[tri-med] Re: Justin's button

Belinda,

Hang in there!  It may seem like everybody copes better, but you don't see 
the tears and tantrums over the computer!  As for tantrums and screaming, I 
asked Elanor's teacher for some ideas.  Elanor, Joe and Eric are all pretty 
even-tempered, but there are some kids at Elanor's center that have some 
pretty extreme behaviors.  She doesn't have e-mail right now, but she will 
jot some stuff down tomorrow, and I'll pass it on to you.  In the meantime, 
do your best, and we'll be praying for you!

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew
---- Original Message ----- 
From: "Jason and Belinda" <JayandBel@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, December 15, 2004 4:43 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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