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official diagnosis: torticollis, low tone, plagiocephaly, and brachycephaly

leepinlizzardsleepinlizzards
in Special Needs
I will admit, I wallowed for about an hour this morning afterward.  Something new just keeps coming at us.  Current plan is to go tomorrow morning for a ortho scan and then physical therapy one a week. 
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Re: official diagnosis: torticollis, low tone, plagiocephaly, and brachycephaly

  • Florak8Florak8

    Sounds like my kid! We did not have the brachy, though. Is that picture of your LO sitting up already? That is awesome!!!!

    I know what you mean about one thing after another. That seems to be the way it is the first year. We thought we had a fairly healthy kiddo and then crap just started coming at us left and right.

    Hang in there, cry when you need to! 

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  • leepinlizzardsleepinlizzards

    Yes, that is my monkey.  He's just over a year old.  In the last year we've had 12 days in the NICU, a life flight ride to Riley's Hospital for hernia and hydrocele surgery, and then a subsequent admission for a ruptured ear drum. 

    It took 6 months to get us a referral for the therapy center (after a failed neuro consult due to insurance) and then it wasn't even his normal doctor that pushed it. Everything is happening fast now.  Overwhelming. 

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  • Florak8Florak8
    It definitely is overwhelming. Do you have some family in the area to help you juggle appointments and life responsibilities?
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  • realisticdreamsrealisticdreams member

    Sounds like us in the beginning, except P's tone was high.  

    I know it can get overwhelming, quick.  

    Sorry & Hugs. 

    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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  • leepinlizzardsleepinlizzards

    imageFloraK8:
    It definitely is overwhelming. Do you have some family in the area to help you juggle appointments and life responsibilities?

    Lots of extended family but none that can help regarding appointments and life.  Most don't understand or care.  They have their own drama to deal with.  

    The therapist was going to try to refer us to First Steps but bringing a PT into the house is not an option.  My SO works third shift and the 9 year old tends to get, shall we say, very AWish when there are new people around.  He likes to put on a show.  So we will manage as far as appointments in the mornings. 

    Luckily, I'm not working again til August and insurance is covering everything.

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