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

Thanks Tina... and everyone for your wonderful stories...
You guys are so supportive, and I'm sad each of you have gone through this, 
but I can tell you are all very special people and your children are more 
than just 'lucky' to have you... they are all truly blessed to have you!

Debbie
http://debbwebb.com/Claire/

At 07:01 PM 6/26/03 -0700, you wrote:
>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

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

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