tag:blogger.com,1999:blog-57019854336798990442024-03-05T14:31:58.133-08:00Living With Trisomy 13 New beginnings of HOPEStay up to date on the most current resources, information and support services for children with trisomy. Along with all the information we will also be posting JOURNEY'S of children living with rare diagnoses as well as sharing our own experiences of raising our children.Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-5701985433679899044.post-72893364205965991982014-03-02T07:44:00.000-08:002014-03-02T07:44:37.003-08:00Kristopher "KRITTERBUG"<div class="separator" style="clear: both; text-align: center;">
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<b>Kristopher "Kritterbug" ~ Full Trisomy 13 <span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"> </span></b></h3>
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<b><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;">12/13/2005 - </span><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;">05/19/2012</span></b></h3>
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<b><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;">My
son Kristopher was born with Full Trisomy 13 on 12/13/05. He was 6lbs
8oz. and had a cleft lip and palate. He had rocker bottom feet and a
little finger attached to his pinkie. He was in the NICU for 10 days
until we received his bloodwork back that identified him as having Full
Trisomy 13. We brought him home under the instruction to "Make him
comfortable at home". During the first year of Kritter's life, he was in
and out of the hospital a lot. We had his lip repaired at about 5
months of age. We had a peg tube in place for feeding as he could not
swallow anything due to the cleft palate. At his first birthday he
weighed around 12 lbs. When he was 13 months old, we moved from Fl to
Tx. We had a WONDERFUL pediatrician that set us up with every doctor
that we needed for him. We saw GI (didn't like them ), Pulmonology
(LOVED), Cardiology, Nutrition, and Nephrology. His GI dr advised he
didn't need to see him after a few visits so we found someone else much
later. Kritter had cortical blindness, he could only see out of his eyes
in certain spots. He was completely deaf. He loved being outside, he
would laugh and laugh and his eyes would get all crazy from the
sunlight! After </span></span></b></div>
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<b><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;">living in TX for just a few months, he began to gain
weight and filled out! He began OT, ST, and PT. We had his cleft palate
fixed and attempted oral stimulation but he never took it on. He
flourished in Texas, going as far as not being admitted to the hospital
for over a year! He did really well! He began to go to school, a PPCD
program at an elementary school and he got to ride the bus which he
loved! I got pregnant in 2009 with our first daughter Calleigh. I had
low amniotic fluid and was put on bedrest about 2 weeks before her due
date. The same day, Kritter stopped breathing. 7 times. The first time
was during therapy. I had to give him CPR. Thinking it was an isolated
event, I declined an ambulance ride to Children's. 30 minutes late, we
were on our way as he did it again and again. He was discharged a few
days later (it was from seizures). 2 days later it began again. He was
admitted again. The day before I had Calleigh and still on "bedrest" he
was discharged from the hospital. He also was at his heaviest weight,
42lbs! at the age of almost 5. He and Calleigh were so cute together! He
rolled over onto her several times and she did the same! I have video
of them "beating up" on each other. During the next year and half, he
began to decline and he lost a lot of what little strength he had. He
began to sleep a lot. On May 19th, the day after our 10th wedding
anniversary, he passed away in his sleep. He had a slight cold so I got
up with him in the middle of the night to give him a breathing
treatment. We snuggled in his bed. Then I went to bed. When my husband
got up a few hours later, he found him. It was very traumatic. We knew
in the back of our minds that we could lose him any day and we always
said when it was <div class="separator" style="clear: both; text-align: center;">
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time for God to call him home we would be ready, but
still, in your heart of hearts you never want your child to go. I found
out I was pregnant 3 days after he passed, then had a miscarriage a week
later. Last year on Sept 13th, I had another little girl we named
Gentry. She is very sweet like Kritterbug, very gentle and she smiles
ALL the time, like he did. Calleigh remembers him a lot. We talk about
him everyday. She thinks he paints the rainbows she sees. When ever she
sees one, she always calls to me and says, "Look what my Bubba did! He
paints the rainbows because they are beautiful and he wants me to see
them!" Very wise for a four year old! My advice to any new parent,
especially one with a Trisomy child? NEVER ever let a Dr. tell you your
child doesn't have a chance. Even if there is a small one, its still a
chance. Do I believe that God only gives you what you can handle? No, I
believe God is what gets you through it. Having Kristopher is something I
would do over again. I loved him. </span></span></b><br />
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<b><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;">Leigh Anne and Kyle </span></span></span></b></div>
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<b><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"><span style="font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"><span style="color: #666666; font-family: Helvetica Neue Regular, Helvetica, Arial; font-size: 14px;"><a href="mailto:lalaleigh13@gmail.com" target="_blank">lalaleigh13@gmail.com</a></span> </span></span></b></div>
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We hope these stories of children with trisomy will inspire you. From
cleft lips to contagious smiles, group of families are here to offer you
support as you begin your trisomy journey. It seems we only hear of the
problems that come with a child having Trisomy . There is so much more
to these sweet lives. Each day the living children bring joy to their
families as they accomplish simple tasks or reach a milestone, the
angels remind us that life is short but a blessing all the same and they
will forever be engraved in our hearts. Be sure to check back for our
next story or update and until then....Embrace life one moment at a time
~ Vanessa </h3>
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<a href="http://www.livingwithtrisomy13.org/living-miracles.html">BACK TO TREASURE MEMORIES PAGE</a></h3>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-63987478689193355632014-02-23T10:07:00.000-08:002014-02-23T10:07:57.739-08:00Kevin David Beck Jr.<div class="separator" style="clear: both; text-align: center;">
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<span class="Heading-C">Kevin David Beck Jr.</span><span class="Heading-C"> ~ Full Trisomy 13 ~ May 10th, 2012 </span></h3>
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<span class="Heading-C"></span><span style="font-weight: normal;"><span class="body-c">Our baby Kevin David Beck Jr had Full
Trisomy 13. He was born May 10th, 2012 and only lived about an hour and a
half. We are from Taylorsville Utah. I've attached a few pictures. Also
I blogged about our journey throughout the pregnancy which can be seen at </span><span class="body-c-c5"><a href="http://www.kevinbeckyfam.blogspot.com/"><span style="color: black;">http://www.kevinbeckyfam.blogspot.com/ </span></a></span><span class="body-c">. Our story begins in January of 2012. Our Baby Kevin was too perfect for this
life. He was such a blessing to our family and continues to bless us from
heaven.</span></span></div>
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<br />
<div class="wp-body-p">
<span style="font-weight: normal;"><span class="body-c">Becky Beck </span></span></div>
<h3>
</h3>
<h3>
We hope these stories of children with trisomy will inspire you. From
cleft lips to contagious smiles, group of families are here to offer you
support as you begin your trisomy journey. It seems we only hear of the
problems that come with a child having Trisomy . There is so much more
to these sweet lives. Each day the living children bring joy to their
families as they accomplish simple tasks or reach a milestone, the
angels remind us that life is short but a blessing all the same and they
will forever be engraved in our hearts. Be sure to check back for our
next story or update and until then....Embrace life one moment at a time
~ Vanessa </h3>
<h3>
<a href="http://www.livingwithtri13.org/trisomy-13-memory.htm">BACK TO TREASURE MEMORIES PAGE</a></h3>
<h3 class="Heading-P" style="text-align: left;">
</h3>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-90518153414994040922014-02-23T09:52:00.000-08:002014-02-23T09:52:23.547-08:00Adalyn May<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVXYvZY7jv55AeoMpfj39Aznm5tZX6Fw8zWCKJqXunQNUscKlQOg1pI-49nDtIY3QFFo4Y_b-Q2Q3yikDyZ4TBE0-5_D_oDUT9KWzINxuhoMx6GWUjPvBkNIMc8eTGFDRfs8ED4Xv9N-w/s1600/adalynmae.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVXYvZY7jv55AeoMpfj39Aznm5tZX6Fw8zWCKJqXunQNUscKlQOg1pI-49nDtIY3QFFo4Y_b-Q2Q3yikDyZ4TBE0-5_D_oDUT9KWzINxuhoMx6GWUjPvBkNIMc8eTGFDRfs8ED4Xv9N-w/s1600/adalynmae.jpg" /></a></div>
<h3>
<br /></h3>
<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C">Adalyn May</span><span class="Heading-C"> ~ Full Trisomy 13 ~ Born Sleeping September 18, 2012</span></h3>
<div class="Heading-P" style="text-align: left;">
<span class="Heading-C"></span><span class="Body-C">As any new parents would be, we were so excited to go to our 12 week ultrasound.
Everything was going so well until they brought in the doctor to explain some things.
We were told the baby had swelling behind the neck, which could mean a few things.
We said a few prayers, and were doing okay until we had an amniocentesis done at
our 18 week ultrasound. That dreaded call came when we were told that our sweet baby
girl had full trisomy 13. Everything spiraled downward from there, until we were
able to pick ourselves up off the ground a little while later.</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">We decided that our sweet little girl was going to have a big impact on this world,
and that we could touch others with her story. We started a blog and the remainder
of the pregnancy we enjoyed each and every </span></div>
<div class="separator" style="clear: both; text-align: center;">
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precious moment we were given with our
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<div class="wp-body-p">
<span class="body-c">On September 18, Adalyn May came into the
world. She had passed away a few days prior, so we knew what to expect the day
of. We took lots of pictures and cherished every moment with her. Her story
will forever live on, and she will forever be remembered and loved. We pray to
have siblings for her to watch over from heaven on day.</span></div>
<div class="wp-body-p">
<br /></div>
<div class="wp-body-p">
<span class="body-c">Follow Adalyn’s family on her blog </span><span class="body-c-c5"><a href="http://adalynmayourlittleangel.blogspot.com/"><span style="color: black;">http://adalynmayourlittleangel.blogspot.com/</span></a></span></div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7YhszffbIOhzJ5Nq34wyd09PhSuJpSWgn42pblei__DWA5EfurdGLTTUcEY3v8YpSsZah3xW6GpWlvrQfUhxsk6VioiDnQviWX7_ijd2IAzv_kxVovELGF-pQr5WbB7y9k3P7ZP3Uca8/s1600/adalyn2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7YhszffbIOhzJ5Nq34wyd09PhSuJpSWgn42pblei__DWA5EfurdGLTTUcEY3v8YpSsZah3xW6GpWlvrQfUhxsk6VioiDnQviWX7_ijd2IAzv_kxVovELGF-pQr5WbB7y9k3P7ZP3Uca8/s1600/adalyn2.jpg" height="320" width="179" /></a></div>
<div class="wp-body-p">
<br /></div>
<br />
<h3>
We hope these stories of children with trisomy will inspire you. From
cleft lips to contagious smiles, group of families are here to offer you
support as you begin your trisomy journey. It seems we only hear of the
problems that come with a child having Trisomy . There is so much more
to these sweet lives. Each day the living children bring joy to their
families as they accomplish simple tasks or reach a milestone, the
angels remind us that life is short but a blessing all the same and they
will forever be engraved in our hearts. Be sure to check back for our
next story or update and until then....Embrace life one moment at a time
~ Vanessa </h3>
<h3>
<a href="http://www.livingwithtri13.org/trisomy-13-memory.htm">BACK TO TREASURE MEMORIES PAGE</a></h3>
<div class="Wp-Body-P">
</div>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-21835739181202325092014-02-23T09:27:00.000-08:002014-02-23T09:27:32.845-08:00Shayla D. Steans<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EyqH0NLg9YySQ-GDEgv4OmuJoJOVT_tF2LHJDuWxqwU7oHXpgSfd096LtuuyW97px2F_WZ9Y8t1V2P6aBuUk6qIXLfE16itIzsVU88f546B6yJXRyhatPU5kH1vT3W2HbauqFg0aHTw/s1600/shayla3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EyqH0NLg9YySQ-GDEgv4OmuJoJOVT_tF2LHJDuWxqwU7oHXpgSfd096LtuuyW97px2F_WZ9Y8t1V2P6aBuUk6qIXLfE16itIzsVU88f546B6yJXRyhatPU5kH1vT3W2HbauqFg0aHTw/s1600/shayla3.jpg" height="240" width="320" /></a></div>
<br /><div style="text-align: center;">
<h3>
Shayla D. Steans ~ Full Trisomy 13 </h3>
<h3>
October 20, 1998 ~ January 16, 2011</h3>
</div>
<div class="Heading-P" style="text-align: left;">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C-C5">July 2013</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">The twelve years Shayla spent with us here on earth was truly a blessing. She deeply
touched the hearts and spirits of countless doctors, nurses, teachers, family members
and friends. She is missed, yet the love she brought us still remains. We saw the
best in her, when many of doctors could only see the disorder in her. We will see
her again....this is not the end! </span></div>
<div class="Wp-Body-P">
<span class="Body-C-C5"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C-C5">July 2010</span></div>
<div class="Wp-Body-P">
<span class="Body-C">Shayla was born Oct. 20, 1998 in Atlanta, GA. We were not given much hope from the
doctor's that she would live as long as she has. We were told that she may be stillborn
or pass away soon after birth, but God had a different plan and she is now 11 years
old! She has had multiple surgeries and now battles with aspiration pneumonia on
occasion, but what a joy and a blessing she is to our family and to everyone that
meets her. When I first heard the words to a song by Luther Barnes and the Red Budd
Choir-<wbr></wbr>I'm still holding on, I knew she was going to be o.k. The first verse of the
song says, "They said I wouldn't make it, they said I wouldn't be here today, they
said I would never amount to anything, but I'm glad to say that I'm on my way and
I'm growing more, and more each day". She proved them wrong and continues to do
so! Praise God for giving us such a special child and entrusting us with her care
here on earth until He is ready to call her home to live with Him with a perfect
glorified body in eternity. I'm glad I found</span></div>
<div class="Wp-Body-P">
<span class="Body-C">this site that celebrates children born with this disorder. There was nothing like
this or any kind of support when Shayla was born and in this forum many more people
will be able to witness what God can and will do!! Blessings! </span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">Roshelle Steans </span><span class="Body-C-C6"><a href="mailto:roshell1027@gmail.com" style="color: black; text-decoration: underline;">roshell1027@gmail.com</a></span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<br /></div>
<h3>
We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa </h3>
<h3>
<a href="http://www.livingwithtri13.org/trisomy-13-memory.htm">BACK TO TREASURE MEMORIES PAGE</a></h3>
<div class="Heading-P" style="text-align: left;">
<span class="Heading-C"> </span></div>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-60092021964477031212014-02-23T08:38:00.004-08:002014-02-23T08:50:44.438-08:00Jonathan Jamari<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgsnpJCBDifC6fAvG5B21_L94ZoWeL8ZLEATsyb9EIGNf9hB6eLrKxaSfGe1Ycm0Vj93Lg3uGVz604Gt-FS5_blEN8BAYWwF1EvFkqojEn2n1HKDt3R_nl2BWu28uWCkYm7YDPMq5h09U/s1600/jonathan2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgsnpJCBDifC6fAvG5B21_L94ZoWeL8ZLEATsyb9EIGNf9hB6eLrKxaSfGe1Ycm0Vj93Lg3uGVz604Gt-FS5_blEN8BAYWwF1EvFkqojEn2n1HKDt3R_nl2BWu28uWCkYm7YDPMq5h09U/s1600/jonathan2.jpg" height="240" width="320" /></a></div>
<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C">Jonathan Jamari</span><span class="Heading-C"> ~ Full Trisomy 13 ~ Born: April 6, 2010</span></h3>
<div class="Heading-P" style="text-align: left;">
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<div class="Wp-Body-P">
<span class="Body-C">My name is Jonathan Harrison and this is the story of my son Jonathan Jamari Harrison.
Jamari was diagnosed with Full Trisomy 13 during my wife’s fifth month of pregnancy.
Jamari is our second child so when we went to the doctor for the fifth month ultra
sound, we were extremely excited to find out the sex of the baby. However, we got
a lot more information than we expected. The ultrasound tech was doing a typical
ultrasound that included the measurement of a number of Jamari’s body parts and organs.
As we were moving along with the ultrasound, the tech told us that she noticed some
abnormalities in both the brain and heart and called in another tech to take a look
at these two areas. Any parent, who has had this happen to them, whether for better
or worse, knows that when the techs notice things and call in more techs it is a
very nerve racking experience. Your brain starts racing. You wonder what they may
be seeing, is it something major or minor, what the issue may be, or whether there
is an issue at all. You hope that the second tech will say something like “oh here
it is” or “you were doing it wrong.” That never happened with us. After the second
tech took a look with the ultrasound machine and a short deliberation between the
two techs, they told us that one of the OBGYN doctors would be there shortly to look
at the ultrasound images and to discuss what they are seeing, if they are seeing
anything at all. As me and my wife sat there waiting, pondering what was going on,
the techs attempted to reassure us saying the doctor will explain everything.</span></div>
<div class="Wp-Body-P">
<span class="Body-C">The first of the two doctors who saw us that day was the high risk OBGYN. He came
into the room and had the tech show him both the brain and heart. He told us the
baby had what appeared to be Dandy Walker Syndrome. Dandy Walker (a congenital brain
malformation involving the cerebellum and the fluid filled spaces around it) was
a new, unfamiliar term to both me and my wife and we didn’t know exactly what to
expect. He also thought the ultrasound indicated a possible heart problem and so
they paged the pediatric cardiologist. After taking a quick look, the cardiologist
agreed that there was an issue with the heart and wanted us to schedule an appointment
with his office at a later date. Based on these initial results, the high risk OBGYN
recommended an amniocentesis. It took us some time to consider the procedure but
I am one of those people that needs to know what is going on. I have always been
that way and after much consideration between me and my wife, we thought the risk
was low enough to proceed with the amniocentesis. Don’t get me wrong, it was not
an easy decision but we wanted to be prepared to help our child in any way possible
for any condition he may have. That night was very rough for the both of us. I
do not think we really considered there being an issue with the baby. We, like most
parents, assumed the baby would be healthy. But with the news from both doctors,
we did as most parents would probably do; we researched as much as we could on the
internet about Dandy Walker. When you get news like that, you are not really eager
to get on the phone and talk about it and a number of different emotions set in...panic,
fear, anxiety, and even a little hope that it’s not as bad as it seems. I think
I may have slept two hours at most that night and I know my wife had trouble sleeping
as well. You sit there and think about all the possibilities about what could happen
and how your life will change. We ended up doing the amniocentesis the next day,
which was a Wednesday but we were told the results were not expected until Monday.
Waiting for the results was horrible and having a whole weekend for random thoughts
to be running through our head would have been torture. Luckily, or not so luckily,
depending on how you view it, the OBGYN called us on Friday and told us we need to
come in to the hospital immediately to get the result, preferably both of us. Seriously,
how many times do you get good news when they say “come in immediately” and “preferably
both of you.” We did not know what to expect but we were expecting bad news. It
turns out the news was even worse than we expected.</span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">The next part was probably one of the worst parts of this whole ordeal. Not because
the doctor was about</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqqIgu7yjll7n3IF7yXqffd-Bq36LUiJXtFcOlmQEXsWZBsQyXPbudH_2JQKN8S3bh9AuXJYIDEOQ0WavQdDn7Q4fBjVkLAk9LbBDSdYkpCPN9MY7-tymqCpCANhUFCTzaZMjQ9lOdiIQ/s1600/jonathan3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqqIgu7yjll7n3IF7yXqffd-Bq36LUiJXtFcOlmQEXsWZBsQyXPbudH_2JQKN8S3bh9AuXJYIDEOQ0WavQdDn7Q4fBjVkLAk9LbBDSdYkpCPN9MY7-tymqCpCANhUFCTzaZMjQ9lOdiIQ/s1600/jonathan3.jpg" height="320" width="238" /></a></div>
to tell us that our baby had Trisomy 13 (we didn’t know what
that was at that point anyways) but because of his reaction, comments, and the way
it was portrayed to us. The high risk OBGYN told us that our baby had Trisomy 13
and he went on to explain what the condition was. He gave us statistics like “80%
don’t survive past the first week” and said the condition is “incompatible with life.”
He repeatedly said he was “sorry for the results.” He said that we have two options:
carry the baby to term if it survived that long or have an abortion. When discussing
carrying the baby to term, he frequently mentioned “palliative care.” For those
that don’t know, that is very broadly numbing the pain while the individual passes
away. We were both in shock and, initially, I thought nothing of his comments but
looking back I felt like he had written off our child already. He told us to consider
our options over the weekend and let him know our decision. I think we both could
have given our answer on the spot but because we were still suffering from the initial
shock we went home to discuss it. Now, speaking for myself, I am not completely
against abortion and other some circumstances I have no issues with it. Our situation
was one of the situations in which I had no issues with it; however, I never really
fully considered it. I thought about it briefly and whether or not I could live
with making that choice. The answer was “no.” We felt as though we needed to give
our child every opportunity possible to survive and thrive at life. That was our
job as his parents. I think it was only a couple hours after we received the news
that we decided we were going to go forward with the pregnancy. Once we made the
decision, it was like a huge weight had been lifted off my shoulders and I actually
felt good about the situation. From that point on, I was optimistic about the whole
pregnancy. I was still very timid, especially when we got good news. I wanted to
remain optimistic but not over confident. It was still a very scary situation. <br />
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">That Monday, we went back to see the high risk OBGYN about our decision. We confidently
told him that we wanted to move forward with the pregnancy. He told us we were brave
and that he respected our decision. His comments helped reinforce our decision to
move forward but I never considered us brave. We were just parents who wanted to
give our child every possibility. Conversely, after the praise, he went back to
talking about palliative care for the baby and how we could arrange it through the
hospital. We patiently listened to him discuss it but my wife and I agreed that
giving our child the best opportunity meant aggressive care. To us, aggressive care
was doing everything possible to keep our child alive. If your child had a heart
condition and a brain malformation without Trisomy 13, wouldn’t you still want the
doctors to do everything possible to save your child?</span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">The next few months went by with some uncertainty. We had a doctor’s appointment
almost every week between ultrasounds, OB appointments, cardiologist appointments,
and other random visits. The worst part was that we didn’t have one OB doctor. We
were at a training hospital, so almost every time, we had a different doctor. The
first visit to the OB after getting the news, the OB failed to read our file. The
doctor asked happily, “how is the baby doing?” We had to inform the doctor that
our baby had Trisomy 13 and the doctor subsequently called the high risk OB down
to talk to us. The regular OB had told the high risk OB that we did not understand
what Trisomy 13 was. To this day, we don’t know why she told the high risk OB that
we did not understand the condition but we think it was because we appeared optimistic
over the situation. Needless to say, it was a long five months until my wife had
the baby. We did get good news during the pregnancy, the baby was growing normal,
the fluid pockets on top of the Jamari’s brain were going away, and his heart condition
improved leading up to his birth. I have to say that our pediatric cardiologist
was the best and our favorite doctor throughout the ordeal. He was upfront, respected
our decision, and spoke to us in terms we could understand. </span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">A C-<wbr></wbr>section was scheduled for my wife and Jamari on 15 April; however, my wife’s
water broke on 06 April. We had prepared a birth plan for Jamari in advance, dictating
our desire for aggressive care and what we wanted to take place. One of the birth
plan conditions, in which we took from a birth plan on Livingwithrisomy13.org, stated</span><span class="Body-C-C6">
“Jamari is to be offered aggressive treatment. He is to be treated as a child without
a "fatal condition". Some babies with Full Trisomy 13 do survive. Please give Jamari
the opportunity to be one of them! "Do not treat him as a baby who is going to die
anyway".</span><span class="Body-C"> He is our child, and we want as much time with him as possible. Please respect
our decision and help us achieve these goals with our son.” </span></div>
<div class="Wp-Body-P">
<span class="Body-C">Jamari was born by C-<wbr></wbr>section on 06 April at 1415, he weighed 7lbs 1oz, and was 22
inches long. The NICU staff was on hand during the operation and was ready for Jamari’s
arrival. It took a lot of suctioning and what seemed like forever for Jamari to
let out his first cry after birth. It was a sigh of relief for both me and my wife.
As the NICU crew was doing their normal procedures, I began to visually scan my
baby for defects. Trisomy 13 babies are typically born with physical defects to
include cleft palate and I wanted to see if I could notice any defects. I saw none.
He was perfect and I was excited that our baby boy had arrived. (Despite me not
noticing, Jamari does have physical deformities). Jamari was the biggest baby in
the NICU. Jamari was born with a number of health issues to include Dandy Walker
(brain), Tetralogy of Fallot (Heart), and he currently requires his food through
a feeding tube. These are not all inclusive but some of the major ones. Our little
man, with the help of his very supportive big brother, is fighting hard. For me,
beating that one week statistic was a major goal. Although god-<wbr></wbr>willing we have a
long journey ahead of us, I felt a significant sigh of relief when Jamari made it
past the first week. My next goal is the one year mark. It doesn’t really mean
a whole lot because each individual is different but I think it helps me deal with
it better.</span></div>
<div class="Wp-Body-P">
<span class="Body-C">It’s the end of April and Jamari is doing well. He is finally gaining some weight
and taking a little more milk from the bottle than before. We love him very much
and although scheduling his appointments and keeping up with his medication is a
full time job, we don’t regret our decision in any way. One of the biggest issues
we have is dealing with the doctors. Some of them are great and they understand
what we are dealing with and how we feel. Most of them are not so great though.
They treat Jamari as learning tool and gawking at his deformities. They also treat
every issue as though it stems from his Trisomy 13 and it can be very frustrating
sometimes. I am typically a person who will bite my tongue in an attempt to prevent
altercations and to keep from offending people but I find myself increasingly confrontational
with the doctors.</span></div>
<div class="Wp-Body-P">
<span class="Body-C">(16 May 10) On 03 May Jamari went to the hospital for one of his scheduled appointments.
Prior to him going, we had noticed he was working a little harder than normal to
breathe and he had been relatively more fussy than usual. After his appointment,
he was taken to pediatrics to take a closer look at his breathing. He was admitted
to the hospital that day for what we found out later was a Urinary Tract Infection
and sepsis. Jamari was immediately started on antibiotics. It is now 16 May and
Jamari has been gradually improving every day until 15 May. On 15 May, his stats
(oxygen level, respiration, and heart rate) have been off. He had been completely
off oxygen around day three or four of his stay but, as of 15 May, he was back on
the nasal oxygen just to maintain his oxygen at the upper 80’s and lower 90’s. When
Jamari was first admitted to the hospital on this visit, I was initially shocked
and a little scared but felt better every day as his condition improved. I believe
I am more frightened now than I was when we first came to the hospital. At least
then, we knew what the problem was and why his stats were down. I am proud to be
his father and I enjoy every moment spent with my child, even if it has been mostly
in the hospital, but I am scared that these low stats may be the first indications
that my son is leaving us. We know the statistics and have briefly talked about
what could happen; however, I don’t think we have completely accepted it and we will
never be prepared for it to take place. The statement that one of the doctors said
to us just prior to taking Jamari home from the NICU continues to ring in my head,
“you have to understand that with Jamari, it’s not if, but when.” </span></div>
<div class="Wp-Body-P">
<span class="Body-C">Although true,
it’s not something I want to accept.</span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C"></span><span class="Body-C">(18 May 10) Something hasn’t sat right with me over the last couple of days and it’s
been stirring in my head until its has gotten to the point that I have become really
aggravated. It has to do with medical ethics. A couple of days ago during morning
rounds at the hospital, one of the doctors treating Jamari came into the room to
talk to me. In our discussion, the doctor told me that he had placed a consult for
Jamari to see Occupational Therapy because he routinely cocks his bed back when he
is lying down. He said that after discussing Jamari with the ethics committee, they
had decided to put a number of consults in for different specialists. Now at the
time, I did not really think anything of it. We had talked to Occupational Therapy
while we were in the NICU and had already had an outpatient appointment with them.
So a consult with them was nothing out of the ordinary. After thinking about his
statement, I have become fairly perturbed over the whole thing. To think, had he
not met with the ethics committee, he may have withheld treatment from my son. He
may in the future withhold treatment from my son or feel as though a procedure we
want is unethical. Our son is alive and despite the odds is doing fairly well. What
right does he have to choose whether or not a procedure or treatment is given to
Jamari. His statement alone has now made me question every doctor or nurse that
treats Jamari. I have now decided to ask every person up front “Do you have an ethical
issue in treating my child?” I did that all day today and although my doctor and
nurse both said they had no ethical issues in treating my child, there were definitely
indications that individuals at the hospital did in fact have an issue with it. I
guess from today on me and my wife will have to take it one question at a time with
each person to identify who is on Team Jamari and who is not. We have also decided
to develop a life plan. During his birth, we developed a birth plan to outline his
condition and are wishes for aggressive treatment. It seemed to be effective during
birth so we plan to develop one (that I will attach later) one for his life.</span>
</div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">(10 July 10) It’s been a long time since my last update. Jamari is doing fairly
well. He has had two separate surgeries (nissen fundoplication and gastric feeding
tube, and then a hernia surgery) since then and is recovering well. He has been
home for over a month now. It has taken some time to adjust to the feeding, carrying
oxygen everywhere, and all of the things entailed in his care but it is definitely
worth the time we get to spend with our child. Last week, his G-<wbr></wbr>tube popped out
at home for the first time ever. We had never seen it happen before and, although
we practiced once on a doll, we were not sure exactly what we were doing. My wife
put the tube back in, we filled it up with water and I took him to the ER because
we had never done it before and because it had not been 6 weeks since his surgery.
While in the ER, it popped out again and because the nurse did not know what to
do, I put it back in Jamari’s stomach. So up to that point, me and my wife have
successfully put his G-<wbr></wbr>tube back in with no previous experience and no help from
medical staff. When the pediatrician comes to see me, he tells me we are waiting
to for radiology to ensure it’s in the right spot. I told the doctor that maybe
we should put a new tube in because this one has popped out twice in the last hour
(seriously, who is the doctor here). He agreed and this is how the conversation
went from there: Dr.-<wbr></wbr> “Have you ever put one of these in before.” Me-<wbr></wbr> “About 15
minutes ago when it popped out in the other ER room.” Dr.-<wbr></wbr> “Ah, good! So you have
some experience. I have never done this before and would like to watch you put it
in.” Me-<wbr></wbr> “That was the first time ever for me and I am not sure I put it in right.”
Dr.-<wbr></wbr> “It looks like you did a great job.” There is not much else I can say about
that situation. </span></div>
<div class="Wp-Body-P">
<span class="Body-C">(05 Oct 10) It has been a long time since our last update. I think for the most
part, we are just enjoying Jamari being at home. Although both Jamari and his brother,
Jaiden, keep us extremely busy (as most kids do), we really enjoy watching him develop.
He has been doing really well at home, and he continues to grow and get bigger.
He still feeds through his G-<wbr></wbr>tube but we have also been feeding him peas, bananas,
prunes, and carrots through both his G-<wbr></wbr>tube and by mouth occasionally. He really
enjoys eating but we try to limit his food by mouth for fear of aspiration. We had
the first modified barium swallow test done to see if he was aspirating. At first,
the speech therapist told us he did not appear to be aspirating but they wanted to
take a closer look at the study. After the closer look, the speech therapist believes
that he may in fact be aspirating. It took us three months to get the first test
scheduled and now they want us to do another one to reconfirm the results. It can
be very frustrating at times but we definitely do not want Jamari to catch pneumonia.
As far as his development goes, he appears to have become more responsive to our
voices. He responds mainly to my wife’s voice; however, when he hears his older
brother, it’s as though he gets really excited and starts moving his head around
to try and locate Jaiden in the room. He still cannot hold his head up for long
periods of time and he is not able to sit up on his own but we are very hopeful.
He does smile sometimes but most of the time it is while he is sleeping. My wife
also says he laughs in his sleep but unfortunately I have yet to see or hear it.
We always say that he is playing with his Granny (her mom) and Papa (my dad) in
his sleep. Although his development is behind that of kids his age, we are very
pleased with how he is progressing. He loves to be held, especially when we hold
him up to where he can walk with our assistance. Jamari is a happy baby for the
most part and a lot of times he only cries because he wants one of us to pick him
up and talk to him. It’s great until he does it at three o’clock in the morning while
everyone is trying to sleep. Thankfully, we finally got approved for respite care
and, as of about three weeks ago, we have a night nurse that comes 5 days a week,
8 hours a night to watch Jamari while we sleep. It is really awkward having someone
in your home while you sleep but overall it has been a great help. I think right
now, our biggest medical concern for him is his heart. He has Tetralogy of Fallot
and, although the severe case in which we were expecting during the pregnancy ended
up being a mild case, it is still something that needs to be fixed. Our pediatrician
told us that it is a decision we will have to make sometime in the not too distant
future. There is a fine line between Jamari being healthy enough to undergo the
surgery while at the same time getting it taken care of before his condition starts
getting worse. I think that is going to be a rough decision for us. We both know
it is a decision we will have to make but we really don’t discuss it unless we have
too. Whatever our decision, I know we have to make it together if we are going to
get through it. So until that time comes, we will hope for and do what is the best.
For the most part, we are at the mercy of our doctor’s recommendation. We are also
fortunate enough to know a surgeon (we met with him personally during my wife’s pregnancy)
who has a lot of experience with T-<wbr></wbr>18 heart surgeries and would be willing to do
Jamari’s heart surgery. I would think that it would not be that hard to find a doctor
willing to do a necessary surgery to save your child’s life but apparently once they
have been labeled as a Trisomy child, opportunities disappear. I know I personally
called a number of pediatric cardiologists to see if they were willing to do the
surgery during my wife’s pregnancy. Not one said yes. Some didn’t call back but
most told me it would be hard to find a heart surgeon willing to do the surgery.
Luckily we ended up with a great cardiologist who put us in contact with the heart
surgeon. As far as my personal life, I am really honored and privileged to have
the wife and son that I have. Jaiden could be in the running for the “Proudest
Brother Alive” award if it existed. He loves his brother very much and, although
he doesn’t understand all of the medical issues going on with Jamari, he is so happy
to play with him at any opportunity he gets. Jaiden is always telling us what we
did wrong or reminding us to make sure his brother gets his food or medicine. He
also gets really excited whenever Jamari does something for the first time or does
something he doesn’t do often. Jamari has a hard time opening both of his eyes (he
typically only opens the left one) and every time he opens both of them, Jaiden gets
so excited and makes sure that both me and my wife know that his eyes are open. I
love him so much. My wife is also amazing. She bears the brunt of the work with
Jamari. I tell her all the time that it is a full time job scheduling his appointments,
doing his paperwork, dealing with his nurse, and taking care of him. She does all
of this while at the same time attending college online. She also gets the least
amount of sleep out of the two of us. I believe she has been and will continue to
be extremely vital in Jamari’s development. Since she was pregnant, she has talked
to Jamari everyday and continues to do it to this day. I hope she knows that I really
appreciate what she does for our family and don’t tell her I said this but “I love
her a lot too.” </span></div>
<div class="Wp-Body-P">
<span class="Body-C"> </span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">(Dec 2011) Jamari (FT13) had his fourth surgery in 18 months. The doctor attempted
to save his vision by removing the cataract from his left eye which they believed
would go away from lack of use. Unfortunately, the ophthalmologist said that there
is a stalk (artery) in his eye that is blocking at least part of his vision. It is
supposed to slowly dissipate after birth but his is still there and because it is
a live artery, it just bleeds if you attempt to do anything with it. His other eye
is too small for the cataract machine and therefore they did not attempt to remove
the cataract. The surgery did not help his vision, in fact, it made it worse and
we believe he is unable to see anything out of that eye anymore. Now, Jamari will
use his fingers to open the eyelids of his small eye so that he can see. Other than
light, we are not sure exactly what he is able to see but the ophthalmologist has
listed him as legally blind. Jamari also received Botox in his saliva glands because
he drools and spits too much and it is causing his face to break out. Additionally,
they did a CAT scan to check his ear bones and canal because his ear is causing him
pain. The surgery went well but two days after we brought him home, he started getting
sick. His condition was very similar to this past July when he was admitted to the
hospital for pneumonia. They took a chest xray and alot of his airways were plugged
with mucus. Because he wasn’t in respiratory distress, they allowed us to keep him
at home on oxygen. He is doing much better now and we are grateful.</span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">(4 July 2012) So, I just wanted to update everyone on the status of Jamari. He was
admitted to the hospital on the 4th of July for continuous vomiting, which looked
like bile by the time we arrived at the hospital, and </span></div>
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intense pain from what appeared
to be cramping. They did an x-<wbr></wbr>ray and saw what looked like an obstructed bowel.
They decided to wait overnight to see if the bowel would fix on its own. However,
that night, Jamari developed a temperature of 102 forcing them to do exploratory
laparoscopic surgery to see what was going. Luckily, there was no obstructed bowel.
It turns out Jamari’s colon is not aligned the same as in most people (who would
of thought, lol). They ended up giving him an appendicostomy, thinking that would
help move things along with his bowel. They did not notice any other issues or any
necrosis during the surgery. After the surgery, they put him on an IV and TPN fluids,
and we sat and waited for him to pass gas or have a bowel movement. After a couple
of days, Jamari had not had a bowel movement and his lipase levels in his pancreas
began to skyrocket day by day. They did multiple x-<wbr></wbr>rays and an ultrasound and found
out that Jamari had developed pancreatitis. We were told that normal lipase levels
are between 27-<wbr></wbr>300 while Jamari’s were hanging around 2500 and actually reached 3900
at one point. He also had what the doctors called “sludge” in his pancreas. We
were told this is indicative of issues with the gall bladder and at the point they
believed that the gall bladder was atleast part of what was causing the pancreatitis.
They wanted to take out his gall bladder but his lipase levels continued to rise
forcing us to postpone the surgery twice. They also took him off of the TPN thinking
the fats and proteins in it were causing his elevated lipase. It did not help and
his levels continued to rise. After doing some research on our own, we found out
that cystic fibrosis also causes pancreatitis. We suggested that although kids with
Trisomy 13 typically give a false positive for cystic fibrosis, Jamari’s respiratory
issues may be an indication he actually has cystic fibrosis and could be causing
the pancreatitis. They agreed that this could potentially be what was causing the
pancreatitis. A couple of days after coming off of the TPN, the doctors decided
to get some fluids in Jamari’s stomach and put him on a continuous feeding of 10ml
an hour of Pedialyte. That helped and over a couple of days his lipase levels began
to lower. <br />
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">(16 JUL 12)They attempted to do the gall bladder surgery again today but it was cancelled
because of room availability issues. Jamari’s lipase levels are currently around
2300 and trending downward. They are now also saying that Jamari has a variant of
cystic fibrosis and it is not what is causing the pancreatitis. As of right now,
the plan for the week is to conduct an MRCP, which is a fancy MRI that shows a good
image of the biliary tract and pancreatic ducts. Apparently, the surgery team has
been asking to do this for a week or so now but the pediatric team did not want to
do it because it requires sedation. We were oblivious to that whole decision. I
am kind of perturbed in the reasoning behind the pediatric team’s decision to do
the MRCP. Apparently, autopsies of children with T13 show that they typically have
abnormal pancreatic ducts. I politely asked them what their studies of living children
with T13 showed. They had no answer or response for that question. After the MRCP,
we are planning on having the gall bladder surgery by the end of the week. The reason
we are still going ahead with the gall bladder surgery is because the way it was
explained to us is that gall bladder caused the sludge in the pancreas. If it is
not removed now, the gall bladder could cause the pancreatitis to return and if it
does, the pancreatitis will be much worse. That is kind of where we stand right
now. </span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C"> (20 Jul 2012) On Friday, Jamari had surgery to remove his gall bladder. The surgery
went much longer than they expected but there were no issues and they brought him
to the PICU to recover. The doctors have stated, and we agree, that they want Jamari
to always recover in the PICU regardless of the surgery and regardless of whether
he is able to go to the peds ward. The first day went well. His lipase went down
to around 900 and they started him on Pedialyte. Later that evening, they switched
from Pedialyte to something called Breeze based on the dietician’s recommendation.
They got up to about 20 mL an hour (continuous feeds) before his condition turned
around Saturday (21JUL) morning. He started spiking temperatures around 101.5, the
Breeze was going right through him and coming out essentially the same way it went
in, his lipase was back at 2200, his white blood cell count was low, and his heart
rate was hitting over 160 at times. His heart rate and oxygen are always a concern
with his Tetralogy. In an attempt to counter the recent changes, they took out his
central line (which was in too long anyways, two weeks is max and we took it out
just over two weeks) and put in an IV and then they took him off the antibiotics.
The thought is that either the central line was causing an infection which lowered
his white count or the antibiotics were causing it. I was confused at first because
I thought infections raised white blood cell counts but I was told that certain infections
or bad infections can take over and cause the count to decrease. That is very concerning
to us. </span></div>
<div class="Wp-Body-P">
<span class="Body-C">They also mixed the Breeze with his normal milk, Elecare, to see if that
would thicken it up. I think we have a very good team of doctors. We are fortunate
enough to be at a military hospital where our pediatrician and specialists are in
the hospital and all the clinics are located in the same place. I was due to transfer
a year ago but we decided to stay another three years here in Hawaii based on the
medical care and doctors alone. We weeded out the doctors that aren’t on what we
call “Team Jamari” a long time ago. Jamari’s pediatrician is also one the senior
ranking and most experienced doctors in the hospital, which has been very beneficial
to us. The hospital is also a training hospital and, although we do not want the
new doctors operating on Jamari, we do find that it is an opportunity to educate
the young doctors. And in the end, if we have an issue, our pediatrician will help
us make things happen if we need him too. Also, the Infectious Disease Dr. showed
up the second day in the hospital. He said he was following the case and as long
as we didn’t see him, things were going well. We haven’t seen him again and I have
assumed things were well from his aspect. </span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">(04 Feb 2013) Jamari turns three this April and will start school. Its kinda nerve
racking but we have been working with the schools and our doctors to get everything
in place. Also, we have tentatively scheduled his heart surgery for June to correct
his Tetralogy. We have to get a CATSCAN under sedation followed by a meeting with
the heart surgeon in April. The heart surgeon is out of San Diego and travels to
Hawaii every three months do perform surgery. If everything goes well, the surgery
should be the first week of June. Jamari has had a number of surgeries in his life
but this is by far the scariest. Not sure I really want to do it but I know he has
to have it. I’ll keep you guys updated as we go through the process. </span><span class="Body-C-C6">The doctor
in San Diego who is willing to do heart surgery on T13 babies is: Dr. John Lamberti
at the University of California, San Diego. The number there is (858) 966-<wbr></wbr>8030. </span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">(06 April 2013) Jamari turned three today. This is something I posted for his birthday:
</span><span class="Body-C-C7">“They told us he probably wouldn’t make it to term and that we should consider aborting.
He was born a few months later. They said he is not expected to survive past the
first week and that we should focus our efforts with the hospice providers. He came
home the next week with a tube in his nose and a lot of medicine. They said babies
with his condition statistically don’t live past a year and that we should make arrangements.
He tasted icing for the first time on his one year birthday. They said because he
is predominately blind and deaf that his communication would be limited at best.
He laughs when he’s happy, shakes his head when he disapproves, and cries when he’s
in pain. They said he would never walk. Since he turned two he’s been using a specialized
walker to get up and down our floors. They said they can no longer assess future
impediments to his growth and development and that he would go at his own pace. He
stole their hearts. HAPPY THIRD BIRTHDAY JAMARI!</span><span class="Body-C">”</span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C">(04 June 2013) Jamari is scheduled for heart surgery on 17 June to correct his Tetralogy
of Fallot. This is probably the scariest thing I have encountered in my life. I
almost fell off a mountain while riding an elephant (I thought the elephant was going
to roll us), I have been inside a cage with four tigers, and I have been deployed
to Iraq but this is by far the most petrifying thing I have ever dealt with. I
do not know how I would be able to function without my little guy. My wife tells
me that I have to think positive and only have good thoughts. I try my best not
to think negatively but every so often those thoughts creep in my head. I like to
be prepared for everything as much as possible but I definitely have difficulties
with this because it is out of my hands. Until you have a special needs kid, I don’t
think you really understand what a blessing they are. Most people just see the long
hours, the constant and tedious care it requires, and how it drastically changes
your life. I don’t think they see the great things about it. With most “normal”
kids, we find ourselves as parents doing our best to teach them the things they need
to know in life to survive. We teach them to be strong and stand up for themselves.
We try to teach them patience in this new “I want everything now” society. We also
try to teach them about how to be hard workers and how that is the way you overcome
obstacles in life. Trisomy kids are the opposite, they teach us everything. They
teach us to be strong by making tough decisions, going against unsupportive doctors,
and dealing with the most adverse medical situations (remember the first time the
G-<wbr></wbr>tube popped out and you were alone). They teach us patience as they go through
life at their pace when they are ready. Charts, graphs and words like “normal” or
“average” do not apply. They teach us what hard work really is. I used to think
it was just working twelve hour days and not getting a chance to eat all day. That
was hard work and still is for most people. My son is only three and has undergone
atleast six surgeries (I lose count sometimes); that is hard work. The doctors were
not sure he would be able to sit up on his own but through physical therapy, Jamari
can sit up on his own; that was hard work. I now know what hard work really is and
Jamari does most of the inspiring and teaching in this house.</span></div>
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<h4>
<span style="color: red;">We hope these stories of children with
trisomy will inspire you. From cleft lips to contagious smiles, group of
families are here to offer you support as you begin your trisomy
journey. It seems we only hear of the problems that come with a child
having Trisomy . There is so much more to these sweet lives. Each day
the living children bring joy to their families as they accomplish
simple tasks or reach a milestone, the angels remind us that life is
short but a blessing all the same and they will forever be engraved in
our hearts. Be sure to check back for our next story or update and until
then....Embrace life one moment at a time ~ Vanessa </span><br /> <br /> <a href="http://www.livingwithtri13.org/trisomy-13.htm">BACK TO LIVING MIRACLES PAGE</a></h4>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-16196480914547895382014-02-23T08:29:00.001-08:002014-02-23T08:29:48.787-08:00Nora<br />
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<span class="Heading-C">Nora</span><span class="Heading-C"> ~ Full Trisomy 13 ~ Born: February 9, 2013</span></h3>
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<span class="Body-C">A little bit about us... My husband, Jerry, and I have been married for two years
and Nora is our first baby. I'm 35 (the dreaded advanced maternal age) and Jerry
is. 37. We live in Atlanta but met while living in NYC -<wbr></wbr> I was there for 7 years
and Jerry for 3. I am in healthcare IT sales and Jerry is a recent law school grad
(late in life career change) and working at a bankruptcy firm. As I mentioned, we
declined all prenatal screening so both Nora's sex and her condition were a surprise.
</span></div>
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<span class="Body-C">A bit about Nora...as we all can agree, our kiddos are amazing and she continues
to defy the odds everyday. She was sent home on day 10 of life with hospice care
and we started the "death watch" so to speak. Well,</span></div>
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Nora had other plans and just
continues to kick but. She has an asd and vsd and both are showing very promising
signs of closing. Her murmurs are now totally undetectable and her pediatrician (with
cardiology agreement) has been trying to get me to titrate her lasix dose DOWN but
I'm too chicken. She's on room air and has been since day one. We had some serious
scares with apnea in the beginning but she has now gone a couple MONTHS without an
episode. Her only true outward manifestation is anopthalmia though we are hopeful
that she can sense light and dark out of a teeny tiny left orbit. She currently has
an NG tube though we are working very hard to get her a g tube or button placed.
She feeds by bottle but is very inconsistent although I am very hopeful that removal
of that annoying tube will improve that. She was recently dx with a bowel malrotation
so we are in the process of finding a surgeon who will correct and place a button
in the same procedure. <br />
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<span class="Body-C">She was originally dx with holoprolosephaly in the nicu yet the study was technically
inconclusive since she moved (day 3? of life). We are also hopeful that we can get
this test repeated while she is under general for the gut surgery. In all, Nora is
doing fantastic. She weighed 12 lbs 6 oz at her peds appt last week, up from 5-<wbr></wbr>4
on her day of discharge. Se is happy, active, sweet and beautiful. I have attached
some pics. </span></div>
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<span class="Body-C">God bless you all and I hope to meet some of you at the SOFT conference in July!</span></div>
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<h4>
<span style="color: red;">We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa </span><br /> <br /> <a href="http://www.livingwithtri13.org/trisomy-13.htm">BACK TO LIVING MIRACLES PAGE</a><span class="Body-C-C5"> </span></h4>
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Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-61325195316493864342014-02-22T17:20:00.001-08:002014-02-22T17:20:36.815-08:00Lorenzo<div class="separator" style="clear: both; text-align: center;">
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<span class="Heading-C">Lorenzo ~ </span><span class="Heading-C">Full Trisomy 13</span><span class="Heading-C"> ~ Born: July 22, 2007</span></h3>
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<span class="Heading-C"> </span><span class="Heading-C"></span><span class="Body-C">Hello,my name is Imelda Castro. I am the proud mother to a wonderful,full of life,loving
angel on earth with full trisomy 13. Lorenzo was born July 22,2007,he was born to
a loving family. But he was not pre-diagnosed or was I aware of his cleft,because
he wouldn't show his face to us in the ultra sounds or sonograms. So we didn't know
anything,all we did know was he was a boy and going to be born healthy. The moment
he was born is when we saw his cleft,I have a cousin that was born with a cleft palate
and cleft lip so I was aware of the life of surgeries he was to go thru,but my cousin
is 32 yrs old now and doing well.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_8JTimzJh47pycG7213eh5eqw0jCa6EBju2InJIPZkrcziCHAIoGjxixW85Ok8A7lkt0fDYXjbdJlrXS3l5sqGYiQs2sGyUpsrpAtuxlItVa8OgSlHiThI1b03ivdtlf287RBV0W2UPk/s1600/lorenzo2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_8JTimzJh47pycG7213eh5eqw0jCa6EBju2InJIPZkrcziCHAIoGjxixW85Ok8A7lkt0fDYXjbdJlrXS3l5sqGYiQs2sGyUpsrpAtuxlItVa8OgSlHiThI1b03ivdtlf287RBV0W2UPk/s1600/lorenzo2.jpg" height="320" width="238" /></a></div>
So I started crying because of this cosmetic surgeries
that were coming,not aware of the disorder that was going to be introduced to us
days after he was born.do to my stress and shock I couldn't see my son until I ate
and was stronger. He was in the NICU,so I hurried up and ate and went to see my son
for the first time since birth,it was the next day around 1 pm when I got to c him.
I saw him and couldn't believe he was there and then noticed his extra toe,rocker
bottom feet,bilateral cleft lip and palate. He looked so lonely and wasn't allowed
to hold him. I cried but was happy to c him,then I recovered so well that then thy
decided I could go home(I wanted to scream, because if I had known that I would of
not eaten well, lol,) we went home but was told I could come back in and the unit
is open all the time I could stay with him,so I did left hospital then turned and
said ill be right back. My husband was with him and he got the news there all alone.
Came home so I could go and stay the night. But entered the door with tears,I screamed
and asked him what was wrong. He told me what doctors told him and I was so shocked
and didn't know what this disorder was. Just left to hospital and doctor came to
explain to us what it was. The words incompatible with life were so stabbing. I wanted
to hold my baby,at least once,because wasn't allowed to hold him because he was jaundice.
I told them so I need to hold him,what's the point if thy r telling me he isn't going
to live. I held him so close and dearly that he looked at me and all I did was cry,but
wasn't going to leave him alone. We took turns daddy days and me nights. Lorenzo
wasn't keeping down his milk,thy tried different milks nothing working. Then thy
told us about the g button. At 2 wks old he had it inserted,but before surgery thy
take X-<wbr></wbr>rays and discovered his intestines were malrotated. So had to have 4 things
done, malrotation, fundoplication, appendix removal and g-<wbr></wbr>tube insertion. At 3 wks
he we were told to take him home for comfort time with family. They made us well
convinced us to sign a DNR,so we did but were aware of revocation ar any time. Once
home he went thru a lot. I ignored DNR and did CPR myself .when he was 4½ months
old,he coded on me,I did CPR and called 911 my parents lived down the street so thy
rushed to me. Brought him back and sec later he stopped breathing again,I told my
sis time it,I did CPR for 12 min but never giving up on him. He came back to me,took
to hospital and doctors told me y did I bring him back,u r just prolonging the inevitable.
Once at home,alone in the bedroom with him I talked to him and god,I asked god"if
ur angel is meant to stay here on earth please leave him,if he isn't meant to stay
please take him when I am trying to bring him back. I don't want to be selfish and
keep him here if he is only to suffer and go thru pain if not necessary,I will stay
here and suffer the pain of loosing him and keep living for my other two kids. But
if u have a purpose for him to stay on earth,please allow him to stay and I will
do my best to fulfill his journey in life". I held my hands up and said"Dios te entrego
a mi hijo".(I give u my son back to u). The hardest thing for a mother to do but
something I had to do,in our tradition is known that our babies are only lend to
us and at any moment he wants them back we r to give them back. Being so hard for
me to do I did do it and god has blessed me with my son here on earth now 5½ yrs.
He went thru so much in the first yr of his life,with so many doctors denies,negative
words and refusal to do anything for him. But between my husband my family and myself
we <div class="separator" style="clear: both; text-align: center;">
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learned what to do for him and learned so many things that we ended up telling
doctors what to do. And thy were shocked because how would we know what to notice
or how to figure him out. It took sleepless nights 24hr supervision,care and most
of all LOVE AND CARE, we have had doctors apologize for being so hard to him,not
wanting to do anything for him and seeing him only as what books teach them. Thy
apologize to him personally with tears in their eyes and tell us to continue to love
him and do what we r doing for him because we seem to know him better and know how
to love him unconditionally. For all these yrs he has had people come and go from
our home and once they meet him they have a smile and when thy come back or I hear
from them they tell me that Lorenzo has changed their way of thinking,feeling and
look in life. So yes I believe he is fulfilling his purpose in life as god has meant
for his journey in life. They haven't been wanting to do cleft surgeries because
they tell me that the team of doctors will not take the chance,but they also tell
me,just like with any kind of surgery,operations there is always a risk. Well then
why is my son not considered if with anyone it is always a risk when put under anesthesia?
Thy don't know what to say,but I believe that if god wants this he will make it possible
and with patience I have been waiting for the sign he will put in front of me. He
does not sit ,stand,or walk without assistance,but does with assistance. He is a
wonderful,amazing,happy,funny,own personality,little guy. He brightens my everyday
and makes a lot of people's day. He truly is a blessing!! This is just a very,very
short summary of our journey in this amazing life we live. I love my life and journey.<br />
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<span class="Body-C-C5"><span style="font-size: x-small;"><span><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span>
<span><span style="color: blue;"></span><span style="color: red;"> </span></span><br />
<br />
<span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span></span> </span></div>
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Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-52469677141736583142014-02-22T17:13:00.001-08:002014-02-22T17:13:41.610-08:00Adalee<div class="separator" style="clear: both; text-align: center;">
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<span class="Heading-C"> Adalee ~ Full Trisomy 13 ~ Born: July 20, 2011</span></h3>
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<span class="Heading-C"></span><span class="Body-C">Hey everyone! I’m going to try to be brief :) I was so thankful for the stories on
this website. They gave us so much hope during rough times with our daughter. I’m
going to break this up into two parts, the first one is for those of you that want
to know all of Adalee’s medical information and what we have been through. I’m going
to warn you, we had a very rough first 9 months. I hope it helps you have some idea
of what you might have to go through with a wonderful trisomy baby. The second part
is about what Adalee is like and how she has impacted our family.</span></div>
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<span class="Body-C">THE MEDICAL PART</span></div>
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<span class="Body-C">My husband and I decided that we weren’t going have any invasive testing early in
the pregnancy because we wouldn’t have aborted a baby with disabilities. We had no
idea that something was wrong with Adalee. When I was 33 weeks pregnant, my midwife
was concerned about Adalee’s growth. She sent me for an</span></div>
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ultrasound which showed Addie
was not receiving the blood she needed and her fluid was getting low. I was sent
to the labor and delivery floor (which I also work at as a labor nurse). I knew something
was very wrong when I saw Adalee’s heart rate tracing. She would have huge decelerations
with minimal contractions. I had an urgent c/section that day because Addie needed
to be delivered and wouldn’t tolerate labor.<span class="Body-C"> She was born at a weight of 2lbs 7oz. At birth, she did great, she had 7/9 APGARs.
She had extra digits on her hands that we called her “diggie friends” and a cutis
aplsia (scalp lesion). She was shipped to the Cleveland Clinic within hours. My blood
pressures started to climb after delivery reaching 170/110 (PIH is common for trisomy
13). I was shipped to the Cleveland Clinic the next day, and Addie was starting to
struggle to breath. She was placed on CPAP but eventually needed to be intubated.
She received steroids and to everyone’s amazement did fabulously off the vent a week
later. She began to grow, eat, and heal. She had a PDA that closed on its own and
her scalp lesion (which we were told would need surgery) healed fully on its own
in a month. At 5 weeks old, we were able to take Addie home from the NICU! We were
told we didn’t have much time, and they let us take her home at a very low weigh
(1500 grams).</span>
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<span class="Body-C">Things were going well and we were learning to take care of her at home. At 2 months
of age, we had our first major scare. Addie started to choke at home after refluxing
some breastmilk. She turned blue and stopped breathing. We did CPR and called 911.
After 4 minutes, she coughed and slowly started to breathe again. The EMTs were just
walking through the door. We were taken back to the Cleveland Clinic. A day later,
she choked again and coded on and off for the next 2 hours in the PICU. She slowly
recovered and went home 3 weeks later, this time with an NJ tube that bypassed her
stomach so she wouldn’t reflux. This worked wonderfully until she was about 5 months
old. She choked again at home, needed CPR and was life-<wbr></wbr>flighted back to the Cleveland
Clinic. This time, she received a surgery that wrapped her esophagus to prevent her
from choking. When they did the surgery, they also found that she had a malrotated
bowel and repaired it. We had a g-<wbr></wbr>tube placed to feed her. She had a very hard time
recovering from surgery and was unable to get off oxygen. We found out that she has
bronchomalacia and would need to be on oxygen until her lungs grow stiffer.</span></div>
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<span class="Body-C">We were back in and out of the hospital over the next few months with little colds
and bugs.</span></div>
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<span class="Body-C">At 9 months of age, we were going to the hospital for a large amount of blood in
Addie’s stool. She was SOOOO fussy and we weren’t getting any sleep. On the way,
Addie’s g-<wbr></wbr>tube popped out in the car and we were unable to get it back in. While
under anesthesia to replace the tube, Addie’s vocal cord spasmed and closed shut.
She coded again in the OR for 4 minutes. What was going to be a little procedure
turned into a major event. She was again on the vent. This time, doctors had little
hope she would come off the vent, but, in Addie fashion, she took her time and was
about to be extubated after two weeks. A little side note, the blood and fussiness
was from an allergy to something in my breast milk, we never could find out what
it was, but she is so much better now.</span></div>
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<span class="Body-C">Adalee’s medical issues: Small cleft palate, small ASD that is not effecting her,
on o2 from bronchomalacia, fully g-<wbr></wbr>tube fed because we are too scared to give her
anything by mouth, seizure that started about a year of age (seen to be more controlled
on Valproic Acid), low tone</span></div>
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<span class="Body-C">THE FUN PART!!!</span></div>
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<span class="Body-C">Adalee just celebrated her 15 month birthday!!!! She is now a chubby 16lbs. Typing
out all of Addie’s health history seems like it was in another lifetime. She has
been doing so well for the past ½ year, and we have enjoyed all the time we have
had getting to know our daughter. Most days, we forget that she is a “medically fragile”
kiddo. We go everywhere with her; friend’s houses, dinner, trips, parks, church,
and walks.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9NFI3yuCNgO_XQmaO5bRQ1RTvwtQgx9-29KqhND-qROB7mz2oE39N49XgPaZBF83NOunNiQR8lCQT4BXtrSSrP9Zm0hNr6WKY8lKPD8CEnqtYVtBxAMlyHA8_nC7GGwrGcHWOf5LrLfM/s1600/addie3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9NFI3yuCNgO_XQmaO5bRQ1RTvwtQgx9-29KqhND-qROB7mz2oE39N49XgPaZBF83NOunNiQR8lCQT4BXtrSSrP9Zm0hNr6WKY8lKPD8CEnqtYVtBxAMlyHA8_nC7GGwrGcHWOf5LrLfM/s1600/addie3.jpg" height="320" width="214" /></a></div>
<div class="Wp-Body-P">
<span class="Body-C">I can’t begin to describe to you how much joy Addie has brought to our lives!! We
know God made her perfectly. She loves to smile, play with her toys, and laugh. She
is trying so hard to roll over and is so close!! She reaches for our faces and loves
to touch and explore them. Everyone says that the baby years go by so fast. With
Addie, it feels just right We get to celebrate every little thing she does and
take it all in!</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">Knowing God has a plan for Addie’s life is what helps us get by the most. Things
seem in prospective with Adalee around. She is not a burden, but a blessing. I know
people look at our lives and think we are crazy. How can we deal with a child will
all these issues? I have had so many people come to me and say “I don’t know how
you do it”. HERE IS HOW: It’s not that God only gives you what you can handle, it’s
that God equips you with the strength, patience, and prospective you need. Not every
second of every day, but most days. If I am having a bum day, it’s because I’m not
trusting in His plan and that it is the best. When God does call Addie home, I pray
for the strength I will need to choose Christ rather than bitterness. She is a gift
from the greatest gift Giver, and until that day He calls her (or me for that matter)
home, we will celebrate her life!</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">Please e-<wbr></wbr>mail us if you have any questions or want to talk. I know this journey is
not what you would have hoped or planned, but just know that God did plan it.</span></div>
<div class="Wp-Body-P">
<span class="Body-C">Email-<wbr></wbr> <a href="mailto:shireonfire@yahoo.com" style="color: black; text-decoration: none;">shireonfire@yahoo.com</a> (please put trisomy in the subject). We are on facebook
as well.</span></div>
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<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">Much love,</span></div>
<div class="Wp-Body-P">
<span class="Body-C">Ian and Renae Shire</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">Some good links that have helped me:</span></div>
<div class="Wp-Body-P">
<span class="Body-C">“Welcome to Holland” LOVE THIS</span></div>
<div class="Wp-Body-P">
<span class="Body-C-C5"><a href="http://www.youtube.com/watch?v=raEwoQDHRUg&feature=related" style="color: black; text-decoration: underline;">http://www.youtube.com/watch?v=raEwoQDHRUg&feature=related</a></span></div>
<div class="Wp-Body-P">
<span class="Body-C">We joke that this Addie’s boyfriend </span></div>
<div class="Wp-Body-P">
<span class="Body-C-C5"><a href="http://www.youtube.com/watch?v=GZINNWrQqjo" style="color: black; text-decoration: underline;">http://www.youtube.com/watch?v=GZINNWrQqjo</a></span></div>
<div class="Wp-Body-P">
<span class="Body-C">Notice who is first It’s not because her name starts with an “A”, it’s because
she rocks. Serious note-<wbr></wbr> LOVE the lyrics</span></div>
<div class="Wp-Body-P">
<span class="Body-C-C5"><a href="http://www.youtube.com/watch?v=PEIUn02MHrc&feature=related" style="color: black; text-decoration: underline;">http://www.youtube.com/watch?v=PEIUn02MHrc&feature=related</a></span></div>
<div class="Wp-Body-P">
<span class="Body-C">My “having a bad day” songs:</span></div>
<div class="Wp-Body-P">
<span class="Body-C-C5"><a href="http://www.youtube.com/watch?v=HPhEJf5V5YQ" style="color: black; text-decoration: underline;">http://www.youtube.com/watch?v=HPhEJf5V5YQ</a></span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C-C5"><a href="http://www.youtube.com/watch?v=1CSVqHcdhXQ" style="color: black; text-decoration: underline;">http://www.youtube.com/watch?v=1CSVqHcdhXQ</a></span></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<br /></div>
<div class="Wp-Body-P">
<span class="Body-C-C5"><span style="font-size: small;"><span><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span>
<span><span style="color: blue;"></span><span style="color: red;"> </span></span><br />
<br />
<span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span></span> </span></div>
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</h3>
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<br />Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-8354593462758884392014-02-22T17:01:00.001-08:002014-02-22T17:01:09.145-08:00Cati<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS9XipUC34TrhK9D8JpQeMVVB-VUdpM0-b-rew2JBbP_1UY4VHa2pMdivkkZM8bM__L7gWt_Yp6upf2nzav4cn0D5MfZW_wbwQL3Wl6j4IVgVenh8316Z_Opp8J0Uc7UWJTXicr6mf7T8/s1600/cati2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS9XipUC34TrhK9D8JpQeMVVB-VUdpM0-b-rew2JBbP_1UY4VHa2pMdivkkZM8bM__L7gWt_Yp6upf2nzav4cn0D5MfZW_wbwQL3Wl6j4IVgVenh8316Z_Opp8J0Uc7UWJTXicr6mf7T8/s1600/cati2.jpg" height="301" width="320" /></a></div>
<h3>
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<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C"></span><span class="Heading-C">Cati ~ Full Trisomy 13</span><span class="Heading-C"> ~ Born: April 26, 2011</span></h3>
<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C"> </span></h3>
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<br /></div>
<div class="Wp-Body-P">
<span class="Body-C"> Cati was a planned baby-<wbr></wbr> we already had a son that lit our lives and filled our
home with energy and curiosity and smiles, and we badly wanted a little girl to join
him. So we were thrilled when we found out that we expected a girl. On a later ultrasound
we were told that she had ARSA (abberant subclavial right artery).</span></div>
<div class="Wp-Body-P">
<span class="Body-C">She was born at 38 weeks, by a planned C-<wbr></wbr>section, and weighted 3.700 kg (more than
my son!). She had trouble breathing, had a brain hemmorage and had to be put in an
incubator. I immediately asked if she had Down Syndrome. She did not, I was told,
but there were several things wrong with her-<wbr></wbr> extra small pinkies on both hands,
a vellar cleft palate and a misshaped forehead (trigonocephaly-<wbr></wbr> I found out later).
Her skull was cut in 2 places (cutis aplasia)-<wbr></wbr> a sure sign of Trisomy 13. Later on
we learnt that she had cataract on both eyes, her heart is set on the middle but
has no life threatening conditions. She was suspect of spina bifida, but we ruled
that out.</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">No doctor would tell us what was wrong with her. We had to instist that the only
neonatologist who seemed to know what was wrong with Cati, would tell us. She first
said that Cati stood no chance. Later, she took a medical book and showed us a little
5 year old boy with T13-<wbr></wbr> “Who knows, Cati might survive”, she said. “Doctors are
not God and they cannot predict anything”.</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">I, on the other hand, asked my brother to search Trisomy 13 on the internet. After
reading the statistics, I was sure she wouldn’t make it. It was so unfair! There
she was, a little girl that nobody rejoiced for, that </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWgDclkhURd9ZyHV2AgPyuEetYeiHD-LxGzP2sd3w-n16HGmRTDvdNik2BGICisuiXNU5Jonj0q5vVARWd484lbq6yVLG_mtIM0utW_2Izzet_-3uVaYmSKrQ-TM1lbz7vRrB0y0Qrs2s/s1600/cati3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWgDclkhURd9ZyHV2AgPyuEetYeiHD-LxGzP2sd3w-n16HGmRTDvdNik2BGICisuiXNU5Jonj0q5vVARWd484lbq6yVLG_mtIM0utW_2Izzet_-3uVaYmSKrQ-TM1lbz7vRrB0y0Qrs2s/s1600/cati3.jpg" height="320" width="229" /></a></div>
nobody dared to love for fear
we would lose her. I decided right there that she was NOT a bad thing happening to
us, that she was sent by God with a message of love, that she must have a purpose
and a meaning. I wanted to discover that purpose, but most of all, I wanted Cati
to be loved.<br />
<div class="Wp-Body-P">
<span class="Body-C">She had a good sucking reflex, so we could bottle feed her, first with a special
nipple for cleft palate, and later we discovered that she would feed better with
a normal, soft nipple. She had two spells of apnea in the first week, but none later
on.</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">We brought her home at 3 weeks and waited for her to die, as we had read. She didn’t.
When she was 6 weeks old, I made my mind to treat her as if she survived. We took
her to a PT to have her evaluated (she missed some reflexes and had hypotonia). The
day she turned 3 months old she started Physiotherapy-<wbr></wbr> and a year later, her therapist
told me that Cati surpassed her expectations.</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">We started testing her and all results came out better that we expected. “Better
that we expected” seemed to describe Cati’s life. We weren’t sure she could hear-<wbr></wbr>
but it turned out she has normal hearing. We knew that she had cataract, but the
ophtalmologist told us that her sight axis is free, so she can perceive things and
doesn’t need immediate surgery. Her heart check went better than we expected, too-<wbr></wbr>
some abnormalities and median position, but no treatment or surgery required.</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">She started rolling at four months, but stayed at this stage for a while. At almost
14 months, she can initiate crawling on a downward slide, she can grab a toy and
shake it, she tries to push buttons and puts everything (mostly her two thumbs) in
her mouth. She is very sweet tempered and has a sunny disposition.</span></div>
<div class="Wp-Body-P">
<span class="Body-C"><br /></span></div>
<div class="Wp-Body-P">
<span class="Body-C">When she was 13 months old we took her to the UK for an evaluation with NACD, and
we started this neuordevelopemental program. We hope her chances of progress are
better now.</span></div>
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<span class="Body-C"><br /></span></div>
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<span class="Body-C">One thing I can say about her is that she is LOVED beyond our imagination, People
that do not know us fell </span></div>
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</div>
in love with her just by watching her pictures, and she
has brought so many friends in our lives. I blog about her, and when she turned one
she got over 100 birthday greetings from virtual friends. I can see how she changed
lives and quenched fears, and her happy disposition was labeled as “therapeutic”.
She fills our lives with joy and laughter and teaches us a lesson of perseverance
and fight and trust. We cannot control what is going to happen, but every day with
Cati is a day we don’t miss her, so we live one day at a time.<br />
<span class="Body-C">Cati turned two years old this April, and she made huge progress this past year-<wbr></wbr>
she mastered army crawling, she can babble (says “ma-<wbr></wbr>ma” and it is a joy to hear
her voice!), she can use her pincer grip, understands what we are saying, knows lots
of body parts, responds to commands, survived pneumonia, chicken pox, ear and eye
infections and innumerable colds, without having to stay one night in the hospital
so far.</span><br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiafcvOavccvoKu3pxJFcGRAGh0IauowRl-6_Am4t36BnoHKaBxPf9rBV1j5r622QtcxcPggduTN5kjrnGqCmuoZSgAs_WI037GM86lXNL4IzrJ4qQ4CJ-NRpRRAFxYlC2h3nqmykOF6dA/s1600/cati.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiafcvOavccvoKu3pxJFcGRAGh0IauowRl-6_Am4t36BnoHKaBxPf9rBV1j5r622QtcxcPggduTN5kjrnGqCmuoZSgAs_WI037GM86lXNL4IzrJ4qQ4CJ-NRpRRAFxYlC2h3nqmykOF6dA/s1600/cati.jpg" height="320" width="280" /> </a></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-size: x-small;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span>
<span style="font-size: x-small;"><span style="color: blue;"></span><span style="color: red;"> </span></span><br />
<br />
<span style="font-size: x-small;"><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span></div>
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Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-30481367276305833202014-02-22T16:34:00.001-08:002014-02-22T16:34:28.219-08:00Brilen<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Y2vw9nlz-CvSxIzKweynRsKOdUoc1CmYjWwaPugkT-OOjwzGSDrgf5CYMSCb4HKyiGXfLReNU7b_Fy5FzLHefEstO_10Y0aioi6WscGKB5nV83vLSj-1MqKXJw7Wa7iz-hhUz953uJM/s1600/brilen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Y2vw9nlz-CvSxIzKweynRsKOdUoc1CmYjWwaPugkT-OOjwzGSDrgf5CYMSCb4HKyiGXfLReNU7b_Fy5FzLHefEstO_10Y0aioi6WscGKB5nV83vLSj-1MqKXJw7Wa7iz-hhUz953uJM/s1600/brilen.jpg" height="272" width="320" /> </a></div>
<h3 style="text-align: center;">
<span class="Heading-C">Brilen ~ </span><span class="Heading-C">Full Trisomy 13 ~ Born: December 27, 2012</span></h3>
<br />
<span class="Body-C">Brilen was born on December 27, 2012. We had no idea at the time that he had trisomy13
and found out when he was 4 days old. We had the quad 4 screening done at 11weeks
6days pregnant to test for any chromosome disorders and it all came back negative,
so this was a REALLY big shock to us. We have been in and out of the hospital his
whole 5 months of life, but when you have a trisomy13 baby it will be the biggest
fight in your life to get them proper medical care. We are blessed to have him for
5 months so far and love him more than life. Due to the trisomy13 he has trachamalacia,
bronchomalacia, larygmalacia, pulmonary hypertension, small abnormal spot in his
brain, the list could go on and on. All of you with t13 babies, NEVER GIVE UP HOPE,
us as parents are their loudest voice.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZciCYmYnJDNNyNPwzxfGCHR19965M-ssKsF8BF2YzfLt_OaH_E0V0lLrZce6PHrDc5NV_k1Ke7RSQWE9fyBmn-wb1L5-W3dSu4sZAgqQBaKpdSwls8rNpgQnraH6wDIek_NbJf00qz54/s1600/brilen2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZciCYmYnJDNNyNPwzxfGCHR19965M-ssKsF8BF2YzfLt_OaH_E0V0lLrZce6PHrDc5NV_k1Ke7RSQWE9fyBmn-wb1L5-W3dSu4sZAgqQBaKpdSwls8rNpgQnraH6wDIek_NbJf00qz54/s1600/brilen2.jpg" height="320" width="320" /></a></div>
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<span class="Body-C"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdIQ3lnhMKsR-JgBwCBb9ppq3pF46SZXnEdmTW6GFrTx7I-i0ONnxIBzK-Kz1lSyzC3XiaNBnd1-CDQJPpMaLvW6HMTtnDk_SLwEiz-B-xc2TZZLWqSk0bGAyn8JLtHBJ2Vs788ESZH3Q/s1600/brilen3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdIQ3lnhMKsR-JgBwCBb9ppq3pF46SZXnEdmTW6GFrTx7I-i0ONnxIBzK-Kz1lSyzC3XiaNBnd1-CDQJPpMaLvW6HMTtnDk_SLwEiz-B-xc2TZZLWqSk0bGAyn8JLtHBJ2Vs788ESZH3Q/s1600/brilen3.jpg" height="320" width="238" /></a></span></div>
<br />
<br />
<br />
<div class="Wp-Body-P">
</div>
<div class="Wp-Body-P">
<span style="font-size: x-small;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span> </div>
<div class="Wp-Body-P">
</div>
<div class="Wp-Body-P">
<span style="font-size: x-small;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span></div>
<br />Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-64139017686381943922014-02-22T12:04:00.001-08:002014-02-22T12:04:24.967-08:00Delainey Disna<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuMxNZrrDDBpwiP-A-rmN_fHKoqxtmiWuhd5EnG0E95K5hpH6cyXSktu-u3OnlvTmzv9H8a4NS-s3WGS8wTboLg2gylqpxWHJiYwnYSnc9xKI90yYC7KvlYv7Zt1QepQN8b3ua6TtGQaQ/s1600/delainey2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuMxNZrrDDBpwiP-A-rmN_fHKoqxtmiWuhd5EnG0E95K5hpH6cyXSktu-u3OnlvTmzv9H8a4NS-s3WGS8wTboLg2gylqpxWHJiYwnYSnc9xKI90yYC7KvlYv7Zt1QepQN8b3ua6TtGQaQ/s1600/delainey2.jpg" height="320" width="211" /> </a></div>
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<span class="Heading-C"> Delainey Disna ~ Full Trisomy 13</span> ~ Born: April 27, 2012</h3>
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<span class="Body-C">Delainey was diagnosed via ultrasound at 26 weeks with abnormally large kidneys and
we had to follow with fetal assessments every 2 weeks to see if there were any changes,
they also noticed she had a one artery umbilical cord. The dr.s prepared us that
she may need to be put on dialysis and possibly need a transplant as she got older.
I was devastated. I thought to myself "this is awful, the worst possible news ever"
Only to find out at birth that she would be diagnosed with a terminal disorder.</span></div>
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<span class="Body-C">Delainey was born almost 7 weeks early and was 4lbs 5oz and 18 inches long. She was
born with a cleft lip and pallet, a hole is her heart, one of her aortas tapered
off and was severely deformed, she had enlarged severely damaged kidneys with large
cysts on them, her left eye was fully developed but much smaller and blind compared
to her right eye and was fused shut.</span></div>
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<span class="Body-C">On the outside, aside form her eye and mouth her body is perfect, 10 fingers and
10 toes, adorable legs, feet and hands. In the weeks to come she went through extensive
testing and it was such a stressful time in our lives. All I could think of was "What
am I going to tell my friends and family? What are they going to say about her? What
if they think we did this to her?"</span></div>
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<span class="Body-C">We decided early on to be honest about Delainey's condition, mostly because if I
wanted support during this difficult time we would have to inform everyone about
what it is we need support for. The reaction from our friends and family was so positive
and encouraging. We have full support from so many people, friends, family and even
strangers that have heard about Delainey's story and have been praying for our family.</span></div>
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<span class="Body-C">At 3 weeks old we had asked the chaplain at the hospital to come and bless Delainey
and lay hands of </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh26nO9a1TVuH-5vqhBSXuSGCsnsYOSgtcwJdDbbpUt-IShqhdt7U1BVlVVeSpdYzn7SmR-AZd4ncRJE4xisNJ1k1x1Jb7MuUdUFAIblTZ4674xucbLJNCPtKV28G71fRD7zgoWyRP80i8/s1600/delainey3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh26nO9a1TVuH-5vqhBSXuSGCsnsYOSgtcwJdDbbpUt-IShqhdt7U1BVlVVeSpdYzn7SmR-AZd4ncRJE4xisNJ1k1x1Jb7MuUdUFAIblTZ4674xucbLJNCPtKV28G71fRD7zgoWyRP80i8/s1600/delainey3.jpg" height="240" width="320" /></a></div>
healing over her kidneys and her eye (at that time those are the
only 2 things we knew about) It was at week 4 that she would be diagnosed with full
Trisomy 13<br />
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<span class="Body-C">When Delainey was discharged at 6 weeks old the hospital ran a few more tests just
to update their records and when they brought her in for her scan of the back of
her eye they noticed she had opened it, also the ultrasound of her eye showed she
was no longer blind, earlier testing showed a dark haze over the eye.</span></div>
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<span class="Body-C">They also did blood work and her kidneys although were still damaged were operating
at a steady rate and she would no longer be of concern. Her potassium, hemoglobin
and all other levels tested all came back NORMAL. Also, all of her cysts were GONE</span></div>
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<span class="Body-C">At the beginning of September 2012 we had her heart tested via ultrasound to see
how it was functioning because she is going for her cleft lip and nose repair and
the anesthesiologist wanted to know if her heart could handle it. After waiting in
the office for about an hour the Dr. came in and asked us if we had seen photos of
her heart at birth, we did not, so she showed us, you could visibly see s severely
deformed aorta and large hole. She then proceeded to show me the current heart.......I
was confused and the Dr said "Your reaction was the same as mine" We were looking
at a completely different heart, with NO ABNORMALITIES, her heart was diagnosed as
100% normal, and we were told there was no need to have to ever come back and that
we were parents to a true miracle (of course any parent to a Trisomy baby already
knows this as well)</span></div>
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<span class="Body-C">Currently Delainey has been healed of all her problems minus the actual Trisomy diagnosis
itself and although </span></div>
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we have accepted it I still have great faith in our Lord and
have seen his work in our daughter and in other peoples children as well and I will
continue to pray for healing.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho2l16qjzehNcXC0LxmOxbVX6F6rnE52vKt4hanEft-t_2_-sGwvd6cbOv9PXrw_oA3awrxkLG-asVmzWghLPVWoUcBpNAnepbZcT6DPNNriyHX7lInsMeq_4YxPScBWxD8hskOzX0h4k/s1600/delainey.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho2l16qjzehNcXC0LxmOxbVX6F6rnE52vKt4hanEft-t_2_-sGwvd6cbOv9PXrw_oA3awrxkLG-asVmzWghLPVWoUcBpNAnepbZcT6DPNNriyHX7lInsMeq_4YxPScBWxD8hskOzX0h4k/s1600/delainey.jpg" height="320" width="320" /></a></div>
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<span class="Body-C">Delainey is only 9lbs at 5 months old and still behaves like a newborn but she is
so bright and she has brought so much love and life into our home. She's always smiling
and playing with her hands. She loves to sit in her jumperoo and push her feet off,
she's also doing really well attempting to control her head and hold it up.</span></div>
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<span class="Body-C">I told myself at the beginning of this all asking myself "How will I ever live with
a child like this?" (out of anger of course) and now I couldn't imagine my life without
her. She is my light, my saving grace, my everything.</span></div>
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</h3>
<span class="Heading-C"></span><br />
<span style="font-size: small;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span>
<span style="font-size: small;"><span style="color: blue;"></span><span style="color: red;"> </span></span><br />
<br />
<span style="font-size: small;"><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span><br />
<br />Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-63302740316203163632014-02-22T11:59:00.001-08:002014-02-22T11:59:10.931-08:00Lael Camila<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYHq09lSdDSzTuGeG2bOWJvHrtWtlL3hwFwn9bXYNOVuME3RoKY49oLYi6u3sWp4tq5GBXSMOs6uPvkF7JATeBQVYlpCdMnWnKcb2LcdRAlDkCJqM03qFs19waIPLEuSelr0L3PI_YY9w/s1600/lael.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYHq09lSdDSzTuGeG2bOWJvHrtWtlL3hwFwn9bXYNOVuME3RoKY49oLYi6u3sWp4tq5GBXSMOs6uPvkF7JATeBQVYlpCdMnWnKcb2LcdRAlDkCJqM03qFs19waIPLEuSelr0L3PI_YY9w/s1600/lael.jpg" height="240" width="320" /></a></div>
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Lael Camila ~ Full Trisomy 13 ~ Dominican Republic<br />
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<span class="Body-C">Hello, I have an adorable baby girl, i live in Dominican Republic so my English could
seems strange to you , my beautiful girl was at UCI since the same date she was born
thanks God she is at home stable, i beg your prayers i will do for you as well, she
is a special girl she moves her head when hear my voice really she is adorable. Here
some pictures of the girl, certain here there are very very special child.</span></div>
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<span class="Body-C">With love</span></div>
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<span class="Body-C">Miguelina</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaqkfT1TklL6w_hyDJ6EPpP335bO6guMXW830nCPZ5zX7JzNTNj7rGO_XAnVKnjworrDGFnn7-AKH3uw6IAJpog3PbJ-9bPxC7wc3PuwwXTULvc-AAoIfDbtm9nuaQSUvZRpaQhxLaSq8/s1600/lael3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaqkfT1TklL6w_hyDJ6EPpP335bO6guMXW830nCPZ5zX7JzNTNj7rGO_XAnVKnjworrDGFnn7-AKH3uw6IAJpog3PbJ-9bPxC7wc3PuwwXTULvc-AAoIfDbtm9nuaQSUvZRpaQhxLaSq8/s1600/lael3.jpg" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7uY6b9kA1qFVkU7wEPHtu1EfBUWxthReJu3WoMwAYSTTAipFYMkG1dVJJv7EaOrMr-lntU7ouILVRIdmOgvnSpC8AhIR86VrolOGFhLWEZHw4cST4yPiMVq8_6SRJW52ji9Tcbo4h8Zo/s1600/lael2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7uY6b9kA1qFVkU7wEPHtu1EfBUWxthReJu3WoMwAYSTTAipFYMkG1dVJJv7EaOrMr-lntU7ouILVRIdmOgvnSpC8AhIR86VrolOGFhLWEZHw4cST4yPiMVq8_6SRJW52ji9Tcbo4h8Zo/s1600/lael2.jpg" height="240" width="320" /></a></div>
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<div class="Wp-Body-P">
<span class="Body-C"></span><span style="font-size: small;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa </span></span>
<span style="font-size: small;"><span style="color: blue;"></span><span style="color: red;"> </span></span></div>
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Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-73594391458439172132014-02-22T11:52:00.000-08:002014-02-22T11:52:00.010-08:00Troy<div class="separator" style="clear: both; text-align: center;">
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<span class="Heading-C">Troy</span><span class="Heading-C"> ~ Partial Trisomy 13 ~ Born: June 8, 2011</span></h3>
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<span class="Heading-C"></span><span class="Body-C">"It's a boy!" Those happy words were a heavenly comfort as I held my wife's hand
during her emergency C-<wbr></wbr>Section. She squeezed my hand as we heard Troy cry for the
first time. We had been in the hospital since the day before, and the baby had been
having trouble inside after they induced labor... so to hear his voice, healthy,
made us both so relieved and happy. The doctors were surprisingly quiet, however.
I'd planned on cutting the cord after</span><span class="Body-C"> debating it for a couple of weeks. But they never brought the baby to us. The doctor
came over and said "Before you look at him there's a few things I need to tell you...."
He gave us a list and said that he'd like to do an ultrasound, an xray, issue a genetics
test. The doctor looked like a mad scientist, thrilled that he hadn't seen anything
like this before. As soon as I saw Troy's face, though, I thought what is this doctor
talking about… The baby looks great... he's cute! I touched Troy's hand, still covered
in that cheese stuff that baby's have,and he grabbed my finger and looked up at me. We stared at each other for several
seconds. It was amazing.</span></div>
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<span class="Body-C">The day after he was born, the preliminary chromosome tests indicated that Troy had
Partial Trisomy 13, and Partial Monosomy 7. I googled this information and discovered
quickly the seriousness </span></div>
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of this syndrome. It felt unreal. And then I discovered this
site, and I realized there was hope. I realized that despite the statistics there
were survivors, and more importantly there were happy lives... some shorter than
others, but no less precious. We were hopeful because Troy didn't have any problem
that put him in immediate danger, just lots of concerns. We met with the geneticist
a month later for the official result.<span class="Body-C"> It was confirmed, Partial Trisomy 13. The part duplicated was significant, although
not complete. The monosomy 7 was trivial he said. He talked about how well Troy was
doing, and that he is the best case of Trisomy 13 he had personally seen. This made
us so happy to hear that. And then he told us for the next twenty minutes that he
did not expect Troy to survive for a month or two. He said that he would probably
get complications with his heart or lungs. I told him I was aware of the statistics,
but look how good he is doing. He doesn't have anything that should shorten his life,
I said. He disagreed and said just having Trisomy 13 was reason enough. My wife and
I left the hospital overwhelmed. We went out the door and headed to the car. Halfway there I looked over and saw a dove sitting
on the hand-<wbr></wbr>rail, with a twig in his mouth. It looked like the symbol of peace. I
walked closer and closer to him, and the dove was not afraid. It nearly let me touch
him before it flew away. Immediately a Bible verse came in to my head, "Peace I leave
with you, my peace I give unto you: not as the world giveth, give I unto you. Let
not your heart be troubled, neither let it be afraid." Despite the diagnosis a moment
ago, I smiled... knowing God is in charge. Jesus is with us and He knows what is
going on.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOWEHGZNYYD0hQvlfJrc9NkEPZuWrvCp-atFSks9IX4M2EVUVCJgQVBc674A7uj2UgexBOyQoi2cExMtjpwv_v2e0WHH035JGwnu23DS4Iv78juWlEumY-RH8x0i9_RRVRw-xJZcouQwA/s1600/troy3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOWEHGZNYYD0hQvlfJrc9NkEPZuWrvCp-atFSks9IX4M2EVUVCJgQVBc674A7uj2UgexBOyQoi2cExMtjpwv_v2e0WHH035JGwnu23DS4Iv78juWlEumY-RH8x0i9_RRVRw-xJZcouQwA/s1600/troy3.jpg" /></a></div>
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Troy is now over 2 months old and going strong. Instead of deteriorating, he is thriving!
He was born<br />
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4 pounds 6 ounces and is now 8 pounds 8 ounces... nearly double. His
pediatrician says that despite being Trisomy 13, he is doing great. He does have
trouble breathing at times, trouble eating, has kidney swelling and a Tethered Cord.
However, his lists of problems a month ago were twice as long and twice as serious,
including a hole in his heart that now seems to be healed. I thank God for the serious
conditions that have simply gone away without surgery. God performs little miracles
in people's lives everyday... the best miracle He gave us, was Troy.<br />
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<div class="Wp-Body-P">
<span style="font-size: small;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span>
<span style="font-size: small;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span></div>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-41723506146783770692014-02-22T11:14:00.001-08:002014-02-22T11:14:39.511-08:00Summer<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEJMO4wS2ThCRpUCji230AmASVjhyphenhyphennjgR9-sQ9bgAXY3F8ppa_Gpvg2IN6qucl3Yk9niTRzN_Z0zuACCWP7-9EXpCxtJuvdLDDMdhTkCrG7z8_LN90wQuWoRNRemEuLM2MKZA6Bne243g/s1600/summer2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEJMO4wS2ThCRpUCji230AmASVjhyphenhyphennjgR9-sQ9bgAXY3F8ppa_Gpvg2IN6qucl3Yk9niTRzN_Z0zuACCWP7-9EXpCxtJuvdLDDMdhTkCrG7z8_LN90wQuWoRNRemEuLM2MKZA6Bne243g/s1600/summer2.jpg" /></a></div>
<h3 style="text-align: center;">
SUMMER ~ FULL TRISOMY 13 ~ BORN: OCTOBER 11, 2011</h3>
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<span style="background-color: white;"><span class="Body-C">Summer was born almost 6 weeks premature with an emergency c-<wbr></wbr>section. During a non-<wbr></wbr>stress
test at the doctor’s office, Summer’s heart rate was so low so I was rushed to an
ultrasound in the next room where we found that she is under some kind of stress.
The doctor told us go straight to the hospital and you will be there faster than
an ambulance because the baby have an hour at most. Miss Summer was born 20 minutes
from us waking into the hospital, and the reason for her stress was that the umbilical
cord was wrapped around her neck 3 times very tight, basically the cord was strangling
her. When she was born, she had an extra digit on each of her extremities and that was
the first surprise for us. She was rushed to the NICU at the children’s hospital.
When she was 5 days old we had a phone call in the evening from her doctor telling
us that the genetic testing came back positive for trisomy 13, this was my first
time hearing the word trisomy. All night my husband and I were on the internet trying
to understand what trisomy is and how it affects her. I think this was the saddest
day in my life! I was learning that my new baby may just not survive, but then I
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found this site Livening with trisomy 13 and had a little hope. The next morning
the doctor meets us in the hallway of the NICU and asks what we know about trisomy,
and then briefly explains that Summer’s chance of life is very slim and tell us that
we have to make some decisions. I ask what/ he says that best for Summer is to pull
her breathing tube out and let her go in peace. I couldn’t believe my ears, and I
asked why? He said that she will not live so why to torture her. I said, she is a
preemie baby and almost all preemies here are on ventilators so why you don’t want
help Summer. I asked does she have any other problems with any of her organs that
are life threatening? And his answer was no. Her dad then said she deserves a chance
for life like all these other babies and we will help her to get it. This when we
knew how hard the road ahead of us will be, not just because of our little sweet
heart’s health but we realized how the doctors feel about this kind of diagnosis
and what it will take to convince them at every step along the way to help and treat
Summer and not her trisomy! Now Summer is 6 months and 3 weeks old, she is eating
on her own, breathing on her own, giving us the biggest smiles, recognize us and
our love to her. Is she behind on her developments? Yes. Does she has some health
issues that keep rising along the way? Yes, and we are getting the doctors to work
on them one at the time. Was it hard to convince the doctors at CHKD to operate on
Summer? Yes, it was, but we talked them into it, it took time but she was doing fine
and there were no other reasons the doctors can give us for not operating on Summer
than that <div class="separator" style="clear: both; text-align: center;">
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she is trisomy 13 baby. As of date, Summer had already had 4 anesthesia
for 3 different surgeries and 1 MRI, but we were told over and over she will not
survive anesthesia or any surgeries. She had an incarnated umbilical hernia repaired.
She had glaucoma in her both eyes that was neglected by the NICU doctors as Summer
eyes were never checked after birth even if that is a standard procedure of this
hospital’s NICU, as a result, we are not sure how much vision does Summer has left
but will know by time. She also had/has problems with her urinary system, she had
one surgery to put stint into her right kidney to release build up pressure, and
she still have 2 more surgeries planed for the upcoming 2-<wbr></wbr>4 weeks to work more on
her bladder and kidney. Summer obviously has her own plan and schedule of doing things,
but she want to live and we will help her with the grace of God to have a good quality
of life for as long as she need to. It has been very hard on our family, all the
sleeplessness nights, doctor visits, hospital stays, but the love we have for her
and the lessons we have learned from this little soul are invaluable.<br />
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<br /></div>
<div style="text-align: left;">
<span style="background-color: white;"><span class="Body-C"></span></span><span style="font-size: small;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span>
<span style="font-size: small;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span></div>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-39565078396288804112014-02-22T10:26:00.001-08:002014-02-22T10:32:44.898-08:00Devon Stewart Victor<div class="separator" style="clear: both; text-align: center;">
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<span class="Body-C"> </span><span style="font-size: small;"><span class="Body-C"> </span></span></div>
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<span style="font-size: small;"><span class="Body-C">Devon Stewart Victor ~ Full T-13, BALANCED translocation 5 and 13</span></span><span class="Body-C"><span style="font-size: small;">~Born: June 15, 1995</span> </span> </h4>
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<span class="Body-C">Hi All :o)</span></div>
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<span class="Body-C"><br /></span></div>
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<span class="Body-C">I’ve been remiss on updating Devon’s page. He’s now 17 yrs old and a senior in high
school!!! He’s now about 5’2” and 112 lbs…thank heavens he can walk!!!</span></div>
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<span class="Body-C">He eats like a horse (orally), never sits down, very determined, extremely opinionated
and no sense of </span></div>
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personal safety. He communicates with his Tech Talk (PECS & Real
Voice recordings (my voice) and believe me when I tell you he can NAG with it! He
uses some sign and ultimately will just drag our sorry butts to what he wants if
we’re not getting’ it :o)Aside from terrible acne…not fair…he doesn’t eat hardly
any junk food and no soda…his biggest problem is his eye. The silicone oil bubble
reached it’s shelf life about 1 ½ -<wbr></wbr>2 yrs ago. The inflammation is making his cornea
milky blue-<wbr></wbr>ish and Dr. Mav is concerned that the inflammation is weakening his optic
nerve. Good news is his Retina is still stable/attached. We see his retina specialist
every 1-<wbr></wbr>2 months. Last month (8/2012) his pressure was up and another drop was added
for a total of 2 different drops for pressure and 1 for inflammation. Problem is
the one for inflammation makes the pressure go up…catch 22 :o( We go back tomorrow
and if his pressure is still up, we’ll plan surgery to remove the silicone oil bubble
and to scrape the film off his cornea (not lasered) . It’ll take some choreography…there
will be both his Retina specialist and his Cornea specialist there. It’ll be a day
surgery and a week home from school. He’ll be wearing a clear/air-<wbr></wbr>e-<wbr></wbr>ated eye patch
and women’s bag gloves to keep him from rubbing his eye or isolating a finger to
poke it. Unfortunately his eye will look like hamburger…we know this from previous
surgery…really nasty looking :o( I guess that’s about it for now…always happy to
answer any questions :o)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhncYqBZ6T-UySmBOTTANwzIyfv7BtuhZ9jX9od9DtzEnMNZP424DJXV5UQivgwFRHE9banVZdvP8HnJ-u8ORjEcqxZLNQR2ooh-ZzTqb1yvq6UWJ-3BteVUtdNUPYLS6JAAAaWBoGaJsw/s1600/devon3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhncYqBZ6T-UySmBOTTANwzIyfv7BtuhZ9jX9od9DtzEnMNZP424DJXV5UQivgwFRHE9banVZdvP8HnJ-u8ORjEcqxZLNQR2ooh-ZzTqb1yvq6UWJ-3BteVUtdNUPYLS6JAAAaWBoGaJsw/s1600/devon3.jpg" height="320" width="238" /></a></div>
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<span class="Body-C">TO learn more about Devon please visit his <a href="http://www.trisomy13archive.com/"> </a></span><a href="http://www.trisomy13archive.com/"><span class="Body-C-C5"></span></a><a href="https://www.blogger.com/null" style="color: black; text-decoration: underline;">ARCHIVE ALBUM</a><br />
<span style="font-size: medium;"><span style="color: blue;"> </span></span><br />
<span style="font-size: medium;"><span style="color: blue;">We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span><br />
<span style="font-size: medium;"><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span> <br />
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-75187879724539052032014-02-21T10:08:00.001-08:002014-02-22T10:30:46.903-08:00Katherine Sloanne<!--[if gte mso 9]><xml>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUZ-ScSPDoLDjrQ6rjonAqDgh_jLYmeVHIehmcitaF-Pimpm6ISQdwHL2mTmZyXW9NAsgR-22GQf7FCZMxup2s9OaVAcLKM2ulptaGc9MEC8Oct34IX3RMXz6561aa4bxNHcwwR8yMS6E/s1600/kate2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUZ-ScSPDoLDjrQ6rjonAqDgh_jLYmeVHIehmcitaF-Pimpm6ISQdwHL2mTmZyXW9NAsgR-22GQf7FCZMxup2s9OaVAcLKM2ulptaGc9MEC8Oct34IX3RMXz6561aa4bxNHcwwR8yMS6E/s1600/kate2.jpg" height="320" width="237" /></a></div>
<br />
<br />
<h3 style="text-align: center;">
Katherine Sloanne</h3>
<h3 style="text-align: center;">
Partial Trisomy 13 </h3>
<br />
<div class="MsoNormal">
Katherine was diagnosed prenatally with partial T13 and
tetralogy of fallot (CHD). At birth we learned she had a cranial defect called
craniosynostosis, kidney issues, eye issues (called Coloboma), a tethered
spinal cord, hypothyroidism, and seizures. She also had a g-tube placed at 6
weeks-old. She spent 52 days in the NICU.<span style="mso-spacerun: yes;">
</span>She has had open heart surgery, cranial surgery, spinal surgery, and
numerous cardiac catheter procedures.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjafbC8593QDiX92sIwKhKpKgczPxOyQhhWdRDtRT3kRyTsmUVflMgrHnbQeK7mXeJBzZ7DYODiWQbbozy9QPgXmZSV-CGZe9X8LLfA5rzv8QiumlGSPVh-V_LgY1ES8p4PwLFZIGcD1A/s1600/kate1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjafbC8593QDiX92sIwKhKpKgczPxOyQhhWdRDtRT3kRyTsmUVflMgrHnbQeK7mXeJBzZ7DYODiWQbbozy9QPgXmZSV-CGZe9X8LLfA5rzv8QiumlGSPVh-V_LgY1ES8p4PwLFZIGcD1A/s1600/kate1.jpg" height="320" width="238" /></a></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today Katherine, or Kate as we like to call her, is doing
well. She is healthy, though she recently had a reoccurrence of seizures that
landed her in the PICU a few times earlier this year.<span style="mso-spacerun: yes;"> </span>She is getting stronger all the time. She is
progressing in physical therapy and she has moved on to using a stander to
increase her ability to bear weight on her legs, and we hope to try out a
walker/gait trainer soon.</div>
<div class="MsoNormal">
Kate became a big sister in February this year. Her little
brother Ian is healthy and developing on track. Kate is simultaneously
interested and annoyed with her little brother’s existence, which is typical
2-year-old behavior.<span style="mso-spacerun: yes;"> </span>Kate will
officially turn 2 in May and we are so blessed to have her in our lives and
look forward to many more birthdays.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZVKJS9P8oEb1NUjkDdhcSvqcJ-W1avqZGv7LslPYt786zFYNGG_GoNXjCUOwswxg-8OOkP64RFlJ0zT4s4mC6I3IY8sUp5wYdqCCokv5k2UkdKWXDeMNAGBQ8QnZBFJbvEGRb8XFvG8k/s1600/kate3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZVKJS9P8oEb1NUjkDdhcSvqcJ-W1avqZGv7LslPYt786zFYNGG_GoNXjCUOwswxg-8OOkP64RFlJ0zT4s4mC6I3IY8sUp5wYdqCCokv5k2UkdKWXDeMNAGBQ8QnZBFJbvEGRb8XFvG8k/s1600/kate3.jpg" height="320" width="238" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Bethany Lafferty, mom to Katherine</div>
<div class="MsoNormal">
<a href="mailto:bab5251@yahoo.com">bab5251@yahoo.com</a><br />
<br />
<span style="font-size: medium;"><span style="color: blue;">We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span><br />
<span style="font-size: medium;"><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span> </div>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-81056940570600907262014-02-21T09:55:00.002-08:002014-02-22T10:30:21.583-08:00Giuliana Lynn<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX_H9NDWMLRkqMVcL3gtz8lHOXaWcfAI_pWANYMen9VaQ5dsihYCE6yAq51ip5WkHnyCXFMyYsB7g0mAL0TmDqI7TpyjHQieK9JYINAwXy1Mc3RDvmNE2wCiZtY_1zn_4inhvoW88XyiQ/s1600/g1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX_H9NDWMLRkqMVcL3gtz8lHOXaWcfAI_pWANYMen9VaQ5dsihYCE6yAq51ip5WkHnyCXFMyYsB7g0mAL0TmDqI7TpyjHQieK9JYINAwXy1Mc3RDvmNE2wCiZtY_1zn_4inhvoW88XyiQ/s1600/g1.jpg" /></a></div>
<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C">Giuliana</span></h3>
<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C">Mosaic Trisomy 18</span></h3>
<h3>
</h3>
<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C">Born: August 2010</span></h3>
<h3 class="Heading-P" style="text-align: center;">
<span class="Heading-C"> </span></h3>
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<br />
<div class="MsoNormal">
This is the story of Giuliana Lynn.<span style="mso-spacerun: yes;"> </span>She was born in August of 2010 weighing 4lbs.
and 2.5 oz.<span style="mso-spacerun: yes;"> </span>My pregnancy with Giuliana
was relatively normal. It was another high risk pregnancy, not specifically
because of G but previous factors related to my other children. Once again this
meant making multiple trips to the doctor. I loved it though because abounding
ultrasounds revealed another amazing baby who would complete our family! The
only indicator that something could be off was that Giuliana was slightly
gestationally behind in size.<span style="mso-spacerun: yes;"> </span>The
doctors didn’t feel that it was of concern yet couldn't rule out issues. Either
way, nothing could have changed our course of action.<span style="mso-spacerun: yes;"> </span>We do not believe in genetic screening and
therefore would not have consented to the testing. Shortly after she arrived, the physicalities of genetic
anomaly were apparent. The doctors noted her birth weight was low, sternum was
short, fingers were slightly overlapping, and she had slight rocker bottom
feet. She was also in significant respiratory distress. It appeared that the
NICU fully intended to let her struggle it out on her own and therefore we
requested someone help her. At that point, Giuliana was intubated. Blood was then drawn and taken to the lab in order to
finalize a diagnosis. There were high suspicions that Giuliana had Trisomy 18
(Edwards Syndrome), a genetic condition that occurs in approximately 1/6000
live births. While waiting on the quick results, Giuliana was given a full
exam. It was discovered that she also had multiple cardiac defects.<span style="mso-spacerun: yes;"> </span>Giuliana was born with a large VSD, ASD, and
a PDA and 90% of babies born with trisomy 18 usually have some type of cardiac
defect. It now seemed obvious that Giuliana's anomalies were not coincidental,
but most definitely related to this syndrome to which we were unfamiliar.<span style="mso-spacerun: yes;"> </span></div>
<br />
After 24 hours, the blood work confirmed that Giuliana was
positive for full trisomy 18, meaning every cell in her body contained an extra
copy of the 18th chromosome. Upon the formal diagnosis, Giuliana was quickly
recommended to be removed from breathing assistance, even after we were
promised “time” with our daughter.<span style="mso-spacerun: yes;"> </span>We
asked the hospital staff for one more day with Giuliana. They reluctantly
agreed and we were also told to start preparing funeral arrangements. Her
breathing tube would be pulled immediately after her picture session and
Baptism the next day.
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There would be no alternatives, no reintubation. The order
had been staff made on her behalf, and we knew no better at that time that we
had choices to dispute.</div>
<br />
After her breathing tube was pulled, there were two options.
Live or die, and both depended on G. Evidence shows that if babies with trisomy
18 receive only comfort care while in the NICU then around 1/3 will die before
hospital discharge. Intubation well surpasses the simple intervention, like
oxygen, that is still often considered “invasive” for a child with trisomy 18.
Not fully understanding the resistive mindset or knowing that statistically a
baby like Giuliana who required breathing help and had a cardiac defect, should
not have made it home from the hospital, we held her and waited....
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fortunately, Giuliana was able to breathe on her own and our
hospital gave her a gradual respiratory step down to room air. Once G proved
she could handle breathing, we were finally given the newborn hearing and
vision assessment, as well as the infant car seat test. We were going to be sent home without any
"emergency" equipment and my husband and I were not at all
comfortable with that scenario. We requested(on more than one occasion) to discharge with
home use oxygen and a pulse oximeter. We eventually received our request
inadvertently realizing we had actually won a huge victory.<span style="mso-spacerun: yes;"> </span>Leaving the hospital with this ‘life saving’
equipment is also against the typical discharge protocol for trisomy 18.<span style="mso-spacerun: yes;"> </span>
</div>
<div class="MsoNormal">
“Take your baby home and love her” is the common catch
phrase.<span style="mso-spacerun: yes;"> </span>And of course, that was
easy.<span style="mso-spacerun: yes;"> </span>The difficulty was leaving the
hospital on day ten and being welcomed at home with a Hospice nurse and a Do
Not Resuscitate Order. Sadly this is also standard routine for trisomy 18
neonates because their condition is viewed by most professionals as futile.
Signing the DNR order is an unfortunate choice that parents, including
ourselves, are often unknowingly steered to walk. Once parents realize exactly
what accepting Hospice care means, they often choose to discharge from the plan
and lift the DNR. Still, doctors have consciously reinstated DNR orders even
against parental consent, and it happens all too frequently.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3RJa0B2EBl430BFw8hw7_nM8hM3FweanjCAtMGPvH314VmMJQxZ51M5ETH0tdODOl0r1zddqcVsYkeJ_IpoYhXlGM5hZonxGPSIMeayCJmyYZXea6YlAh55dygysRTRrT-sxEZ1rTngw/s1600/g2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3RJa0B2EBl430BFw8hw7_nM8hM3FweanjCAtMGPvH314VmMJQxZ51M5ETH0tdODOl0r1zddqcVsYkeJ_IpoYhXlGM5hZonxGPSIMeayCJmyYZXea6YlAh55dygysRTRrT-sxEZ1rTngw/s1600/g2.jpg" /></a></div>
<div class="MsoNormal">
For us, Giuliana was always a survivor.<span style="mso-spacerun: yes;"> </span>Why not? Someone's child had to be the 10%
that lived and we knew that was G. We knew she was temporarily strong, yet that
she would not live long without her heart being repaired. We were fully
prepared to do whatever Giuliana needed, without question. At that point we
didn’t realize we were battling a diagnosis with such immense stigma that we
would not only be fighting Giuliana’s health timeline, but the medical
community as well. We requested that she be recommended for a full cardiac
repair at our local hospital and we were blatantly denied. What we were
offered, was a variety of lies as to why our daughter could not have her heart
repaired.<span style="mso-spacerun: yes;"> </span>This denial is habitual for
trisomy 18 children. In fact, rarely will any early surgical repair be
suggested. Cardiac demise is part of the reason that only a small 10% of children
will live to see their first birthday milestone. New studies, however, show
that families who persist on and receive<span style="mso-spacerun: yes;">
</span>early surgical intervention could increase the first year survival rate
up to 18-25%. We were not going to let a refusal stop us, and we looked
further. We didn’t know a cardiac repair had to be 'case specific' because of
trisomy 18 and our instinctual approach to her care seemed to be what was
necessary in order to find her surgeon.<span style="mso-spacerun: yes;">
</span>Our quest to naturally interview surgeons and facilities continued daily
without cessation. We would have done this for any of our children and we did
not stop until we found someone we believed was qualified enough for OUR own
standards. Our surgeon accepted Giuliana as a baby with a cardiac need, and did
not view her as a diagnosis. At only 2.5 months old, we drove our family 23
hours to meet the cardio thoracic surgeon who would repair Giuliana's heart.
Before the surgery, the majority of the team (surgical & cardiology) voted
to call her surgery off.<span style="mso-spacerun: yes;"> </span>However, our
surgeon knew that it was our belief and right to give our daughter the best
possible chance to live a rich, full life with her family. He defended our
requisition as 'acceptable and educated' and without hesitation, repaired
Giuliana. Her heart surgery was incredibly easy and she recovered quickly. The
cardiac repair was by far the easiest surgery, mentally, we have ever given
Giuliana. Without fixing her heart, she would NOT be with us today.</div>
<div class="MsoNormal">
Once we were home, Giuliana continued to develop quickly and
just slighly behind ‘normal’ milestone markers. One of Giuliana’s specialists
was compelled to look deeper into her diagnosis because trisomy 18 is
classically characterized by severe developmental delays. In many cases, having
normal cells will increase the advantage of a child to develop on a more
regular developmental timeline. Revisiting the initial blood work showed her
original diagnosis was incorrect. G did not have full trisomy 18 but the lesser
and statistically more rarely occurring form of the diagnosis. Her new formal
diagnosis was trisomy 18 mosaic.<span style="mso-spacerun: yes;">
</span>Meaning, Giuliana had a portion of "normal" unaffected cells
in her body, and also those cells still fully "affected" by the extra
18th chromosome. No further blood or skin cell testing was ever done because
the desire to 'reconfirm' on our part, was insignificant. The words
"trisomy baby" or "mosaic trisomy" are merely labels to us.
We have always treated Giuliana as a person.<span style="mso-spacerun: yes;">
</span>A little girl<span style="mso-spacerun: yes;"> </span>who was fully
deserving of care, just like her siblings.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgopJCkLqz4BDwNWIUiJoUOUG8GCp-okYJVp2eH_Lgy6XSbZ4Ie5AtZX0b_h9T4pUs8Jf94Nq9GTAApuu9Wjg5la1tvjmBDJJBuLGKXAdqra-pAQyvGkIn8wwuxdJ2KpuC8-J1KXCvzwYo/s1600/g3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgopJCkLqz4BDwNWIUiJoUOUG8GCp-okYJVp2eH_Lgy6XSbZ4Ie5AtZX0b_h9T4pUs8Jf94Nq9GTAApuu9Wjg5la1tvjmBDJJBuLGKXAdqra-pAQyvGkIn8wwuxdJ2KpuC8-J1KXCvzwYo/s1600/g3.jpg" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Giuliana’s path was interrupted around the 10 month mark as
she began to suffer from food and laxative intolerances. The next full year
would require multiple surgeries, that at certain points, were life
threatening. None of these surgeries had anything to do directly with trisomy
18. However,<span style="mso-spacerun: yes;"> </span>assumptions always came
full circle back to the stigma that G was ill because of her trisomy diagnosis.
It was(and will likely always be) a continuous game. As parents, intuition and
attention to detail on her behalf, are what helped save Giuliana’s life.<span style="mso-spacerun: yes;"> </span>At the threshold, we personally switched her
diet to entirely gluten-free and rid her sensitive system of the harsh chemical
laxatives that were suppressing it.<span style="mso-spacerun: yes;"> </span>G
began to flourish again, but not without sustaining some lasting neurological
and physical setbacks.<span style="mso-spacerun: yes;"> </span>She has continued
to regain lost skills from her brush with chemical toxicity and we love that
each day she becomes all around more proficient.</div>
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<br /></div>
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Giuliana is now 2.5 years old and her special gift to the
world is her life. We are so pleased she can use her life to inspire others.
This gift of hope does not have to disappear after diagnosis is made, nor is it
shameful to continue to believe in possibility. G is living proof to this
statement.</div>
<div class="MsoNormal">
There has been many changes along the way, but for us
initially, all we wanted was a living face to see. We were told that no
children can survive with trisomy 18, and we now know this is 100% false! WE
now deliver the honor ourselves!<span style="mso-spacerun: yes;"> </span>Our own
beautiful Giuliana is gleaming, and we share her as the irrefutable face of
life that the ‘lethal’ diagnosis so flagrantly can not deny!<br />
<br />
<span style="font-size: medium;"><span style="color: blue;">We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span><br />
<span style="font-size: medium;"><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span> </div>
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<![endif]-->Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-20179130050353909952013-06-09T06:56:00.000-07:002013-06-09T06:56:13.943-07:00A mother's love!!<div style="text-align: left;">
<span style="font-weight: normal;"><span style="color: blue;"><span class="entry-title"><span style="color: black;"> I found this </span></span></span></span><span style="font-weight: normal;"><span class="entry-title">article on Google today, half when through the second paragraph I was in tears. What an amazing woman who's love for her son you can feel through her words. Many people will never understand our journey but other families walking it do. I hope this article will inspire you and bring you hope as it did me..remember to "Embrace Life One Moment at a Time"..Vanessa</span></span><b><span style="font-weight: normal;"><span style="color: blue;"><span class="entry-title"><b><br /></b></span></span></span></b></div>
<h2 style="text-align: left;">
<b><span style="font-weight: normal;"><span style="color: blue;"><span class="entry-title">To his mother, Trisomy 18 child in St. Petersburg is forever her perfect boy</span></span></span></b></h2>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjFVNL6MzF8TchYci3xtcEKjb77qAE_JWUsltjaocipFfcLDe30QZPKlSHVw6x2JMZrkEI2T2_DA6ElL-gPYEFeEf2-qY4ENgLHK9kmT6Ftb33_Ng0o23-uMZLhND-N0rzO-tb4j-p97o/s1600/A4S_mothersday051213_10740090_8col.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjFVNL6MzF8TchYci3xtcEKjb77qAE_JWUsltjaocipFfcLDe30QZPKlSHVw6x2JMZrkEI2T2_DA6ElL-gPYEFeEf2-qY4ENgLHK9kmT6Ftb33_Ng0o23-uMZLhND-N0rzO-tb4j-p97o/s320/A4S_mothersday051213_10740090_8col.jpg" width="320" /></a></div>
<div style="text-align: left;">
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<div style="text-align: left;">
For her, becoming a mother meant letting go of the things other moms
take for granted: seeing her son crawl, run and jump, hit home runs, go
swimming in the gulf.<span style="color: blue;"> </span>"I had to let that boy die," she says, "so Donnie could live." <a class="hasIcon dropDown" href="http://www.tampabay.com/writers/lane-degregory"><span class="authorName">Lane DeGregory, Times Staff Writer</span></a></div>
<br />
<span class="authorName">To read the full article click here <a href="http://www.tampabay.com/features/humaninterest/to-his-mother-trisomy-18-child-in-st-petersburg-is-forever-her-perfect-boy/2120234"> http://www.tampabay.com/features/humaninterest/to-his-mother-trisomy-18-child-in-st-petersburg-is-forever-her-perfect-boy/2120234</a></span>Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-41848472750524328752013-05-24T09:02:00.000-07:002013-05-24T10:01:53.260-07:00Jalyssa<div class="separator" style="clear: both; text-align: center;">
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<br />
<div style="text-align: center;">
<span style="font-size: small;"><b><span class="userContent">Jalyssa</span></b></span></div>
<div style="text-align: center;">
<span style="font-size: small;"><b><span class="userContent">Trisomy ~ 1 1/2 years</span></b></span></div>
<div style="text-align: center;">
</div>
<span class="userContent">I found out that I was Jalyssa had Trisomy 18
when I was about 24 weeks into my pregnancy. When I heard the news I was
devastated. I didn't really know how to feel because of what the
doctors were tellin<span class="text_exposed_show">g me. They told me
that she would die in utero. After I came back to my senses and realized
that they were practicing medicine and that God was the one and only
true physician I started to plan her life. On September 23, 2011 I was
induced and Jalyssa decided that she wasn't going to wait for the nurses
or any doctors to come into the room to be born. She fell out onto the
bed (good thing I was up on my knees.) She came into the world crying
and breathing on her own just as my other kids did. The day after she
was born the doctors told me to take her home and love on her because
she would pass within the next few days. I ignored that remark and was
determined to bring her home and love on her for as long as God would
allow me to. Jalyssa has had to have heart surgery, a tracheostomy
placed, and also a G-tube for feeding. She is now 18 months and doing
wonderful. I feel that because I have kept my faith in God and allowed
him to take over, I have been able to keep her for as long as I have. I
don't know how much more time he will give any of us here, but Jalyssa
has taught me to cherish each and every day that God wakes me up. She
has also taught me the true meaning of love. Thank you Jalyssa for
coming into our lives. We will cherish and love you always!!!</span></span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
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<br />
<div class="MsoNormal" style="text-align: left;">
<span class="userContent"><span class="text_exposed_show"> </span></span><span style="font-size: large;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span></div>
<span style="font-size: large;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span><br />
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Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com1tag:blogger.com,1999:blog-5701985433679899044.post-32494843014146694422013-05-24T08:47:00.001-07:002013-05-24T10:02:53.580-07:00Jillian<br />
<div class="separator" style="clear: both; text-align: center;">
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<br />
<h4 style="text-align: center;">
Jillian<br />
<div style="text-align: center;">
Partial Trisomy 13 ~ Age 6 <br />
</div>
</h4>
<div style="text-align: left;">
In honor of Trisomy 13 Day, I was asked to share Jillian's story. This is from my heart of hearts.</div>
<br />
Jilli was born 4/21/07. I knew nothing of her condition when she was
born; but , when she was I knew something was very very wrong. So many
tests where done. A Trisomy 13 marker was present. "Do not search this
on the internet," I was told by a genetics Doctor. I did. Heart break.
Devistation. Please God, don't take her from me. I cried beside her
for a long time. How can I tell her sister? How can I tell my family?
She had surgery at one month old. so many Doctors were coming in and out
of the hospital. Here is this label, here is that label. It seemed she
was leaving me little by little. Then some results came in saying she
was partial and not full Trisomy. What does that mean? I was told she
would never smile as she looked up and smiled. There is life here, they
cannot tell me that there isn't. So, I took her home and we started
therapies. OT, PT and speech...everything I could get her. At 9 months
she had cranial reconstructive surgery. They removed and reformed her
forhead. She had this beautiful zig zag scar across her head from ear
to ear. A little boy in Walmart said it was her CROWN! You see, she is a
princess too. The days followed, the months followed and then YEARS
followed. Jilli goes to school! Jilli loves her family! Jilli loves her
teachers, friends and pets. She walks, turns on her lights and opens
doors. Best of all, she smiles all day long. She is pure. Simply
pure. So when you see my posts about her and the prayer
requests for "my" other trisomy children. Please understand, you are
seeing my heart of hearts loving and fighting for these children. My
goal in this world is to change this label of trisomy. They are not
incompatible with life as the medical books say. If given a chance,
they change lives even if it for the briefest moment in time.<br />
<br />
<span style="background-color: red;"><span style="background-color: white;"><b><span style="color: red;">Jillian's mom Kara is the Administrator of Research and Support Services for Living With Trisomy 13</span></b></span></span><br />
<br />
<br />
<div class="MsoNormal" style="text-align: left;">
<span class="userContent"><span class="text_exposed_show"></span></span><span style="font-size: medium;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span></div>
<span style="font-size: medium;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span>Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-73719750966923061122013-05-24T08:24:00.000-07:002013-05-24T10:04:03.667-07:00Evan Parker August McCauley<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial,Helvetica,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-0W0caC1HSSv6_b7e5u_HEI2fkbhtWk7Z0jFwSypZbJphryVrlTH7Of0GpY3zuGdUzpzUoGg3hDpXONLGwwXUEI02yWNdH8wHELo52iE0lChiGuxx3O5xJJOHJKJ619jbHhvnuY3k2gE/s1600/evan+mom%2527s+camera+219.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></span></div>
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<div style="text-align: center;">
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><b><span style="color: black;">Evan Parker August McCauley</span></b></span></span></div>
<div style="text-align: center;">
<span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><b><span style="color: black;"> </span></b><span style="color: black;"><b>5 lbs. 6 oz. 17 1/4 inches <br />
March 5, 2012 6:11 pm to March 6, 2012 7:52 pm<br />
Full Trisomy 13 with the following abnormalities:<br />
cleft lip, cleft palate,
mild bilateral clubbed feet, bilateral pylectasis, and the </b></span></span></span></div>
<div style="text-align: center;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: black; font-size: x-small;"><span style="font-size: small;"><b>following heart defects:
double outlet right ventricle, transposition
of the great arteries, subpulmonary ventricular septal defect, pulmonary
valve stenosis, left superior vena cava, and dilated coronary sinus</b></span><br />
</span><br /><span style="color: black; font-size: x-small;">
</span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: black; font-size: x-small;">
</span></span><br />
<span style="font-family: inherit;"><span style="color: black; font-size: small;">At 24 weeks, we found out that our precious baby had <span class="yiv1629839242ecxsquiggly" title="To see spelling suggestions, click this word">
Trisomy</span> 13, and we had a choice to make. We chose to continue to
carry our baby, our little boy, Evan. We knew it would be the hardest
thing we had ever done. We did not know it would also be the most
rewarding.<br />
</span></span><br />
<div class="separator" style="clear: both; text-align: center;">
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<span style="color: black; font-size: small;"><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">Our family had the chance to love our baby and get to know him and each
other in ways we didn't know were possible. We now know a deeper love
than we had ever known...for Evan, for each other, and for God.<br />
<br />
We will cherish the memory of every movement, every kick, and every
hiccup we ever felt him make. We will smile every time we remember the
knock-knock jokes his brother, Owen, told him; the games of chase his
sister, Nadia, would play with him; and all the
songs we sang to him (especially "I Love You Like a Love Song, Baby.") I
will never forget how the kids would picture baby Evan "standing up in
there and dancing" as they sang to him in my tummy. Who knew you have
so much fun with a baby still in his mother's womb?<br />
<br />
<br />
We were prepared to never meet our Evan <span class="yiv1629839242ecxsquiggly" title="To see spelling suggestions, click this word">
outside</span> the womb. We thank everyone for their prayers; they were
heard and answered. The Lord gave us a little fighter, and He and Evan
gave us the most incredible 25 hours and 41 minutes anyone could ever
ask for. Our baby boy was absolutely perfect,
and I was even granted the opportunity to do "mommy things" with
him. I was able to wash his hair, change his clothes, feed him, change 3
diapers, and, best of all, both myself and my husband were able to
sleep with our baby in our arms. Many, many people
came to meet and hold him, and everyone looked at him with love and
awe; he was beautiful. Evan taught so many people so much in that short
amount of time. The day we spent with Evan was the greatest day of our
lives, and it will only be topped when we are
all together again.</span></span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"></span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><span style="color: black;">Evan, we love you more than we knew possible. You are now experiencing
an even greater love from your Father in Heaven, and that knowledge will
get us through this. We love you, Evan, and we are so very proud of
you!</span></span></span><br />
<br />
<br />
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: medium;"><span style="color: blue;"><span>We hope
these stories of children with trisomy will inspire you. From cleft
lips to contagious smiles, group of families are here to offer you
support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: medium;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13-memory.htm"><span style="color: red;">BACK TO TREASURE MEMORIES PAGE</span></a></span></div>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com1tag:blogger.com,1999:blog-5701985433679899044.post-64138510194840794202013-05-24T08:08:00.003-07:002013-05-24T10:04:32.865-07:00Matthew Yelton<div class="separator" style="clear: both; text-align: center;">
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<div class="separator" style="clear: both; text-align: center;">
<b>Matthew Yelton</b></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: black;"><b>Full Trisomy 18</b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: black;"><b>Born Sleeping November 19, 2010 </b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
My husband and I were married in June of 08, we knew before we were
married that we wanted children right away. Our first son was concieved
right away and born 9 months after our wedding... Around his first
birthday we decided to try for our second child. It took less then a
month and we were pregnant again!! we couldn't have been happier... At
20 weeks we went to our routine ultrasound hoping to find out what we
were having, they told us the baby was being difficult and they couldn't
tell if it was a boy or girl but also couldn't get good pics of his
heart... They told us to come back in 3 weeks and they would try again.
So we did, it happened that the afternoon of the second ultrasound I
also had an appt with my ob. When we had that ultrasound they didn't
say much of anything except that they still couldn't find his boy
parts... After the ultrasound my husband went back to work, and I went
on to see the ob. That was the first day we were told there could be
something wrong... The ultrasound showed problems with his heart and
face. She sent us to see a perinate. In the next few days I had made
so many phone calls and yelled at plenty of office people for telling me
the soonest they could get us in would be 3 weeks. How CAN U TELL A
MOTHER THERE IS SOMETHING WRONG WITH HER BABY AND THEN TELL HER SHE HAS
TO WAIT 3 WEEKS TO SEE THE DR!!!!! Needless to say we got in the next
week. With the perinate and a peds cardiologist we had a lvl 2
ultrasound and an echocardiogram done. The ultrasound showed many
markers for Trisomy 18, I had never heard of it. The echo showed he
(also found out it was a boy!!) had many heart defects. It was then
that they told us they recommended the amnio.. The perinate was very
composed about it and didn't give his opinoin until my husband asked, is
it fatal? Thats when we were told that yes it is fatal and given all
the markers, he didn't look good at all. We got the FISH back in 48
hours that was positive for Trisomy 18. and the full results back 2
weeks later. We connected wtih the palative care director and head of
hospice. In the meantime we went back to my OB, please note that I was
20 weeks, the second at 23 weeks, the amnio and lvl 2 at 24 weeks and
finally back in the see my ob at 25 weeks. She told us we should
terminate, that he wouldn't make it and we were only adding inconvience
to ourselves by driving to an even further hospital to continue our care
and give him the best chance possible!!! I NEVER WENT BACK!! I was
told by my new ob that I had a condition called Polyhydromosis (SP) ,
which meant I was going to get very big, (I was already measuring ahead)
because I had alot of amniotic fluid. He was supportive and behind us
all the way. Matthew made his early arrival at 33 weeks, very much so
alive and kicking right up until the end. We lost Matthew durring
delivery. There are so many what if's and regrets. He never had the
chance to fight. I love you Matthew Leon. We will never forget,
everything I do, I do for that lil boy!! A peice of my heart died that
day, it broke right off and went to heaven with my precious son. I know
that one day I will have that back, the day we meet again.</div>
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<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: medium;"><span style="color: blue;"><span>We hope
these stories of children with trisomy will inspire you. From cleft
lips to contagious smiles, group of families are here to offer you
support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span></div>
<div class="MsoNormal" style="text-align: left;">
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<br />Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-22042508533583379892013-05-24T07:49:00.000-07:002013-05-24T09:59:47.104-07:00Lillian Eva Hollowell "Little Firecracker"<!--[if gte mso 9]><xml>
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<br />
<div class="WordSection1">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjtchmoDulDRJO9On6N9ztwZazpwUgLCjhzVzKBOXQH8PE_LNPyU0-XfHHBwnf87_FT8VJht5qNoIv1JWHqTBM-NMV69V8JSIdppkoKeQLiDcjqQDVNaHndnB6TMXZ1WQl0dHDhBV-qNo/s1600/100_1071.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjtchmoDulDRJO9On6N9ztwZazpwUgLCjhzVzKBOXQH8PE_LNPyU0-XfHHBwnf87_FT8VJht5qNoIv1JWHqTBM-NMV69V8JSIdppkoKeQLiDcjqQDVNaHndnB6TMXZ1WQl0dHDhBV-qNo/s320/100_1071.jpg" width="320" /></a></div>
<div class="MsoNormal" style="text-align: center;">
<span style="mso-tab-count: 1;"> </span> </div>
<div class="MsoNormal" style="text-align: center;">
<b>Full Trisomy 18</b></div>
<b><span style="mso-tab-count: 1;"><span style="background-color: purple;"><span style="color: purple;"><span style="background-color: white;"></span></span></span></span></b><br />
<div style="text-align: center;">
<b><span style="mso-tab-count: 1;"><span style="background-color: purple;"><span style="background-color: white;">July 4, 2010 ~ </span></span></span><span style="mso-tab-count: 1;"><span style="background-color: purple;"><span style="background-color: white;">December 15, 2011 </span></span></span></b></div>
<br />
<br />
<div class="MsoNormal" style="text-indent: .5in;">
Lillian Eva Hollowell, was born on
Sunday morning, July 4, 2010.<span style="mso-spacerun: yes;"> </span>“Lilly”
lived a very full life for 17 months before passing away gently on Thursday,
December 15, 2011. Her entire life was a glory to God.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Our “Lilly Sunshine” had an intense
will to live which she showed from the start.<span style="mso-spacerun: yes;">
</span>She was motionless, breathing weakly, for the first hour after being
born, but then let out a big cry, and let us know she wanted to stay.<span style="mso-spacerun: yes;"> </span>It being Independence Day, she got the
nickname “Little Firecracker.”<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Due to a genetic condition called
Trisomy 18, or Edwards Syndrome, she had heart damage and a very weak immune
system.<span style="mso-spacerun: yes;"> </span>She got very sick and had to
fight very hard for her life a number of times.<span style="mso-spacerun: yes;">
</span>However, she was well more often than sick, and a very happy little
girl.<span style="mso-spacerun: yes;"> </span>She loved her family and her daily
routine.<span style="mso-spacerun: yes;"> </span>She was quick to smile, very
content, and loved life.<span style="mso-spacerun: yes;"> </span>Lilly blessed
countless lives and touched many hearts.<span style="mso-spacerun: yes;">
</span>We are all better people because of Lilly.<span style="mso-spacerun: yes;"> </span>We rejoice that she is now perfect and whole
and in the arms of Jesus.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Lilly’s family misses her greatly
and looks forward to the day we will see her again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Lilly’s proud parents:<span style="mso-spacerun: yes;"> </span>Frank and Lisa Hollowell, sister Tabitha (10
years), and brother Hunter (3 years).<span style="mso-spacerun: yes;">
</span>The family lives in Fuquay-Varina, North Carolina.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Lilly’s blog has readers from all
over the world:<span style="mso-spacerun: yes;">
</span>www.pray4lilly.blogspot.com</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="tab-stops: center 3.25in;">
<span style="mso-tab-count: 1;"> </span>-
- - -</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
The above is a modified version of
Lilly’s obituary.<span style="mso-spacerun: yes;"> </span>I wanted to add some
details about Lilly’s life, which I thought would be of interest to other
Trisomy families.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
We first learned that Lilly might
have Trisomy 18 during a <span style="mso-spacerun: yes;">
</span>Soft markers were identified: she was a very small size and low weight,
she had clenched hands, a heart defect, a spot on the brain, there was lots of
amniotic fluid, and the umbilical cord had only two arteries instead of
three.<span style="mso-spacerun: yes;"> </span>After a couple more ultrasounds,
I agreed to have an amnio.<span style="mso-spacerun: yes;"> </span>We wanted to
confirm one way or the other, so we could better work out a plan with doctors
for delivery.<span style="mso-spacerun: yes;"> </span>(I had a midwife but
doctors got involved with us once Lilly’s problems were identified.)<span style="mso-spacerun: yes;"> </span>Once the amnio confirmed Lilly had Trisomy
18, the doctors took a hands off approach.<span style="mso-spacerun: yes;">
</span>Lilly was in Frank breech position and the doctors amazingly even gave
permission for her to be born naturally.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguwzP2LChyphenhyphen3rHxwx8eUEbyMKVSKEMxingweOJ2sgqUvpBgEwDKS2ed7agchpkzjbgOg8_BFDiLzS2LUY5uaJR9KEipB9viUrS-zhWe_vxv9EAwQDhYyuMEPYVgicSxAZBpKApS9FalZZM/s1600/100_1402.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguwzP2LChyphenhyphen3rHxwx8eUEbyMKVSKEMxingweOJ2sgqUvpBgEwDKS2ed7agchpkzjbgOg8_BFDiLzS2LUY5uaJR9KEipB9viUrS-zhWe_vxv9EAwQDhYyuMEPYVgicSxAZBpKApS9FalZZM/s320/100_1402.jpg" width="320" /></a></div>
routine ultrasound.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
My labor and delivery with Lilly
was quick - only 1.5 hours total.<span style="mso-spacerun: yes;"> </span>She
was born breech after only a few minutes of pushing.<span style="mso-spacerun: yes;"> </span>She was barely breathing and motionless for
about an hour and then really came to life.<span style="mso-spacerun: yes;">
</span>She was able to drink well from a bottle.<span style="mso-spacerun: yes;"> </span>Doctors let us leave the hospital within six
hours (unheard of!) so we could take Lilly home to meet her siblings.</div>
<div class="MsoNormal">
<br /></div>
</div>
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><br clear="all" style="mso-break-type: section-break; page-break-before: auto;" />
</span>
<br />
<div class="WordSection2">
<div class="MsoNormal" style="text-indent: .5in;">
Six days later, Lilly had a number
of episodes on afternoon where she stopped breathing and turned blue.<span style="mso-spacerun: yes;"> </span>My husband had to blow in her mouth and nose
to bring her back.<span style="mso-spacerun: yes;"> </span>Then episodes stopped
and never returned.<span style="mso-spacerun: yes;"> </span>We briefly had
hospice service but then cancelled after a couple weeks.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Lilly’s heart had a large hole and
she just didn’t have the strength to drink breastmilk from the bottle like she
needed to.<span style="mso-spacerun: yes;"> </span>She started losing weight and
seemed to be in pain off an on.<span style="mso-spacerun: yes;"> </span>When she
was two months old, we traveled to Wolfson Children’s Hospital in Jacksonville,
Florida for help.<span style="mso-spacerun: yes;"> </span>(We live outside
Raleigh, North Carolina but could not find the help we needed here.)<span style="mso-spacerun: yes;"> </span>At Wolfson’s doctors put Lilly on an NG
feeding tube and pump and she began gaining weight again.<span style="mso-spacerun: yes;"> </span>Lilly needed VSD repair but she was just too
weak, so a pulmonary artery band was put on her heart.<span style="mso-spacerun: yes;"> </span>We brought Lilly back home and she really
began improving.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
During Lilly’s life she had two
viruses, both of which nearly killed her.<span style="mso-spacerun: yes;">
</span>But to the doctor’s surprise, both times, she fought her way back to
health.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Lilly had a g-tube placed and when
she was old enough, I put her on a diet of blenderized real foods.<span style="mso-spacerun: yes;"> </span>That helped her to thrive.<span style="mso-spacerun: yes;"> </span>She also had both occupational and physical
therapy each week and she loved that.<span style="mso-spacerun: yes;">
</span>She was a hard worker.<span style="mso-spacerun: yes;"> </span>We had
hoped to start therapy to help her learn to eat by mouth.<span style="mso-spacerun: yes;"> </span>(She only liked eating coconut oil by mouth.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
In November 2011 we returned to
Wolfson Children’s Hospital and Lilly had surgery to repair her VSD.<span style="mso-spacerun: yes;"> </span>We found out at that time that her heart had
two holes instead of one.<span style="mso-spacerun: yes;"> </span>Lilly
recovered quickly and was out of the hospital in 9 days.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR3kA_dyBxUmeE8miquX8aan6cnplFGSaEcuhMcR5o5g3rc-AddOW0v-d7YZSbVYXXaMrkNXaZKYwpQ28rUsGt2mzEi4VQPRXOiOeTrlKD4VSNtHpFNz6GcdezFFenrjjNz5Uiy5yqeaU/s1600/100_1362.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR3kA_dyBxUmeE8miquX8aan6cnplFGSaEcuhMcR5o5g3rc-AddOW0v-d7YZSbVYXXaMrkNXaZKYwpQ28rUsGt2mzEi4VQPRXOiOeTrlKD4VSNtHpFNz6GcdezFFenrjjNz5Uiy5yqeaU/s320/100_1362.jpg" width="320" /></a></div>
<div class="MsoNormal" style="text-indent: .5in;">
On December 5, Lilly’s breathing
was odd off and on during the morning.<span style="mso-spacerun: yes;"> </span>I
took her to the emergency room and asked for a chest x-ray.<span style="mso-spacerun: yes;"> </span>It revealed white spots in the chest.<span style="mso-spacerun: yes;"> </span>One doctor suggested heart failure but her
cardiologist said her heart was functioning normally.<span style="mso-spacerun: yes;"> </span>I took Lilly home and started nebulizer
treatments.<span style="mso-spacerun: yes;"> </span>Lilly saw her pulmonologist
two days later and the white spots had become a white mass behind her
heart.<span style="mso-spacerun: yes;"> </span>However she was acting just fine
so we went back home.<span style="mso-spacerun: yes;"> </span>She started an
antibiotic, continued nebulizer treatments, and I kept a pulse ox hooked to her
when she slept.<span style="mso-spacerun: yes;"> </span>She continued to act
like she was feeling fine.</div>
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<div class="MsoNormal" style="text-indent: .5in;">
On December 15, Lilly seemed to be
feeling extra good.<span style="mso-spacerun: yes;"> </span>She had physical
therapy and her therapist remarked that Lilly seemed to be the most energetic
she had been since coming home from heart surgery.<span style="mso-spacerun: yes;"> </span>I took a video late that morning of Lilly in
her bouncy seat playing with her animals hanging from the arch, and posted it
on her blog.<span style="mso-spacerun: yes;"> </span>Later that afternoon, my
husband came home early because he had had a dentist appointment.<span style="mso-spacerun: yes;"> </span>I had him put Lilly down for her nap for me.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
She never woke up.<span style="mso-spacerun: yes;"> </span>When I went to get her up that evening, she
was dead.<span style="mso-spacerun: yes;"> </span>Paramedics came and tried to
revive her.<span style="mso-spacerun: yes;"> </span>But she was already in
heaven.<span style="mso-spacerun: yes;"> </span>We were honestly surprised she
passed away that night, but we continue to thank God that He took her so gently.</div>
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</span>
<br />
<div class="MsoNormal" style="text-indent: .5in;">
We had 529 glorious days with Lilly
in our arms.<span style="mso-spacerun: yes;"> </span>We are so grateful to God
for every second.<span style="mso-spacerun: yes;"> </span>What an amazing little
girl she was and what a blessing to us and so many others!<span style="mso-spacerun: yes;"> </span>Thank you God for creating Lilly to be our
daughter.</div>
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<br />
<h4 class="MsoNormal" style="text-align: center;">
<b><span style="mso-tab-count: 1;">To follow Lilly's family and what they are doing now please visit her blog</span></b></h4>
<h4 class="MsoNormal" style="text-align: center;">
<b><span style="mso-tab-count: 1;"></span><a href="http://www.pray4lilly.blogspot.com/">www.pray4lilly.blogspot.com</a></b></h4>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: large;"><span style="color: blue;"><span>We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children bring
joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa</span></span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: large;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13-memory.htm"><span style="color: red;">BACK TO TREASURE MEMORIES PAGE</span></a></span></div>
Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0tag:blogger.com,1999:blog-5701985433679899044.post-58519706648830455922013-05-19T12:48:00.000-07:002013-05-24T10:03:14.886-07:00Luke Mengel<div class="separator" style="clear: both; text-align: center;">
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<h2 style="text-align: center;">
<span style="color: #073763;"> Luke's story; Written by his Dad Saturday; December 15, 2012</span></h2>
<span style="color: purple;">Here is a lovely story of a child diagnosed with Mosaic Trisomy 13 in his teenage years. I hope that this story will bring faith and encouragement of survival to many parents facing a difficult diagnosis. </span><br />
<span style="background-color: white;"> <span style="color: #3d85c6;"><i> </i></span></span><br />
<h3>
<span style="background-color: white;"><span style="color: #3d85c6;"><i>Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith.- Author Unknown</i></span></span></h3>
<h3>
<span style="background-color: white;"><span style="color: #3d85c6;"><i> </i></span></span></h3>
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<span style="background-color: white;"><span style="color: #3d85c6;"><i> </i></span></span>Luke was born on Thursday June 30th, 1994 in Rio Rancho, NM. <br />
<br />
My beloved wife Linda came into the living room saying she thought her
water broke. "It's too soon!"... seven weeks too soon. We had had a
difficult pregnancy, this one a surprise. We had at the time our two
other sons, then 13 and 11.We had been worried about all her swelling and water weight, she was
very uncomfortable. Doctors had wanted to do an amniocentesis but we decided not to do this as we were determined to keep what God had
given to us to raise, and there were risks to the baby. She was 39 at
the time and the doctors were concerned about the baby..<br />
<br />
We rushed to the hospital, Luke was born within the hour. He came in at
a solid 2 lbs 12 oz! Such a tiny life God had given to us. Our other 2 sons came in at almost 9 lbs (despite my petite wife! she
was just shy of 105 when we married ). At the same time, my wife's
liver shut down... they rushed Luke to the NICU and my wife to another
room. I was shuffling between the two.. did not sleep very much for 2
days. My wife stabilized 2 days later, her liver was recovering. She had had pre-eclampsia toxemia.. She had not held Luke yet. Luke was in the NICU on oxygen.. he was tiny! He was shaped differently
than our other two boys. His feet were oddly shaped and appeared to have big toes that were definitely different.. He also had a tiny sixth digit on his right hand just adjacent to <br />
his pinky. His head was different (still is!) but all the rest of his
parts looked normal. He was breathing on his own but needed some help with oxygen. Other than that he was just tiny..<br />
<br />
We named him Luke after the Dr. Luke in Scripture. The Nurses called him Luke skywalker.. the nurses were wonderful. For the next 44 days we watched Luke prosper.. my wife was pumping milk into hundreds of tiny bottles.. Luke was being fed for the first week or so by gavage along with the tiny bottles.. later came my wife's breasts after Luke got a bit stronger. Luke's doctor (neonatologist) was a homeopath and we did nothing very special with Luke other than hold him as much as possible<br />
and feed him whenever he wanted.. he needed to grow!<br />
<br />
44 days later we brought Luke home on oxygen and a long tube.. He was a solid 4 lbs. We treated him like we did when the other two were young..as a growing precious son. None of our boys really
slept through the night for 2 years.. Luke was no different, but had to
be fed much more often. He began to grow.. but at a different rate, way
off the chart.. but following the shape chart for the most part.<br />
<br />
Luke began to crawl (very odd crawl using his head as a balance point,
he wore the hair off his head where it touched the floor..) very late
and began to walk (wobbly) at ~15mo... and babble.. he was trying to
talk but few could understand him.. but my wife. Luke was breast fed for over 2 years..<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVa26jH-Fw4SPq4FgXQr8euc2xorvODc6QUDjBVhcuQSby3i8Djgn5PM0uzCMK2hQXdiGgH2JHdBg2gmHhtkGHhhWuGw1hFSshJjtvQKykZUd8tQRJyc9404SZbn92NNY_M_xOd1RMIaA/s1600/Luke_bath+003.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVa26jH-Fw4SPq4FgXQr8euc2xorvODc6QUDjBVhcuQSby3i8Djgn5PM0uzCMK2hQXdiGgH2JHdBg2gmHhtkGHhhWuGw1hFSshJjtvQKykZUd8tQRJyc9404SZbn92NNY_M_xOd1RMIaA/s320/Luke_bath+003.jpeg" width="320" /></a></div>
<br />
<br />
Luke grew slowly, at 2, because of my work, we moved to Virginia. Linda began to see that Luke was not progressing like the other 2 boys.. and was concerned about his growth and boy! was this kid
wound up... he never stopped... She called the School System and they
suggested a visit by an Early Intervention speciallist. Luke began
pre-school, kindergarten, and then 1rst grade (twice). IEP's started.
Preliminary Psychological exams showed Luke was MR (Mentally Retarded
(old term back then), Intellectually Delayed ). They wanted him in an
MR class.. we fought this with the School system and had Luke
mainstreamed.. This was a boon! Luke learned, albeit slowly... we
worked with Luke extensively on his school work EVERY day..<br />
<br />
...skip several years... Luke went through Elementary, Middle School and First year of high school...) Luke was passing his SOL's, played soccer, played the trumpet (mainly by ear..)... BUT was
almost always socially inept and mercilessly picked on (he was still
VERY small). And extremely active... he was also very moody.He had great difficulty in crowds and in social situations. We could
never have company at home as he acted out all the time. Because of his
activeness his pediatrician and several psychologists thought he was
severely ADHD.. Luke was on Concerta for over 8 years.. there were side effects, anger etc.. He also stopped growing. 7th grade. We went to
endricrinologists.. nothing we can do..something in his genes, Luke
will always be the height he is for the rest of his life (almost 5 ft
tall). Luke began to get into trouble at school, was very angry all the
time and <br />
began to do very odd things. <br />
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<br />
June, Summer of 2011. Luke just out of his first year in High School.
He wrestled in the 112 lb class (because he was so small). He really never won a match.. but gave it his all! He moves very
stiffly.. Because he was the only 112lb kid and wrestled varsity, he actually lettered. HE also marched in the marching band playing
trumpet.. but he was socially inept. Kids still picked on him and he struggled to be part of any group he could get his head into.. Long story short.. he became extremely unstable Mentally and did very dangerous harmful things and acted in bizzare ways... <br />
<br />
In June of 2011 Luke was admitted to a Child and Adolescent Psychiatric Unit and then a residential school where he continued High School. He was diagnosed with severe mood disorder NOS. The
doctors did not know what to do with Luke.. he was not responding to any
of the psychotropic drugs, and None of the cognitive therapies were
working.. One of the Psychiatrists noted that Luke "looked" odd and had a
notable childhood.. he suggested we try to have genetic testing done.
In Sept of 2011, after a long wait for an appointment we had Luke tested
at the University of Virginia Genetic Lab. A month later tests came
back showing several genes had issues... they wanted to sequence<br />
more and requested another blood sample from Luke in March of 2012.
Note: (Getting Luke to and from the appts was a real nightmare) After the second testing late in March.. we got a frantic call from the Genetics lab.. <br />
<br />
Note: I then worked for the University of Virginia as an IT Systems Director...<br />
<br />
Ring.. ring... Hello? "Mr. Mengel, this is the Genetics Lab. We have
some unexpected results from the testing, we need to see you on
Monday.."My mind is running...This was an alarming call as normal results take 5
-10 weeks to get the results.. and appointments took months... and they
wanted to see us on Monday!? What are the unexpected results? " We will tell you this on monday.."
Can't you give me some idea? " Well... long pause.." We have found an unexpected result and have run the tests twice on both samples of your
sons blood..." long pause.. " we have found your son has genetic <br />
disorder called Mosaic Trisomy 13, we will explain this to you on Monday. Do NOT bring Luke." <br />
Ok.. thanks... my mind is racing.. what the hell is Mosaic Trisomy 13.<br />
<br />
So, I'm an IT guy.. I search for "Mosaic Trisomy 13" .. With tears in my
eyes and a shaky voice I call my wife.. shocked. I could not work.. I
packed my things and went home.<br />
<br />
Monday, we met with the Geneticist. They had neglected to run a simple
Karyotype test as a base line, this test was run several times on at
least 2 blood samples months apart.. as they could not believe the
results. They indicated that they had never seen a LIVING 17 year old
with Mosiac Trisomy 13 and that Luke was especially rare.. We were told
it is not our fault. It explains ALL of Luke's problems..<br />
<br />
I called Luke's Psychiatrist at the Treatment Center to give him the
news.. Doctor, Luke has been diagnosed with Mosaic Trisomy 13. "What!
No, this cannot be correct..." I said: Here is the Doctors number..
please call her. .... He called and recognized that there are things
he did not know.. <br />
<br />
We had extensive Cardiologic exams..after this devastating diagnosis.
Luke is completely normal. Luke is currently awaiting MRI testing. His
EEG's show some abnormalities.-<br />
<br />
Luke was on almost every psychotropic drug.. except one.. that they were
afraid to begin. Luke did not improve, but exhibited ALL the massive
side effects of these drugs.. We learned the hard way that
Psychiatrists were just making educated guesses as to what "might"
work.. Well, just at the tail end of Luke's stay at the Child
Adolescent Treament center, they tried the LAST drug.. Lithium. It
worked! <br />
<br />
Today, Luke is at a special school called Grafton School in Berryville
Va. We had to move him there after he turned 18 (we obtained
guardianship through the courts). He is somewhere between a Sophomore
and Junior in High School.<br />
<br />
Also, of note. At Grafton the Psychiatrist, more of a progressive sort.
Had us participate in a pilot program called GenoMind to see if we
could refine Lukes medication regimen. She was also weary of Lithium..
The tests confirmed that Lithium was the ONLY drug that could have
possibly helped Luke ... wow.. (see <a href="http://www.genomind.com/" target="_blank">www.genomind.com</a>).<br />
<br />
He has not been home in over a year. <br />
<br />
We will be trying to bring home Luke for Christmas this year (2012)! We
tried last year too (while he was in another Residential treatment
Center)<br />
but it did not work out.. Luke melted down and ended up back in the
hospital. NOTE: I have much to say about the treatment of those with
Mental Health disorders.. something is just not right in this world we
live in..<br />
<br />
<br />
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<br />
<br />
Anyway.. We are joyful that God has given to us this son. Sometimes this joy is painful (I don't know how else to say this).<br />
We do not think that Luke will ever be able to come home full time any
longer.. but have high hopes that he can learn a vocational <br />
skill and live in a group home where he will prosper. He is a living Angel! God has special things in mind for Luke!<br />
<br />
Hope this helps someone here.. these Angels do live!. We would be willing to talk or correspond with anyone.<br />
<br />
I am becoming very active in NAMI, ARC of Virginia, Mental Health
Association of Fauquier County, Department of Social Services... various
School related concerns.. I am a Parent Advocate. I support agencies
that help people with needs obtain resources like the Virginia Office of
Protection and Advocacy (VOPA). I am also 56 years old.. We are on
the medicaid id waver wait list.. Obtaining services is a REAL problem.<br />
<br />
May God bless all those with Angels! Both living on this earth and those with God.<br />
<br />
Guy and Linda Mengel ( guy@eastroad.org )<br />
<br />
You can see many of our family pictures here: <a href="http://www.flickr.com/photos/bombadillo" target="_blank">http://www.flickr.com/photos/bombadillo</a><br />
<br />
<br />
Summary: Luke: Age 18<br />
Mosaic Trisomy 13<br />
Hearing impaired both ears<br />
Slight Deformities in feet (rocker bottom, toes overlap)<br />
Mildly ID (68)<br />
Severe Mood Disorder (NOS) organic<br />
<br />
<br />
<div class="MsoNormal" style="text-align: left;">
<span class="userContent"><span class="text_exposed_show"></span></span><span style="font-size: medium;"><span style="color: blue;"><span>We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. </span>It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa</span></span></div>
<span style="font-size: medium;"><span style="color: blue;"></span><a href="http://www.livingwithtri13.org/trisomy-13.htm"><span style="color: red;">BACK TO LIVING MIRACLES PAGE</span></a></span>Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com2tag:blogger.com,1999:blog-5701985433679899044.post-82336621909567599522013-02-25T15:15:00.001-08:002013-02-25T15:15:29.254-08:00Prayer Requests<div class="heading-wrap">
<h2 class="recito" style="text-align: center;">
A PRAYER FOR A SICK CHILD </h2>
<h2 style="text-align: center;">
</h2>
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<h2 class="text16" style="text-align: center;">
St. Gerard, who, like the Saviour,
loved children<a href="http://www.blogger.com/blogger.g?blogID=5701985433679899044"> </a>so tenderly
and by your prayers<a href="http://www.blogger.com/blogger.g?blogID=5701985433679899044"> </a>freed many from disease and even death,
listen to us who are pleading for our sick child.
We thank God<a href="http://www.blogger.com/blogger.g?blogID=5701985433679899044"> </a>for the great gift of our son/daughter
and ask Him to restore our child to health
if such be His holy will.
This favour, we beg of you
through your love for all children and mothers.<br />
Amen. </h2>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirR5WKLvqAQ773ZrWCDwAtrw5yoRSD2JdFwFOWFfxkIn1wX3a5apczWPO8tz_EPwZy-ZgDUqVTVeSxuQ7RzDbPCc5etzSWHlwLWK4Z1eJ23ZwR_-6G1TWBjEd7rbUOq1MzJRRtnDheyuE/s1600/prayer.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="338" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirR5WKLvqAQ773ZrWCDwAtrw5yoRSD2JdFwFOWFfxkIn1wX3a5apczWPO8tz_EPwZy-ZgDUqVTVeSxuQ7RzDbPCc5etzSWHlwLWK4Z1eJ23ZwR_-6G1TWBjEd7rbUOq1MzJRRtnDheyuE/s400/prayer.jpg" width="400" /></a></div>
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Thank you dear Lord Jesus, for the gift of our children. You have graced us<br />
beyond our comprehension. Please guide us in the care of these Treasures. Give<br />
us wisdom to make the best decisions for them. Give us patience and charity so<br />
that we can advocate for your precious ones. Give us fortitude, so that we will<br />
not give up before it is time. Give us peace when our hearts our troubled with<br />
worry. Bless our children with all that they need in this life.<br />
And for our children who have gone to be with You, thank you for holding them<br />
in eternity as tenderly as we held them on earth.<br />
<br />
I asked our families this week to let me know if they would like to add a prayer request for their child. Many parents responded to my request. I will list all the requests below but I would like to acknoweledge one request first.<br />
<br />
<b><span style="color: purple;">Sweet Presley's mom had asked for prayers for her son here is what she wrote..."</span></b><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><b><span style="color: purple;">Presley
is trisomy 13 and is in the hospital. He's 16 weeks old and down to
4lbs. The doctors gave up on him and he's fought so hard but with no one
helping in his fight his poor body can't do it alone. Please pray for
peace and no more suffering."...Sadly baby Presley gained his wing before I was able to publish this weeks blog post. I am now asking that you prayer for his family for comfort and peace as they embark on the next step of their journey.</span></b></span></span></span><br />
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<ul>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]">Prayers for Brilen who is currently hospitalized</span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]">Nathaniel
Johnson (Trisomy 13) has been taken by the state and put in a foster
home. Mom has only seen him once in 5 months. Please pray that he will be home with his family soon.</span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]">Tiffany Lauren Williams 24 prayers for her to keep up her oxygen levels up</span></span></span></span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]">Pray
for Natasha her heart later is getting low and mom is scared and asks for prayers to keep her out of the hospital</span></span></span></span></span></span></span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]">Angel is hospitalized with RSV and is having a rough time recovering</span></span></span></span></span></span></span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]">Prayers for Trinity that she will be able to wean off the vent and be home with her family</span></span></span></span></span></span></span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]">Audrey Olivia...She's in the hospital with an RSV and is back on oxygen</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0.[0]">Please
pray for Kaela Stobbe age 15mos Full T18...not sick at this moment but
lower 02 Sats a lot lately and more tired..concerned she is starting
resp failure....she has a large VSD and 3 ASD's with pulmonary
hypertension...cannot repair heart...also a Thyroglossal cyst that is
growing</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0.[1]">Wassim is in the hospital after cardiac arrest early this week</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></li>
<li><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0.[1]"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0.[1]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2].0.[0]">Please
pray for Owen Tidwell. He is six months and if he can make it to Monday
it will be the longest stretch not in the hospital since he was born.
Today his color looks off even though his sats are good so pray he is
not getting sick again</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></li>
</ul>
<span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0.[1]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455000114551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455000114551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455000114551}.0.[1].0.[1].0.[0].[0][2].0.[2]">Prayers for comfort for all the families that are currently pregnant and just received the Trisomy diagnosis. There are many other children that are in need of prayer that are sick and hospitalized, please remember them all in your daily prayers.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200388}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[100].[1][2][1]{comment397735206988848_2200119}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454894209551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151454925869551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455063574551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455252434551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455253034551}.0.[1].0.[1].0.[0].[0][2].0.[1]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455258929551}.0.[1].0.[1].0.[0].[0][2].0.[0]"><span data-ft="{"tn":"K"}" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455000114551}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455000114551}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[1].[1][2][1]{comment10151454889744551_10151455000114551}.0.[1].0.[1].0.[0].[0][2].0.[2]"><b>Next week we will feature some great FREE resources and products for special needs children. Until then....Embrace Life One Moment at a Time!</b> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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Living With Trisomy 13http://www.blogger.com/profile/06433004942535495256noreply@blogger.com0