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LivingWithTrisomy13.org

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Living with Trisomy 13 - Patau's Syndrome

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Kaitlyn Garcia

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Born: June 7, 2004 

 


Kaitlyn (3), Sofia (8), Taylor (13), Josiah (9) and Natalia (7)
We were celebrating Taylor being in town...
Soon we'll add a slideshow of our day.

Murrieta, California (CA) -  Full Trisomy 13

Kaitlyn is a very happy baby, she smiles most of the time (something the Dr's said she would never do!). She weighed at birth 4 lbs 9 oz, she now weighs almost 20 lbs. For the most part Kaitlyn is very healthy. She does have seizures, and takes two different medications to keep them under control. She also has Chronic UTI's. She does have reflux of both Kidneys. Hopefully this is correct itself over time, but if it does not she will have to have corrective surgery. She is blind, and hearing impaired. She will have cleft palate surgery in July, and tubes put in her ears. We are hopeful that she will be fitted with hearing aids that will increase her hearing.

Kaitlyn receives physical therapy twice a week. She is starting to hold her head up with more control. We have been told that with lots of work, Kaitlyn should be able to walk.

Kaitlyn has always been able to bottle feed. She is still on formula (Nutramigen), and I do give her some foods by spoon. With the cleft palate (it is very small, in the soft palate), it frustrates her when it gets impacted with food, it makes her sneeze.

Kaitlyn loves to sleep, she probably sleeps 12 hours + per day. She does sleep through the night, she usually goes down about 6:00 pm, wakes up a couple of times to eat, and sleeps until about 8:00 am. She still sleeps with her dad and I, so that is probably why.

Kaitlyn is such a joy. She has taught us so much. The main thing that I have learned from her is to never take life for granted. Everyday has been a challenge, but worth every moment of it.

If you would like to share stories, or information please feel free to email me at: caloaks315@aol.com

I will forward some more recent pictures soon.

Kim

 

 

 submitted: 4-20-06

 

Have a child living with Trisomy 13?  We would love to add your child to our Album.
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Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA  92649

info@LivingWithTrisomy13.org

 

 

Text and graphics © LivingWithTrisomy13.org 2005-2007 All information found on this site was submitted to us directly by the families and used on this site with their permission.
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 

Looking for ALL families who’ve had a trisomy child of any number. Whether you terminated, miscarriage, had a stillbirth, live birth - living or deceased. Including adoptive and Foster parents. Please fill out the TRIS survey  to help update the medical literature and to improve the quality and availability of medical care. Tracking Rare Incidence Syndromes (TRIS)  Click here to add your information

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