[tri-med] Re: Sierra Update

Chris,

>Unfortunately, it is somewhat common for the docs to not agree on what they
>see.
This is very true and very irritating.  As if things aren't hard enough,
sometimes I feel more confused after talking to the doc than before I do.  I
am one of those people that has to go home and think about it for awhile
before I come up with my questions.  Kind of inconvenient.

>His initial thought was her brain was in better shape than he
>expected
Why did they suspect something to be going on?  I take it that Mari's CT
scan was done not to long ago?  It is always good to hear that things are
better than the docs expect.  I am happy for you.

>You might try to e-mail Dr. Carey
This may sound bad, but I don't know who Dr. Carey is.  Is he a leading doc
in this field?  I have heard other people talk about him before.

I did get some good news from the ped. doc today.  She ordered an abdominal
sono, a sedated hearing test, and an echocardiogram.  All this on top of the
MRI and EEG the neuro. ordered.  Since they will sedate Sierra for all of
these tests, the ped. doc ordered that a physician be present for the entire
sedation.  In case of an emergency there will be a doc on hand.  That eases
my worries a little.

I am glad that you are all in good health.  Luckily, we are to :o)
Nicole mom to Alyssa 4 (going on 21, keeping me busy, and keeping my hair
from getting to long because I'm pulling it out), Sierra 2 1/2 (partial
trisomy 18 q, my brightest ray of sunshine on a gloomy day), Kobey 1 (true
mama's boy through and through, climbing, pinching, and loving), and Joe my
wonderful husband of 8 yrs. (without his support I would be in the funny
farm by now!)
----- Original Message -----
From: "loganfamily" <loganfamily@xxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Tuesday, October 21, 2003 8:22 PM
Subject: [tri-med] Re: Sierra Update


> ----- Original Message -----
> From: "Nicole Jones" <jones@xxxxxxxx>
>
> Nicole,
>
> I was not offended at all.  It can be especially hurtful if you think that
> WE'RE not listening, because afterall.....we're going through or have been
> through those kind of days.  So please don't apologize.  I didn't want you
> to think we don't care.
>
> Unfortunately, it is somewhat common for the docs to not agree on what
they
> see.  So many different backgrounds, etc.. Also, most of our docs have
only
> seen one or two other living T18 kids.
>
> Mari brain underdevelopment was visible from her CT scan.  Her neurologist
> is still investigating the report (he hasn't seen the actual x-ray yet;
he's
> in Cincy.  The scan was done in Dayton) to understand the preliminary
> report.  His initial thought was her brain was in better shape than he
> expected.  For us, it was difficult to read about her development in black
&
> white.
>
> You might try to e-mail Dr. Carey and ask your question about changes in
the
> brain being "normal" Trisomy 18 symptoms.  He did confer with our
> cardiologist after heart cath..  I know that he can be slow to answer, but
> if you leave an urgent message he'll get right back with you.
>
> My trick on not sedating Mari was to keep her up late the night before!
> Part of my worry is not being able to sleep in case it's my last night
with
> her.  So we usually play until the wee hours!  I don't recommend it.
>
> Mari has her kidneys, liver, tummy checked about every six months.  I've
had
> to bring it up each time.  Our pediatrician hasn't been too proactive in
> this area.  We didn't know anything about the shape position until she had
> the CT scan.
>
> I agree, I am usually a sickeningly positive person.  Many of my friends
> think it's a delusion of some sort.......but I agree, we've got it pretty
> good.  Mari's still here.  She has a contagious smile.  She & the dog are
> the only ones who get so excited to see me!
>
> We are in good health right now, so I'm also thankful for that!  You're
> welcome for the ear lending;  I think that's why God gave us two!
>
> Blessings,
> Chris mama to Mari full T18 (2 yrs)
> Tipp City, OH
> http://photos.yahoo.com/MissTippCity
> http://home.earthlink.net/~loganfamily/index.html
>
>
>
>                   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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