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

<<I found the best medicine
was
to hold her tightly--if she'll allow it wrap her up in a blanket. >>

It doesn't help to hold Faren tightly, although she likes to be held.  She 
especially hates to be wrapped in a blanket.  She's the wanderer, hates to 
be confined.  Only patting works for her.  My poor arms.

Michelle Wilson, mother to Faren and wife to Rick



>From: Nanci Grimes <nancii@xxxxxxxxxx>
>Reply-To: tri-med@xxxxxxxxxxxxx
>To: tri-med@xxxxxxxxxxxxx
>Subject: [tri-med] Re: [tri-med]Faren - sleepless nights and mosaicism 
>question
>Date: Tue, 30 Oct 2001 09:04:12 -0600
>
>
>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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> > >
> > >                   Building ___ooOOoo__ Rainbows
> > >                        www.trisomyonline.org
> > >                   Families Helping Families On-line
> > >
> >
> >
> > _________________________________________________________________
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> >
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> >
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>


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