[blparent] Introduction.

Thu Mar 11 13:33:36 UTC 2010

Hi Tammy:

This is true, and they keep finding more and more types as the years go by.
Fortunately, the approval of Pamidronate, a medication which increases bone
density, has done wonders for the treatment of this condition.  Even some
children with type II, which was formerly considered to always be lethal,
are able to survive.  As an example, my husband had well over a hundred
fractures as a child, never walked, and had numerous surgeries to put rods
in to stabilize bones.  Kayla walks, runs, has only had seven fractures, and
has one rod in her upper right leg, which seems to be the bone that wants to
break most often.  It's a huge difference, and was actually a surprise to
us.  We just expected that she would be about like her Dad in severity.  The
only down side of this is that Kayla does not remember her last fracture,
and therefore is willing to do things that make my heart skip several beats,
lol.  Last night, she was telling me how she could do the splits now, and
when I tried to explain that this was the perfect recipe for a broken leg,
she said, but it doesn't hurt. I'm going to have no hair lifet by the time
this child grows up, lol.  Have a great day everyone.

Joy and family 

-----Original Message-----
From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
Behalf Of Tammy, Paul and Colyn
Sent: Wednesday, March 10, 2010 10:18 PM
To: NFBnet Blind Parents Mailing List
Subject: Re: [blparent] Introduction.

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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