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Tomorrow is M's MRI **update**

realisticdreamsrealisticdreams member
in Special Needs

Sorry to make two posts back to back.  Tomorrow morning we have to be at the hospital at 6:30 am.  Morgan's lumbar MRI is tomorrow to find out if she has a tethered cord too.

It's so..weird to know that tomorrow is going to potentially alter her life (and ours) forever.  I'm pretty numb.  And slightly nauseated.  

I will get the report before I leave or will drive back to the hospital and pick it up after a few hours.  I have to have it for our Friday morning appt with the neurosurgeon at VCU.

I don't even know how I feel about this, I know it won't be the end of the world, that P & M will have each other to lean on for support, etc.  It doesn't even mean that M will have the same problems that P does or vice versa.   Mostly, I just want to know if we are looking at another spinal surgery and PICU stay which I will have to do on my own since H has no PTO from the new job.

The not knowing is the worse, and the fact that I can read the MRI report, well I haven't decided if that's good or bad yet. lol.  

Bonus points for our new insurance not requiring a prior auth for the MRI just "notification!"  

I just wish I had some type of gut instinct on if she does or not.  I mean she certainly has some of the symptoms/physical characteristics but really I think either way it turns out i'm going to be surprised.  

 

**update**

I'm not a radiologist, so I'll start by saying that BUT her cord is tethered it says the same thing P's report said.  And it also says something about hydrosyringomyelia.

H is in denial

I'm so angry I think i'm going to explode.

THIS IS FING BS.

We go to the neurosurgeon in the AM and I have no idea how i'm not going to fall apart.  It's not just that it's that she has a tethered cord it's also, a what the F did I do wrong that something that isn't supposed to be genetic happened to both of our girls.  And who knows what M's bladder is doing.  We already know her VCUG was worse than at P's age.   

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: Tomorrow is M's MRI **update**

  • MaxandRubyMaxandRuby member
    Good luck tomorrow! I hope everything goes smoothly!
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  • ToastieSimonsToastieSimons member

    Good luck!!! Hope it goes smoothly for you and it's quick and painless.

    Let us know how it goes, we'll be thinking of you guys. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • ObsessionObsession member
    Good luck tomorrow.  We did our MRI at VCU too and it was a very smooth and easy process!
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  • Assembly_ReqdAssembly_Reqd member
    Good Luck tomorrow!
    WAY 2 Cool 4 School


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  • realisticdreamsrealisticdreams member

    imageObsession:
    Good luck tomorrow.  We did our MRI at VCU too and it was a very smooth and easy process!

    We are doing it at Mary Washington Hospital in Fburg.  This will be our 5th there so i'm familiar with their process.   

    They are way closer and always able to get us in sooner.   

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • ObsessionObsession member
    imagerealisticdreams:

    imageObsession:
    Good luck tomorrow.  We did our MRI at VCU too and it was a very smooth and easy process!

    We are doing it at Mary Washington Hospital in Fburg.  This will be our 5th there so i'm familiar with their process.   

    They are way closer and always able to get us in sooner.   

    Oops I read wrong :)

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  • gimmietimmiesgimmietimmies member
    Good luck! I have my fingers crossed that everything goes well tomorrow!
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  • timewilltelltimewilltell
    Hope things go great!
    Z(Monkey) 6-30-07 and E(Bear) 9-6-10 Living life with my little warrior and his big brother :)imageimageimage
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  • ARJ11ARJ11
    Good luck today! I hope everything goes well. Keep us updated!
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  • Louise06Louise06 member
    I hope the MRI goes smoothly and you get the answers you need.
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  • Assembly_ReqdAssembly_Reqd member
    imagerealisticdreams:

    **update**

    I'm not a radiologist, so I'll start by saying that BUT her cord is tethered it says the same thing P's report said.  And it also says something about hydrosyringomyelia.

    H is in denial

    I'm so angry I think i'm going to explode.

    THIS IS FING BS.

    We go to the neurosurgeon in the AM and I have no idea how i'm not going to fall apart.  It's not just that it's that she has a tethered cord it's also, a what the F did I do wrong that something that isn't supposed to be genetic happened to both of our girls.  And who knows what M's bladder is doing.  We already know her VCUG was worse than at P's age.   

    Oh my that totally sucks. I am so sorry you have to walk this road again. Hugs.

    You did nothing wrong. They just don't have a genetic test sensitive enough to pick up what the causal gene or where mis-spelling is. Hang in there!

    WAY 2 Cool 4 School


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  • JcrabJcrab
    I am so sorry about the results, you have every right to be upset! Hugs!
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  • gimmietimmiesgimmietimmies member
    ::HUGS:: I know it wasn't the results you were looking for, you did nothing that caused this. It's so easy to be angry and be focused on the why and how and blaming yourself. Take a look at what is, and roll with it. It's not everybody's normal, but it's your normal.
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  • april262011april262011
    I am so so sorry.  I am struggling with anger issues over my son's suffering as well.  Hugs.
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