[blparent] Introduction.

Thu Mar 11 04:18:26 UTC 2010

Hi,

There are actually 8 different kinds of OI, with type i being the most 
common, and types ii and iii being the most severe although symptoms can 
vary from person to person.  I only know this because  a few months back ai 
read a book about a little girl with oi called Handle with care, and i was 
interested and found this.

http://en.wikipedia.org/wiki/Osteogenesis_imperfecta

Tammy
----- Original Message ----- 
From: "Veronica Smith" <madison_tewe at spinn.net>
To: "'NFBnet Blind Parents Mailing List'" <blparent at nfbnet.org>
Sent: Wednesday, March 10, 2010 2:25 PM
Subject: Re: [blparent] Introduction.

> Sharon, and Brittle bone comes in 2 versions.  One they grow out of and 
> the
> other just gets worse and just sitting down will break the bones. Scarey! 
> V
>
> -----Original Message-----
> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
> Behalf Of sharon howerton
> Sent: Tuesday, March 09, 2010 5:54 AM
> To: NFBnet Blind Parents Mailing List
> Subject: Re: [blparent] Introduction.
>
> Joy, my son Kevin had a friend who had what sounds like the brittle bone
> disease Kayla has. This young man is now 24 and apparently grew out of it.
> But because of the fractures, if memory serves, his parents had problems
> with abuse investigations every time he went to the ER. You have your work
> cut out for you.
> Sharon
> ----- Original Message ----- 
> From: "Joy Wolf" <joy at kevinlwolf.net>
> To: "'NFBnet Blind Parents Mailing List'" <blparent at nfbnet.org>
> Sent: Monday, March 08, 2010 9:56 PM
> Subject: Re: [blparent] Introduction.
>
>
>> Hi:
>>
>> Ok, let's see, about my family.  Well, my daughter is 7 years old, and is
>> sighted.  However, she was born with Osteogenesis imperfecta, which most
>> people know of as brittle bone disease.  The short version of the long
>> story
>> is that it's much easier for her to break bones, and it can happen with
>> little or no trauma.  Kayla has had 7 fractures in her short life, mostly
>> leg bones.  Despite the occasional setback, she walks, runs, climbs, and
>> generally makes me scared half to death every single day, lol.  She is a
>> very bright, energetic child who is, well, just about as stubborn as the
>> day
>> is long, lol.  In fact, after only the first two days in pre-school her
>> teacher told me that she could see how "strong-willed" Kayla was.  I have
>> no
>> idea what we're in for when this child is a teenager, but I simply prefer
>> not to think about it.  She loves school, enjoys music, dancing,
>> computers,
>> oh, and fighting with her brother.  Jaden is my son, who is four, and he
>> is
>> also sighted.  Hhe is just about as opposite as he can be from his 
>> sister.
>> He is very laid back, doesn't let too much concern him, and doesn't
>> understand why his big sister worries so much about things.  He is
>> outgoing,
>> maybe a little too much, and will say anything anywhere, much to my
>> embarrassment on a regular basis.  He just started pre-school this year,
>> and
>> seems to like it, although when I ask him what he did today he always 
>> says
>> "I don't know any more".  Lol.
>>
>> As for activities, Kayla has taken ballet, and now really wants to take
>> piano lessons.  She was in Daisies, the girl scouts for younger kids, but
>> was attacked by a dog back in November, and had trouble even leaving the
>> house for a few months.  She has missed several meetings and has decided
>> to
>> just begin Brownies next year.  Jaden has had the opportunity to play
>> soccer, t-ball and indoor hockey, thanks to a really neat program we have
>> here that teaches young kids about different sports.  Both kids will be
>> taking swimming lessons next month, indoors of course, lol.
>>
>> Well, I need to run for now and feed cats and guinea pigs before I start
>> looking like dinner.  They all get very demanding if I haven't fed them 
>> by
>> this time of night.  Hope everyone is doing well.  Have a good evening.
>>
>> Joy and family
>>
>> -----Original Message-----
>> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
>> Behalf Of Veronica Smith
>> Sent: Monday, March 08, 2010 5:00 PM
>> To: 'NFBnet Blind Parents Mailing List'
>> Subject: Re: [blparent] Introduction.
>>
>> So tell me again, are your kids blind or sighted?  I know you said you
>> have
>> a 4year old, boy/girl? Tell us more about what they are doing at this 
>> age?
>> My daughter Gab (sighted)  is 10 and growing like a weed.  We measured 
>> her
>> this weekend and she is exactly 5 feet tall already.  She takes piano and
>> is
>> in girl scouts.
>> I am busy with her school, volunteering to give presentations on
>> blindness,
>> the secretary of the West Mesa Chapter of NFB and the auction chair for
>> our
>> state convention coming up in April. Help, I need a break. (lol) V
>>
>> -----Original Message-----
>> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
>> Behalf Of Joy Wolf
>> Sent: Monday, March 08, 2010 2:47 PM
>> To: 'NFBnet Blind Parents Mailing List'
>> Subject: Re: [blparent] Introduction.
>>
>> Hmmmm, not sure whether that's a good thing or not, lol.
>>
>> Joy and family
>>
>> -----Original Message-----
>> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
>> Behalf Of Veronica Smith
>> Sent: Monday, March 08, 2010 12:25 PM
>> To: 'NFBnet Blind Parents Mailing List'
>> Subject: Re: [blparent] Introduction.
>>
>> Joy, you are one popular woman. (lol) V
>>
>> -----Original Message-----
>> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
>> Behalf Of Joy Wolf
>> Sent: Monday, March 08, 2010 9:05 AM
>> To: 'NFBnet Blind Parents Mailing List'
>> Subject: Re: [blparent] Introduction.
>>
>> Lol, Sharon, yes I am.  I had just moved to the city and was absolutely
>> terrified.  Wow, that was a while ago.  I grew up in very small towns, 
>> and
>> so when my boyfriend, now husband, found a job in Chicago it was quite a
>> shock for me.  I remember sitting in that little apartment in tears
>> because
>> I just knew I wasn't going to be able to navigate the city, lol.  Little
>> did
>> I know how much I'd love the freedom of just being able to get around.
>> Now,
>> I live in the suburbs, but I'm still spoiled by some very good
>> transportation.  Anyway, just rambling, but it's good to find you here as
>> well.  Take care.
>>
>> Joy and family
>>
>> -----Original Message-----
>> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
>> Behalf Of sharon howerton
>> Sent: Monday, March 08, 2010 8:43 AM
>> To: NFBnet Blind Parents Mailing List
>> Subject: Re: [blparent] Introduction.
>>
>> Joy, I wondered if you were the same lady who was a client of mine years
>> ago. Nice to find you again!
>> Sharon
>> ----- Original Message ----- 
>> From: "Joy Wolf" <joy at kevinlwolf.net>
>> To: "'NFBnet Blind Parents Mailing List'" <blparent at nfbnet.org>
>> Sent: Sunday, March 07, 2010 7:40 PM
>> Subject: Re: [blparent] Introduction.
>>
>>
>>> Hi Elizabeth:
>>>
>>> That would be me, lol.  Wow, I had no idea that by joining this list I
>>> would
>>> find so many people I knew in my life.  I went to the Lyon's camps for
>>> many
>>> years, and met a lot of people, but never thought I'd run across them
>>> again.
>>> Funny how it can happen.  Glad to catch up with you again.  I hope your
>>> little ones are doing well.  You have your hands full with a
>>> 13-month-old.
>>> It seems like it goes by so so fast, and now my little guy is four! I
>>> can't
>>> believe it.  Anyway, take care and have a good week.
>>>
>>> Joy and family
>>>
>>> -----Original Message-----
>>> From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] 
>>> On
>>> Behalf Of Elizabeth Cooks
>>> Sent: Sunday, March 07, 2010 6:30 PM
>>> To: NFBnet Blind Parents Mailing List
>>> Subject: Re: [blparent] Introduction.
>>>
>>> Hi, Joy, my name is Elizabeth, and I grew up in Southern Illinois, but i
>>> have a lot of family in the Peoriaarea and therabouts.  I also asked
>>> because
>>>
>>> i remember a little girl I went to camp with named Joy Brigs.  It was
>>> Camp
>>> lions, Touch of Nature.  I have a daughter five, and a son thirteen
>>> months,
>>> and i now live in Utah.  My last name used to be Anderson.
>>> ----- Original Message ----- 
>>> From: "Joy Wolf" <joy at kevinlwolf.net>
>>> To: "'NFBnet Blind Parents Mailing List'" <blparent at nfbnet.org>
>>> Sent: Sunday, March 07, 2010 6:31 AM
>>> Subject: Re: [blparent] Introduction.
>>>
>>>
>>>> Wow Barbara! I thought I saw your name here just after I joined.  I am
>>>> so
>>>> so
>>>> glad to find you here.  When you get a chance, write me off list and 
>>>> let
>>>> me
>>>> know how things are going! Please, please, the update, lol.  To 
>>>> everyone
>>>> else, thanks so much for a wonderful welcome.  I can tell I'm going to
>>>> like
>>>> this list.  And for the person who asked, sorry I can't remember who it
>>>> was,
>>>> but I live in the Northwest suburbs of Chicago.  I have a lot of family
>>>> in
>>>> Peoria as well, which was where I mostly grew up.  I'll share my
>>>> experience
>>>> with a guide dog and young children in another post for the other
>>>> question,
>>>> but for now just wanted to thank you all for such a warm welcome.  Take
>>>> care.
>>>>
>>>> Joy and family
>>>>
>>>>
>>>>
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>>
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>>>
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