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**caglebaby**

ec3under4ec3under4
in Austin Babies
Just wanted to see how your daughter is. I remember you saying that you guys were going in for some additional testing. I hope things are getting better and/or you are getting some answers!!
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Re: **caglebaby**

  • august8080august8080 member

    imageec3under4:
    Just wanted to see how your daughter is. I remember you saying that you guys were going in for some additional testing. I hope things are getting better and/or you are getting some answers!!

    Me too!

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  • CagleBabyCagleBaby member
    Thanks I wasn't sure if yall still wanted updates. Sarah had an MRI and some other testing while in the childrens hospital in temple last weekend. All came back normal. Still not sure why she is screaming and she is still screaming. :( Right now we are waiting on genetic testing to see if anything comes up. The biggest issue is the fact she has almost stopped growing. She has dropped from the 25% to the 1% and still dropping. :( *he has also been refered to ECI since she is missing milestones. She cant sit, roll and now wont put weight on her legs. I jus hope we find something out soon.
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  • s-a-r-a-hs-a-r-a-h member

    imageCagleBaby:
    Thanks I wasn't sure if yall still wanted updates. Sarah had an MRI and some other testing while in the childrens hospital in temple last weekend. All came back normal. Still not sure why she is screaming and she is still screaming. :( Right now we are waiting on genetic testing to see if anything comes up. The biggest issue is the fact she has almost stopped growing. She has dropped from the 25% to the 1% and still dropping. :( *he has also been refered to ECI since she is missing milestones. She cant sit, roll and now wont put weight on her legs. I jus hope we find something out soon.

    I'm sorry you still don't have any answers. You and your family will continue to be in my thoughts and prayers. Please continue to keep us updated on Sarah's progress!

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  • clynn58clynn58 member
    Yes, please continue to update here I think about yall often and pray that you can find an answer soon.
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  • amycathyamycathy

    I am so so sorry to hear you don't have any better news. 

    Please forgive the dumb questions but is there anyway they can feed her via IV or something straight into the stomach so she is getting the nutrients she needs to help her grow?

     

    Please keep us updated. We will continue to pray for her every night.

    Hugs! 

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  • CagleBabyCagleBaby member
    imageamycathy:

    I am so so sorry to hear you don't have any better news. 

    Please forgive the dumb questions but is there anyway they can feed her via IV or something straight into the stomach so she is getting the nutrients she needs to help her grow?

     

    Please keep us updated. We will continue to pray for her every night.

    Hugs! 

    not a dumb question at all. They are adding coconut oil to her specialized high cal formula right now. If this doesn't work a feeding tube may be in her future. :(
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  • brooke152brooke152

    imageclynn58:
    Yes, please continue to update here I think about yall often and pray that you can find an answer soon.

     Ditto this.  I think about y'all a lot.  Saying a prayer for you all now. 

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  • august8080august8080 member
    Oh man, I'm so sorry you're still doing this! I really hope she doesn't need a G-tube but maybe it will give y'all some relief from the worrying about her weight gain. I'm sorry if this has already been asked, but have they explored metabolic or mitochondrial disorders as a possible root cause?
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  • CagleBabyCagleBaby member
    imageaugust8080:
    Oh man, I'm so sorry you're still doing this! I really hope she doesn't need a G-tube but maybe it will give y'all some relief from the worrying about her weight gain. I'm sorry if this has already been asked, but have they explored metabolic or mitochondrial disthorders as a possible root cause?
    The drs have mentioned before about maybe a metabolic disorder, but no testing has been ordered, just a basic genetic panal and extened cf testing.
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  • bluestreetbluestreet

    I hate that they haven't found out yet. She is such a sweet little baby!

    I'm sorry I haven't been in touch about bringing more dinners! I've been in and out of town with my mom, but I will definitely be in touch when things calm down!

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  • 2H2L2H2L member
    imageclynn58:
    Yes, please continue to update here I think about yall often and pray that you can find an answer soon.
    Definitely! I've been wondering, too. I'll keep y'all in my thoughts and hope you get answers and find relief for her soo. 
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