[blparent] preg, ultrasound, etc. (all in one msg)

[Erin Rumer]

Yes, I'm from a family of 4 kids and I'm the only one with LCA.  However, I
do know of several people where some of their siblings and a parent has it
along with some other relatives outside of the immediate family.  It's funny
how genetics work.  It just all depends on what type of genes they are along
with who are carriers.  I'm a firm believer that everything happens for a
reason so it really doesn't matter if a child turns out to be blind or just
a carrier as long as they have all the love and support they need in life
just like all children need.

I was super touched the other day because Dawson and I were at our breast
feeding support group that we go to on Thursdays and a mom came in with her
16 month old son who has downs syndrome.  Dawson and this little boy began
to play right away and share toys.  The mom excitedly pulled her camera out
and said that Dawson was the very first baby to get the chance to play
one-on-one with her son because he's been recovering from multiple surgeries
for so long.  I was so honored that my son could be that little guy's first
play mate and it touched me even more to see how much in love this mom was
with her baby and he with her.  I wish all those parents out there that get
caught up with stupid stuff like hair color and comparing all their baby's
mile-stones with the babies around them could see what I saw the other day
and get a reality check on what's really important.

Erin

-----Original Message-----
From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
Behalf Of Deborah Kent Stein
Sent: Monday, August 15, 2011 11:56 AM
To: NFBnet Blind Parents Mailing List
Subject: Re: [blparent] preg, ultrasound, etc (all in one msg)



About LCA, my brother and I both have it and it hasn't turned up anywhere
else in the family.  It is an autosomal recessive condition, which means
that both parents have to be carriers and then there is a 1 in 4 chance that
a child will be affected.  To my knowledge there is still not a prenatal
test to detect whether a fetus will have the condition.  There are about a
dozen retinal conditions that are all called LCA, and the genes for several
of them have been identified.

Debbie

----- Original Message -----
From: "jan wright" <jan.wrightfamily5 at gmail.com>
To: "blparent" <blparent at nfbnet.org>
Sent: Monday, August 15, 2011 1:40 PM
Subject: Re: [blparent] preg, ultrasound, etc (all in one msg)


> Thanks to all who wished congrats. i am counting down weeks/days.
> Hi jill,
> Thanks and I had not heard of the name Hilmi. I'll ask my dh. i wonder
> if it is a nickname or full name.
> i like Samandar and Taj. But, DH does not.
> Yakub or Yaqub is not bad.
> We still have Zariyaan. (pronounced like Zahr- ee - on).
> Erin, It is quite strange because my DH and his sister both have LCA,
> but no one else in his family has ever had it. He has two other sibs
> that do not have it and a whole slew of cousins, etc.
> I guess that means that our child will be a carrier. Honestly, DH
> didn't know much about his disease. The doctors did not tell him much
> -- just tried to cure him; which obviously didn't happen. I don't
> think that he actually "knew the exact name of his eye disease until
> he saw doctors from the USA. But, i could be wrong. What i do know is
> that he knew very little about his eye disease.  I read that it was
> uncommon for a child to have it unless both people are carriers. i
> don't think that i am. But, honestly, i don't know much more about it
> and was reluctant to do the genetic counseling thing because; well, it
> already seemed like they were leaning to the "you might want to
> terminate," and i just didn't need that stress.
> Cravings:
> It is strange that you mention hard Boiled eggs:
> mine is Hard boiled eggs and ice cream right after.
> or peanutbutter and cream cheese sandwiches.
>
> V: from what i heard, the placenta doesn't move, right?
> so, the baby just has to move, right?   The placenta is between me and
> baby. i don't know, the tech didn't mention possible complications,
> but maybe she would leave that up to the doctor.????
>
> Carriers: the hard thing is that you can't try them for 1-2 hours to
> see if they are going to hurt your back. And, you will have to put a
> 10lb of sugar or something in the carrier to simulate a baby before
> buying.
> (smile)
>
> _______________________________________________
> blparent mailing list
> blparent at nfbnet.org
> http://www.nfbnet.org/mailman/listinfo/blparent_nfbnet.org
> To unsubscribe, change your list options or get your account info for 
> blparent:
>
http://www.nfbnet.org/mailman/options/blparent_nfbnet.org/dkent5817%40att.ne
t 


_______________________________________________
blparent mailing list
blparent at nfbnet.org
http://www.nfbnet.org/mailman/listinfo/blparent_nfbnet.org
To unsubscribe, change your list options or get your account info for
blparent:
http://www.nfbnet.org/mailman/options/blparent_nfbnet.org/erinrumer%40gmail.
com