Update... 1-6-10

In 2010 we are praying for a miracle... We are praying Natalia will talk.
With God all things are possible... We Believe in the Healing Power of Prayer
Please join us daily as we pray for this miracle... Believe with us....

We’ll be keeping you updated on her progress off this new blog
Embrace Life - One moment at a time
http://embracelifeonemomentatatime.blogspot.com/
 

Update on Natalia Jan 2009
Fun with her brother, Jacob... Yah, Yah, Yah....
A group of quick video clips of the PROCESS - Try and try again...
Most kids learn quickly, Trisomy kids need to be encouraged over and over again. But they do progress and move forward!

Natalia continues to be the JOY in our day. Her spirit of pure love is contagious. We are so proud of all her accomplishments as we are of all our kids and their accomplishments. Everyday brings something new. We are so blessed to care for this very special soul.
If you’d like to help families like Natalia enjoy their days, please join with me in supporting Michael Hennessey an amazing man who helps raise funds for our Trisomy Families .

If you are inspired to help Trisomy Families please donate any amount to
Ironman For Kids
Purchasing special needs bikes for some incredible kids.

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Saturday Dec. 7th 2008, Natalia was having a ball walking!!!!
A group of quick video clips of the PROCESS - Try and try again...
Most kids learn quickly, Trisomy kids need to be encouraged over and over again. But they do progress and move forward!

Jan 2009 - Livingwithtrisomy13

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December 9, 2008
Merry Christmas and Christmas & Holiday Blessings.

We had a very fun weekend. Natalia was constantly pulling herself up and turning around as we walked with her, by the end of the day, she was going on her own. She was on a roll. We wore her out...

My apologies on the not so professional videos...http://www.onetruemedia.com/otm_site/view_shared?p=79240a6ff8c660d1d2eeff but this is the reality of life with Natalia.

You never know when you'll capture that moment on video. Sometimes its when the hair is not done, nor make-up on, and the house is a clutter... but what the heck.. My kid is walking... something an Occupational Therapist once said she'd never do... but you can see, she is walking!!! Thanks for all your continued prayers... Maybe by next year she'll be skipping? Eh? We can only hope for more small miracles...
Embracing Life ~ One moment at a Time.
ThereseAnn

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Update 10-9-07
When Natalia was a baby, I had a dream... I just wanted to be able to walk with my daughter hand in hand.  Well here we are 7 years later and that dream has come true.  A big thank you to those of you who have helped us pray over the years, my little girl is now able to walk hand in hand. We are still working on distance, but for now, I’m a very proud Mom.

Natalia has been doing great, happy and active.  This last week, we found out Natalia has a spinal infection and a tethered spinal cord.  We are asking for your prayers once again.  She’ll be on IV antibiotics for several weeks.  Please pray all goes well with the treatment and that she continues to progress. I’m starting to gather some quick digital videos from my camera.  Often our families hear that the photos on this site are just photos, Well, with the amazing access of the internet, you can now see, moments into our families trisomy world.  These Trisomy 13 children are delightful.  They have a loving demeanor, and have joyful spirits...Hope you enjoy viewing a bit of our very special child.
See the slideshow link to the top right of the page.

Thank you for joining us in prayer for Natalia and all our trisomy children and families.  
Blessings,
ThereseAnn

Often I hear: "God only sends these children to special people."  My belief is: "We become special people because of these children.  God with his infinite mercy, gives special graces and blessings to those who embrace these - Purest of  Souls."

Natalia has Full Trisomy 13. She's G-tube fed. Happy, Presently in good Health, hums a few of her favorite tunes, one being, "If you're happy and you know it, clap your hands." She walks with a reverse K-walker at school. Rides a special adaptive trike and is now in the second grade, in a special day class. She has a spirit of pure JOY. A bit of extra work, but worth the many blessings that she brings to our family. ThereseAnn, Southern California

Video of Natalia laughing & teeter totterr

Bless Our Baby

Bless the sun and birds that fly,
That our eyes will never cry.
Bless the rain that comes in the fall,
That our child will be able to crawl.

Bless the blossoms that bloom in spring,
That our child will be able to sing.
Bless the stories that I may tell,
That our child will hear them well.

Bless the wasps and honey bees,
That our child will be able to see.
Bless the colored leaves that fall,
That our child will grow nice and tall.

May God always bless our child dear,
That our child and us will always be near.

Copyright ©2008 ThereseAnn Siegle

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.

 
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...