[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

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