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Natalia with her “Hippo
Therapy” (Therapeutic Horseback riding) certificate. – Halloween 2006 (age 6) “Butterfly Princess”:
Update 1-20-07:
Natalia began the New Year at a new school. She is now back within the local
District program in 1st grade. She's now taking the bus and using her walker at
school. She has vision, speech, OT, PT, O&M therapies within her program. Using
the Reverse-K walker has enabled us to get a one on one aid with her throughout
the day, so she is not in the lowest level program, but in one where the kids
are ambulatory and where she can reach her full potential. Its been a good
transition, I'm very happy to be receiving the services we need for her, She
loves the bus, I love the break from driving 2
hours a day and all seems very good at this point in our lives.
She has a few new tricks...She can now stand up against a wall and with some
prompting, "1,2,3, GO!" She'll take 3-6 steps to you!!!! :) She'll also from a
sitting position, stand up and also take about 3 steps to you. With this new
development, I do believe this little gal may just walk for us...Please keep
Natalia in your prayers for this milestone. Walking would be a wonderful added
blessing to this sweet child's life...and mine too!
Thanks for all your continued prayers for our family, Blessings, ThereseAnn
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Full Trisomy 13 - Only having a few
ultrasounds and opting not to have the AFP test prenatally, we prepared for the
birth of our forth child. We were quite shocked and surprised at birth when she
arrived with a cleft lip/palate and extra digits. We immediately pushed for
added intervention accepting what was before us, declining several suggestions
to sign a DNR. We were going to do all we could for her just as we would for any
of our other typical children if they were stricken with a severe illness. We
began tackling each issue at a time, we forged through the first year. One of
the toughest things in those early days was dealing with those professionals who
believed all they read on trisomy 13, an “incompatible with life” diagnosis.
Most Professionals had never had a trisomy 13 child within their practice, and
a few had come across a trisomy within their residency training. I can't even
recall how many times I was told she would probably not make it past the first
week, month, six months and year. I remember often shaking my head, stating:
“She is alive and she will be treated, as any typical child would be for each
specific medical issue.” I felt like once we passed the year point, we were
looked at differently. She was now considered a survivor. I feel very fortunate
that we have Physician's in our medical group that allowed us to have several
surgeries early on that helped with her survival.
The most important early
intervention surgery was the complete malrotation repair and g-tube insertion
performed at 6 weeks. Without that life saving procedure, my child would not be
with us today. She is a delightful child, a unique child of God. A true
blessing in our lives.
 We
had a wonderful Pediatrician the first year of life who was an excellent
support with all the needed specialist referrals. This Pediatrician went out
of her way to offer personal and medical support. I will be forever greatful to
her for her professionalism and help in those early days.
One important point I would like to share (especially if any professionals are
reading this) my child unnecessarily suffered during the first year and a half
with severe reflux and GI motility problems. I believe the GI Doc initially
tried, but eventually he also bought into the idea that this is just the way
these kids are. So for a year we dealt with severe Esophagitis, Duodenitis &
Colitis and many motility and mucus issues. Trying a few different meds but
nothing seemed to work to help with the pain. I along with many other trisomy
parents are told, these kids are just this way, they cry! I can absolutely say
in our case, my child suffered NOT because of the trisomy 13. No, she suffered
because of reflux and motility issues that were eventually managed in ONE week
after a GI switch, and change in formula and medicines. There was a 200% change
in her demeanor, I’ll say it again in ONE week! I am a firm believer in
getting second opinions if medical issues are not getting resolved in a
reasonable amount of time. A second opinion never hurts, and is allowed with
most insurance and state programs. Over the years we’ve had to switch three
time and in all cases, the medical issue in question was resolved in a timely
manner.
In Natalia’s first week of life I was approached by a women who offered a “word
of knowledge”. Believing we are all given gifts of the Holy Spirit, I listened
with discernment. The words were very similar to this poem, but with the added
phrase, “she’ll never know sin”, I remember walking away disappointed that with
never knowing sin, my child would likely die early or be so severely brain
damaged it would be unbearable. The shock of the first week and dealing with
the diagnosis – this was my new reality. Still adjusting and accepting what was
before me, I was not too excited about this word of knowledge, actually was
disappointed. In the next month this same woman, sent this written recap of her
word of knowledge. This was long before our prayer site, and this support site.
Its interesting to see how this journey with our sweet Natalia seems to have
been laid out, pre ordained, by our Heavenly Father. Just as in Psalm 139:13-16
"For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made; your works are
wonderful, I know that full well. My frame was not hidden from you when I
was made in the secret place. When I was woven together in the depths of the
earth, your eyes saw my unformed body. All the days ordained for me were
written in your book before one of them came to be."
 Natalia's Prayer
This child is a child of God,
and born a full soul,
completely formed...
This child is guarded by
a Guardian Angel
who sees God
and intercedes directly
for the newborn life...
This child has come to sing
God's praises in ways given only to her.
You were chosen to be her family
for the gifts you bring to her.
May your family receive rich blessings
and many healings because of her.
Amen.
Now that Natalia is 6 years I can reflect back as see that our family has had
many healings. Conversion to faith, cancer healings and a medically unexplained
healing of the heart. I believe each life is unique and serves a great purpose
in Gods master plan. With faith, hope and love we continue living each day,
embracing every precious moment God has given us. Loving each other as we
continue on our journey home.
2-13-05 Update
Natalia is doing well. She continues to "sing" humm, ma-ma or ba-ba to some
of her favorite tunes...
I awoke several weeks ago to Natalia "Ahhh - ing" the Barney I love you
song. In fact, what was extra cute about this little performance was she
Ahhaahh the tune of I love you, You love me,(then added) ma-ma-ma-ma, and
then back to the ahhahhh and repeated it again..It was so cute! Of course, I
was thrilled that she put the tune, and the ma-ma together....What a smartie!
Natalia is not really crawling yet...She'll "crawl" or move a few feet just
to get a toy which she can see visually...We should be receiving distance
glasses soon, It will be interesting to see if they make a difference on her
traveling floor time. Although not crawling, she does scoot-backwards...I've
got to get this on video and post it on the web site...Very unique and
clever. :)
We had another ABR (Threshold hearing test) Natalia hears normally in her
right ear...Praise God! Overall her health has been very good lately. She is
still G-tube fed. We continue to introduce food, which she quickly moves out
of her mouth...maybe some day! She is still walking in her walker and making
good progress at school. I've noticed her very aware of her surroundings
lately. She is very aware if I come or go and shows the usually 3-4 year old
separation anxiety initially and calming after several minutes. In
conversations she acts appropriately to questions with an expression or
shake of the head no...I am impressed with her desire to try. She wants to
understand and I see her trying to communicate in her way...This is very
encouraging. We are presently developing a media center for her in the den,
where she will have her own, eye level TV, DVD, VHS, and computer for her
developmental progress...We are very excited as to where the next few months
will take us.
We did have a little slip in the rain about a month ago which sent us to the
emergency room and she received 3 stitches on the back of her head. All is
healed and well now.
At 4 1/2 Natalia was 42 in. and weighs 34 lbs. on her last Doctors visit.
She is tall as these kids go--So we'll see where she ends up...
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Here
Natalia is one week old. You can see her cleft lip, her frontal lobe
fused early, low set ears and extra digit (polydactyly). Surprising us
at birth with the trisomy 13 diagnosis, it is amazing the amount of love
we felt for this sweet child from the moment she was placed in our arms.
She calmed to our touch, responded to our voice and knew she was safe in
our arms.
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)
Translation