[tri-med] Re: trisomy 18--jo

Hi Jo:

You're doing just fine. I don't mind that you replied directly to
me. Normally all you have to do is hit reply and sent it back to
the list because a lot of the issues we deal with apply to many
on the list. Let me know if its okay and I'll forward your email
to the list.

So you are in Nashville right now? Its so hard to be in a new
place and to be going through the stress that you are
experiencing. I imagine that your husband's family doesn't mean
to be cruel but they fell helpless and don't have a clue what to
do or say.

What 3 birth defects (or markers) did they find with your son?
With my daughter they found a 2 vessel cord (instead of 3), small
gestational age, and choroid plexus cysts on the brain. Those
things, combined with my age (I was 40) gave them reason to be
concerned. As it happened their concerns and suspicions were
correct and Kristina was diagnosed with Trisomy 18.


At first when I learned of her dx I felt like I was inhabited by
an alien creature - they described the situation in such horrible
terms. At first I only wanted the pregnancy over with - something
I would never have believed I would choose.  We were told that
trisomy 18 is incompatible with life also and we wanted our lives
back.

We prayed about what we should do and I still felt no comfort.
That night, it suddenly occurred to me to go search the internet
and there I learned of families with children that have trisomy
18 and of families that had lost their precious angels.  At that
moment this alien creature suddenly became my daughter again and
I knew that she had been sent to me for a purpose. That she chose
us as her parents because she knew that we would make the right
decisions for her. This gave me hope and from there I tried to
focus on the possibilities rather than the grim future that the
dr told me was a given.

I decided that if her life was to be brief then it was up to me
to help her accomplish her mission here on earth. When people
asked about my baby and pregnancy as they all do when you are
walking around pregnant - as hard as it was I would tell them her
story. It was important for me to let others know about this
brave girl who had come here knowing what her circumstances in
life would be. I found that she was an inspiration to all who
learned about her. She was bringing out the best in people.

That doesn't mean the time was easy. Some days I just couldn't
face any one - and on those days I didn't go anywhere. With 4
boys to care for it was difficult to just give up, but somedays
thats exactly what I did. Then Kristina would wiggle and remind
me that she was still here and was excited about her future. That
got me through the long days and even longer nights.

There were many people celebrating the day Kristina was born. To
all of us she was (and is) our little miracle.

There is a lot to her story, but as far as her condition and
abilities go. She has a trach because of obstructive apnea when
she was 3 1/2 months old - her airway would collapse when she
slept and although she never stopped breathing for long - it was
happening so often that the drs felt the trach would be the
safest thing for her.

At first she was fed partially by bottle and part by ng tube (a
feeding tube in her nose). We battled over wills for quite
sometime. She just wasn't interested and would tire easily. At 6
months she had a g-tube placed. That was a wonderful decision!
Life and feeding were much easier after that.

Kristina has been very healthy - her first winter she had a
respiratory infection several times. But in the past year she has
only been sick a couple of times. She was born with club feet and
last October she underwent surgery to correct them. It was very
successful.

Due to a mild to severe hearing loss she has a hearing aid and
has developed a lot since December when she was finally able to
hear clearly.

She sits with assistance. Takes nothing by mouth. Makes lots of
different sounds and signs Daddy and Mommy (sometimes). She is
absolutely the light of my life. I wouldn't trade her for
anything in the world - she is an absolute delight to be with.
She is happy and doesn't complain and whine like a lot of kids
do. When she is unhappy, there is usually a good reason.

Sorry to go on so long - I just wanted you to know that I do
understand what you are going through. Email me anytime if you
want to talk more. I'll even send you my phone number if you
would like. Also, I can email you are picture of Kristina if you
are interested.

With your permission I will forward your email and my response to
the list because as I mentioned there are a lot of people
traveling a similar path. The great part about it is that we can
help each other. You've come to the right place - this is the one
group that will understand.

All the best,
Terre
Mom to Kevin - 15, Keith - 12, Kenny - 9, Korey - 7, and
precious Kristina Rachel - almost two full of giggles and
wiggles!(T18)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Terre Krotzer
E-mail: rlk@xxxxxxxxxxxxxx
Let us help you Achieve Your Dreams Today!
www.trytimefreedom.com

Blaze your own trail - don't wait for others to clear the path.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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