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Mommy report: Biopsy results and a GREAT post

I got a call from Dr. R (the GI) last night, and he said the rectal biopsy was negative, showed her nerve cells are all as they should be, so no Hirschsprung's here! Good news for us! I knew it wouldn't be, as she just didn't fit the symptom list consistently, but it's good to know for sure. He said that since she is improving, although slowly, with her feeding, we'll give her a few more weeks and reevaluate then regarding the gastrostomy (G-tube) procedure. I still hope we can avoid it. Her lab work looked ok, just a few things that were only the itsiest bit off, folic acid and B12, so were going to follow up with Dr. Y, her pediatrician to keep watch on that.

Also, I want to encourage you to take a few minutes and read this post from Michelle at Big Blueberry Eyes. I know many of you read her blog regularly, but she does an exceptional job at responding to some questions about raising a child with DS, and I think it is SO well stated that I encouraged her to see about publishing. If you have now or ever do have a friend who struggles with a prenatal diagnosis of DS, or even finds out at birth like we did, please share this with them. I think it could save some beautiful little lives. Plus, it is good for us parents, too. Fantastic, Michelle!

Comments

  1. That was a wonderful post from Michelle wasn't it?!

    I'm so glad the results came back okay! Very good news :)

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  2. I also read the post and thought it very good. Thanks for sharing. I think the anonymous of her post is one hurting unit though and I hope someone can sit with her while she cries in the dark of night and not just judge her.

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  3. Carole--I also hope the anonymous commenter had people there for her throughout. I admit that some of her comments were some that I secretly thought early on when I was reeling from the diagnosis shock. It's only in knowing my little blessing that I learned that things don't always have to be known in their entirety from day one.

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  4. Glad to hear the biopsy results came out good!

    Thanks for linking to my post and for your kind words! I hope my post didn't come off sounding like I was judging her as that wasn't the case at all...and I hope I didn't sound defensive either. I was trying to be neutral in my wording as I know it's hard to interpret emotions and feelings via the written word. I was just trying to respond to some of her comments with the way I felt and to show another side.

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  5. RK, you should pass this post on to the Crisis Pregnancy center in town. I am sure they would like to see/use it.

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  6. Michelle--I don't think it sounded judgmental, and you're right that it's hard to deal with sensitive things via only written words... I think you did a great job.

    Mindy--Long lost Min! I keep meaning to talk to them anyway...I need to move it up the priority list.

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  7. Wow, I figured out how to make a post!! Anyway, that was a really awesome post. My mom is actually the assistant director of the Crisis Pregnancy Center here in Champaign (it's now the Pregnancy Resource Center). We go to church and are really good friends with the director as well. Her name is Greta and she would love to have this forwarded to her. I know that in her counseling some women, this would be a good resource, especially since so many people use this diagnosis and the possibility of this diagnosis as a scare tactic. I absolutley LOVE what she said about "knowing her child" becuase that is what it is all about!

    Misty Houston

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  8. Great news about the test results!

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  9. Thanks for sharing this RK! I hope all the people who need her fine words will read it and see what a blessing a child is no matter what the circumstances.It was beautiful what she said about knowing Kayla. Karen K

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  10. p.s.- So glad to hear the good test results! Karen K

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  11. yay, Braska! Glad to hear the eating is going a little better too! :)

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