[tri-med] Fwd: Spina Bifida

this bounced
Begin forwarded message:

> From: Mimi Noonan <miminoonan@xxxxxxxxxxx>
> Date: January 29, 2004 3:07:19 PM CST
> To: tri-med@xxxxxxxxxxxxx
> Subject: Re: [tri-med] Spina Bifida
>
> Laurie,
>
> I grew up with a friend with Spina Bifida. He and I are the same age 
> and our parents were close friends.
>
> My understanding is that there is a huge amount of variation in the 
> degree of disability. But....John does pretty well. He is paretic 
> (weak but not paralyzed) in his legs, so does rely on a wheelchair. He 
> can use his arms to support himself to stand for brief periods if/when 
> he wants. He wears braces on his legs if he is going to stand and he 
> must have support. He has bowel and bladder control, but it is not 
> uncommon for him to have some difficulties there--constipation and the 
> like.
>
> John has had multiple surgeries, both reconstructive, corrective and 
> to treat skin conditions associated with his condition--ulcers on his 
> skin from immobility after surgeries. (He says surgery always leads to 
> more surgery.) He has had several shunt surgeries to help with poor 
> flow of cerebral spinal fluid, I understand this is quite common in 
> Spina bifida patients. Shunts are a pain in the rear and there are 
> often problems. I think there are other technologies available now 
> that were not available for John in the last 40 years.
>
> Socially, John is charming and handsome. He works as a bartender and 
> is loved by his regulars. He does live "with" his parents, in a large 
> apartment, but he is basically independent. They live in NYC and it 
> would be difficult for John to afford to live a comfortable existence 
> there without his parent's financial help. He knows he could move 
> out....there are issues there, I am sure. His parents are/were always 
> over protective and a tad indulgent.
>
> John and I were close when we were young--until about age 8 when we 
> moved from NY. At that time used crutches, the kind that wrapped 
> around your forearm. I remember very well when he got them. He wanted 
> to continue to be carried around and helped, and my sisters and I 
> wanted to try out the crutches (there were 4 of us). After we each had 
> a turn, he decided he was going to use them, and he was off and 
> running. He transitioned to a wheelchair in high school, after one of 
> his surgeries. I did not live in town, so it was not something I 
> talked to him about.
>
> John was a physically beautiful child, I had a huge crush on him. I 
> have lots of wonderful memories with him. He is a happy and engaging 
> adult.
>
> I don't know if this helps, but good luck.
>
> Mimi  (wife to Doug, Mommy to Reilly 8, Keegan 6, and Tierney T18 8 
> months)
> Chicago
>
>
> On Jan 29, 2004, at 2:33 PM, TRIER9@xxxxxxx wrote:
>
>> As most of you probably have read, we are in the process of 
>> foster/adoption.
>> Currently we are being considered for a baby/toddler with Spina 
>> Bifida.  Has
>> anyone ever experienced/know someone that has experienced this 
>> condition?
>> Also, if we need to get our home modified for a her wheel chair...how 
>> much really
>> needs to be done? I understand the ramps and was thinking possibly the
>> shower.  Any help would be greatly appreciated.
>> Thanks,
>> Laurie
>> Mom to Brianna, w/Trisomy 9p and Brandon and ????
>>
>>                   Building ___ooOOoo__ Rainbows
>>                        www.trisomyonline.org
>>                   Families Helping Families On-line
>>
>


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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