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If you have any good thoughts to spare... UPDATED

Natalie_mayNatalie_may member
in Preemies

It would be awesome if you could send them our way!  Liam has a neurology appointment today to discuss the delays he is experiencing (not sitting unassisted at 11 mo adjusted (he's propped against the side of the pnp in my siggy), not yet crawling, stiff pointed toes) and the primitive reflexes that he has yet to out grow (eg turning his head when he extends an arm while lying on his back, should have been out grown around 6mo).  His last MRI came back with increased signaling shown and he had an IVH grade 2 and bacterial meningitis so neurological damage is an area of concern.

I am not hoping for prayers that he will turn out to be neurotypical, although I will be thrilled if things end up looking that way.  I just wish for answers or at least the possibility of answers.  Getting him into early intervention was bittersweet, I was happy that he would get the help he needs but a little sad that he needed it in the first place.  I'm kinda feeling that way now.  I just want to know the root cause of this so I can help him the best way possible.  I know Liam will do what Liam does and nothing a doctor tells me will change that but if he qualifies for more support or services I want them desperately for him.  The twin thing is also tough, the poor baby gets so frustrated as his brother is hitting milestones at about the 13 month level and is so mobile and active and Liam just can't keep up.

 

I'm sorry this turned into a ramble, its a hard week (the anniversary of Hunter coming home and leaving Liam in the hospital) and I just needed to get that off my chest to people who "get" it. 

 

Thanks guys for all the thoughts!  The appointment went really well and I am very pleased with what we talked about.  She feels that he is doing well, all things considered and the biggest thing we need to keep an eye on is the spastic dysplasia and she recommended a physiatrist to help treat it. (Interestingly enough I had already made an appointment with him, she was really pleased about that due to their wait list).  She gave me a lot of insight as to how that appointment will look and treatment options for his symptoms including botox in his ankles.  So thats where we are right now, focusing on the behaviors that he is exhibiting now and more watching and waiting for the future.

She was also thrilled with how he is socially, although that wasn't a concern of mine it is always a nice thing to hear the things your child does well! 

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Re: If you have any good thoughts to spare... UPDATED

  • zoeyandsummersmomzoeyandsummersmom member
    TONS of hugs. Just remember the brain is so pliable and programs like EI are there to help. Our neuro is fantastic and practices at Cornell in the city if you ever need another opinion.
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  • bhilyerbhilyer member

    I'm sorry, Natalie!  I hope you guys get some answers today.  Please keep us updated.

    Also, YGPM. 

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  • GatorNurseGatorNurse
    Saying a prayer today for you and Liam! Good luck today!
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  • katie4253katie4253 member
    Great update!  :o)
    Born at 31w3d due to severe IUGR & Placental Insufficiency--2lbs 3ounces
    image

    We'll miss you sweet Debbie Girl (4.21.12) and sweet Cindy Girl (8.9.12)
    Lilypie Premature Baby tickers

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  • njdcgirlnjdcgirl member
    Just seeing this, but I'm glad the appointment went well, and that there is a plan in place to help your LO.  I can only imagine how hard it would be NOT to compare your twins, I think it is just inevitable, but just remember that he'll do things on his own time, and that progress forward is HUGE!
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