 Update 11-1-07
I am writing you with some wonderful news. My daughter Nicole delivered a
healthy baby boy 6 weeks early. He weighed 5lbs. and 11 ounces, 18 in. long.
Kayden Lee Lhamon, was born on Oct. 24 three days shy of his big sister
Alyssa's birthday. Alyssa would have been two years old on Oct. 27, she
passed away June 7, 2006 from complications due to her trisomy 13. She was
our little angel and will always hold a special place in our hearts.
Sincerely Lynn Minor
Grandma of Alyssa and Kayden
 |
 |
Peoria Illinois (IL)
My name is Nicole and my daughter's name is Alyssa.
she was born on October 27, 2005 in Peoria Illinois. When she was born
she was 3lbs 3oz and is now 5lbs 2oz. She was born with cleft lip and
palate, 6 digits on her hands and left foot, and small eyes that can't see.
She has not had any major complications besides she depends on a ventilator
to breathe.
|
Dear Mom and Dad,
I'm not gone I just fell asleep in the arms of God. He didn't give me to
you, he just lent me to you for awhile. I know you're hurting because I
could feel the pain in your heart as you held me close as I slowly drifted
away. I know there will always be a special place in your heart for me. As
the tears slowly run down your cheeks close your eyes and see how happy I
am. I can see the sun shine and feel its warmth upon my face, I can run and
play, oh what a beautiful place it is to be. It saddened me to say goodbye
after so short a time, but it was meant to be. Someday you will understand
why and see me as I was really meant to be. Please don't mourn my passing
but celebrate my life. My journey is over and I have been born again into a
new life. I'm a perfect rose in the garden of God. He chose me for my
beauty. I will always love you as I know you will always love me. I'll
always be close and you'll know I'm there in a way only you will know and
understand.
(Written by Alyssa's
great grandmother) |
Update: 5-10-06
Alyssa had her six month check-up with her pediatrician who had not seen her
yet. He said she is doing great, he was very pleased with her weight, she
weighs 12 pounds and is 24 inches long. She has come a long way since she
was born weighing 3.3 pounds and 16 inches long. She smiles a lot and her
smile will melt your heart she can even laugh. She does a lot of
vocalizing, she will let you know when she is mad, she turns purple when she
is really mad. Alyssa has done quite well since she came home from the
hospital, and Nicole does an awesome job taking care of her. I am very
proud of my daughter she has grown up so much since she had Alyssa. Alyssa
does have nurses 16 hours a day, so far that has gone pretty good Alyssa has
a couple favorites. She definitely recognizes peoples voices. It is quite a
challenge taking her to her appointments but Nicole is doing great. She has
to have help because there is so much to take along, with Alyssa being on a
ventilator. My granddaughter is a miracle and I thank God she has done so
well. I love my daughter Nicole and grand-daughter Alyssa more than words
can say.
Thanks Lynn (Grandma to Alyssa)
heart1961@yahoo.com
Update April 2006
Alyssa is finally home from the hospital, and she has adjusted wonderfully,
we were concerned it might be very difficult but it was not. It has been a
long five months waiting and wondering if she would ever get to come home,
but she is a very strong baby, and I think she will be with us for quite a
while.
Alyssa is doing AWESOME.
Lynn (Grandma)
Update March 2006
I just wanted to update you on how Alyssa has been. On Wednesday (March 15)
she had surgery to get her cleft lip repaired and to get her extra digits
removed. She did very well and she looks great. They did an awesome job from
what we can see.
Of course we can't actually see her lip right now because it
is bloody and it has a strip across her but we can tell it looks great. I
don't have any pictures ready to send yet but as soon as I do I will
definitely send them. Also there's more good news! She is scheduled to
finally come home with us on April 4!!! we are very excited and ready for
our little angel to be home with us.
Nicole
Update on Alyssa 2-22-06
I just wanted to update you on how things are going. Alyssa has finally been
moved downstairs to the ventilator dependant baby room. Not in the NICU
anymore. It was a very tough day for her. When she got down there she was
running heart rates in the 200's and it was scary because she never did that
before. We just thought it was from the transition but it kept being up all
day. Then they realized she had a temperature too so they ran a bunch of
tests on her and found out she has a staph infection. She's now on
antibiotics and they really seem to helping her. She's smiling again and
keeping her temp and heart rate down. So hopefully she's ok. The good part
of her moving down there is its only a matter of time before she is finally
home with us.
Update on Alyssa 1-19-06
Hi,
I just wanted to send you a picture of Alyssa now and tell you she is doing
GREAT!!! Also we will be starting training next week and be starting the
road home for Alyssa!! Just wanted to let you know. Nicole
Update: 1-7-06
These pictures were taken 3 days after her surgery. She is starting to wake
up more now and be more alert. She is also starting to eat out of her G-tube
and is doing well with it. Nicole
Update: 1-5-06
Yesterday (January 4) Alyssa had her surgery for her tracheostomy and her
G-tube. Everything went pretty well for her and she is back in the NICU on
lots of pain medicine and is stable. Nicole
 
|
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
