[tri-med] Re: Baby Claire - Neu/Aud appt update

I am going to include my message from this posting and the other one.  I was 
told initially that Logan was fine - trisomy 13.  I even asked if they were 
waiting for another test to confirm it.  They said no he was fine.  A week 
later they called me on the phone and said looks like the lab made a mistake 
and that he did have the trisomy 13 and they were going to retest him.  But I 
should start thinking about removing him from the respirator.  I am a single 
mom, was home alone when I got the phone call.  You don't even want to know 
what that weekend was like.  Many many times I considered having Logan retested 
because he doesn't have the major "trisomy 13" issues.  I had a genetic Dr tell 
me that it would not change the outcome on how I felt about him, how he would 
be treated at the new hospital so it really wasn't needed.  I agreed and 
thought to myself I don't want to know that he only had a few cells that are 
normal and the rest have the extra chromosome.  That is what I was told
 when they tested 20 blood cells only 6 came back normal.  Of course they were 
trying to convince me to do pallitive care or comfort care.  
 
You are right about one thing though I love him so much my heart breaks into a 
million pieces just thinking about losing him.  I love him the way he is and 
how he is making progress.  It is a tough road to travel but it is so worth it. 
 Welcome to the board and I love your website!  
Debbie <claire@xxxxxxxxxxxx> wrote:
BTW - Neu appt, fairly unproductive.
He said that we could come back in 2 months for an EEG...
I asked if he'd treated any other T18 babies... he said he hadn't seen any 
older that 6 months.
I got the feeling that he didn't think it was worth the effort and he 
'would' do it if we insisted...
On the other hand, my husband felt that the neu intended to do an EEG in 2 
months, just not now since she is having no (visible) seizures.
He also said Claire didn't have good 'muscle tone' . I immediately went on 
the defense and told him that she has rolled over and is very strong. I 
felt that he stereotyped her. My husband didn't feel that way at all.
Two very different people came out of the same office with two very 
different opinions of what went on in there... it is crazy. Looking 
forward to seeing the report... guess that will sum it all up for us.

** Has anyone heard of a dilated ventricle (in the brain).... it is 
something the drs saw in the prenatal u/s, but we haven't explored.

Thanks again everyone!

Debbie and Baby Claire
http://debbwebb.com/Claire/

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



Tina - mommy to Logan, 19 months (size of a 6 month old) t-13 mosaic, china the 
7 yr old fat black cat, and newly adopted Bambi - 3 yr taco bell 
doghttp://www.geocities.com/victorian17074/loganspage.html 
http://www.geocities.com/victorian17074/arbogastpage.html
http://photos.yahoo.com/victorian17074 
preemieparentssupport@xxxxxxxxxxxxxxx



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

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