in the Orting ward who has a young son (13 now, 7 at diagnosis) with Crohn's, and it was so great to talk to her. She was reassuring, encouraging, non-judgmental (yes, I have been judged for putting my daughter on steroids - people are stupid), and all around awesome. She has always been someone I've looked up to and it was so great to reconnect with her and get some advice.
I promise I will get a non-Crohn's post in here soon. Christmas pics and more are forthcoming.
Monday, January 4, 2010
Posted by Jennette at 12:44 PM
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3 comments:
Tom and Jennette,
I've been following on what's been going on with Nora and it's been breaking my heart. And now, to hear that sweet Harper may be headed down the same path is almost too much to bear. I can't imagine how the two of you have been doing but I know you have handled this trial with grace (and will continue to handle in the same manner). You are in our thoughts and our prayers.
Much love,
M&E Simmons
If this woman is who I think it is she is amazing!!! Also dont worry about the judgement when you have a sick child a lot of people think how much better they would do. But until your there, you never know. You are doing amazing!!! Heavenly Father guides each of us in what is right for OUR OWN children!!!
I read a blog called The Meanest Mom. The writer has Crohn's Disease, and her son has some sort of immune disorder as well, I believe. I know she would be willing to chat.
Keeping you guys in our prayers :)
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