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New here and not sure what to think :-(

Posted by on Mar. 21, 2012 at 7:03 AM
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At river walk in new Orleans

So the early steps therapist finally came yesterday for a hands on evaluation for Payne (ds3, 9.5m)

The first thing she said when she came in and saw him was "wow, he is pretty floppy still isn't he?" :-(

He is behind in cognitive, gross motor, and fine motor. (I've been saying he was for months now and no one listened to me)

And she said she feels like he has hypotonia. (I've been saying this since about 3m old!!!)

It's not what you want to hear about your child but at the same time I'm glad someone sees what I have been seeing for so long!

She suggested we see a pediatric neurologist. I called my friend whose son just had the hemispherectomy (some of you may remember me talking about them) anyway she's knows neurologists and highly recommended one in N.O. She gave me her number so I will be calling this morning.

Not sure when Payne's therapy will start, it will be about a week before we get back the actual scores from the evaluation yesterday.

I don't know what I feel :-( sad, scared, mad (that no one listened sooner), relieved

Anyway please keep my tiny little man in your prayers. He is really small for his age (15lbs and was born almost 8lbs). I just want answers. He is such a sweet little man.

Oh and my name is Elizabeth :-)
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by on Mar. 21, 2012 at 7:03 AM
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Replies (1-8):
willysmama
by Valerie on Mar. 21, 2012 at 10:05 PM
2 moms liked this

Hi and welcome! What a cute little man you have.

dawncs
by on Mar. 21, 2012 at 10:25 PM
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Welcome to the group! It is both scarey and a relief when someone confirms your suspicions on a disability for yourself, spouse, parent, sibling, or child. It can give them much needed help in receiving therapy. You might want to check out http://www.easterseals.org/ and http://www.wrightslaw.com/.

Dawn
Beautifully Talanted Autistic Social Story Author
Diagnosed Asperger Syndrome as an adult
Diagnosed Edema (since young)
Author Page: http://www.toyboxunlimited.com/ (has discounts)

Steph_G.
by on Mar. 22, 2012 at 6:38 AM
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Welcome, I know exactly how you feel, at least for me it's like you've known deep down that something is wrong but when you actually hear someone say it you have so many conflicting feelings, like things just got worse by labeling it, but at the same time things can now get better because someone is helping to fix it.

ambernicole531
by on May. 8, 2012 at 7:40 AM
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  Hi Elizabeth!! I have felt the way you do, and to be honest, I still do. When others finally started to agree that something was wrong with my little guy all I heard was "environmental"  What the heck where they implying??  I had first steps come out for an evaluation at 18 months when he wasn't walking, just to be told that he did qualify, but they felt the services would be wasting their time and he would eventually catch up....moving forward to the age of 4.5 and we are finally getting somewhere. To be honest, now that we are moving on beyond "environment" I am super scared...so the feeling never really goes away.  I wish you the best wishes with your handsome little man!!!  and our nuerologist has been awesome, and his therapy is working wonders for him!! He is pedaling a bike now!!!! 

echupko
by on Sep. 8, 2012 at 4:44 PM

Just a little update.... Payne is doing really good. He was only 16lbs at a year and now at 15m he is over 19lbs!!

He is in PT, OT, and ST and he is getting stronger everyday! He is still not walking or anything but he can stand unassisted! B/c of the hypotonia his hips are still pretty loose but his balance just gets better and better! He doesn't really talk at all but he uses sign language well!! He can sign more, milk (to nurse), all done, please, eat, and shakes his head yes or no. His dr's are thrilled with his progress in the last couple of months! Therapy has done wonders for him and taught me how to help him!
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echupko
by on Sep. 8, 2012 at 4:48 PM
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Oh and the neurologist ran lots of blood work and had a ct scan done on him...everything looked perfect. We are thinking its just benign hypotonia. Praise God!
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willysmama
by Valerie on Sep. 9, 2012 at 9:13 AM
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Thanks for the update. Sounds like he is doing wonderfully.  :)

Steph_G.
by on Sep. 9, 2012 at 6:33 PM
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That's exciting, I'm glad he's making so much progress

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