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Another Surgery

realisticdreamsrealisticdreams member
in Special Needs
I just got back home from flying to Michigan for a doctor appt with P.  We went to see a neurosurgeon who is supposed to be amazing and after getting so many opinions/ideas/diagnosis the past year she immediately said looking at her MRI that she is re-tethered to her lipoma and scar tissue.  It's hard to accept she is going to need another spinal surgery and we are doing it so far from home (omg $$$$) but her technique will be proactive in trying to prevent this again and that will be worth it in the end.  
P is not a happy camper and can be expected, surgery is scheduled July 18th. =\
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: Another Surgery

  • ToastieSimonsToastieSimons member
    I'm so sorry she needs another surgery!  But, maybe this will help with some of her leg issues and will ultimately make things a lot better for 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
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  • macchiattomacchiatto member
    I'm sorry. I hope it goes as well as possible and that you all are able to get into the Ronald McDonald house or something to save $$.
    fraternal twin boys born january 2009
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  • realisticdreamsrealisticdreams member
    We will be at Beaumont children's in royal oak they don't have a Ronald McDonald..patient housing is $59/night I believe.
    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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