[tri-med] Re: [tri-med]Faren - sleepless nights and mosaicism question

Oh, Michelle.  I DO sympathize.  Many of the old timers on the list will
remember my ongoing sleepless nights. This went on for SIX years!  Then she
just started sleeping . . . she still wakes up rocking a couple of nights a
week and I lay with her to get back to sleep.  I found the best medicine was
to hold her tightly--if she'll allow it wrap her up in a blanket.   Also,
making sure she is full before bed helped.  I give her oatmeal or a
pediasure now 30 minutes before bedtime to make sure her tummy is full.

Also, in responce to another post on retesting Faren.  Unfortunately, a
mosaic diagnosis may get you a little farther with the medical community
although I didn't find that true until after she was four or five which may
have been more because of her age at that point.  But I did want to mention
that Soleah was thought/diagnosed as full trisomy 18 and retested (blood,
skin, urine) later on where they found some normal cells.  She is still a
very high percentage of trisomy cells (90% blood.)  My genetics doc of the
thought that any kid that lives past a month is mosaic in some way (maybe 1
percent normal cells that aren't picked up.)  I have never felt that to be
true or false--I'm just relaying that thought.  Soleah seemed very full
trisomy in most ways but that fact that she is almost eight and walks makes
her a bit ahead of the average full trisomy kid.  We also have benefited
from a very strong medical center and great therapists . . .

Nanci, Mom to Alicia (18 and in college now!), Shani (12 and my BIG
helper ), Soleah (Trisomy 18 m and almost 8!), Corey (the new baby in the
house--born 9/5/01) and Wife to Mike, my kind and loving husband!

This is the day that the Lord has made; I will rejoice and be glad in it.
Psalm 118:24

www.trisomyonline.org
----- Original Message -----
From: "Michelle Wilson" <mewildflower@xxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Tuesday, October 30, 2001 8:31 AM
Subject: [tri-med] Re: I'm a freak out/Faren is too


>
> <<My, oh my....don't remind me of the crying at 1a.m 2a.m 3a.m, etc!  One
> morning (I think it was 2a.m.) I screamed at Nicholas, "What is wrong
> with
> you????" >>
>
> oh phew(wiping the sweat off my forhead).  I knew I could count on you
> Jayne.  I sware I feel like I can be soooo mean to Faren.  But sometimes I
> just lose control.  I say bad things like "why don't you just shut up" or
> "I'm putting you up for adoption".  And the reason it makes me feel so bad
> is that we are so lucky to still have Faren with us.  But I guess because
> she seems so normal, I have to act normal(no feed back here please) too.
> But, after 3 lousy nights with Faren , she rewarded us with sleeping
through
> the night last night.
>
> Michelle Wilson, mother to Faren and wife to Rick
>
>
> >From: "Jayne Wright" <jmrite@xxxxxxxxxxx>
> >Reply-To: tri-med@xxxxxxxxxxxxx
> >To: tri-med@xxxxxxxxxxxxx
> >Subject: [tri-med] Re: I'm a freak out/Faren is too
> >Date: Tue, 30 Oct 2001 03:58:09 +0000
> >
> >
> ><<<It is
> >just that when Faren wakes up at 5 in the morning screaming and not
wanting
> >to eat and it drives me crazy I go nuts!!!!!   Anyone ever been there.>>>
> >
> >My, oh my....don't remind me of the crying at 1a.m 2a.m 3a.m, etc!  One
> >morning (I think it was 2a.m.) I screamed at Nicholas, "What is wrong
with
> >you????"  Mark said he heard me, but do you think he got up to help?  I
> >still don't know why Nick didn't/doesn't sleep, but now he doesn't cry at
> >night, he just wants to play.  I'm guessing gas, hungry, reflux, seizure
> >activity, overtired, etc. were some of Nick's problems.
> >
> >Jayne - mom to Nicholas - T13 - 6 years old
> >Hudson IL
> >
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> >
>
>
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