Austin Babies

I got a call from her dr

This morning Sarah's pedi call med and told me that there was something abnormal with some of her genetic testing and I needed to call another dr and get an appointment to discuss what was found. I of course called right away and begged for the first appointment they could get us in. They told me the 21st, I begged some more and was able to get an appointment tomorrow morning at 8am. I then asked if a nurse could give me some insite as to what was found. She informed me that her CF genetic testing came back positive. That is all I know, so we will see what the Dr says in the morning. T&P's would be great and thanks for all the support. I may need a lot in the days and weeks to come.

Re: I got a call from her dr

  • Oh man, tons of thoughts and prayers for you and for baby Sarah. I'm sorry. Hang in there, momma.
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  • Oh my goodness that must be so scary! Lots of prayers coming your way and please let us know if there's anything we can do. Update when you can!

    Also, if someone else can go with you besides your husband, to be a second set of ears, that might be really helpful. Or you could try recording the appt on your phone or at least taking notes. This can be really helpful, esp if you're receiving upsetting or difficult information as you likely won't be able to remember or process it at the time. 

    Big hugs to you!!

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  • Lots of T&P for you and Sarah. I'm glad they were able to get you in tomorrow. Having to wait on something that big would make any parent crazy.
  • *tons of hugs* It'll be great to finally get an answer as to what is going on.

     

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  • Lots of (((hugs))) and T&Ps. Please feel free to email me any time, and I'm here to offer any advice that I can.

    And I wanted to let you know that there is A LOT of hope in the CF world right now. 

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  • man, sending lots of T&P your way.  I will be thinking about you tomorrow. ((hugs))
  • You can do this!  I agree with pp to record the conversation on your phone, get someone there who can take notes, and go with your DH.  Thinking of all of you right now and hoping for the best possible outcome.
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  • Oh, honey.  Thank you for keeping us updated.  You must be having such mixed feelings right now.

    You are definitely in my thoughts.  I am so glad you were persistent to get an appointment right away.  Hugs. 

  • Oh, wow. I'm sorry. I was so glad to read Mainer's recent post about advances in CF treatment, and I hope that Sarah will benefit from them to grow up strong and healthy.
  • So glad you are able to get an appt tomorrow! Lots of T&Ps winging your way.
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  • Thanks everyone. I am really not sure how I feel. I am just trying to stay off google until I speak to the dr. My DH is going with me because I know this is not something I can do myself. It is hard to not even know what they are going to tell us.
  • imagebluestreet:
    Oh, wow. I'm sorry. I was so glad to read Mainer's recent post about advances in CF treatment, and I hope that Sarah will benefit from them to grow up strong and healthy.

    Yes

    I'm really glad you were able to get in sooner. ((hugs))

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  • imageL L CG:

    Oh, honey.  Thank you for keeping us updated.  You must be having such mixed feelings right now.

    You are definitely in my thoughts.  I am so glad you were persistent to get an appointment right away.  Hugs. 

    Pretty much this exactly.  (((hugs))) 

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  • Tons of thoughts and prayers for you, Sarah, and your family.
  • imagekiarox2002:
    imageL L CG:

    Oh, honey.  Thank you for keeping us updated.  You must be having such mixed feelings right now.

    You are definitely in my thoughts.  I am so glad you were persistent to get an appointment right away.  Hugs. 

    Pretty much this exactly.  (((hugs))) 

    T&P for you!

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  • imageCagleBaby:
    Thanks everyone. I am really not sure how I feel. I am just trying to stay off google until I speak to the dr. My DH is going with me because I know this is not something I can do myself. It is hard to not even know what they are going to tell us.

    Smart, smart, smart! Google can be your best friend, or it can be a lying cesspool of cr@p and sensationalism. Ditto a PP who said there is so much improvement in the CF world now, don't let the internet give you fears you don't need. Lots of well wishes your way!!!


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  • I'm so glad they could get you in.  I know it's scary but better to have answers and something concrete you can start fighting than having the unknown.  Many T&Ps to you. 


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  • your family is in my thoughts for answers tomorrow!
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  • Lots and lots of thoughts and prayers coming your way!
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  • Thanks for updating, I've been thinking about you guys. I'm sure this is not the call you wanted but I hope they can use this info to take better care of Sarah! Ditto Mainer, the advances with CF have been amazing! Down the line if you have any questions about the actual genetic results I am happy to help (I'm one of the genetic counselors for De ll / se ton). There is data out there that correlates genetic test results (type of mutation) with CF features. I don't know what doc you are seeing tomorrow but hopefully they will answer all your questions. My email is gayle dot Simpson at gmail if you need anything.  Lotsof dust your way!
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  • how scary  :(  t&p for tomorrow.
  • Good luck tomorrow. T&P for the road ahead - whatever that turns out to be.  Ditto the others. {{hugs}}
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  • You've already received some great advice, I just wanted to send some hugs. Y'all are all in my prayers. You've done so great already just by listening to your instincts.  Sarah is lucky to have you. 
  • Continued T&P for you and Sarah.
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  • Sending you tons of dust, hugs, t+p. You've been in my thoughts and I'm so sorry that you're having to deal with this and hoping that you FINALLY get the answers that you need and deserve as a mama.
  • Thanks ladies, I will update you tomorrow.
  • Just wanted to say that you have been and remain in our thoughts and prayers.  I'm sure you'd most love to hear nothing but good news about your little girl, but I hope tomorrow brings you answers and the beginnings of a plan to make life sane again.
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  • Oh, I am so, so sorry. (((big giant hugs)))
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  • Sending lots of dust.
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