[tri-med] Trisha & Esprit

Hi Trisha,

I would love to get together with you and Esprit some day.  I live 
very close to C'ville.  I grew up here (more or less).  Contact me 
if you are interested!

Rebecca, mom to Kashi (18) and Ruth (full t-13, 3/25/04), stepmom 
to Josh (33)



---------- Original Message ----------------------------------
From: Trisha Thompson-Willingham <trishaltw@xxxxxxxxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
Date:  Mon, 27 Sep 2004 13:01:19 -0400 (GMT-04:00)

>Hi Pam and Darrell
>
>Our daughter Esprit has full T18 and is 17 months old.  We rushed 
her home from the hospital at one week, because we were told her 
oxygen saturation was falling and she was going to die.  She did 
have some apnea episodes in the first month of life, but pulled 
herself through on her own.  Esprit has a severe heart defect...a 
large VSD, ASD and PDA.  When we met with the cardiologist to 
discuss operating we found out that her lungs had 
compensated....she has pulmonary hypertension and all is balanced, 
therefore operating made no sense for her.  Esprit is on no 
medications except for a mild laxative.  It is a whole lot 
different from the picture that was described to us by all in the 
medical field.  We were told she would never even recognize us.  I 
knew this was wrong immediately when I was able to pick her up.  I 
was her mom...there was no doubt she knew me by smell and even now 
when I pick her up she presses her nose to my cheek and takes me 
in.
>
>Esprit has eaten on her own since she was 3 months old.  She had 
breastmilk for a year and then we switched to formula.  She 
learned to hold her own bottle and feed herself.  She is now 
transitioning into solids and at this rate will be feeding herself 
by age 2.  Esprit has such personality and is pure joy to all that 
meet her.  Her smile lights up a room and she (although mostly 
deaf) communicates so much with her eyes.  She also uses sounds to 
let me know what she needs.  She knows when I put her in her high 
chair she is going to eat, and she stops complaining for food.  
She can prop sit quite well and she rolls from side to side.  She 
is tiny - at only 13 pounds - but soooo stubborn and tough.  She 
plays with rattles and giggles at her.  She even reaches for the 
birds and gently holds them in her hand.  She is making progress 
with her fine and gross motor skills to the point that I really 
don't know what to expect in the long run.  Signing?  Walking?
>
>Esprit is a very happy child who is developing at her own 
pace....her life is meaningful in so many ways. The truth about 
trisomy babies is they can and do develop if given a chance. 
>
>Please let me know if I can be of any more help.
>
>Sincerely,
>
>Trisha Willingham
>Charlottesville, VA 
>
>-----Original Message-----
>From: pam&darrell <bifman@xxxxxxxxxxxx>
>Sent: Sep 27, 2004 6:57 AM
>To: tri-med@xxxxxxxxxxxxx
>Subject: [tri-med] Re: heart surgery
>
>just email something to me-if you can't send a picture, just a 
note.  i will
>be giving stuff to doctors on wednesday
>pam
>----- Original Message ----- 
>From: <Kjehjohns@xxxxxxx>
>To: <tri-med@xxxxxxxxxxxxx>
>Sent: Monday, September 27, 2004 6:30 AM
>Subject: [tri-med] Re: heart surgery
>
>
>> In a message dated 9/27/2004 3:02:15 AM Eastern Daylight Time,
>> ecartis@xxxxxxxxxxxxx writes:
>> i would really appreciate it if anyone who is willing would 
send a photo
>and
>> a description of their child listing what they can do , how 
they function
>and
>> do have quality of life.
>> PAM:  Emily has T13 Mosaic and she had ASD, VSD and PDA 
repaired by open
>> heart surgery at 3 months old...weighing 4 lbs. and with 
congestive heart
>failure.
>>  She is now 8 years old and walking and talking and full of 
life!!  I
>would
>> be glad to help.  Just let me know who and where to send a pic 
and note??
>>
>> Jennifer - Mom to Emily (8) T13 Mosiac & Hannah (5) Michigan, 
USA
>>
>>
>>                   Building ___ooOOoo__ Rainbows
>>                        www.trisomyonline.org
>>                   Families Helping Families On-line
>>
>>
>
>
>                  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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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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