Hi Deborah,
My name is Mandy and my son Dean has been wearing glasses and
hearing aides since he was approximately 4 months old. Dean also
did the birth to 3 program and then went to early intervention head
start. I believe it was Tony who recommended that we get Dean the
solo bambini's. They came from San Fransisco and we had the lenses
put in here in florida. They aren't all that attractive, but you
can literally run them over with a car and they will not break.
These can be found online. When you are purchasing glasses always
tell them you need the temple cables. These are the arms that wrap
around the ears and will help keep the glasses in place. With Dean,
the nosepads would smack into his eyes everytime the glasses moved
around on his face. As Dean has gotten older he can now
wear "regular" glasses with nose pads in them, I tweak them myself
(I know, I know, BIG No-No). I also learned that
when I buy him new
glasses to ALWAYS buy 2 pairs of frames!!! Frames are discontinued
so quickly these days and when the arms get broken they never have
frames that we can switch the lenses into. Everytime Dean got
frustrated he would rip the glasses off and throw them across the
room. As far as getting him to wear the glasses we just kept
putting them back on...it took probably like 6 months before he
would forget that they were on his face. Now days I have to fight
him to take them off to go to bed at night. I have finally given up
and just sneak in when he is asleep and put them up then. The
hearing aides took longer to get used to and I only let him wear
them to places like church and grandmas. The school district bought
him a set to wear while at school. I pay $1000 out of pocket for
these (each one) and can't afford to have them get wet or lost. I
hope this helps you a bit! And I would love
to see this group get a
bit more active.
Mandy
mommy to Mackenzie (age 9), Lil' Dean (age 6) Pierre-Robin and
marshall syndrome, and Shelby Lyn (age 2)
--- In
MarshallSyndrome@ yahoogroups. com, Deborah Hatfield
<debhat70@.. .> wrote:
>
> Dear Michel & Aaron:
>
> I am sure that I will need advice getting James to wear his
glasses. I know he will need them as he often brings things very
close to his face to look at them. He did pass his newborn
screening, but I believe he is hard of hearing.
>
> As far as his development, he seem to be ontrack for everything
except speech. He is now cruising around the furniture, but not
walking, and is actully a little ahead of where our daughter was at
this age. He was "army crawling" at ten months,
but didn't
crawl "regularly until 11 months. He is working with a Birth to 3
program and they have a speech therapist come out 2x a month to see
him. He is only making vowel sounds, even though he has an
obturator. His therapist says that he is so focused on his motor
skills that he isn't really focused on his speech, but it will come.
>
> James is currently in continuous motion and we cannot get him to
sit still, except very briefly. He is eating very well. Even when
he started wearing the obturator, it didn't interfere with his
eating. He has five teeth, two on top and three on the bottom. The
two on top are not the middle two(unless they came in very far
apart), and I am worried that he is missing some teeth, as children
with James' condition are sometimes missing the "second" teeth on
top which make the middle teeth come in very far
apart. He sees his
pediatric dentist on October 28th and she will take a small x-ray to
see if all the tooth buds are there.
>
> How did you get Lalo to wear glasses? And how do they fit? James
has a very flat nasal bridge and prominent eyes, and I just don't
see how glasses will work.
>
> Ddeb.
>
>
>
>
>
> --- On Wed, 9/24/08, aranda.michel <aranda.michel@ ...> wrote:
>
> From: aranda.michel <aranda.michel@ ...>
> Subject: [MarshallSyndrome] Re: (unknown)
> To:
MarshallSyndrome@ yahoogroups. com> Date: Wednesday, September 24, 2008, 1:09 AM
>
>
>
>
>
>
> Hey Deb,
> We live in Southern California, in San Pedro, south of L.A. it
> is cool
how close their birthdays are!
> Although he does not have a cleft palate, it does seem a little
> high, and Lalo's gums seemed thicker than normal. he didn't get
his
> first tooth until about ten months, and now has five.
> Lalo's features caught the attention of the doctors immediately
> at birth. Flatter nasal bridge, wider set eyes, short mandible,
and
> lower placed ears. So Chromosome and genetic tests were done right
> away. Both parents were also tested, but neither of us carry the
> gene! Lalo did not pass his initial newborn hearing screening, but
> returned a month later and passed. we continue to have his hearing
> tested regularly. It took a few tries, but an optomologist finally
> got a prescription, about a -20 vision, very nearsighted, but he
> really seems used to wearing his glasses. We cannot thank the
> founder of this group, (MacKenzie's
Dad!) for help with the
> frustrating task of getting his glasses to sit right, and stay on!
> Looking back its been a crazy year, lots of work but lots of fun
and
> love too.
> Do you mind us askin about James development as far as speech,
> crawling, etc.?
> Michel & Aaron
>
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