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Yet Another Emma Update

Discussion in 'Parents of Children with Type 1' started by Brensdad, Mar 23, 2010.

  1. Brensdad

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    Emma is now being seen by the chief of pediatric endocrinology, the chief of nephrology, and the chief of rhumatology at Texas Children's in Houston. The child has more chiefs than Kansas City. That's in addition to her immunologist, her GI, and her opthamologist. That's a lot of ists.

    Anyway, she now has a medicine cabinet that would make Wilford Brimley jealous: synthroid, Cozaar, Singulair, Advair, and of course insulin. Her new docs at Childrens are absolutely wonderful, and the chief pedi endo fell in love with her and gave us his home number. He says that he doubts the Crohn's results were accurate; he thinks she will probably develop Celiac in addition to everything else. I believe his words were "We need to study her DNA and see exactly how far up this goes." I believe that if he were there, Joe Biden would have said "This is a big ------- deal.":D
    Her kidneys seem to be holding up, and her BG is pretty good considering all the other chaos going on in her little body.

    The funny thing about her visit is that someone stopped Amy and Emma in the hall and said, "Is that Emma?? We love your blog!" Emma ran into her own little fan club in Houston!

    On a serious note, the other night we were quite certain that her adrenal system was completely shutting down; it wasn't, but it's pretty sobering when you realize your precious little baby, at 5 years old, is as healthy as she's ever going to be in her entire life, and that by 20 years old she's likely to be hobbled by arthritis, GI problems, and even kidney failure; and that's assuming diabetes won't have had a significant impact by then. I don't mean to drag anyone down, but others don't quite get it, and when well-meaning co-workers ask how Emma is doing, or how her appointments went, I just reply "fine" because how in the world could I tell her story next to the coffee pot in the breakroom? How do you help people understand why I skipped her appointments in Houston and stayed at work when layoffs are afoot, even when it's obvious I won't be laid off as long as the company itself survives?

    All of us here live a very strange life that few would ever understand, and sometimes even trying to explain it only makes us seem more strange.

    Anyway, Emma goes to kindergarten half-days when she's well, and her endo walked in to hear her saying "Love is spelled L O V E. So the "e" is silent, right?" She's happy, smart, and of course cute as a button. And I'll take that.
     
  2. sisterbeth43

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    I am so sorry to hear this. I do hope and pray that something can be done to help her. You will all be in my prayers.
     
  3. 2type1s

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    Thank you for the update..I often wonder how little Emma is doing! it's maddening having a child with multiple issues, and have some still undiagnosed! i answer the same way..."fine" or "good"....but always bite my tongue not to add "for now"!
     
  4. Caydens_Mommy

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    Nick, I am so sorry that Emma and you and Amy are having to go through all the things you have to.. No child should have to deal with that much.. You will be in my thoughts and prayers!
     
  5. valerie k

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    keep the hope. New miracles happen every day. We can only imagine what new medical revelation will happen. keeping her and your family in my prayers. She is a fighter.
     
  6. Jensmami

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    Honestly I am lost for words, it makes me so sad reading your post. It is not fair that a little girl has to deal with so many issues, it is enough already. But at the same time I'm amazed on how gracefully and strong she handles her hardship. One beautiful princess you got there :)
     
  7. shekov

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    Thanks for checking in. So sorry Emma continues to have problems. You are a great dad and she has a wonderful family.
     
  8. grantsmom

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    I admire you for your positive outlook (at least it seemed so to me:eek:)

    Your daughter is beautiful!

    Please keep us posted. I am not dealing with what you have to deal with, but I can understand on a level that I could not have before D.

    HUGS for Emma!
     
  9. buggle

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    When Brendan was first dx'd and I joined CWD, Emma was having a cancer scare with a lymph node. Just in the two years I've known about you guys, so much has gone on with Emma. I think Amy's recent blog post captured how difficult this is -- and that was just the diabetes part.

    Emma's a little trooper -- and so are you and Amy. No little person should have to go through all that she does.
     
  10. Barbzzz

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    It's hard (and exceedingly sad) to believe that such a beautiful little girl (inside and out) could be in such a world of hurt. Nick, you, Amy and Emma continue to be in my prayers.
     
  11. hrtmom3

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    I often find myself thinking and wondering how Emma is doing. I am glad you decided to give us an update although so sorry your beautiful Emma has to deal with all this. She will continue to be in my prayers.
     
  12. selketine

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    Emma is certainly thriving despite the challenges - I'm glad to hear that you have found some excellent doctors to help you.:cwds:
     
  13. BrokenPancreas

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    Emma is blessed to have parents like you and Amy..
     
  14. curediabetes14

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    I will definately be keeping your family in my prayers. She is such a beautiful little girl. Our children amaze us at times. We never know what God has in store for us. Please keep us posted.

    Be proud of your little girl and of the job that you and Amy are doing.
     
  15. LJS118

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    I haven't been to CWD in quite some time, and just started back on a few days ago. I am so sad to hear that things haven't gotten any better for Emma. I often wonder why things like this happen...its just not fair. I will keep you guys in my prayers.
     
  16. hawkeyegirl

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    Thank you for the update, Nick. It saddens me to hear of all that Emma goes through, but her resiliance and spirit is really uplifting. My best wishes to you and your family.
     
  17. lynn

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    Thanks for the update. I think about and pray for Emma often. God has blessed you with a very special little girl.
     
  18. Flutterby

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    Poor Emma.. I'm sorry there is another thing on the list.. she certaintly looks healthy (and of course beautiful and happy) in her pictures. I hope the celiac testing comes back negative and that is something you do not have to deal with!
     
  19. Lee

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    Ditto - she is a precious little girl.
     
  20. GaPeach

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    So sorry that your precious and most definately "Cute as a button" princess is having to go through so much. I am glad to read that she is happy. It is demonstrated by that beautiful smile. You are wonderful parents - it shows.

    Perhaps, she will one day be one of those -ists (a specialist, geologist, chemist, or something-ist.) I pray that she will find relief from all her medical trials and that she will be a strong, healthy young lady who can pursue anything she chooses in the future.
     

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