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.

Many Blessings,
ThereseAnn
 

Blessings to you all,
Thank you for sharing in our precious Natalia,
ThereseAnn  ....Click here to read more>