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Old 01-12-2013, 07:19 AM   #11
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Re: Need to decompress a little

Thank you so much for sharing this, I needed to read it again it helps me too.

You're right he is the same little guy I adore and I will adore him the same no matter what label they stick on him. My only wish for him is that he feel loved and that he is happy no matter what he does.

His PT was by yesterday and she said he is at a 7 month level physically and gross motor wise, 4 months fine motor wise so that was a little disappointing but not surprising now.

He gets reassessed on Monday at the children's treatment center and w are hoping he gets off the wait list for early intervention services. Fingers crossed for him.

He surprised his docs before by just making it and then coming home a couple weeks early so I have no doubt he can do it again. I just don't want him to ever feel like he's disappointed me because even though his birth wasn't what I would have ever wanted for him he was very much wanted.

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Old 01-14-2013, 04:10 PM   #12
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Re: Need to decompress a little

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Originally Posted by momgoddesswife View Post
You got me crying.

THANK YOU I REALLY REALLY needed that more than you could know.

I'm just tired of fighting, tired of everything being a fight for him. I feel like we get excited because he is doing something new, like this weekend he JUST started to stand for a couple seconds at the ottoman when we stand him at it and then we get brought back to earth by therapists or doctors with not so great news.

The not so great news just makes me feel guilty even more and like it's all my fault that he has to go through all of this in the first place. Which I know isn't true but it's hard not to think like that when I am his mama.
No problem. I'm glad I could help. If you ever want some BTDT advice or someone to chat to who gets having CP & all the crap that comes with it you can reach out to me. I'll gladly listen & chat with you.
Keep your chin up & remember don't let his diagnosis define him.
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Old 01-15-2013, 09:34 AM   #13
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Re: Need to decompress a little

Well he had his reassessment yesterday and was picked up off the wait list by both the SLP and OT for Early Intervention.

I am so happy. The SLP confirmed he is only just at the 6 month level and the OT said he is around the same 6-7 month level physically.

The SLP also wants him to have a hearing test as she is concerned about his hearing and possible hearing loss. It's funny because he had a hearing test in the NICU and she said they should have suggested a follow up of it but I think it got lost in the shuffle when he was in the PICU for a month in the summer. So we will follow up on that.

All in all I'm just happy he is off the wait list and will be getting the services and that my husband and I will also get some tools to work with him since they will have courses available for us etc.
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Old 01-20-2013, 11:33 PM   #14
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Re: Need to decompress a little

To the OP: I have different SN kiddos than what you're dealing with, so I can only offer hugs and empathy for your frustration. SO!

And to luvsviola... I have never heard the Holland story before. When I hit '...and the pain of that will never ever, ever, ever go away...' I started crying (more like hysterical whimpering, I'm trying not to wake up my dh next to me in bed! LOL)... I needed that tonight. Thank you.
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