ok let's not start attacking each other you don't know my daughters medical
history. Araya only wears her glasses for school and layni never shows signs of
vision problems. I always do what's right for my girls And resent the thought
that I wouldn't and unless you are her doctor or parent you don't know what's
best for them.

--- On Fri, 4/17/09, Jennifer Oliver <jennifer.worley.oliver@...> wrote:


From: Jennifer Oliver <jennifer.worley.oliver@...>
Subject: Re: [Stickler Syndrome ] hELP!
To: sticklersyndrome@yahoogroups.com
Date: Friday, April 17, 2009, 1:40 PM








My son had his first laser eye surgery (to tack the retinas in place
since his gel in his eyes have already liquified) when he was just
turned 1 year old, had it again in February 2009, and is scheduled for
another one in July. Since Stickler's patients have a VERY high
probability of retina detachment and since he is so young and cant sit
through a retina exam, his Dr does a gas sedation on him at the eye
hospital in Birmingham to do a complete exam on him.
Ian started out at -12 at 6 months old and is now -18 (new Rx 3 months ago)..
We are in the Huntsville, ALabama area.

I am proactive about my son having glasses, my poor baby at 3 months
old when he started holding things, held them ALL THE WAY up to his
eyes in order to see anything.

He has had 3 pairs of glasses now, and this new RX, he hasnt even
SCRATCHED the lens he NEVER takes his glasses off unless hes sleepy
and is tired and ready for bed.
IMO, I wouldnt wait on getting my daughter glasses if she needs them in ANY way.

Ian hasnt gotten a hearing aid yet since his High Frequencies are
good, his speech levels arent though. So he is really delayed in his
speech, hence the speech therapy every 2 weeks.
I am trying to learn ASL to assist his speech development or at least
his communications.

Jennifer

Jennifer.Worley. Oliver@gmail. com

On Fri, Apr 17, 2009 at 8:29 AM, Jennifer Ahlman
<jenraylay@rocketmai l.com> wrote:
>
>
> my older daughter has alot of renal  problems do you know if that is common?
> My younger daughter will have to have more repairs for her cleft as she has
> alot of trouble with speech. They also say that my older may need knee
> replacements by 12. What kind of eye surgery has your son had? My girls so
> far are only mildly nearsighted Araya (older wears glasses) Layni doesn't
> yet but may need them in the fall when she starts pre-school.
>
> --- On Thu, 4/16/09, aprilflowers718@ yahoo.com <aprilflowers718@ yahoo.com>
> wrote:
>
> From: aprilflowers718@ yahoo.com <aprilflowers718@ yahoo.com>
> Subject: Re: [Stickler Syndrome ] hELP!
> To: sticklersyndrome@ yahoogroups. com
> Date: Thursday, April 16, 2009, 9:43 PM
>
> My son will be 3 in july. He had a very complex heart condition. He was just
> showing a lot of joint weakness not so much complaining of pain! His hearing
> loss is mild but he does wear hearing aids and has had a few eye surgeries
> and has to have his circumcision re done in may
> Sent from my BlackBerry Smartphone provided by Alltel
>
> -----Original Message-----
> From: Jennifer Ahlman <jenraylay@rocketma i l.com>
>
> Date: Thu, 16 Apr 2009 14:38:49
> To: <sticklersyndrome@ yahoogroups. com>
> Subject: Re: [Stickler Syndrome ] hELP!
>
> my older daughter had open heart surgery to repair a ASD and my little one
> had A cath lab to repair a PDA I have told they both god blessed them
> because they were born "holey" how old is your son? My girls don't have
> hnearing loss yet but I have heard it is common they both are seen by sveral
> doctors. does your son have alot of joint pain my seven almost 8 yr old has
> knee pain
>
> --- On Thu, 4/16/09, aprilflowers718@ yahoo.com <aprilflowers718@ yahoo.com>
> wrote:
>
> From: aprilflowers718@ yahoo.com <aprilflowers718@ yahoo.com>
> Subject: Re: [Stickler Syndrome ] hELP!
> To: sticklersyndrome@ yahoogroups. com
> Date: Thursday, April 16, 2009, 9:31 PM
>
> It is quite a process. My son has had open heart surgery as well as hearing
> loss and vision impairments and now am working on physical strength in the
> lower extremeties with braces on his feet
> Sent from my BlackBerry Smartphone provided by Alltel
>
> -----Original Message-----
> From: Jennifer Ahlman <jenraylay@rocketma i l.com>
>
> Date: Thu, 16 Apr 2009 14:27:56
> To: <sticklersyndrome@ yahoogroups. com>
> Subject: Re: [Stickler Syndrome ] hELP!
>
> Hello crystal,
> Both of my girls have sticklers ages 2 and 7 and I know what a shock all
> this can be. As for diagnosis they haven't found the right mutation in my
> girls genes yet so if the test comes back neg it dosn't mean he dosen't have
> it just that they have found the right mutation yet. My younger daughter was
> also born with a cleft palate and we had no idea anything was even wrong
> untill she was born. She didn't have any breathing problems though. Kids
> with cleft typically need ear tubes. My daughter is going through speech
> theapy right now and making some progress. Also have to watch later for eye
> issues both girls are nearsighted.
> I know this is alot to process. You have a baby thinks everything is perfect
> and your world gets turned upside down. I know you'll be able to pull
> through this just as I was.
>
> --- On Thu, 4/16/09, calientecrystal <calientecrystal@ yahoo.com> wrote:
>
> From: calientecrystal <calientecrystal@ yahoo.com>
> Subject: [Stickler Syndrome ] hELP!
> To: sticklersyndrome@ yahoogroups. com
> Date: Thursday, April 16, 2009, 5:26 PM
>
> hI MY NAME IS CRYSTAL AND MY SON IS 24 hOURS OLD AND HAS BEIN DIAGNOSED WITH
> STICKLERS, hE HAS A U SHAPED CLEFT PALLETE AND SMALL CHIN ETC. HE IS ON
> BREATHING TUBES, HAD TO TAKE OUT FEEDING TUBE DUE TO BLOOD IN THE STOMACH
> WHICH HAS STOPPED BUT THEY DONT KNOW WHAT HAS CAUSED IT. i;M A MESS AND
> WOULD LIKE TO TALK WITH SOMEONE OR PEOPLE THAT HAS BEEN THREW THIS AND CAN
> HELP ME GET THREW THIS TIME. ALSO ANY SUGGESTIOND ON HOW TO LAY HIM SO HIS
> AIRWAYS WILL OPEN UP BETTER WOULD BE GREAT!!
>
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>
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>
> [Non-text portions of this message have been removed]
>
> [Non-text portions of this message have been removed]
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> [Non-text portions of this message have been removed]
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>

--
Jennifer Oliver


















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