[blparent] Introduction.

Elizabeth Cooks elizabethcooks at comcast.net
Thu Mar 11 22:45:19 UTC 2010 

Lol.  Kids tend to do that to you.  It's a wonder i don't have gray hair 
yet.
----- Original Message ----- 
From: "Joy Wolf" <joy at kevinlwolf.net>
To: "'NFBnet Blind Parents Mailing List'" <blparent at nfbnet.org>
Sent: Thursday, March 11, 2010 6:33 AM
Subject: Re: [blparent] Introduction.


> 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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