[tri-med] Re: Justin's button gina

we live in upper Mich., the other set of twins our a girl that we fine and a
boy that was trisomy 8 mosaic he only lived for a couple of months and did
have a g- button  .i think he never left the hospital gina son taylor
triosmoy 8 ----- Original Message -----
From: "Jason and Belinda" <JayandBel@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, December 15, 2004 9:43 PM
Subject: [tri-med] Re: Justin's button gina


we live in jacksonville north carolina. Where did you find the other sets of
twins. Justin's genetisist says that it is very rare but they are fraternal
and their genetic make up is the same as regular siblings.
Belinda mom to justin trisomy 8 mosaic
----- Original Message -----
From: "ginaanderson" <ghulce@xxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, December 15, 2004 10:02 PM
Subject: [tri-med] Re: Justin's button gina


> hi belinda i was wondering where you where. with throwing a fit taylor
does
> do them to. he does them when he  is tired and taylor and Rj do not get a
> long. as for the eyes taylor goes on Friday  to see his eye doctor eye has
a
> lazy eye that was truing in to so i brought it up and  the peds doctor
> didn't see it but i kept on him and finally did sent us to se a eye
> specialist in Mil Wis.. and he is very far sighted . we where wounding why
> you did give taylor something he would miss it when he grabbed it. and it
is
> common for triosmy children to have eye trouble too. i found out that
there
> our 2 sets of triosmy's out there that i've found with there one child is
> fine and the other child has triosmy 8 mosaic. Taylor's ped doctor found
> that to be rare gina son taylor triosmy 8 mosaic
> ----- Original Message -----
> From: "Jason and Belinda" <JayandBel@xxxxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent: Wednesday, December 15, 2004 5:43 PM
> Subject: [tri-med] Justin's button
>
>
>   Hi everyone! I hope everyone is having a good holiday season. I have
been
> reading all of the posts, but i have been so busy i haven't had time to
sit
> and write anything. It was such a hectic week last week. On Thursday,
Justin
> woke up and to my surprise, some time during the night, he had pulled his
> button out, and for all of you who knows about this, that was a big bad no
> no. Now he has pulled it out before but it has always been in front of me
> and i have been able to just put it in, get the new button and everything
> would be fine. This day was an exception. His hole had almost completely
> closed up. I couldn't get his new button in to save my life!!!  I had 3
> follie catheters here for back ups emergencies, and well, the first two
> couldn't go in either. I was a nervous wreck, and of course called my
> husband crying and freaked out putting myself through all the what if's
that
> there is. Then i remembered i had a tiny 2.7 mm folley in his apnea
monitor
> bag, and luckily, I got
>  that to go in. I called the doctor's office which is about an hour and a
> half away, and go figure, he is out for the whole month of december and he
> is the only pediatric surgeon that they have, not to mention there are
none
> here where i live. So they directed me to go to another town which is
about
> an hour away, to see the pediatric surgeon there. Luckily, after putting
> Justin through some tremendous pain, they got his button back in!! I'll
tell
> you all one thing. I have no clue what I will do when my husband goes to
> iraq. He is my rock. He came straight home, and knew to be calm and
> collective and calmed me down. He is the one that saved Justin when I was
> clueless and helpless just over a year ago!!! Everything is all good now
> with his button, except for a tiny bit of leakage, but they said that it
> would be expected for a bit of time.
>  Well, the following day, I had to drive for and hour and a half and get
him
> to be seeing what i was told to be a pediatrc opthamologist. His right eye
> has been turning in towards his nose. So we go through the whole torturous
> eye exam for her to tell me that the only reason my insurance company sent
> me to her was because she does see children, but with all of Justin's
> "problems" especially the agenisis of the corpus collosum, he needs to see
> an exact pediatric eye specialist. I was like, I thought that is what you
> are, and she says that yes she does see children, but they aren't her
> specialty. But she does think he is definitely having vision problems. Not
> only in his right eye for turning inwards, but in his left because he
> wouldn't follow anything with it and got very frustrated when she covered
> his right eye. I'm a little frustrated, but I just want what is best for
> Justin, and apparantly, it isn't her.
>   I just wonder sometimes, all of you seem to cope so well!! Justin on the
> most part does so well. He acts about like a 5 or 6 month old baby would.
> But then he has these moments, where his temper gets so bad, and i try to
do
> everything that i know to do, and it doesn't work, and i end up having to
> walk out of the room. I can't help him sometimes, and that makes me feel
so
> sorry for him that we can't understand what the other is trying to say or
> do. I envy all of you so much. Please if anyone has advice on the temper
> tantrum screaming coping skills, please let me have it. He is so
wonderful,
> I just don't know how to help him when he gets angry.
>   Thanks for listening,
> Belinda  mom to Justin t8 mosaic
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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