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Positive thoughts please

realisticdreamsrealisticdreams member
in Special Needs
Hey everyone, about a month ago DD1 started to complain her legs were hurting (she is almost 4 now-November) and I mentally noted it and kept chugging along, it turned into a daily basis thing and then it turned into that she would stop what she was doing because of it, or lay back down.  I still didnt' want to freak out..however that ended when she told me that her feet were asleep.  When i asked her to describe what that meant she said it felt like ants were tickling her feet.  I assume they are tingly/numb.

After she said that twice I called the neurosurgeons office and they called Friday with an MRI this week (Thursday morning) and we see her surgeon Friday afternoon.  I will get the results from her MRI Thursday either before we leave, or I have to pick the report up later that day to give to the dr on Friday.  
I am not necessarily in freak out mode more like...oh I think i'm going to puke mode.  She has cried alot in the car about them hurting and it's breaking my heart.

I can't imagine the thought of another spinal surgery, but we need to know whats going on.  She's also falling alot..alot alot alot.  

So, please keep us in your thoughts, the fact that she's older makes this so much harder, I have to explain it to her in a different way and she is going to start remembering some of this stuff.  I'll keep you updated.  =(
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: Positive thoughts please

  • ToastieSimonsToastieSimons member
    You and your family will be in my thoughts and prayers.  Hoping everything goes smooth and easy :)
    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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  • d.fd.f member
    Sending major good thoughts.

    DS 09/2008

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  • funchickenfunchicken member
    Thinking of your DD--I hope she doesn't have to have another surgery.
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  • JoJoGeeJoJoGee member
    Thinking of your family. Hoping for the best.
               image      image      image
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  • lite-brightlite-bright member
    Oh, man. Sending major good thoughts for her and for you! 
    image

    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
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  • MaxandRubyMaxandRuby member
    T&P going out to you, her, and the rest of your family.
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  • mommy0411mommy0411 member
    Sending lots of thoughts and prayers for your family!


    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
    Lilypie Pregnancy tickers
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  • JustinloveJustinlove member
    T&P coming your way!  You guys need a break!
    My Craft Blog: Sew Girly Studio
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  • Assembly_ReqdAssembly_Reqd member
    hugs and good luck!
    WAY 2 Cool 4 School


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  • realisticdreamsrealisticdreams member
    Thanks everyone.  She is totally being nonchalant about it.  It's kind of humbling.  No freaking and really minimal questions.  She just wants to make her legs better.  I did get her a princess jasmine doll from jcpenny last week and i'm going to give it to her in the car tomorrow after we drop Morgan off.  Yes..I do kind of feel like i'm bribing her lol
    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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  • ToastieSimonsToastieSimons member
    realisticdreams said:
    Thanks everyone.  She is totally being nonchalant about it.  It's kind of humbling.  No freaking and really minimal questions.  She just wants to make her legs better.  I did get her a princess jasmine doll from jcpenny last week and i'm going to give it to her in the car tomorrow after we drop Morgan off.  Yes..I do kind of feel like i'm bribing her lol
    bribes for medical procedures are ALWAYS okay.  Our kids go through so much more than a typical kid that sometimes they deserve a little bit more, especially if it makes things go easier on you and her.
    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
    Report Reply
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