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Intro & hydrocephalus

AlwaysSunny925AlwaysSunny925 member
in Special Needs

Hello -

I just wanted to intro because I have a feeling I may be here a lot asking for support.  My twins were born on 9/25/11 at only 25 weeks.  We are still in NICU and going through probably everything that the NICU has to offer.  Ugh.

Our son Ryan had a reservoir placed a few weeks ago when he was diagnosed with hydrocephalus.  He is finally big enough where the neurosurgeons feel comfortable placing his shunt so his surgery will be next week.

We just found out this morning, that our other son, Aiden, has hydrocephalus as well. 

I guess I am just looking for anyone who has dealt with hydrocephalus.  I'd like to hear your story.  I know that the outcomes vary widely, and I am prepared to deal with whatever comes our way.  

TIA!

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Re: Intro & hydrocephalus

  • IsalupupIsalupup member
    First let me apologize for formatting I only have an iPad. My son has hydrocephalus. ?His hydrocephalus was caused by a bleed that occurred at birth ( he was full term) ?it was diagnosed later when his head circumference jumped. ?Our son has a vp shunt which is a common treatment for hydrocephalus.?? He is in early intervention for gross motor delays (these could be due to the intracranial pressure from the hydrocephalus or from the bleed). He is also recieving testing for possible hearing loss. ?He is really doing awesome. ?Your pictures of your sons are beautiful. ?Happy to answer any other questions.
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  • AlwaysSunny925AlwaysSunny925 member
    Thank you for your response.  Yes, one of my sons is actually getting a vp shunt on Monday and his brother will hopefully follow in a few weeks (he has to make weight).  We met with the surgeon today who really put us at ease.  I know that we have a long road ahead of us, but I am hopeful. 
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  • kar5162kar5162 member
    No experirnce with hydrophalus, but welcome.
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  • IsalupupIsalupup member
    How Is he doing? Did the surgery go well?
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  • AlwaysSunny925AlwaysSunny925 member
    Surgery is scheduled for Monday.  Other than needing the shunt, he is actually coming along quite well in the NICU.  Thank you for asking. 
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  • IsalupupIsalupup member
    Sorry I see that in your post, I was just thinking of you and didn't re-read. If you have time next week, post an update on how things went. I'm sure he will do great.
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