[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

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