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Living with Trisomy 13 - Patau's Syndrome

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Colton Denton

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Born: March 27, 2005 

  Colorado Springs, Colorado (CO) - Full Trisomy 13

May 20,06
Colton is doing soooo good, we can hardly believe it. He is growing, gaining  weight and finally getting some hair!  We have been so blessed to have several months with-OUT being in the hospital! We have also been blessed to have wonderful home nursing for several months which has helped Colton be able to grow strong.

He still has the G-tube but finally got a swallow study done and it's results were great.  He can start eating by mouth, some baby food and cereal. He's 15 months old,  so had his FIRST birthday in March - what a day to celebrate! And we celebrated today after mommy gave him his first meal of banana's! It was so much fun! He will keep his G-tube, one step at a time. He is still on a vent, but has taken to it nicely and doesn't seem to mind it at all.

 We pack him and his machines up, and away we go for outings!  He's forming his own opinions (no doubt about it!) and definitely has a mind of his own! He gets physical therapy which has helped immensely and speech therapy too! His daddy doesn't come see him anymore, but that's OK cause his Mommy gives him extra lovin!  His nurses are full of love and everyone that meets him falls in love! So he has a lot of good positive energy around him!


Colton and his Aunt Jennifer - Jan. 06
 

Update: Feb. 2006
Colton has been doing GREAT for 3 months now. He has not been in the hospital lately and has had great nursing care. His Trache healed nicely and he recently got his new "Mickey" in his belly. He is on a higher calorie formula so is getting plump. We're not sure what his eye sight is like yet, but he is looking at his mobile and actually making deliberate movements and trying to grab the toys! How wonderful! He has a whole mouth full of teeth and cutting molars now. Physical therapy just started and soon speech will also followed by swallow studies to see if he could eat. But for now he is healthy and happy and anyone who meets him just falls in love! You can't help it - he has such a sweet little soul! He was able to sit on Santa's lap at Christmas and we can take him for walks in the stroller that holds all his machines too! Prayers do work - he is doing great!


Mommy Ashley and Baby Colton, first day home after getting his Trache! August 2005 4 months old! YIPPEE!
Notice the surfer shirt and blue jean shorts he sports!
 

 
 

Click here for Oct 2005 article about Colton & his family.

UPDATE!  11-2-05
Colton had his G-tube and neesen surgery yesterday morning (11/2) and is doing great. Dr.'s are pleased, and he looks good! So - so far so good!  That darn NJ tube is finally out of his nose and no tape on his handsome little face! I know life will be much better for him now. Due to come home early next week! We can't wait!

I must say, we are so pleased with our NEW hospital and the NEW Doctors. Colton has been in and out of another hospital since he was born, under the care of the Doctors there. We got the feeling that we just weren't important to them after awhile, so took things into our own hands and changed things ourselves. What a difference to have Doctors that don't look down on a handicapped child - to have Doctors be progressive and ready to get things done!  Please encourage others NOT to put up with lasidasical Doctors, they are humans just like us and CAN BE replaced! Our hospitals are in Orlando Florida, and we simply went from one side of town to the other, what a difference.

The new hospital is Arnold Palmer Childrens Hospital.  They cater to little ones and don't bat an eye about disabilites.Our new Doctors, in orlando, who are associate with AP are:

Dr. Livingston - Pulmonologist        407-835-9567
Dr. Nykanen - Cardiologist              407-649-6907
Dr. Plumley - Pediatric Surgeon      407-650-7280

NeMours medical center is next door to AP Hospital and some of these Doctors are associated there too.  Very good place. All 3 didn't bat an eye about T13  - they all treated him as any other child and said if it needs fixed, we'll fix it! We are not planning on heart surgery anytime soon, Dr. Nykanen will keep an eye on it and when it needs done - we'll do it. Could be 6 months, could be 6 years. So, we'll take things one day at a time. These Doctors were all very pleasant, took time to talk and took action.

Thank you for your prayers!
lballard222@msn.com and Baby Colton  !!!!!

Update 5-12-05
My name is Ashley Harrelson, I am 28, his father is Chris Denton, 34. Our first child. Colton was born Easter morning, March 27, 2005 (1st one at the hospital!) in Deland, FL., by C-section. He was 8.2 lbs. It is supposed to be the happiest day of your life, & it was, but while I was in the recovery room, the doctor (who we will NEVER see again) came in and basically said, Well your baby has so many problems, too many to list. He's not going to make it and is going to die. Thanks have a nice day. He had no compassion what so ever! It was horrible! A team from Orlando came up with in a matter of hours and transported him down there. I couldn't go because I had the C-section, but they did let me go early the next afternoon to get to him. Anyhow once we got down there, they ran all the tests, told us he has t-13 Patau syndrome. He has the translocation between the 13 & 14 chromosome. The doctors were pushing us to take him off the machines and take him home to have "quality time" with him since he would not make it. But luckily we refused. His heart has a double outlet right ventricle and there is a hole in the wall that separates the blue and red blood. All of this can be fixed, of course the doctors first advised against it. Well his heart surgery is scheduled for June 22 in Tampa! When we finally decided to take him off the ventilator (talk about scary!!) We brought him home the next day. I think we were there for like 12 days.

Today he had a check up and weighs 10.5 lbs! The boy does not miss a meal! He is still on a feeding tube but we are going to work on getting him on a bottle. They said he would never suck, and you should see him with a pacifier! All of his insides work, he passed his hearing test in the hospital. Colton is not on any machines nor is he on any medications. He is doing Great!! Thanks to all the prayers!!!! Keep them coming! We have had some great support and info from another t-13 family we found On-line, who just so happens to live right down the road from us!! Talk about a blessing!

 
 

 

 

Grandmother Barbara - lballard222@msn.com  Mom  Ashely - smushley76@hotmail.com submitted: 5-12-05

 

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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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