Hinman's Syndrome Parents - For moms and dads raising children who are coping with Hinman's Syndrome

For moms and dads raising children who are coping with Hinman's Syndrome

Hinman's, also called non-neurogenic, neurogenic bladder, is an unexplainable, incurable bladder condition.

Latest Activity

Michelle Vayansky replied to Stefani B.'s discussion 'Off-Topic'

Hi all! I had computer issues for a while, but I'm back! I hate using the internet on my phone! Well, we FINALLY found a doctor who agrees that something needs to be done BEFORE Cameron's kidneys get too bad. In June we are going to start…

Apr 10, 2010

Carrie replied to Stefani B.'s discussion 'Off-Topic'

I'm still here =) I have nothing new tom post really =( I hate the waiting always makes you feel worse,don't you think?? Hope everyone is ok =) take care Carrie

Apr 7, 2010

Stefani B. replied to Stefani B.'s discussion 'Off-Topic'

Hi!! Where has everyone gone? This forum was super-busy for a while and now it's trailed off. What's new? How were your holidays? Any news on the kidlet front? Stef

Apr 5, 2010

Cathy Craig replied to Stefani B.'s discussion 'It's Happening!!!'

Sorry to hear it didn't work as expected. Hopefully there will be a match soon. Cathy

Feb 26, 2010

Debbie Kale replied to Stefani B.'s discussion 'It's Happening!!!'

Oh no! So sorry to hear that. You must have needed to sleep for the entire next day, just to recover from the adrenaline rush! Debbie

Feb 23, 2010

Stefani B. replied to Stefani B.'s discussion 'It's Happening!!!'

Debbie, Everything was called off 10 minutes out of the O.R. They said it was a usable kidney....just not usable by Rory. :-( S

Feb 23, 2010

Debbie Kale replied to Stefani B.'s discussion 'It's Happening!!!'

wow! I hope all is well, Stefani. Please keep us posted. Debbie Kale

Feb 22, 2010

It's Happening!!!

We got the call at 9:30 last night. For some reason I thought that the doc was calling to re-schedule renal clinic, which had been cancelled on Tuesday. I was really confused about why a DOCTOR was doing scheduling so late at night and then he said.... "WE HAVE A POSSIBLE DONOR FOR YOU!!!" All of Rory's tests came back clear and the donor kidney is viable, so we're heading into surger in 45 minutes. Wish us luck!! See More

Discussion posted by Stefani B. Feb 19, 2010

4 Comments

Cathy Craig replied to Stefani B.'s discussion 'Knowledge Bank'

Glad you found a good buy. It is tough to not sleep the night through, my brain always feels like mush and it's such a challenge to focus and get things accomplished. We have Kaiser and they just sent me foleys, sterile water and syringes for…

Feb 18, 2010

Stefani B. replied to Stefani B.'s discussion 'Knowledge Bank'

Hi all! I was looking online two days ago and found a super-cheap (by our standards) supplier of foley catheters. Our insurance doesn't cover both Rory's "single-serve" straight catheters AND his overnight foleys...and even if…

Feb 18, 2010

Stefani B. replied to Stefani B.'s discussion 'SITE RULES (PLEASE READ)'

MEMBER UPDATE: Hi ladies, I've suspended Pamela from this network. This is a decision that I've been wrestling with for a while now. But input from other list participants plus her recent LONG rambling spam-like posting pushed me into a…

Feb 18, 2010

Stefani B. replied to Cathy Craig's discussion 'Constipation and function of the bladder'

Ah, I miss understood the cause and effect, LOL. Thought you were saying that a full bowel caused wetness, LOL. Stefani

Feb 18, 2010

Carrie replied to Cathy Craig's discussion 'Constipation and function of the bladder' Feb 10, 2010

Carrie replied to Cathy Craig's discussion 'Constipation and function of the bladder'

Hi, you ok?? I believe it was constipation that caused Logans bladder to mis behave =( Even with her MACE we struggle to keep her bowel empty which in turn makes her urine output so bad =( I have always been told that they both go hand in hand…

Feb 10, 2010

Cathy Craig replied to Cathy Craig's discussion 'Constipation and function of the bladder'

But how can a full bowel prevent him from urinating. If John is not having bowel movements, his diaper is dry. When his bowels get more empty, he has wet diapers.

Feb 9, 2010

Stefani B. replied to Cathy Craig's discussion 'Constipation and function of the bladder'

Cathy, When our kids have a super-full bowel, it puts pressure on the bladder and reduces the capacity of the bladder....which can cause overflow. (Imagine squeezing a plastic cup full of water) Stefani

Feb 9, 2010

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Off-Topic 8 Replies

This is the spot to share the parts of our lives that DON'T relate to or revolve around Hinmans.

Started by Stefani B.. Last reply by Michelle Vayansky Apr 10, 2010.

It's Happening!!! 4 Replies

Started by Stefani B.. Last reply by Cathy Craig Feb 26, 2010.

Knowledge Bank 6 Replies

Do you have questions? Answers? Ideas? Here's the spot to ask and share!

Started by Stefani B.. Last reply by Cathy Craig Feb 18, 2010.

SITE RULES (PLEASE READ) 3 Replies

Hi All, As the founder of this list, I think it's important to establish a few ground rules. Honestly, with 6 members, this list has already gotten bigger than I ever expected it to and I want to be…Continue

Started by Stefani B.. Last reply by Stefani B. Feb 18, 2010.